Saturday, December 19, 2009

Holding pattern again

Well I seem to have platued a bit in my recovery. I haven't been feeling like I've improved any over the past week or so. I don't feel worse, but had been feeling "good progression" for a few weeks there. I have noticed that I have also been feeling the winter blues somewhat. Not in my attitude, but rather in that way that all of us MS'ers know; the cold somewhat locks you up. I've been stiff as a board in the mornings and have been doing a lot of shivering. When I get cold, it's not good. I start shaking like a dog shitting a razorblade and can't stop until I get REALLY warmed up. So the winter is always hard on me as I get stiffened up.

So nothing bad to report, but nothing good either. Me and Randi (fellow stentoneer) went to get MRI-SWI's last week up in Michigan and that was cool, but we didn't get to get imaged in a 3T machine like he wanted to do since we couldn't find the exact model of stents to clear us for stronger imaging. Probably would have been safe, but didn't want to find out the hard way be heating up my stents to about 150 degrees! I have been feeling like some spasticity is creeping back into my left leg, especially around the knee and calf areas. I'm not limping like I was before all of this, but it's starting to feel tight. Now that's not a new symptom, it's not worse than it was (it's still way better than it was) so I'm not panicking or anything like that. It's just that I don't feel as rock solid as I had been. Hopefully that's one of two things; the cold, or the LDN as I've read that it can temporarily crank up spasticity and I've increased to the max. dosage of that stuff here in the last few weeks. Maybe I have to scale back to 3 mg vs. 4.5 mg. That's the way you do it, you scale up to 4.5 mg every night, and peel back to 3 mg if you are having issues.

So I'll give it another week at the 4.5 mg and if it's still there, I'll pull back to 3 mg. But if that doesn't do it, then I don't know what I'm going to do! I was getting quite used to feeling like each week was a little bit better than the previous week. I go through this every winter it seems, so I don't think I can completely discount the effect that the constant cold has on me. I absolutely hate the cold worse than the heat. I remember when I first got MS I was so heat affected that I would stand outside in the snow with a T-shirt on to cool off and get my eyesight to 'come back'. Not anymore! So I'll post again in a week or so and let you all know the rub. Even though this isn't as upbeat of a post as the last few, I can still say with out quesion that I'm firmly on the good side of my new litmus test for this procedure which is this: In the last 8 years I could never say "these last six months were better than the previous six". I can now and still would have a long way to go down to NOT be able to say that. So let's just hope my histrionic ass can get through the winter!

Saturday, December 5, 2009

Another week in the books feeling pretty good

I noticed it had been a week and wanted to update to let everyone following know that it's been another good week. I haven't had any massive improvements or anything, but I've just been plugging along, working out every other day on the Bowflex. It's still just to keep stretched out more than anything as my shoulder, although somewhat better, will still not take any weight until the nerve heals. It's weird to work out like that. You don't keep adding weight as you get more in shape. My shoulder will take what it can take and I can't build any strength in it until my trapezius muscle reappears. But I do it to keep my range of motion pain free.

My wife wanted me to talk about how I've been feeling in a different light. You see although I am doing better than I was, and it continues, she's like "but you still come home and bitch about how you feel, you wouldn't know that by reading your blog". She's right. But she needs to realize what I try to keep conveying. I can still get myself worked up and "MS'y". However, it's so much better and that's the baseline I compare it to; six months ago. Back then I was at a point where I was hardly capable of two trips up the stairs a day. Now I go where I want to, when I want to, and then bitch about it! But those with MS know what I'm talking about. When you get steroids for three days, you can do SSSOOOOO much more, but you still have your shit to deal with. This is like that 24/7 now and I think it's great. So she's made me realize that while objectively I am doing much better (and she could give you some personal insight into that thank you very much :-)), I still do some of what I talk about back in my "A" word post. I still bitch about ability when compared to how it was when I was normal. I just haven't figured out how to work that yet, but I will.

So I had another really good week at work where putting in 45 hours was absolutely no problem and I DIDN'T GET DIZZY. That is so freakin' huge you guys just don't even understand. It takes your life over. You don't want to go anywhere where you might fall into something, you don't want to walk anywhere where you don't have something to grab onto. Imagine being in the middle of a field and being scared to move. You just don't feel stable. And while I had some dizziness, like everyone, occasionally in my "normal" life, you can't really draw a frame of reference for years of constant dizziness. It's not something you get used to and I don't know why. You just don't adapt and settle into it. It truly is a despicable symptom. One of the evil ones if you will.

So my energy is still up and my pain is down. Most of my stuff is better as I can do almost everything 'longer' and need less recovery time. Hell, before you know it, I'll be normal! Wouldn't that be nice. But I must admit to thinking there's probably a limit to my recovery, but I'm going to keep trying no matter what. I have to keep exercising and working and living. It's awesome to even think of life in that framework. I wasn't ready to give up on life, but I was at the point where I was starting to forget what day it was because it really didn't matter. Each day was just trying to get by and get to bedtime without too much pain and discomfort. I think some of you know where I'm coming from there. You just don't care anymore because you feel like if you exert any energy at all, bad things will start happening. Well now I think about what I had to do today without dread. I have a Christmas party to go to tonight and I'm actually looking forward to it instead of thinking "man I better schedule a nap in there so I can make it", and even then hoping it would actually work; because sometimes it doesn't matter what you do, you're just going to not have enough in the tank. I get to hang out with my pretty wife and have her look at me as we socially engage and think about going home and maybe even getting frisky!

I know that's too much information and probably is even in this setting. But there are things that are huge in people's lives and that was one of mine. I think it is for all men with MS. We want to be able to go on a date, and being that we're all dogs, dates are just foreplay where you use your wallet anyway! I know that's off the cuff, but guys, really?, don't you think about it somewhat that way? Maybe I'm just a perv. but I'll tell you, when that starts getting messed with, it rocks your self esteem hard. I'm in my 40's and it's still all I think about! I love that though. I'd rather think about that than MS. But I digress. Those of you that know me well know that I can say anything at about anytime and it's also true on here. It's one of my biggies and I promised everyone I was going to talk not about the science of all this, but how it affects my life, and that's how it's been affecting it. If it takes up a big amount of my time dwelling on it, then it's worth posting how this procedure affects it.

So there! I am needing to report about an adverse event that happened during a procedure. I know all the details, but what it came down to is this. Dr. Dake is using smaller stents now because of what happened to a few of our shoulders. Well one guy had a stent that was already placed earlier in the procedure come loose. It did it when one was put below it and it migrated all the way to his heart. He's doing well now, but they did have to open him up to get it out. That really sucks, but we are, after all, learning as we go. So since I have to be talk about the good and the bad, I have to report that. Now how does that affect MY opinion of all this. One answer, it doesn't. I'd have done it anyway knowing that, but that's just me. Someone else reading this may say "whoa, I need to wait until they get this all worked out." I couldn't wait. I was looking at home modification and a power chair. So I was glad I did it not even knowing what the risks were, but I can tell you with all confidence that I'd still do it again. I told one of my friends I talk to that I don't even know where my cane is. I still haven't found the damn thing and hope I just left it somewhere if you want to know the truth.

I am going to be going up to Detroit in about a week and a half as I alluded to before. Me and the person who went immediately after me at Stanford are going to get the MRI-SWI and see how much iron deposition we are looking at. If that's the culprit, then we'll see a snapshot now, and then one in six months to see if my drinking straw like jugulars open things up enough to allow some of the iron deposition to reduce. We really don't know if that will do it or not. Will it take some sort of agent/chelation to get it out, or will it just be up there and it just is what it is now? That's what we aim to find out. So I'm fired up to be going and doing that. Now that my stenosis is fixed, I'll do anything else to help us discover what part of the puzzle this is. Is it "IT"? We don't know yet, but we won't find out if we don't keep forging ahead. At some point I also want to get the doppler put on me by someone who knows the protocol as there is still a disconnect between us and Europe in the use of that technology and it really has to do with training as we have easily as sophisticated devices in the USA as anywhere in the world. Well I'm off to watch the University of Cincinnati win the Big East title by beating up on Pittsburgh (I hope!). Wish me luck in Michigan and Merry Christmas everyone, I may not post on here again until the new year. Shit's gettin' ready to get busy!

Friday, November 27, 2009

And the hits just keep on coming

I guess it's been about a week since my last post. I was scared as hell to actually post that one as you could surmise from my reluctance to do so. I'm not superstitious, but as I've said before, let's cover all the 'hexing' things be they praying or voodoo since doing this in the first place was somewhat of a leap of faith. So I've had another really, really good week. The only bad thing I had happen was that I had one day where I went to work on a day I knew would be high stress with literally an hour and a half of sleep the night before. Preceding this treatment, that would have screwed me up for days. After going to bed that night, I felt absolutely awesome the next day. Recovery time from overdoing it that fast? Not before my surgery.

Since I am now talking about things I would normally have been reluctant to talk about that have changed for the better, I want to talk about one of my two biggies. Dizziness. To a non MS'er who hasn't experienced this, it may sound pretty benign. I remember spinning in circles as a kid just to GET dizzy! And as an adult playing in my friend's annual "beer olympics" (I won't go into details) doing that chug a beer and put your forehead on a ball bat, spin around three times and then run! We actually got many laughs from that event watching people wipe out the woodpile, fall into the pool and generally look like they'd just been shot. But to be almost 24/7 dizzy for the last 3 or 4 years? The word funny isn't even on the map. I used to eat with my eyes closed because I was always just eating to not waste away as I was hardly ever hungry anytime but in the morning before things got stirred up. I still have moments where I run into the wall with one of my shoulders by turning too early (once again, fellow MS'ers know just what I'm talking about), but now I just tell the wall to piss off and move on. It used to be an instant trigger for dizziness. So for a few weeks now, I haven't been dizzy, not even really on the day I worked on an hour and a half of sleep.

I actually even uttered on the forum I frequent ( that if this keeps up, I can almost see myself running again. I can't believe I even uttered those words. After 8 years of MS, that may just be wishful thinking because I know there's damage in me, not just inflammation since I'm progressive, but just to even mention it would decidedly not have happened before. I really don't know if this has stopped my MS or not, and won't for some time. However, I do feel it has, to this point, helped me gain back some lost function. And no it's not just the up and down of RRMS. I'm Secondary progressive. I haven't had a Remittance in symptoms for a loooonnng time.

Another really nice thing is that I don't feel so fragile anymore. I used to feel like I was made of glass. Like to hop down a couple of steps would have just made my knees shatter into a million pieces. I'm feeling more solid, and consequently feel much more stable and balanced and able to stand on both feet with my weight distributed evenly between the two. That feels really "good and strong".

So my next stop is to go to Michigan and get my head examined using MRI-SWI that shows iron build up/deposition. They are doing a study up there (but not taking anyone else at the moment) and I called and offered my head up for exam as someone who has had the procedure done. They wanted to see this as they are just taking "before" pictures right now, and this is a chance to see me freshly after the procedure, and then look at me six months from now to see if the new, good drainage will actually decrease the iron deposition. I sure hope it does as you can't necessarily chelate iron out of your body as it's in every one of your red blood cells. I don't know what the outcome of that may be, but at least we would know if it's getting better or worse over time in terms of excess iron in the brain. It will just provide another piece of, hopefully, valuable data. I decided a while ago that I am a lab rat for sure since I already have been a teaching moment in terms of what can potentially go wrong when you ding the spinal accessory nerve and also what to do if you have what appears to be two jugulars instead of "spider line collateral" veins.

So Happy Thanksgiving everyone. I know what I'm thankful for this year. Being able to engage with my family and friends somewhat boisterously and not worry about getting dizzy for one thing. I mean even laughing and 'getting loud' was all it took to get me dizzy before. But having maybe stopped my progression is another thing to be awesomely thankful for.

Monday, November 16, 2009

All about positive changes....because there aren't any negative ones

OK. So reluctanct to talk about anything positive Lew will finally talk about (dare I do it?) some positive changes that I simply can't ignore. It's that whole "Awakenings" and "Flowers for Algernon" thing and also because I had such a major letdown with the Tovaxin vaccine. That was my fault, but it still sucked. Well as you guys know I can be windier than a bag of assholes, so I am just going to briefly describe some of the things that are going good.

Even though my shoulder is all screwed up AND I'm out of shape because I haven't lifted in a loooong time, I'm able to bench more, curl more and tricep curl more. I'm sure it would be there in military press and pull downs also, but my shoulder is still impeding that. But the most awesome part is in the area of coordination (we're still on the Bowflex here!). I have the leg extension attachment. The leg extensions don't require much coordination. You just sit down and put your legs behind the bar and straighten them out. It's the hamstring curls. Before the surgery I was not even doing that one because of the dexterity involved in laying flat on a slim surface, putting my legs straight out behind me, and getting all situated. I simply could not do it. I have been doing it for about a month now, and I haven't even had to lift my left leg up with my hand! That is major. I could barely lift my left leg with my own muscles past where it needed to be to go up stairs (which have also gotten easier)

Big deal #2. The airports. On my way out to my first procedure I had my Mom and she pushed me everywhere. I could still walk short distances, but no way could I even make it to the gate area of the tiny Dayton airport by myself. I probably could have if I sat and rested halfway. The second time, I absolutely needed my cane and had a pronounced limp. There were times I didn't use it, but on the longer jaunts I did, and I was always limping. The third time I didn't even take my cane. What can I say about that? I mean I didn't limp or anything. I was completely tuckered out after going to my gate in the Houston airport, but I never limped.

Big deal #3. I'm not limping at all anymore. My knee has quit screaming at me, which means my spasticity is going down. This is huge. Now I still can't run a marathon (Ha!), but on my walk Saturday I "jogged" very slowly for about the last 100 yards (It was in my boots to; which I'm sure looked VERY cool). I just can't deny that things are changing. I've never, ever been superstitious, but I don't want to jinx myself! Not with this. No chances, but it's been a while now that these things have been happening. I'm sure my host in California, Kelly, can attest to the difference in me from the first to the last trip. Man my buddy Doug married a cool chick. I love you Kelly!

I still definitely have MS symptoms. Heat still affects me adversely. I still get dizzy and my vision still gets foggy, but I recover so much faster it's not even funny. I don't know if this is the answer or not; especially since I've been progressive for a while and there is pre-existing damage. But it's a large part of it. Of that I have no doubt now. When I'm at rest, and don't have to pee :-), I almost feel normal. This is all so cool I don't even know where to begin. I've had this shit so long now that I don't even dream that I'm healthy anymore. This is going to be a short update with hopefully many more to come. I'm hitting the PT as hard as my shoulder will let me, and we just joined a gym so I could try out all the different equipment before I choose a piece to buy for the home. I was dead set on an elliptical, but thought I'd better give it a shot to see if I could handle it. We're going tomorrow and instead of being intimidated, I'm elated! I haven't felt this good in a while. I worked out tonight after a full day of work. Looking back just a few short months, that would have never happened; it was only on the weekends, and even then I absolutely dreaded it.

Until next time with hopefully more to tell, but I've been working on the "A" word, so even if I'm stuck right here I'll be ok. But somehow I think better things are to come. That, in and of itself, is a huge step for me. To look to the future, just that, to think to the future.

Saturday, November 7, 2009

The "A" word

I've come to a profound conclusion in the last few days. Even though I feel like I deal with this pretty well most of the time, and always outwardly so, I have done an awful job of acceptance. This is a tough one. Sure I know I need to 'accept' I have MS. I thought I already had. But it was something different I now believe. I think all I've done is gone through the process of acknowledgement. Just enough to keep me out of destructive denial. I think denial can be constructive and destructive, and acknowledging it keeps me out of destructive denial. So what does acceptance really mean to someone whose life has been so drastically altered? I suppose there is a slight bit of 'giving in' that needs to be done, and that's not something I've ever been prepared to do. I've never given an inch to this disease, and therein lies the problem. Allow me to explain. Paragraph break coming Jamie (Ha! you know I love you brother!)

With every techique, every pill, every coping mechanism comes a big price with MS. When someone healthy gets sick, it's not even a question of taking your pills, or staying away from your ciggies, or something like that. And it's because it will pass. So the dynamic I've created has always left me very resistant to do anything since with MS it could very well mean it's for the rest of your life. Whatever you have to do to shit properly, you have to do for the rest of your life. Whatever you have to do to sleep properly, you have to do for the rest of your life, and so on and so on.... So I've taken the high road and barely take anything to cope with my symptoms for that very reason; because it will be forever. We all know that 99% of drugs work in the short term until you get used to them. Sometimes you build up a tolerance, and sometimes they simply cease working. So I've chosen to do nothing. I mean if I took a laxative every day, it wouldn't be long before they wouldn't work that one time when I REALLY needed one to work. If I start taking Ambien to sleep, eventually I'll build up a tolerance and it won't work anymore. So I've always taken the natural route which has taken me so far. Hey, there really are messed up things in my body and they really don't work properly and all the natural stuff in the world isn't going to make it work properly. And then it spills over into the rest of my symptoms like walking and peeing and things like that. Well I've always been able to just gut it out. If I have to walk a 1/4 mile, I know I'll be absolutely trashed by the end of it. But then do you know what I do? I get all bummed about it and dissappointed and all the other things that happen when you realize you can't do what you set out to do. And since I've never accepted things, it's always like it's the first time I couldn't do it and the dissappointment is also like the first time. So I'm coming from a place where I still percieve myself as being able to do anything, and then when it's painfully clear that I can't, I feel like I did the first time I couldn't walk somewhere, and this happens daily. Eventually I'm going to drive myself nuts.

So I need to go into things from the perspective that I have these limits. Even if we have stopped the onslaught of progression, I'm still pretty severely hampered by the damage that's already there. Why do I want to set myself up for a fall on a daily basis? Just stubborn I guess. I mean to go through the same level of disappointment every day is starting to wear on me. It's like Groundhog day and I need to finally realize what actually IS happening to me and live within my limits. So coming from a healthy perspective, I'm going to get trashed by the way it turns out every day. But if I accept the fact that I do have limits and DO ALL I CAN WITHIN THAT FRAMEWORK then maybe I can get on with the business of being happy with my life again. I need that, it's just the way I'm put together. I know now that I will never find it just hoping that today will be different from yesterday. I mean, christ, this has been going on for a while, yet I still feel the same way every time I can't walk 2 miles. For God's sake I haven't been able to do that for over 2 years! So accept it already. Did the CCSVI procedure 'get it'? I don't know, but I think it's a huge part of the puzzle that is MS. Maybe there's more, and maybe I will just need to wait longer to start feeling like I don't have limits. BUT I need to accept the fact that there may always be limits, even if the procedure did quit the advancement. Like when you get injured. I think that's maybe part of it too. I mean it hasn't taken away my entire ability to walk. So I go as far as I can, and usually a little farther. It's just that when the pain, weakness and unsteadiness happen, my brain needs to quit acting like it's a surprise; it decidedly is not.

So the other day I'm at a huge factory in Dayton. The walk from the handicap spot to where I need to go is literally about 1/4 mile away just to get in the door. And then after I get to it, we are talking a 2.5 million square foot plant. I will need to probably walk another 1/4 mile to see what I have to see, and then of course retrace it all to get back. Why this sucks is the whole time all I'm thinking of is "lord I hope I don't have to pee" because #1 I'd never make it and #2 the BR is probably way off the beaten path anyway in the factory and that's MORE walking. So how does acceptance play into this? Well if I accepted my limitations I'd use the devices and pills that make that type of thing easier. I mean if I had used a texas cath (external) I wouldn't have to worry about that aspect and I could have stayed more engaged in what I was there for. So instead of trusting luck and taking a chance, which leads to much more stress (not to mention me having to pee on a tree on the way out), why don't I just accept where I'm at and prepare accordingly? I mean dehydrating yourself is for sure not the answer, but that's how I've been doing it. But if I use the external cath. then that means I'm giving in. Well maybe to a point, but I need to start setting myself up for success, not possible failure, which is what I've been doing.

This is going to be hard. I mean I guess I always thought once I give in, my 'life' as I know it is over. I won't be able to stay socially engaged and all kinds of stuff. Well that would be true if I never take advantage of an "aid" (be it drug or device). But if I use these tools, then I believe it's going to surprise me. I mean they are there for a reason, right? So that's going to have to be the mindset I have to create. I have to go in knowing that "this is what I can do, if there's more, I need to prepare". That will be more work, but proper pre planning in everything in life always results in a better outcome. And I don't know if can keep living with the constant dissapointment that, in my mind anyway, I should have gotten used to by now. I mean don't we all have to adapt to what hand we're dealt? I haven't been and have still been coming from the place that I am really capable of more than I am. Will this lead to a lower self image? I don't know, but I already do know what NOT accepting it does.

So now I know why I've never been creative. Well partly. I've led a pretty easy life. Things always went my way in the end and things have always been easier for me than most. So even though I wanted to be a blues guitarist (lol), I never had enough blues. Even though I wanted to be a writer, my soul is just not that tortured. So now it is and lo and behold I have cathartic moments almost non stop. So that's why I write this damn blog. I almost feel like I'd explode if I didn't. Maybe that's how Stevie Ray Vaughn felt before he played like he was channeling the Gods. Maybe that's why everyone creative seems to have some 'dark place' that they come from. Then again, maybe I'm all wet and those people are/were just creative! Hell I don't know. All I know is that it's not OK with me to feel like I'm getting blue. I have to stave it off at the pass at every turn. Like I said, it's just how I'm put together. But realizing that I need to accept rather than just acknowledge the fact that I have MS is something I need to go about the business of doing post haste. I have literally been setting myself up for disappointment. No one to blame but me. I mean I've already spoken of how I'm starting to get used to the state I'm in and how that's a good thing as it's not a constant downhill slide. Now I need to go about the business of realizing that maybe my miracle is just making it stop and if I get better, well that would be something.

Wednesday, November 4, 2009

Holding pattern and going back to Cali. part tres

Here we are at basically 4 months since this odyssey all started. Boy does it seem like longer. That is a very good thing as when you are in the throes of progression, time just melts away and you end up looking back and saying "wha' happened?". So I'm still pretty much in a holding pattern as far as my own perception goes. I had some transient leg weakness in the last couple of weeks, but that has abated. I have started exercising and going to physical therapy, so it could be that as much as anything. But I ain't gettin' worse! As I've said many, many times, that's huge, ginormous, stupendous and every other positive adjective you want to throw at it. I'm starting to get used to where I'm at and it's a very, very good feeling to have limits that aren't always in major flux. I know what is going to make me hurt and then the decision about whether to do it is a much more personal choice. When you don't know where you're at, you just are always doing too much, getting too exhausted, pissing your pants, all kinds of shite. It's so nice to have an expected outcome to what you choose to do. It's not only disconcerting when it's the other way, but it's also very deflating to your ego. It's hard to explain, but all you MS'ers out there reading this know exactly what I'm talking about. I never thought in a million years that at the age of 43 I would have to be 'rationing' my effort. But now I can pretty much get done what I want to within reason since I can just spread it out and pace myself. When you don't know where your limits are, you are constantly not getting anything near the amount of stuff you want to get done as you go to exhaustion all the time and have to keep putting things out. Now I'm not talking about raking my entire yards' worth of leaves or things like that. But rather doing things at work, doing housework, that kind of stuff. It's so nice to know what to expect. You know it's about the time where you're going to trip your trigger. You just stop for a bit, have a cold drink and a break, and start again. When you go too far, many times you won't get the opportunity until the next day.

So I'm going back to California for the third time. Check up on round 2 of the procedure. Here's where it gets good. If something has to be done again, I can do it just up I-75! Only four short hours away from here by car is where one of the docs who is getting into this is doing his thing. You can check out the info. at There is a doctor up there who is doing a type of MRI that I may have alluded to before called SWI or susceptibility weighted imaging. Don't know what the hell that mouthful means, but he can actually see the areas where there is increased iron deposition from years of reflux of de-oxygenated blood. On a whim I decided to shoot them an email off the generic email on their site to see if they could do my check ups. Well they called me the same day and I'm going to go up there when I get back and they are going to do the MRI with SWI. That's very intriguing to me as I think this doctor (Dr. Haacke) may be really on to something with the whole iron thing. Now the next question is can we do anything about the damage? Either the already inflicted damage done, or the flip side of if we remove it will things heal? Those are burning questions for me. As I've stated before, being secondary progressive means my disease is no longer an inflammatory process, but rather a degenerative one. So at the age of 43 (your nervous system really slows it's ability to heal after about 30-35 I hear) I'd like to get anything that could potentially damage my brain further the hell out of there. Also I'd like to give it a chance to heal to the best of it's ability, and I don't know if that's possible with all those macrophages in there. I probably got that term wrong, but there are things that do damage and things that clean up the mess, and they are not in there at the same time. I think the bad guys are the macrophages, so here we are.

So going forward, a drive to Michigan for the day is a hell of a lot less daunting than flying to California from Ohio. Plus it potentially opens up the door for people on this side of the Mississippi since Dr. Haacke is teaming up with an interventional radiologist at Wayne State U. I don't know when or if they will be doing the interventions like they are at Stanford, but I do know that they want to get a look at my noggin since I've actually had the procedure done. I'm pretty jazzed about the prospect of furthering Dr. Haacke's understanding of what he's looking at, as well as being able to get a picture now to compare to a picture later and see if things are headed in the right direction. Right now they're only doing the imaging to back up the theory of "everyone with MS has this" I believe and it will maybe get them funding to proceed with a trial and get published results. Well as you guys know, my shoulder took a big hit and I spent literally all day doing computer stuff at work and right now it is just jonesing from typing all day so this will be a short post. I leave on Tuesday of next week and I'm sure I'll update from out there like I usually do. So everyone send good juju that my last round took really well like the first one did and all I go out there for is to get in the tube and talk to the doctor. That would be very cool as I'm going by myself this time. Now that is a big change from 4 months ago when I had to have my mom push me in a chair and use my cane when I had to walk. That's a big change. Like I've always said, it's like kids and growing I think. Others notice more of a difference in me than I do in myself and it's all good. That doesn't suck.

Saturday, October 17, 2009

Waxing Philosophical

Here we are and I haven't updated this thing in a couple of weeks. I'd hoped to be able to write of just constant improvement every week, but alas it seems that my expectations were a little lofty due to the progressive nature of my MS. What it comes down to is that I'm in kind of a holding pattern. I don't feel a lot better or a lot worse; which as I've stated before is a very, very positive thing since I feel if I wouldn't have done this I'd be writing a blog of unabated negative progression and how everything keeps getting worse. That's what you're up against here. You think to yourself "I'll do THIS if it starts up". But then you realize once you're progressive (and really to me during the whole course since it still plods forward despite the drugs) that there are some things you can do with diet and exercise; if you're able to exercise strenuously enough to make a difference. And that's your conundrum. You know what will help, but you aren't physically able to do it. So being in a holding pattern is A-Ok with me right now. There have been some improvements in energy level and things of that nature, but I'm used to them now and that initial improvement "jolt" was noticeable and my hope is that it's just so slow that it's hard to notice right now.

So that brings me to what I thought I'd write about this morning. What this does and how I've dealt with it. Even when you're disease if relapsing and remitting (RR), you still are progressing. In my case it really wasn't noticeable for about 4 or 5 years, but I obviously progressed during that time as my abilities started to go. But there is still a lot you can do, but what you CHOOSE to do becomes the mind fuck. You see there comes a time when you start to have to make decisions about how you are going to use your energy. Before all of this I would go to work, come home and work out and still do whatever the hell I wanted after dinner. And no saying "but you're in your 40's now, that was going to slow down anyway". That is true, but I was one of those guys in their 40's who had literally never been out of fantastic shape since high school. I would still be living like that for quite a while I know for sure. Work on the house, work in the yard, fix something, read, whatever. It was my choice and there were no doors closed; whichever one I chose I just walked through and did. Where I'm at now really is a weird spot. Let's take today for instance. A dear friend of ours daughter is getting married. That's a big event for someone with weak legs, a weak bladder and bad balance. So I need my energy to do that. But I also have to try and take care of myself. Which means taking a walk or doing some other type of exercise that I'm able to do. Well the thing is, I don't have enough in the tank to do both. So a decision has to be made. Take care of yourself, or meet your 'obligations'. In a vacuum, the choice is easy, you must take care of yourself as the #1 priority. But life is not lived in a vacuum. Life is about relationships, and if you don't engage in those relationships, they wither. Not that people just will turn their backs, but rather that your name just starts to not come up due to how many times you've made the choice to use your energy solely to take care of your issues. And why are you taking care of your issues? So that you can live your life! There's the rub; which do you do? It's definitely a balancing act for sure, it's just the state of my life and I'm doing it the best I can. But there's just plenty that I'd choose to do that I'm unable to do because of this. And people understand, but not really because I don't appear outwardly disabled until I get tired and the pain ratchets up. I don't suffer from fatigue, so it's really not just straight up energy, but it's that my legs will just get so wobbly they won't work anymore and I get dysfunctional dizzy. Then I can't make it to the bathroom and that's what I mean about my energy. It's more effort level that can't be achieved.

It's like the tipping point has been reached where taking care of all my bullshit has gone over into the 51% of my waking life arena and taking care of myself takes so much effort that I don't have the effort to give to "live life". That's when it sucks. I can take a lot. A whole lot. It's not like this happened overnight so it definitely doesn't feel like someone who had a major nervous system injury where their ability is gone in an instant. My heart goes out to anyone who deals with that with grace. Those people are who we should all idolize. That shit is hard. But I still can walk, just not very far, I can still hold my water, just not very long, and I can still stay upright with balance, but not after much effort. So it comes down to life has gotten to the point where I can do a little, but my family is still doing a lot. When I try and keep up is when it's just very difficult. I'm to the point now where I really can't. That's why I have flown across the country twice (still have a trip in November) and have three pieces of Nickel in my veins. I just hope this works.

Some of you are probably thinking "well it doesn't sound like it's worked". That's misleading and I've come to understand it better and that understanding has come from my shoulder and what's going on with it. I'm rehabbing that dude and it's not going bad, but all I'm doing right now is keeping it from atrophying; trying to keep the range of motion so when the nerve heals I can get busy strengthening it back up. Here's my take on why this works so well on people who are RR and why it's a long time coming for us progressive folks. When you're RR, it's all inflammatory. So the surgery takes the deoxyginated, iron filled, refluxed blood and takes aways the source of the inflammation. Well since the nerves aren't functioning correctly due to the inflammation, you take the inflammation away and whatever the nerve controlled starts functioning again. Like anything you'd take an anti-inflammatory for, take it away, pain is gone. Same concept here, take it away and it works again. Well for someone who is progressive, the disease isn't inflammatory anymore. That's probably why steroids (massive anti inflammatories) work so well for RR attacks and not so much for progression once you're not RR anymore. So now we've theoretically removed the source of the damage. Only in this case, there's no anti-inflammatory response. And here's what I learned about my shoulder; nerves take about 1" per month to heal. So my shoulder could stay screwed up for about 13 months since that's the measured distance from where my nerve got banged to where the dysfunction is. In my mind anyway, the same thing holds true here. If we indeed turned of the damage, now it's going to take a long time to heal. Think about the distance from a lesion in your brain to whatever is affected. So that is why, for me and all the other progressive patients who've had this done, it's going to take some serious time. So we have to keep moving as much as we can to stave of atrophy and wasting. I'm already down to 155 pounds from a normal of around 170. And my waist is 2 inches bigger! It's like rapidly accelerated aging.

So while this is where all this progression is taking you from healthy to where you're at, you stay busy, you try to keep working and living and doing everything you ever did. For a while you succeed. In my case for a good long while (well 4-5 years anyway) and then when the stay distracted/denial thing just doesn't work because you just can't 'push through it' anymore, it comes down on you like a ton of bricks. That's when you go "Oh shit" and finally realize that the life you'd thought you'd set yourself up for is out of your reach. Maybe the home you live in is not liveable for you anymore, all kinds of things happen all at once. That's the stage I had gotten to when I decided to do this.

So this make seem a little like a negative "I don't think it's working" post. But it's not. I'm just starting to let down some of the walls I've erected to stay sane through all of this. Trying to get to a place of calm acceptance because I believe it's painfully clear I am decidedly not going to go "back to normal" if this truly does turn off the damage. And one of the ways to do that for me is to understand what's going on so I can have a clearer understanding of what to expect so as not to get too let down. There is just some stuff where the nerves are probably dead, or close to it, and may never get back to their full potential. When you pass the age of 35 or so, your brain and nervous system lose alot of what's called plasticity, or ability to heal.

So hear I sit, writing this post instead of going to try to workout and take a walk because I'm going to the wedding tonight. I've made the decision that's what I'm going to use this 24 hours worth of effort for. Mon. - Fri. it's work. That decision is easy. It's the weekends that are hard because that's when you DO WHAT YOU WANT TO DO (read: live life), or try anyway. Sheesh, I've had 3 wedding in the last 4 weekends. It's like when we were about 25 and we were all getting married. Now it's our damn kids! Speaking of kids, I want to talk about the dynamic going on with mine. When I was healthy, I was a pretty aggressive life liver. And I wanted my daughter to "do it right", which meant to me that she was supposed to be like me. So I tried to make sure she was as competitive as I was, as socially engaged as I was, all of it. That was SORT of working. Well now I've just had to loosen my grip. I physically don't have the effort to live her life and mine. So I let go; a lot. And lo and behold, she is absolutely blossoming. She is becoming who SHE is going to be. Not who I want her to be. And it's beautiful. She is so fucking beautiful and talented it's not even funny. Everything I was trying to MAKE her do well she is doing so much better now that it's her that's providing the motivation. Sports, social life, everything. So my advice to everyone who wants a pleasant teenager is this: do everything you can to control everything, and then let go at about the age of 9!! That's obviously off the cuff, but it's worked for us. She is exceeding everything I ever thought she was about and it's because I'm letting her learn her own lessons. We parents of this generation are often times like snow plows for our kids. Our kids need to plow their own snow. I could go off on this for about 10,000 more words, but I won't. It really sunk home that I was doing the right thing when I was with my host family at Stanford. They seem to have gotten that memo out of the gate, and it's an absolute joy to be around their family. They have four kids under the age of 8 and they are all just so unique and you can just tell that THEIR personality is developing on it's own. No parent clones in that family. Just kids becoming who they're going to become and who will more than likely live up to their potential. Isn't that what our job is anyway? Not to knock down all the hurdles they have to cross, but rather to support them if they need help getting over it in their own way?

So I'm done waxing. I'm feeling strangely serene here lately because I think I've accepted the fact that just because I had this procedure doesn't mean I'm going to wake up tomorrow without MS. However, I do think this is the biggest part of the puzzle to MS. It might not be all of it, but I suppose it might. Since I'm 'dialed in' to what's going on with this CCSVI model, I can tell you that it is getting some serious traction. I'm going to put two links of news stories that have come out of SUNY (State University of New York) just in the last week. I think that it's, at least in the world of MS, going to shake the ground.

Until next time

That's the local news story link. There's a press release somewhere of just text, but I can't find it! It comes off sounding much more "professorial", but since I can't find it just trust me that this is getting a foothold, i.e., can't be ignored by the MS community (who is very heavily funded by the drug makers).

Saturday, October 3, 2009

This week's update

So I finally got to the physatrist concerning my shoulder. No surprise that the spinal acc. nerve is pretty badly damaged. Now I know exactly what it is and will just have to wait until my next appointment to see whether or not it's healing. It takes a good while for nerves to heal, they told me 1 inch per month and I'm damaged over about 13 inches of nerve, so this could be a long process. Knowing that, I will now stop talking about it except to update in a few months when they tell me it's healing or it's not. I have a good suspicion it is probably the former because the pain I've felt I believe I've brought on from over use. So we wait now. On to the better part of the update.

These updates have become a bit anti climactic since everything is changing at a snail's pace. You all know my expectations (where they came from I don't know since I know my MS is progressive and everyone who has immediate benefits is relapsing) were very wishful thinking for something quick. Well I think some things are changing for the better. The routine based things are the ones I am telling the most difference in. Walking from my office to the assembly department at work for instance. Or how I do at one of Sarah's soccer games. Those things that I do religiously and kind of 'mark' in my head how I've been doing. One thing MS has really put a crimp in for me is the fact that I am a stander. Before all of this I would even watch TV standing up a good deal of the time. I'd put my beverage on the mantle and stand there and watch TV so I could go do something during breaks. I would also always stand at my daughter's games. I haven't been able to for about two years. Well this morning I stood for both halves. I did sit during the ten minute halftime. But not only did I do it, I did it with very little pain, and no tingling. That was very good and it was also a bit of a surprise. I wanted to stand for a little bit until my legs really started tingling; my signal to sit down. It never started. AND this was the field where the bathroom is probably 3 soccer fields away. I made the trip twice with no limp. I was so taken aback. I mean you just sit there (stand there today!) and wait. You wait for your legs to start up their mess, you wait for your eyes to go foggy, you wait for dizziness and you wait for the spaciness and brain fog. It just hasn't been coming unless I really over do it.

And the walks up to the assembly dept. There have been times where I got all the way back to my office and realized I forgot a piece of data and had to go back up there. There have been times when that has almost brought me to tears of frustration. I mean after all I'm only talking about a little walking. It has gotten way better in terms of how often I can do it during the day and how it doesn't make me so screwed up with all the other stuff. The only thing that I really can't tell any significant improvement in is my bladder. It is still the same as it has always been through this. My balance is still pretty off too, but I think that's coming around. I really want some relief in my bladder, but if my legs keep getting better, the bladder isn't so life altering as I can make so many more trips with out making myself just have to stop. So all in all it's been a great week. I'm just talking MS here since my shoulder now goes into the category of injury. I really don't think I've had a headache. Man that's nice. This second round of surgery, I believe, has really opened things up (literally). I just seem to be on much more solid ground. All you MS'ers understand that innately. Being able to stand with a balanced posture, chest out and also GOOD posture, is very cool. It raises my self image alot; makes you feel like you're not so sick if you will. All of this stuff is really good news. Now with MS also comes the up and down nature of the whole thing. You feel good for a bit, then you go back. After years of that it just beats you down on all fronts. My great hope is that now I don't yo-yo like that and can start to feel like I know who I am physically and can stop dwelling on all the shite that is always negative.

So all in all I'm happy about all of it this week. I hope next week I can raise the bar a little higher. I'm supposed to get my physical therapy regimen next week and I am of the opinion that it's time to see if I can get into a little bit of shape. If I can, then I'll really be feeling good and knowing that this surgery is for real. Man, I can hardly let myself go there.

I really hope this keeps up. As it is with MS, you have to treat all your upticks as temporary. Hopefully I won't anymore, but that's a big hope.

Friday, September 25, 2009

My stupid shoulder

Well I wish someone was here to take a pic. of my shoulder. You've all heard me bitchin' about it and it's not getting any better. My friend Marie has it figured out as she has the same thing. She was patient #2 and is an RN and good researcher, and she figured out that it's a pinched spinal accessory nerve. Her, I and another patient all have had this so it seems like it's a potential complication that wasn't accounted for (if it even could be since it's endovascular) so I told Dr. Dake about it so that he's on the 'lookout' for it, but as I said, I don't know that he can do anything about it. The hole in the skull that the carotid, the jugular and that nerve go through does not have a lot of clearance and that's probably where it's pinched. The sheath that they're in is also tight and that could be it as well, but I think that would have abated right now and it being pinched against bone seems more plausible to me anyway. I hope I haven't bored you all with those specifics before. That's one thing about these postings; it's almost impossible to remember everything you've already written about, and my memory sucks so please bear with me. So it's been a week and I really not only feel obligated to post on progress, but I also don't want it to get away from me. The good thing about that is I didn't even realize that it had been a week. The reason that's good is that I've been busy at work, and the time slipping away as it pertains to something with MS is a good thing as it indicates I may be through over obsessing about it so much. Going into these uncharted waters really creates a dynamic where you are constantly thinking about what's going on with your health. When you're not doing well, that happens also as every head movement, every leg movement and even every eye movement are all a constant reminder that you are not doing well. Hey, I'm doing this so that I can go for days with out thinking about this. So it's off to get an EMG from someone called a physiatrist. I'll tell you though, I wish it was tomorrow. I was just going along my merry way when suddenly it clicked that Marie was trying to tell me that this was a big deal as serious nerve damage could occur if it's not getting oxygen. Well it finally sunk in and I hope I haven't waited too long. But it's pissing me off as the rest of me doesn't feel too damn bad, and that's good and I want to enjoy it!

I'm also trying a different oral drug that there is a ton of testimonial evidence on called Low Dose Naltrexone. It's a very low dose version of Naltrexone; a drug that is/was used for opiate addiction! I know that it releases endorphins and my brain simply needs all the help in the world to try and heal. Now I really don't know if endorphin release promotes that, so if you do, don't tell me! There really are some great stories of success using simply that drug. It's apparently very benign and has minimal side fx. When you start you can apparently not only dream really vividly, but also have some disturbed sleep, but the protocol calls for easing into it to help with that and is then dosed based on your weight. Regular Naltrexone for it's original intent was 50mg/dose. This starts at 1.5 then to 3 then to 4.5 and that's the dose you go up or down from based on how you're sleeping. I've also recently learned from the woman at that you can take it during the day now; it used to be thought you had to do it at bedtime but that has apparently changed. That webiste has a wealth of information on it, is easy to follow and all the links work, which is nice. SammyJo did a great job with the site. The probable reason for no trials (there may be one going on now, I don't remember) is that it's cheap because it's been on the market for so long. So there's no incentive to fund a trial. Sucks, but that's the way it works. So that should be here in a few days and I'll let you all know how that goes.

My golf tournament/fundraiser is coming up next weekend. I hope it dries out, it has rained non stop all week long and is supposed to go right up until Sunday. That's going to be quite the gesture. It's going to be like a chick flick in there if they make me speak; there'll be dudes crying and stuff. I used to speak in front of lots of people all the time for work. It's totally different now as it's such a totally different deal when you can't see. Don't know why or what that is, but I don't speak in front of people like I used to. I'm sure it's also got something to do with searching for the words and not just ripping it off like I used to. I will have to say something, but I am such a chick now. I'll come in during then end of something like "Terms of Endearment" and start tearing up not having watched a minute of it. Oh well, I just blame it on the MS... Well my shoulder is starting to yell, so I need to stop typing. Till next week...

Friday, September 18, 2009

Quickie update after a couple of days

Well my feet have come back down to earth because I do have a surgery related headache, BUT it's not even bad enough to take anything but a couple of Advil. To quote Bill and Ted "Strange things are afoot at the Circle K!". There's something going on and I'm going to walk the airports going home. That will be flippin' ginormous. I'm still pretty damn giddy about the way I'm feeling. Yes I still feel like I have MS. But do I feel better than in the last few years? Hell yes. I can say it now. Something is very different. I almost let myself fantasize about what I'd do if I got my health back, but had to stop short. Quite the coping mechanism I've developed to not get too let down. The 'balanced' vision, the conversations I'm having without looking for words, it's unbelievable. Conversations used to wear me out in a large way. I love conversing with people and when my host family was doing the dishes tonight they were jamming to some funk. I actually got up for a moment and did the neck bob. I couldn't even move my neck last time, and my mom can attest to how bad the trip home was. Just a quick update because it hasn't gone away. I hope it never does.

Thursday, September 17, 2009

Where to start?!?

Well I'll probably start by cutting and pasting what I updated on the forum where I found out about all of this; so much easier than typing it all again and I will say much of the same stuff, just in a way that people who are hanging on every word of CCSVI 'stuff' will relate to. To say the last few days went well would be an understatement, and just in time really (not for the disease course, just my sanity). The last time I went out, my mother had to wheel me around to every appointment save the MRI because that building was butted right up to the parking garage. This time? Na baby na. No wheelchair...not even post op. I was even telling my stepdad that I couldn't believe I didn't need it pre surgery, but that he'd definitely have to wheel me out. Once again, soles on the ground! That was a most excellent surprise. Being able to walk it all pre op was a pretty big deal since I could not before the first go around. So if you go back a few posts, you will see that we did not (we, like me and the Dr. collaborated on it) do anything to my left side since there was such an anamoly of a valve and everything in the collateral vein where you usually see many spider collaterals trying to make up the flow. So that was all really good, but if you go back a ways on here you will see that the surgery itself knocked my johnson in the soil (ok,it's the internet, it knocked my dick in the dirt!). This time it did not. He placed a stent (smaller diameter than before) right in the middle of the valve and the flow started up. But since it was lower in the neck, there is WAY less discomfort. While he was opening up the balloon to see what the flow would do it hurt like hell, but that has been the worst of my discomfort; right there on the table. I feel like I won't have to be off work next week and that's a reassuring feeling since I work in the hoppin' area of the economy that is the automotive sector.

So read the following through the eyes of someone who is very enthusiastic about the results of the actual physical procedure. I still won't know for some time the long term effects this will have on my MS. All we are hearing is that people with the progressive forms of the disease are taking longer to heal; sometimes very much longer. So I think my pre-surgery walking was a definite sign that the first round definitely did something. I say that because a rosy outlook would never have propelled me as far as I walked by a very, very long shot. There have been more times than I can count that I had the best attitude in the world, but the legs just simply wouldn't physically propel me another step. I never got to that point. So my hope is that I was already healing somewhat and now will continue and heal even more now that both sides are opened up. I did almost forget one thing. My 8 week old stents look EXACTLY like what the Dr. wanted to see. On the MRV, they looked like McDonald's straws they were so round. So temper your reading of my cut and paste of my forum post understanding that I'm on cloud 9 right now since I won't be dealing with Hell week like I did last time. Here's what I had to say to our gang of MS'ers:

This post might be longer than my first post op round as I am almost pain free! I don't even know where to start since everything was almost 180 degrees from my first round. I didn't even do ANY pain meds last night. I had taken .5mg dilodid (I know I spelled that wrong) at about 6:00pm and that was it. One perc. this morning at 4:00am and it's about 11 right now and I haven't even wanted one. For one thing, the stent is much lower, and as we know smaller. There's a small signature of pain that feels like I have a really swollen gland (you know the ones your mom felt to see if you were sick). Sitting at the 'puter is no problem at all.

Dr. Dake came in this morning and I was already dressed from the waist down, shoes and all, with my gown hanging from my IV pump since all the lines had to go through the arms! He was just 'wow do you look alert'. I also feel that way, this quick, amazing. I'm already finding my words quicker, I'm just blown away. I walked 3 laps around the area I was in not 2 hours after the procedure (this time I was where Randi was; along the entrance to the hospital) and stopped in and saw Tracy (Questor). He looked like I did 8 weeks ago post op, but he was very upbeat, but I could tell he was really hurting so I didn't spend too much time in there. Everytime he would raise up to talk to me, his alarms went off and I could tell he just needed to be flat. So there I was talking to him with a catheter bag hanging from my IV pole which had 3 bags hanging from it. "Ain't we a raggedy ass bunch!" was all I could think. I saw Coach too. She will have a story to tell also, but I didn't know where she was in the hospital. She and her husband are soooo very nice as is Tracy.

On to the goods: So after finding out that he suspected my valves were not functioning, he 'went around' them and tried to get flow, and sure enough, the valve did not open. So he puts a balloon in to see what it's going to do once it's open, which BTW hurt like hell this time, and he was like a little kid. I think he actually jumped a little bit and exclaimed "that's it, there's the money shot!". The collateral just disappeared. So after having some fun with his phraseology , I pulled my hand out from under the surgery blanket for a fist bump and got promptly chastised by the nurses about the sterility and all that. I told them I was already sterile, but anyway....

Now I know I'm making some transcription errors in terms of the procedural portion of it here as you are a little goofy during the procedure, but that was basically the gist of it. I found out that last time, for some reason, I was in like an ICU lite room last time (probably just INpatient post op), and this time I was in outpatient aftercare, so there was no pulse monitor or anything and I slept like a rock for about six hours straight. I'm ready to fly home today. Last time, not so much. I ate a turkey sandwich, yogurt and 3 juices right after surgery in the room where you go while you're waiting for your actual room. Well that only lasted about 10 minutes and it was off to my room, and dinner came in not 5 minutes after I got there and I ate the whole damn thing.

So it was great, I am in high cotton right now, but I'm sure I'll come back down and find out how I really will feel by tomorrow. Right now I'm just flying high since it was such a major difference from the first time and I actually feel something (the clear headedness). I can open my mouth this time. Last time that hurt so bad I spent about a week "flattening" my food and putting it to my mouth on a fork and sliding it off with my fingers. The floor around my chair at the table resembled the 18 month olds' area. So this time I'm going to chow. I also walked out, no wheelchair. I haven't used one yet this visit, not once. It has been an awesome experience this go around and I hope I start to see some improvement, but I am going to be OK if this is where I'm stuck. I am walking very well for me and I'm thinking clear. I would still love some bladder relief, but as I've said before, make the walking better and that's not nearly as much of a trial. Seeing Dr. Dake's face when he came in was the best part. I think I caught him off guard. He just kept saying "you look great". That was pretty cool coming from him.

So I'm off to take a nap and will post more tomorrow. Remember my take on cautious optimism. I can't just take all this "like it's all good now". MUCH time has to pass and it's not like I don't have everything going on than I did yesterday. It just doesn't work that way, but I'm very hopeful that I've given myself the best possible chance to recover from this crapola. And that mile + walk I did before the surgery? Well that was real; I'm at the point where I can't just "will" that to happen. I would have been walking like a stumbling drunk and gritting my teeth to beat the band at every step a few short months ago. Just like when you haven't seen your young nephew for a few months and you're like "look how much he's grown!", but the parents don't notice it like that because they live it every day. It's like that. All the improvement is so subtle personally since there a plenty of times that I feel like crap. But when someone who spends lots of time with me but hasn't seen me in a while says "holy shit you are walking great!", I just have to take their word for it!

Wednesday, September 9, 2009

Last post before "going back to Cali"

I take off Monday morning at 6:00am for my check up/round 2. I have levelled off improving and have even felt some worsening of things like leg strength in the last week. I'm not sure if it has worsened or if my perception has just changed since there was some improvement so it just feels worse from that frame of reference. Not sure, but I kind of feel like I did, in that regard anyway, like I did pre-surgery. Looking back at the last week, however, I don't feel like anything else has slipped except maybe that and my attitude. So I'm in a holding pattern in terms of evaluation of what this is or is not doing. There is another fellow I communicate with who is feeling more or less the same way. I can't say that this did nothing. I was sliding downhill before I recieved this as I've said ad nauseum on here. I'm not right now and that's cool. However, reading all of the people who have had definite improvement leaves me wanting that's for sure.

The drug I was on before this is called Tysabri. Google it if you're interested in what it's all about. I hadn't had an infusion in like 6 weeks prior to my procedure. Well the woman who always points me in the right direction when I'm crying "WTF?" brought to my attention a number of reports of a "rebound effect" after quitting this therapy. I about shit when I saw all the google hits when I put in 'rebound effect of Tysabri", or something like that. You see that drug was pulled off the market shortly after it's release due to some deaths. Well this rebound was reported clinically (lesion load) and anecdotally on a number of the things I read. It's not surprising that Biogen's take (the manufacturer of the drug) is that there is no evidence of this effect. However, there are more screeds describing it as genuine, so I'm going with those!

At any rate (I need to come up with a new paragraph segue!), I go back out and my Dr. will be freshly back from attending the CCSVI conference in Bologna, Italy. It sounds like that conference was just electrically charged from the reports I've read from our resident superwoman on ThisIsMS who actually went to the freaking conference! Once again, hats off to you Joan, your efforts and what they mean to people like me leave me speechless; and that 'ain't easy! So my hope is that all the collaboration and information sharing that went on there has Dr. Dake loaded for bear and itching to crack a hard case (me!). I must always keep in mind that this is all new to the doctors as well as to us. There's no "what to expect when you're expecting" book to deal with this.........yet (possible book idea Jon!). So everything is scary because you just don't know what to expect. It's a weird dynamic, but when you hear someone else say that they are having issues as well it's kind of comforting as you don't feel like you're such an anamoly; like maybe a tweak here or a tweak there will do it. So with his gained knowledge from sharing with other docs around the globe researching this, I hope he sees something and says "there it is! that's what I'm looking for!", and he would if he saw it. The guy is the energizer freakin' bunny in the OR. Infectiously enthusiastic. As I write more thoughts are flooding in, but I think I'll put the monkeys back in their cages as everything at this point is just speculation on my part.

My biggest fear is that he reviews my scans and says "everything looks good", but I doubt that will happen. I got my glimpse of a few days of functioning like I'd not done in years. I want that back, but more importantly, I want it to happen so those of us with more advanced MS can actually have a treatment option. My buddy Larry, my buddy Robbie and all the thousands of people who have this that are at the point of just watching life go by from a wheelchair, they've never had an option. Hell, people only advanced as far as me don't have many options that show any degree of certainty and I still work full time. I just need to stop because sometimes I ramble and it just looks to me like brain puke. So I'll update from California as I'm recovering in my good friend's incredibly comfortable house and hopefully I'll have some actual news and not just all my thoughts and hopes.

Thursday, September 3, 2009

Weekly update

I'm happy to post this week even though it won't be a very long post. I'm REALLY busy at work and have been working at home a little. I felt very stable this week with some really, really good days thrown in. I skipped my Coumadin one day last week since my blood was over thin. The next day was the best day I've had in three years. And the one after that was pretty damn good too. Then I went back on the Coumadin and feel the same as I had been feeling. That leaves me very hopeful that once I'm off the blood thinners, I'll be able to feel like I should be feeling. I'm very excited to see how I feel with no drugs in my veins at all. I just seem to be very sensitive to most drugs. Like I said before, I'd make a horrible crack head, but the thought of 0 drugs make me very, very happy. Those MS drugs; who knows what the hell they are doing to our immune systems long term.

Those two days were incredible because they were so far and above any other good days I've had in the last few years. I did twice as much, no four times as much, as I would normally do in a day. We are getting our shop really cleaned up for some high falutin' visitors, and I was out in the shop actually working with my body. I kept expecting the eyes to go out, they didn't. I kept expecting to get dizzy, I didn't. All of it. I call it the "MS cascade". That's when you start engaging in an activity and then the rest of the day you hurt, you're fatigued, you don't think clearly. Well not only did I work my butt off (for me mind you) but then I went out that night. I haven't been out, save going to friend's houses, in years, and it was a work day! I was very excited and slept like a rock that night. So those glimpses were not what I was getting before this surgery. I did nothing but feel worse all the time.

My shoulder is still out of socket, but Dr. Dake prescribed a muscle relaxer which I take right before bed and I have no pain this morning. I'm camping this weekend and that will be a great test. My last camping trip was right before the surgery and I still have a very clear memory of how fun that was (read: being facetious).

Things are different. Me and my friend Marie whose also had this are in somewhat of the same boat. We had a little more disability than the people who had almost immediate results on this. I'm glad our thoughts and the things happening to us are pretty parallel. That makes me feel that things are indeed unfolding as they should for us. I just don't know, and no one does really, what to expect and thus have spent an awful lot of time wringing my hands about when it's 'going to happen'. But things are different. My approach to lots of things has changed. Allow me to use a couple of examples. Since coming back to work there has been a common theme; I can work, but after I get home, doing anything other than watching TV or helping with dinner is about all I could do. Well here lately I've been going home and getting some things done. Laundry for example. I used to be intimidated by it believe it or not, because there are two flights of stairs to be navigated and I would usually just let it sit. I've been doing things like that. The other day I fixed my lawn mower after work, that's a refreshing change. And here's the biggie: I, and I'm sure everyone else but you just don't notice, always leave stuff that I should have brought with me in the other room or upstairs. So I had been getting my daughter and wife to be my legs. "Can you do a stair trip for me?" is a constant cry in our house. Lately I've been getting those things myself. And yesterday I walked to Walgreen's to pick up my muscle relaxer. The store is like .6 miles away from my house. Now granted a 5 year old could've kicked my ass when I got there, but I did it. It's things like that which I've been doing that are different. I haven't been really highlighting stuff like that because I still feel like ass after I do them. BUT I wouldn't have even tried before the surgery. And I still functioned and moved about quite well once I got home.

So I think things are still slowly changing, and once again, all on the plus side. I don't seem to be going downhill (knock hard on some wood) and that's just ginormous. So I'll talk to you all next week, but this week I'm just very content and feel pretty good. That's a good place to be right before a holiday weekend which I hope to enjoy camping. Wish me luck!

Thursday, August 27, 2009

Another week goes bye bye

Well this week has had some interesting turns. I've still not noticed any massive uptick in my functioning, but I have still been noticing some small stuff improving. I also need to say that my legs are still pretty weak and get fatigued easily and that I'm still wanting that to not be so really badly! The improvements are still all in the head affected stuff. I'm thinking a little clearer, eyesight is recovering quicker and also dizziness is recovering quicker. The one thing I also found out this week is that my blood is too thin. A normal blood clotting number (Protime, or INR) is 1. The therapeutic level we are supposed to be at for the stents to incorporate into your veins is a 2. That simply means it takes twice as long for your blood to clot than it would normally. Well mine was at 2.9 today, which is too thin. Not a big deal until you cut yourself or start bleeding anywhere because it's so hard to stop. I think the drug used to do accomplish the thinning, coumadin, also can make you a little fatigued and just feeling a bit off. I'll be glad to get off of that shit.

So my shoulder still looks like someone put a couple of rocks under my skin and it's still partially out of socket, but it doesn't hurt as bad as it did last week. That's another thing that can mask how you are really feeling. Pain. Chronic pain is no fun at all. It's not like I was in any significant pain, hell my legs hurt worse during the day, but that it was just constant and has been accompanied by a headache that I can't shake. It just wears you out and I've already spoken to the dynamic we MS'rs create: once something bad shows up in your body, it stays, or you at least think it has a good chance to. So things like recovering from surgery, which would have seemed normal if I was healthy, take on a different feel since you just don't trust that pain and things of that nature are going to go away once they show up. It all kind of "blends together" and you have a difficult time discerning what is your MS and what is your recovery. It really is a weird dynamic. I mean we live with our MS every day and know what it feels like, but it does vary so much in terms of intensity and what not that you just get to "feeling bad" and call it that. You don't say, "well my MS stuff over here is like usual, but this little headache is totally separate". It just doesn't work that way. Once again, not feeling like I described that very well, but I'm not spending any more time on it! Did I mention that I can be windier than a bag of assholes? It's true, I like to write. It's cathartic for me and I always feel better when I'm done. Maybe I'll write a damn book. About what, I just don't know, but maybe someday. At any rate, I asked one of the Italian guys who has had this done for a while now if I could copy and paste one of his posts. He said yes and it is to follow. This guy was one of Dr. Zamboni's original patients and he's also a physician. Here is what he has had to say about treating MS with this procedure. He's posted two, so I'll probably put them both down. Here's his introductory post:

I am a 63 year old Italian consultant cardiac surgeon working full time in Belfast since 1993. I was diagnosed with chronic progressive MS in 1986. It started with spasticity and progressive weakness of the lower limbs, more marked on the right side. It affected my ability to walk and control of bladder and bowels became a problem, in addition to erectile disfunction. When I met prof. Zamboni two years ago I walked with a stick, 200 yards seemed an unsormountable distance, and fatigue and back pain were a real problem. I met his wonderful team, Erika a very skillful sonographer, Annamaria competent and lovely researcher in functional assessment, and Dr. Roberto Galeotti, a skillfull interventional radiologist. In brief, Ultrasounds showed obstruction of the venous drainage from the brain at the jugular veins level, this was confirmed at angiography showing 95% stenosis of the left jugular vein and an inverted valve in the right jugular vein. Dilatation of both sites with a balloon was carried out during the same session. I experienced an immediate benefit: I was taller, the strength in both lower limbs improved, and so did bladder and bowel control. I could stop using Viagra.
I read all the papers that Zamboni and his team have published so far and from the first one I believed that he had made the first real breakthrough in the understanding the etiology of MS.
Now I have notice a slight deterioration of my condition, although I am still a lot better than before having the procedure. A check-up with Zamboni a month ago showed that the flow in the left jugular vein is still ok but there is reflux in the left one: the plan is either a further dilatation or surgery. This shows a strict correlation between venous drainage from the brain and symptoms.
Zamboni invited me to take part in the press release during the international congress on CCSVI in Bologna in September: I look forward to sharing my experience with others. I am very proud to share with Zamboni the place of birth (I am from Ferrara) and I know that his idea will change the destiny of thousand of MS sufferers. I hope that the medical profession will hopen his eyes soon.

And here's his second one:

It is time for people to start thinking.
Let us review the situation of MS sufferers before the Zamboni's revolution.
Nobody knew the etiology of MS but everybody knew the inevitable outcome. Being diagnosed with MS meant a sentence to a painful and distressing death. Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of. These different kinds of treatment, from shots of prednisolone, interferon injections, spinal antispastic drugs, to stem cell injection have significant, potentially dangerous side effects. In spite of this patients, desperate in their quest for delaying or avoiding the disastrous end result, subjected themselves to all of these potentially harmful treatments. I am not aware of any MS pressure groups asking for evidence: beggars could not be choosers.
Now, thanks to the genial intuition of one man, a plausible explanation of the causes of MS has been put forward and it has open the door to an effective treatment (which as a side point would save the health systems a lot of money).
The endovascular treatment of defective venous drainage from brain and spinal cord has no harmful side effects and has an insignificantly low mortality and morbidity (complications).
When I was on the table for my venogram I was praying God that Roberto Galeotti would find something wrong with my veins because I was not resigned that nothing could be done for me. I nearly cried when I saw on the screen the stenosis in my jugular veins.
I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it. Fortunately I did.
As I said before I refused any offer of treatment before since diagnosis: I could not accept the concept of treating with potentially harmful means a condition with totally unknown etiology.
Now many MS sufferers want undisputable proof that Zamboni is right before embracing a possibility of an effective treatment with no harmful side effects.
Beggars have become choosers.

Stories like this are what keeps me hopeful. He described my three "biggies", legs, bladder and bowels, and I really hope I see these results. It's hard at times being one of the handful of us that aren't swinging from the rafters, but nevertheless seeing and feeling like there's no progression going on. I had a few crap days this past week and got very discouraged. Then the last two days I had some increased ability to work a bit more and walk a bit further. I just don't know yet guys. I told myself after my last attempt at something unproven that I would never again go the route of only doing something based on what someone had to say. This, however, is different. There are papers written and actual procedures done. And I just can't wait until September 8th. The woman who introduced this to me is actually going to Italy to be at the conference when the results of Zamboni's last two years are rolled out. She's a great writer and I can't wait until she gets back with news. My pessimism about my own personal results is most definitely a coping mechanism designed to protect me if things don't go as planned. I've always been the "butter side down in the diaper pail" type of guy. By that I simply mean not very lucky. I have never won anything that was decided by chance, and am always the one that signed up that "isn't on the list". So I've always worked a little harder, stayed at work a little longer, created my own luck if you will. Well this one has me tossing about like a leaf in the wind, but there are others who've had "mild" results to date like mine and we all seem to have something in common; while that sucks that we aren't seeing the same immediate results, it does keep me hopeful as I'm not the only one. We are all people who don't have MRI's crammed with all these active lesions that are still in the inflamed mode. Two who I know of are fully diagnosed as being progressive. My neuro. suspects that I am because I progress, but don't present new lesions in my MRI and everything that comes, never goes like some people. So I think I'll just have to continue to work a little harder. I'm OK with that. I've always pushed myself hard and actually want to again. It's like my buddy Marie says, turn off the damage and then we can heal. When the source of the aggravation is still there you can't do it. Like a nail in your tire. You wouldn't patch it without removing the nail so we hope that the nail is removed. Now we just have to figure out how to get the patch to stick!

From the above copied postings it makes me think about the potential future of MS treatment. Go get surgery. Then if you start feeling "MS'y" go get your stents cleaned up. Now that would be something. If we could actually expect results from this surgery like we do other surgeries with known outcomes. So I know I just need to be more patient, like always, but it's really hard. As I've stated before, I'm right there at the edge of the disability cliff. I already have some serious physical limitations, but I can still work. That is huge to me as I was laid off for a few weeks and I didn't like the way I felt more than I missed the income. Sitting at home and being in your own world is not good for this. At least not for me. Nothing to do but think and think. Work keeps me distracted, and when you have MS, that's a good thing. I just hope the title of one of my posts soon will be "Hold on to your butts". If that happens, pull up a chair, I'll probably write all damn night!

Thursday, August 20, 2009

Weekly update

And another week in the bag. Pretty benign week MS wise. Nothing really has changed; which as I explained before is a great thing since I'm not on any drug right now. So my update from that is that I feel the same. Not better and not worse. While that is a good thing, the slightly subtle uptick in how I was feeling in certain areas is not there right now either. The one thing that keeps happening that is very heartening is that the people from Italy who've had this done for a while now are speaking up and it's all good news. This week we got a heart surgeon with MS who is singing the praises of this procedure. One thing to note is that it seems like almost everyone, whether they had Dake's stents or Zamboni's balloons, needs maintenance. They need periodic check ups and "tune ups". I'll take that anyday if I'm seeing positive change. That is really all I have to say on the MS front this week as it really has just been a "normal" week. Hoping for the clouds to part and trumpets to blare, but I'll take the normal over the decline any day of the year. There is one anecdote I'd like to share.

One of the first people who had this done was discussing how much shoulder problems she was having, as we all did, and I was just kind of paying attention because my neck and head and shoulder pain went away pretty quickly. Well not so fast! This weekend I started hurting again, but differently this time, and I looked at my shoulder and it looked really odd. I could see my shouler blade sticking up past my shoulder; from the front! Well long story short, I am having muscle spasms in that area and it's actually holding my shoulder joint out of socket. Not dislocated, but out of socket from the spasmed muscles pulling on it. A massage therapist could get it to go back in, but once I would move that arm, out it went again. You could actually see it moving in the mirror. Pretty trippy. Anyway, it's not keeping me from work, but it does hurt pretty bad when I move a certain way. So I will keep stretching and getting massages (torture sessions) until it goes back in. I have my follow up appt. scheduled for September 15th. I'm sure I'll have a lot to say after that. I also have a heavy heart this week as one of our original pioneers that had this surgery passed away this week. She had a hemmoraghic stroke and passed away. It was not related to the surgery, but it still makes me very sad as she was an incredibly positive and supportive force in this effort to get out the word about this procedure. She will be sorely missed and my heart goes out to her family.

So I hope I have more to post next week. This is my 'blah' post with nothing much of substance, but I have been holding myself to once a week and I plan to keep that up.

Friday, August 14, 2009

Lew's screed on why the hell I'm doing this

I don't have to work this afternoon so I thought I'd write something on the blog of substance since my last post was a cut and paste job of my email to my Dr. Dake. So why in the hell am I willing to let someone cut on me and do this when all the magazines I see show all these shiny happy people on these medicines? The answer to that is to follow and also why, as Hillary says, "I'm in it to win it".

Let's start by a little talk about what this shit actually DOES to you. Most of you know me and see me and know I don't "look" handicapped or even sick. However, there is so much that you don't see and that's what the MS community calls invisible MS. There's even a movie out there called "But you look so good?" that follows a few people around who have MS so you can see what they deal with. I mean I'm obviously not going to intermittently catheter myself on the deck when we have company, I'm not going to use a laxative suppository in the front yard, and you can't 'see' pain, weakness, dizziness, lack of hope, and the fear that comes from not knowing. The fear that you get when you start having a relapse. You think "when is it going to stop? Is this the one that takes out my legs? Is this the one that makes my arms useless? Is this the one that's going to make me a prisoner in the house?" All that shit works on you. Even more so when you have symptoms that you feel all day long. And this son of a bitch is relentless. Yes you can have "good" days, but it really never takes a break for a good deal of us.

So every day I have to stretch before I move too much or everything just "yanks up tight" in my legs. Next is into the shower where it sucks because I can hardly stand to be on my feet for 10 seconds without shoes on. Flip flops in the shower? Not an option. The way they move around makes the arch supports feel like a rock and the flat ones you step "off of" and it makes you fall. Then it's into the cold shower because if I take a warm one I can't see to shave when I get out. So I step out and immediately step into some running shoes (cruel joke calling them running shoes). By this time I'm usually good and dizzy and fall into at least the door jamb if not the walls trying to put stuff away. Then it's time for the 'ol pee straw. Let your mind wander, but I do this 3 times a day. Then it's down the stairs where I usually can feel if it's going to be a "good day" or a "bad day" based on how bad my hamstrings and calves scream when I'm going down the stairs (which has been getting better; good thing). Then the ride to work. It's the only ride I enjoy because I know I won't have to pull over in front of somebody's house to pee behind my car door; thank God I'm only 5'8" tall. On a side note, I've been busted doing this by the Ohio State Highway Patrol and he absolutely berated me about "what if a grandma drove by?" until I told him what it was all about, then he had some mercy and didn't write me an indecent exposure ticket. Ask my family how many times I sometimes have to do this.

OK, now we're at work, "stayfree penie pad and all". I know sometimes this is TMI, but I'm trying to educate here! I usually will turn my computer on before I have to take the fun step of a suppository. Once again, I'll spare you the details. Then it's just hoping it works. Meetings are great fun, especially when you're the one holding the meeting and have to pee about 4 times in that hour (that's not an exaggeration). As the day goes on I will eventually have to walk to someplace in the shop. I can do it, but what you don't see is my legs screaming at me to get off of them and stay off for about a 1/2 hour. As I've noted in earlier postings, my recovery time is getting better and that's very welcomed. Lunchtime! This has been MUCH better since the operation but before then it went like this: Walk to car, this act made me dizzy and have poor vision. Go get food, walking into place to eat makes me more dizzy. Take food back to work, be dizzier, eat sandwich in about 1 minute because I have to cram it in fast because I'm nauseous. Once again, this is getting better since the surgery (grateful!). So the things at work that suck are the constant interruptions from my bladder as well as the dizziness and crappy eyesight and the leg strength is a major impairment because I can't do my job nearly as effectively as I should because I can't stand in the shop for long or walk very far in it. Plus if I forget something in my office and have to go back, that sucks really bad also. This whole time something called brainfog is getting worse; you lose the ability to focus and stay concentrated. I have to write down even the simplest of tasks by lunchtime every day.

Go home and it's much of the same, but now there are stairs and things that need to get done that I have no energy left for; and I'm supposed to exercise! I usually do some of them anyway and pay for it by almost falling down the stairs (that's gotten better too!) and having my legs hurt so bad I can't explain it. I'm running out of energy just talking about this so I'll wrap up quick. Then we eat and it's the same thing as lunch time, but by this time in the day, the energy of eating makes my eyes go out worse and makes me REALLY dizzy. Then I have to stop drinking at 8:00pm so I won't pee the bed even with a nighttime intermittent catheter job. Bedtime; pee straw first, and then into bed. Sweet relief! But I have a beautiful wife that I want to show some love to quite often. Will it? Won't it? About 90% of the time the fatigue and pain are too much to even ask the question. The rest of the time it's about a 50/50 gamble. I wish it weren't this way baby!

And there's more that's a little more personal even for me. It's so regimental and you pay for it when you deviate. Suffice it to say that this isn't a complete list and I didn't write it to have people say "man, I never knew" or "wow you have a lot to deal with". You don't look at it like that, you just do what you have to, but after this many years I must say it does suck ass to deal with. Keep in mind that as the day goes on, everything, and I mean everything gets harder as time passes. It doesn't change at that point until the next day. I don't want sympathy for any of that. I just wanted to let people know who may think "why would you go through that surgery, you look fine?". Well think every day, and some days it just gets overwhelming, i.e., the things you have to deal with take more time than the time you have to be productive. And I also need to point out that it was getting worse almost daily. A little weaker, a little less bladder capacity, a little less everything. I also didn't even talk about the mindfuck and how you can't stay focused and you can't just go from pissing your pants to presenting a proposal. If it were easy to just put it in a box and get right back in to what you were doing it would be awesome.

I'm not done, I could go on ad nauseum, but I think you get the point. All of this culminates until you start to lose your sense of self. I was very comfortable in my own skin before MS, now I'm not. You can't do the things that made you feel good about yourself. So you start having low self esteem and everything you do to try to get it back is nuts. Everything looks different, feels different, it's hard to explain but I'll know one group of readers that understand it implicitly. And all of this hits you right in your prime. You're just getting it figured out to the point where you aren't screwing things up with poor decisions. You are usually raising a child and in the peak of your career curve.

Losing the things you love to do sounds kind of benign when just spoken. When lived, it sucks a bunch more. I can't do anything physically anymore, that's a given, but it's even hard to do things of leisure, like camping, just going out, things like that. Golf, could there be a less cardio sport? I can't do that because a couple of swings is all it takes to put the wheels of weakness, dizziness, pain, bad eyesight and other things in motion.

Here are some of the reasons why I'm doing this and it's all in response to not having to deal with this anymore.

Number 1

The drugs with all the shiny happy people in the ads are absolute shit once you get to a certain point. They advertise some small percentage of efficacy, but that's always on newcomers to MS, never on people who've had it long term. And anyone with this disease knows that the first few years are usually pretty mild. My heart goes out to anyone who gets slammed with refractory RRMS. That's a type where the attacks are very severe almost from the word go. I'm fortunate not to have that variant. The trials were all done with newcomers and next time you happen to see an ad for one of the drugs, look for the fine print describing the person in the ad touting the benefits. They'll usually say something like "Kim, 34 dealing with MS since 2007!". Well whoopdee shit; two years out I guarantee I could have outrun, outbiked and outworked 90% of the people I know. That's not me saying I'm all that, it's me saying that the beginning of this disease can be pretty mild for a lot of us. It's all about luring in new patients who are wide eyed, ignorant of the facts of the disease, scared shitless and looking for the answers they usually get at the doctor's office.

Number 2

My jugulars are clogged, they shouldn't be even if I was healthy; next

Number 3

You could put stents in my veins that are perfect and it's not like it would harm me. This isn't an experimental drug where you don't know the side effects. The side effect with this is post surgery pain; something you get over.

Number 4

The etiopathegenesis of this disease is very poorly understood. Even though it's not what your neurologist will tell you, autoimmune is a theory. The antigenic target is not known (thanks Marie) which makes it a theory. Hey, I'm not saying it's not correct, but it's not proven. Showing statistical relevance (enough to get approved drugs) with a bunch of new patients is not a big deal to me.

Number 5

Right now (before the surgery) I was getting worse non stop. I want it to stop and I've been on Avonex, Tysabri and Tovaxin. None of them kept me from having relapses. So why should I keep taking them? They 'ain't free that's for sure and we don't know their long term effects and you're supposed to be on them for life.

So there's my "everybody gives a shit about what I have to say" screed about why I'm doing this untested procedure. The internet forum I frequent; has a posting from one of Dr. Zamboni's original study patients. Apparently they are now allowed to talk about it. Some of these folks are 18 months out from the procedure (slightly different, they used balloons, but will be getting stents soon I think) and doing very well. I won't comment on someone else's condition without asking them so do yourself a favor if you're curious and check it out. You register, go to forums, scroll down to CCSVI and the one I'm talking about is under the heading "Press Release Bologna (that's a city dumbass, not a lunch meat!) September 8th". The part in the parentheses is not there! So later until next week!