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 http://ldners.org 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!