Friday, February 5, 2010

Just had to post about this

In my never ending quest to reinforce that I made the right decision, I give you this press release by the University of Buffalo. Looks like this is gaining steam despite the efforts of the neurology departments at places like Stanford who don't like anyone playing in their gold plated, MS sandboxes.

Here it is and I think it will excite many of you!

http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf




Thursday, February 4, 2010

Time to blog!

Well it's been about a month since my last post I believe. I was completely energized to keep this bad boy updated weekly right after the procedure. Your energy is high, expectations are high and hope is abundant as at the same time you're looking for improvement, you're also recovering from surgery. As I've stated in previous postings, my feet have come back down to earth. The other thing going on is that I'm really not changing much better or worse and weekly updates are simply too frequent. I want to talk about that further and how that is bad on the hand that wants to run and be as physical as I used to be, but it's an absolute Godsend on the other hand and in the big picture of secondary progressive MS. The key word obviously being progressive. I am not changing much either way, so that means no progression is going on either. I always hate to actually state that. I'm about as superstitious as a rock, but this is different. When you say it, you acknowledge that somewhere that's kind of in the back of your mind. I really don't know, but I do know how I feel. And since my last post had a bit of angst about all of it, I thought I'd lay out all my shit and talk about how it was before and how it is now. Since I've been feeling the same for a while, this will be good for me to. I say that because literally EVERYBODY tells me I look and move like I'm lots better. The big thing I always have to keep in mind is that Dr. Zamboni's SP (secondary progressive) patients showed no real appreciable change after 18 months in the positive direction. It's been just over six here and really just over 4 since the left side stents were placed. I will break for a paragraph here for my good buddy Jamie!

Since Dr. Z's SP patients didn't show much after a year and a half, I also need to point out one other fun fact. He didn't stent. He ballooned. And the restenosis rate was pretty high; somewhere in the neighborhood of 45% if memory serves. That's a lot of peoples' jugulars just occluding again after they were opened back up. Well I have things (stents) where my stenoses were and they aren't restenosing. So I think I got the goods if you want to know the truth. So let's run down the list of stuff that MS has done and I'm going to talk about how it was before and how it is now. I'm going to have to be brief as you know how windy I can get. Here goes.

First a list and then itemized on how it all is.

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all)
Stiffness (ha ha right after that!)

First off Optic neuritis. I am not going to explain it all, so I'll try and put the picture of EXACTLY what it looks like when that flares up. If the pics don't post, I'll put a link you can click. When I get hot, and before the procedure about 10 times a day, this is exactly what it looks like looking through my eyes:



Ok, that kicks ass that I figured that out. At any rate, it has improved... alot. It doesn't happen at all some days, and when it does, it's not as severe and it goes away very quickly. So when we're done, I'll write the list again and tally up who's winning this bitch.

Next chronic constipation. Fun subject, but people with MS will be interested since it sucks to be constipated for 8 years; no shit (rimshot). Well that has gotten better I'm glad to report, and once again, this has gotten lots better. What MS does is just slows down the parastalsis so much that all the water gets wicked away and you can figure the rest out. Well it's been good here for about the last two months. I'm a happy dude.

My fucking bladder. Can you tell I hate this one? Sounds pretty benign and like a nuisance. Nah baby nah. It rules my life and keeps me from doing SO many things. When you have overactive, you can take a pill, BUT, not if you have the dissynergy thing. See when a normal person pees, their bladder squeezes, the urethral sphincter opens up and once the bladder is drained, the sphinc. shuts again. In my case, I get about 4-6 oz. out and then it shuts again. Not working in concert, thus dissynergy. So I always have a couple hundred milliliters of pee left after I pee. This really sucked at night until I started IC'ing. That means intermittent catherization. Not the kind you see on old people where the dude is just up in there and stays, but something I like to call "the pee straw". Sounds pretty scary huh? Well it's a Godsend if what was happening is that for about, oh, 4 or 5 years I only got about 3-4 hours of sleep a night as I would get up to pee about 6-8 times per night. That's for real folks. And you can't go anywhere. It makes your world very small. That hasn't changed I'm sad to say. But now that I'm cathing every night, I do get way more sleep. It just sucks ass all day long as I pee literally about 3-4 times an hour. I usually take a couple hour break in the afternoon, but I can't take too long of one since I can't drink after 8:00pm or the cath process will wear off by about 2:00 am and then it's up and down until the alarm. So this one sucked before and it still sucks.

Balance problems. Exactly what it sounds like. I bounced off walls, ran into everything, and dare not get tipped past about 2 degrees from perfectly vertical or it was 'pants on the ground'. At work they called me the "wall walker". I walk down the hall now and only hit it maybe twice, if at all. So my balance isn't back to 'normal', but it's better.

Vertigo. Another one I almost qualified with the F word. When you have this transiently, it's tolerable. When you have it for years, it is horrible. You can ask anyone who knows me if I didn't used to eat like I was at boot camp (turbo fast) and with my eyes closed. I didn't enjoy food for a long while. I still get it from time to time, but it's not usually as intense as it was, and it's so infrequent when compared to 24/7.

Foot pain. It started out feeling like I had a roll of quarters taped just between the ball of the foot and my toes. Then it went to just plain foot pain. I wear hard orthotics (they do have a little padding) all the time now and I can't walk in barefeet. I can from my bed to the john, but more than that and I usually actually wear my boots. It's pretty hot let me tell you ;-). That really hasn't changed much either. I took them out about two weeks ago and just put in the insoles that came with the boots and after a couple of days I couldn't take it anymore. Plus it travels straight up to the calves and makes them weak and hurt.

Leg pain and weakness. These are not mutually exclusive by any stretch, so they get bunched together. It's a weird feeling. It feels like I've been caned in my calves. That's the only way I can describe it. Like a charlie horse if you will, but not as intense. The spasticity makes this worse, so it probably belongs in here as well. This really hasn't changed, although my gait and is so much better, you wouldn't think it. But it's really strange. I don't need my cane ever anymore, but I really can't walk any farther. When I try to go a 1/2 mile or so, by the end I'm just barely picking 'em up and putting 'em down. But I guess I have one thing that has gotten better. When I do need to walk alot at work, I recover so much quicker. That is a very good thing.

My gait is so much better. Not needing the cane goes hand and hand with this. Those are just enormous as I have so much less hip pain. My knee still hurts like hell almost every day, but it doesn't make me limp anymore and it used to.

Sex issues. I won't go into details. It wasn't full on, but it was on again, off again. All I'll say is I'm glad my wife was a good sport! Now it's still not like I'm 18, well shit, I am almost 44, but that is better too. That's also a very good thing.

Stiffness. This is a weird on because this is the only one that I feel is slightly worse. I could also be this God forsaken winter we are having too, but I just feel like this has gotten slightly worse. I haven't exercised like I should either, so that may alleviate that. We'll have to see.

To so "tally it up":


Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

So that's six better, 5 unchanged's and 1 worse. Although I always need to remind the part of myself that wants to be better that unchanged is great. It doesn't always feel great because these things still are very much a part of daily life. But when I think back (it really does feel like a long time) to before the procedure, I was really desperate. And if I would have kept getting worse at the same rate as I was, I don't even know where I'd be, but it would be a hell of a lot worse off than I am right now. So I am just very, very grateful every day that I did this. I still have that part of me that thinks about "Flowers for Algernon", but since one of the good things I developed is the ability to live day by day, I really like the fact that I can actually be pissed that I had to work late tonight. About a half a year ago I wouldn't even attempt to work late. To be truthful I probably wouldn't be working at all.

So there's no question that I'm glad I got this done when I did. A good friend, who also had this done, told me the other day "if it is to be, it's up to me". So when the weather gets just a bit warmer, I mean shit it's in the 20's right now and I just shut down, I'm going to get back outside and push myself a little bit. Bad things happen when I push too hard. I seem to end up doing that anyway, but I need to be smart about this. This really has become my muse about whether or not this has worked for me or not. I still honestly can't say since I'm still so limited. But I can also still do a great deal since I am still on two feet and you don't have to be able to walk a mile to live lots of life. As long as you can get around you can do a lot. I think I'll keep this up probably every month or so unless something starts changing; better or worse. I hope this really help people understand the effect that the CCSVI procedure has on a person that has MS. I watch a lot of people really go batshit on this and they think it's a cure. This has a long way to go if it's ever called that. But I do feel very strongly that it's done wonders for me. For real. I'm so glad I got this done I can't even explain it. But I just want everyone to know that I still have MS. It doesn't seem to be doing anything right now in terms of advancing, but I still have plenty of symptoms as I've described in here. So I'm going to sign off now as I could just keep carrying on about that. It's just basically saying the same thing a bunch of different ways so I'll stop! Until next time..