Friday, April 15, 2011

The end of my CCSVI journey...for now anyway

Where to start? I don't even know since I plan on summarizing many things in this post. As most of you who read this know, I just got back from Albany Medical Center to get a venogram. It was my suspicion, based on the low percentage of patients my original Dr. treated, that my azygous vein needed some work. That's the 'spine draining' vein. I had to get a doppler ultraound on Saturday the 9th, and then a venogram and angioplasty/stenting if the venogram showed blockage/lack of flow. Well as any self respecting CCSVI follower can attest to, you WANT them to find something that needs fixing. There has also been a huge amount of people who re-stenose and who get blockages in their stents that have been placed. Well it was a butter side down in the diaper pail kind of day; no problem with flow whatsoever! The Dr. actually told me that he had never seen existing stents in that good of shape in terms of free flow. Maybe it's the bigger stents I have, or maybe it's because of how much water I drink that has kept them so wide open and clear all this time. Well my azygous, which had never been ballooned or stented, was also 'just as he'd like to see it in a healthy person' is how he put it. So what now? Well it's back to life of just taking care of myself the best I can and eating right and exercising the most that I can. Basically what I've BEEN doing. So how does this make me feel about all of this?

Not any different at all to be truthful. It's good to know that whatever problems blocked jugulars were causing me has been taken care of. So why is my left leg having MS issues? Well there's obviously more to the MS story, especially for us progressive patients. I can vividly remember reading at the very beginning of my trek down this road that progressive patients at 18 months out pretty much didn't feel any different. I can't say that totally as I did experience some significant improvements after the procedure in June of '09. I STILL don't use my cane at all, and I've still not needed it. But there are no more improvements and my left leg has had MS progression over the last year. However, it is very, very slow (which is good) and to be honest nothing else has progressed since the initial procedure. That's ginormous as you all know that we all went in to this just hoping to stop progression. It is my feeling that the 'up from the chair' stories we all read about are exclusively Relapsing and Remitting MS patients. I mean progressive MS is not an inflammatory disease process anymore, so why would it peel back symptoms? The correct answer is that it wouldn't. CCSVI cannot undo nerve damage. Maybe nerve inflammation, but not actual nerve damage. C'mon stem cell therapy!

So I've had a 'clean running' CNS for about two years now and I've not gotten worse except in the area of my left leg. Could that be progression since the procedure? Obviously it is despite a 'flowing like a river' cerebro drainage system. I suppose there is a chance that this was started before my initial procedure and it's playing out, but I don't actually believe that. If it slows down and stops, then maybe I'll entertain that theory, but not until that happens. So once again we progressives are left holding the shit stick. Bt the results the RRMS community is having are still just great. I mean if this proves out and is picked up early, we could keep people from ever getting to the progressive stage. That is the secondary progressive stage. Those who are progressive from the start (Primary Progressive MS) are most likely still in the place they've been forever with no good treatment at the present time. There are things like immune ablation (rebooting your immune system with high dose chemo) that have had results for all MS'rs, but that's still not a tried and true method either. So despite a completely clean bill of health from the flow doctors, I am still about a 5 on the EDSS (Expanded Disability Severity Scale). Basically that says I still get around, but there are significant things wrong with functional systems and the like. I'm not bitter, pissed or any of the above. After ten years of this shite, you get a pretty high fallutin' 'hope for the best but prepare for the worst' mindset. But I think I did get the best in terms of having this procedure done. I mean the whole concept of CCSVI is cerebral venous insufficiency, and I obviously do NOT have that anymore. So I really had no expectations of 'getting better'. I've written on that extensively using my flooded drywall analogy. The waters have receded and I'm in need of a good drywall guy! Once again, c'mon stem cells or whatever is eventually developed to repair nerves.

So to me I got relief initially from those things that impeded blood flow was causing. I did not get relief from my big MS symptoms. So is this all about MS? Hell, I don't know. It's not about MY MS. It gave me relief, of that there is no doubt. But even though I'd have liked to seen blockage so that I could say "that's why my left leg is progressing!" alas I cannot. There is a HUGE movement out there that is just convinced that this is it; no doubt the debate is over. No matter how hard we want that to be true, it is not. There is much more to discover to correlate MS disability and CCSVI. There is a chance that it's not even really the same thing. But then again there's a possibility that RRMS and progressive MS is not the same thing.

So going forward, I'll not be blogging about CCSVI at all unless there is some breakthrough. I'll be blogging about how I deal with this and what I think about it all. I do know that my left leg is pretty much my only visible dysfunction; and it's not even visible all of the time; only after effort. But the whole left leg issue is NOT just that it's getting weak. I've always thought that just straight up weakness is what we should fear in terms of losing our mobility. If I were to get 'sat down' (knock on wood type lingo for needing a chair!) in the near future it would not be an issue of strength. It would be an issue of knee pain! I have a suspicion that my knee pain is due to spasticity caused by the MS because it's at it's worst when my calf is just screaming from that. I think it's probably pulling my knee joint apart and causing it to bang together with every step. So I'm going to an orthopedist to get another MRI. My left knee has been screwed up from sports my whole life and it also feels like that since it now hurts pretty bad when I'm just at rest. So we'll see. I can exercise, but I always hit a wall of knee pain way before I've given myself a workout of any significance. I also still get all dizzy when I exert myself so that quashes it too. So it's back to looking at stationary objects while shaking my head from side to side and shit like that to combat dizziness. Not fun, but what you gonnna do? As always I have my chin up and will enjoy my life. It's not the life I'd choose for myself since I was always such and uber busy person. But I'm getting used to it, as is my family, and I had a great day yesterday of training the dog, working in the yard; strenuous things like picking up sticks and other high effort work! I accepted the fact that I have this shit long ago. I won't let it have my spirit. That is not something that MS takes UNLESS YOU LET IT. That is important to keep in mind. No matter how bad we have it, it could be worse. We all need to remember that every day. Be grateful for what you have on a daily basis. I can walk. I can laugh. I can love. I can be an example for my daughter. Now what is it that leaves us in the dumps, incapable of enjoying our lives? Oh, that's right, ourselves! So look at your damn self in the mirror this morning. Then think about your kids, the sunshine outside, your spouse. Then ask yourself if a strong bench press or running ability will help you deal in those things any better than you can now. Things suck all over and things are beautiful all over. Let's concentrate on the beautiful things and screw the things that suck. No time for that shit anymore.

By the way, google blogger needs to jump up and bite my ass. I've went through here and had to reput my paragraph breaks in like 4 times. So I hit preview after literally hitting the return button 6 times between paragraphs and it still wipes them out. So this is probably going to look like one big, huge paragraph. No reason for i all all and I'm sorry it it's tedious to read. Whatever is doing it has done pissed me off and I'm not fixing it again! OK I couldn't live with that, hopefully they're in there now.


  1. Thanks for your honest, balanced, and informative post about CCSVI status.

    As for the paragraphs, I have discovered that I have to input text in html mode these days to get paragraphs. I can't type out the actual code because the message won't be accepted. The bracket div bracket and closing bracket forward slash div bracket work. The brackets I am referring to are above the comma and period.

    Here is a tutorial link:

    And I don't what dumb person decided to change how we can input posts, but the above is a solution.


  2. Hi Lew - I wasn't familiar with your blog but I read this post when Denise M. suggested it. Wow - we are almost twins! I have SPMS, retired in November, 2010, and just got a little dog! Also got SSDI on my first try. Had my CCSVI procedure in Tampa last October and like you, my left leg is still a problem due to nerve damage but my energy is better by far. I just thought it was funny - reading your stuff was as if you were writing MY story! Wishing you all the best and if you want to check my blog it's at

  3. Hey lew, it feels strange saying this, but I am sorry they didn't find something wrong with you in Albany.

    You do a very good job of summing up the PPMS dilemma in this post. Happy to hear that your disease hasn't been in aggressive mode lately, even if you are experiencing some progression in your left leg.

    The story of CCSVI is in its preface, not even having reached chapter 1 yet. You have a very grounded approach to the whole thing, and you deserve kudos for being one of the very first treatment pioneers. Carpe diem, live for today…

    Oh, and as Judy says, learning a little HTML is vital for getting the blogger interface to correctly format your posts. In addition to the div command, you can also use the paragraph command. The link that Judy provided should explain all of this, and it's really pretty simple, but still a big pain in the ass…

  4. Hi Lew,
    First, your blog looks fine, you must have found a way to edit in the spaces between paragraphs.

    Second, I'm ALMOST as tired of saying "I'm sorry" as you are of hearing it. You've never shirked from risk or expense in the pursuit of eliminating this damned monster and you deserve better than the disappointments you've experienced.

    If there is any justice in this world something will show up in the next few years that will stop your progression and I'm confident that is going to happen but I don't blame you for doubting it.

  5. Hi Lew,
    thanks for updating this blog throughout the year. I'm really sorry you didn't "find" what you were looking for this time around.
    I see you mention the "reboot" of the immune system, and wondered if you had any thoughts of trying that out?

  6. Farmz, I just plan on keeping my eyes open on that front. As of right now, as far as I know, it's just being performed in spotty areas and has not really caught on yet despite 'being around' for a long time.
    Marc, Thanks for your kind words. Being the Yoda of blogging, I always love your feedback!

  7. Do you recommend folks get the procedure since you had some success? I just got either MS or DEVIC's (waiting on blood test to come back since only spinal lesions now and ON 7yrs ago) I went hunting one morning and my feet got cold and never thawed, then my hands, and my right side met in the middle. Now I'm starting to notice more problems and I'm scared to death. I've been getting steadily worse for 6mos, but the neuro say he still thinks it's probably RRMS due to the types of lesions. I immediately found a bunch of stuff about CCSVI and chemo that looked neat, but I havent even been given any type of medicine yet. Any advice? My legs, hands, and right torso are numb but still work pretty well, but have gotten slowly worse over 6months. Thanks.



I've figured out how to get everyone to be able to post on here.