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!


  1. Another great post, Lew. Thanks for sharing your observations...and thanks for copying Gici's posts. That guy is a kick! A cardiac surgeon, too. Glad you're working and keeping busy. September is going to fly by. Hope the shoulder stuff heals really soon.
    Momma J

  2. I'm ready for that post Lew! Wright on!


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