My MRI Results

I've finally received initial results from my MRI from my family doctor.  Several problems in my spine and spinal cord including areas of demyelinization and stenosis, but most if not all of those were not new and hadn't changed much since 2008.  There has been some additional growth of bony abnormalities on some vertebrae, including to the point where (as I understood it) at least a couple may almost be fusing, but that didn't seem to worry him too much.

What was both new (in terms of extent) and worrisome was the almost complete degeneration of the L2-L3 spinal disc.  That's probably the reason for my sore, stiff lower back... and leg spasms when I get out of bed or out of chairs.  When I asked him if that could be the cause of my recent decreasing mobility, he said he didn't know.  He did say that surgery for such problems is very rare, and they would have to be very sure that it truly was the cause of my mobility problems before they would do anything.  In other words, I'm probably going to have to live with it, with pain-killers and appropriate physio the best that modern medicine can do for me.

I hope that my neuro has something a little more encouraging for me when I see her after she gets back from her sick leave.

First bike ride of 2012

I finally got out on the bike today - a gorgeous day.  It was a bit windy and there were lots of "Sunday walkers" - and dog walkers who weren't watching where they or their kids or dogs were going - but I made it, even though I had to do some sudden braking for them.  I guess my balance can't be that much worse than it was when I put away the bike last fall.

Paul, the Fampyra looks interesting (http://www.biogenidec.com/therapies_fampyra.aspx?ID=9793)... if you get on it, let me know how it works for you.

CCSVI: Three Years On

Here's a good blog posting by Wheelchair Kamikaze, summarizing where we are three years after CCSVI became know to few interested researchers and a nucleus of patients and caregivers who felt that the issue needed to be pursued: http://www.wheelchairkamikaze.com/2012/02/ccsvi-three-years-on-some-thoughts-and.html

Impact so far?

It's well over a month now since I had my veins re-opened at the Synergy Clinic in California and, so far, I haven't really seen any impact of the procedure.  In the last six months or so I'd seen some slippage in my energy and balance symptoms and was hoping to get back all of the gains I saw after my trip to Poland (almost two years ago), but that doesn't appear to be happening.  In the meantime my mobility continues to deteriorate, though perhaps that is due to the arthritis that seems to be getting significantly worse these days.  Since I am on Pradax for three months (as a post-treatment "blood thinner"), I'm not allowed to take my arthritis medicine until that is over.  I'm still waiting to get to see a doc about my MRIs: could the osteoarthritis in my lower back be causing some of my walking problems?  It sure feels like it could be, but my neuro is on sick leave so it may take a while to find out for sure.

New Course for Mobility Problems

Here`s some info about a course for MS folks around the Fredericton area that might help improve mobility:

Hello all, here is the course outline for a program that UNB (at the Currie Center) has developed in conjunction with the Stan Cassidy Center to assist in retraining the brain and hopefully recover some lost mobility functions.  If you are interested you can register by calling UNB URec at the numbers shown on the course description.  If you know of others that could benefit from such a program (such as stroke, MS, other neurological conditions) please forward this information to them.  Best regards and wishing you good health, Dianne Harriman.

A.X.O.N. – Advanced Exercise for Our Nerves
Spring 2012 Pilot Program
The AXON pilot program is a twice per week progressive program designed for those who are experiencing physical complications due to a neurological condition. Each day will include exercises that will help to build and/or maintain upper and lower body strength as well as balance. All exercises are led by Canadian Society of Exercise Physiology certified staff. Pre and post-testing is completed and is used as an objective measurement for improvement.
The AXON pilot program is adapted to meet the needs of each participant in a non-intimidating and encouraging environment. In order to be accepted into AXON, participants must be able to walk (with or without a walking aid), have the ability to verbally communicate, and have appropriate endurance to exercise at a light to moderate level for one hour. Participants will be asked to have their doctor fill out an AXON-specific PARmed-X prior to beginning the program.
Lead Instructors:
Dave Thomson, CEP
Alina Cress, CPT
Day/Time: Tuesdays & Thursdays, 2:00pm – 3:00pm
Next Session: May 15 – June 21, 2012
Cost: $70.00 members, $85.00 non-members

MRI with a Cordis stent

I just had my MRI, despite my stent.  Based on the information I had brought with me from California, they decided it was safe to do it.  If anyone else has any problems getting approval for an MRI because of a jugular or azygos stent placement, they can get their medical staff to get in touch with the MRI department at the Chalmers Hospital in Fredericton.

First in New Brunswick - again?

I talked to the MRI supervisor at the hospital today and she explained why it's been over six months and I still haven't been called in for the MRI my neuro wants me to have for my lower back.  Apparently nobody with a jugular stent (such as the one I got in Poland) has been through an MRI in New Brunswick, or even Atlantic Canada, it seems.  Furthermore, since the manufacturer (Cortis) won't "guarantee" that it is MRI safe when used "off-label" (ie, in veins), the local MRI folks were left trying to find someone in the region who could say that it is OK.  Since I had it done in California, I'm bringing my DVDs and contact info for the folks at Synergy so that the local MRI can have the evidence to say it is OK to go ahead with it.

If anyone in Canada with a jugular stent (especially a Cortis) has undergone an MRI (in Canada), please let me know and I'll pass the info on to the local MRI people.  Then, presumably, in the future MSers with jugular stents won't have this hold-up.

Study supports CCSVI treatment

The results look good: CTV Health Story.

The future of MS

Here's an article summarizing the good news about recent MS research and developments: St. Louis Today article.

From Inge - Last November

As requested by Anonymous, here is Inge's last message concerning her status... not good news, I'm afraid:

Hi Ted, Hi all,

Good to hear from you again.

With me, it is not going as well as I hoped for when I started the CCSVI adventure in Poland in april 2010.

As you may recall, a stent was inserted in the right Jugular vein. During the procedure already something went wrong and the stent was damaged. I only found out in October 2010. After initial improvements and stabilizing my MS, I began to experience more spasms and more MS symptons since July. That worried me, and that was the reason I went to Aalst, Belgium, to have my flow checked. It turned out that because of the damaged stent, trombosis clotted the stent. There was no bloodflow whatsoever and that was the reason my symptons worsened. I had a second procedure on December 17th and immediately I felt better and improved my walking etc. So far so good. In March, my bloodflow was checked and was fine. However, this year I experienced a worsening of symptoms again in July-August, so I went for another check in Belgium on September 6th.

Then it turned out that the stent was clotted again and I was scheduled for a third procedure. Slightly worried, because you can not endlessly have these procedures. Perhaps a maximum of 4. So I prepared myself for a new medicine regime or something, everything in order to prevent the stent to clott again.

On October 7th I had the procedure, and there it turned out that the stent was totally blocked by scar tissue. No bloodcloths, but hard and unpassable scartissue. So the operation failed. And basicly this means the end for my RIJ vein: it is definetely blocked. A bypass is too risky and too big an operation, so there's a dead end.

Luckily my LIJvein is still open, as well as the azygos. But my major improvements started after opening the RIJ vein, so I do not expect much of the 2 veins "left".

Now what? I started a new food regime and I also started to take serrepeptase (serranol) an enzym that helps to remove scar tissue in your veins en helps the blood flow freely. Hey, you never know ;-)

But for me, the CCSVI adventure has come to a halt. At least, in knowing that there is always a procedure at hand to clean up the clotts. I am still having fysiotherapy and still work 3 days a week. Kids and the hubby are doing great. So no complaints there. The only thing is that I do not know whether the stable condition a experienced for 18 months, is likely to go on for the coming years. So more uncertainty. I actually thought I could push the feeling of being an MS patient far from me after the procedures. But now that feeling is back, in my face. And that is a bummer.

Sorry to bring such bad news. I hope the rest of you is all doing fine!

X

Inge