Not in Canada, eh?

Another Macleans article by Anne Kingston, which delves deeper into the unusual practice of denying assessment and treatment of people because they have MS: http://www2.macleans.ca/2010/05/31/not-available-in-canada/.  What bloody unethical behaviour by official organs of the medical community!  I've been treated for CCSVI, but this injustice makes my blood boil.  Grrrrrrrrrrr....... Sue the jerks!

Thanks, Shelley, for putting me onto the article.

Local Lady Going to Frankfurt

I had a call this afternoon from a local woman who had talked to me about CCSVI before I went to Poland.  She informed me that she had a place in Frankfurt with Dr. Seibert (spelling is probably wrong - perhaps associated with the Vogl clinic that I have heard about), where they do assessments using the various appropriate protocols for MRV and Doppler, then ballooning (no stents, apparently)... she'll be leaving on Thursday!  More and more opportunities for folks who are willing to travel for the treatment... too bad there aren't opportunities in Canada, yet.

And, later, this correction regarding the German CCSVI treatment (thanks, B,):

Just for clarification and correction, I have been informed Dr. Horst Siebert does do stents if there is restenosis of the angioplasty during the procedure. He is affiliated with Centrum Frankfurt Sankt Katharinen and the testing and imaging clinic Prof. Dr. Stehling Institut für
BILDGEBENDE DIAGNOSTIK in Frankfurt. - B

The Market

This morning I did all the shopping at the market... myself... and without a cane, the first time I've been willing to take that chance since sometime last summer, I think.  This afternoon I vacuumed the apartment and now am tired and my arms feel like they're filled with lead.  Continuing, small repetitive motions still seem to tire me out extraordinarily quickly... guess I'll have to leave the apartment cleaning to my wife a while longer!  ;-)

Superman (lite)

Things went really well today.  Most pronounced was the greater strength and control I had in my left side when I did my weights today... and my better gait on the way to the gym.  Small victories for most people, but big ones for MSers like me!

Liberation Walk on the Camino de Santiago in 2011?

One of my fellow liberation "graduates" of April 29 is asking about the interest in organizing a 500 km walk for liberated (or, as yet, unliberated) people, their families and friends on the Camino de Santiago from Biarritz, France to the cathedral at Santiago de Compostela. Of course, MSers could walk as little or as much as they are able and not many would have the time to be there for the entire trip, but the idea would be to have at least one liberated person walk for every part of the entire distance.  The goal would be to raise the profile of CCSVI in countries the participants come from, perhaps raise funds for people who can't afford liberation... and celebrate our own liberations!  People wouldn't even have to participate all at the same time: different groups could organize themselves to walk all or some part of the "pilgrimage" and just "register" with the organizing group so that the total number of walkers can be reported to the world.  Certainly if a large number of people wanted to do this, you wouldn't want them all in one group, since that would make it too large and logistically complex.

It's an intriguing proposal, one that appeals to me and my wife since we were thinking of doing it before we'd even heard of CCSVI.  At that time the idea was that she would do the walking and I would drive to meet her every evening - but maybe now I'll be able to walk part of it and do it (or the driving) in the company of fellow MSers!

I lived in Santiago de Compostela on a sabbatical before my MS hit: it's a gorgeous and interesting part of the world. Anyone else up for it?

Wow, four weeks since liberation!

So I'm four weeks down the road.  Time to take stock of the changes and improvements I've seen so far:

1. My energy is way up.  It's still far from normal, but it's much better than it was before the procedure.  If I push myself as I did yesterday unloading the car after our trip to the cottage, I can end up feeling pretty weak and some of the effects (bouts of tiredness, arms feeling like concrete) can come and go for a few hours after that.  But if I don't push myself, I won't know how much I can do.
2. My mobility is better.  In the mornings and when I haven't been walking much, I only have a small limp.  I start limping more after only a short distance, but it's still noticeably better than before.
3. My balance seems better when I'm not tired.  I hope to have objective measures of this after I see the physiotherapist next week
4. The numbness, stiffness and clumsiness in my hands seems to be getting a little better every day.  If I get real tired (physically), the symptoms seem to come back with a vengeance.

Passport Medical Contemplates Partnering with AMEDS Clinic

Here is a link passed on to me by a fellow MSer concerning a possible partnership between a Canadian medical tourism company and the new AMEDS CCSVI clinic in Warsaw: http://passportmedical.com/2010/04/ccsvi-liberation-passport-medical-travels-to-poland/.  Note that neither I nor my friend can vouch for the tourism company, nor have I heard from independent sources regarding the competency of the AMEDS people, but I thought that MSers looking at options may wish to investigate this one.  If anyone can provide me with good information concerning either organization, I would very much appreciate it.

PS: Looking at TiMS this evening, I see that at least one person who was on the Passport Medical waiting list took him/herself off because it was cheaper to deal directly with AMEDS.  However there may be other reasons (insurance, convenience) why some may prefer to deal with a company that specializes in medical tourism.

At the Cottage

It's been a gorgeous weekend at the cottage: sunny and around 30.  The sun is shining off the bay and the fresh breeze makes me think that maybe I'll get my sailboat out on our next trip out here... and last summer it looked like that would be my last summer of sailing... it's great to be alive!  I'm glad that I'm not much affected by heat anymore.  And no, that's not because of "liberation", it's just something that improved in my second year after being diagnosed, about the same time that my weakness and footdrop shifted from the right side of my body to my left.  The increased energy, though, could be due to the treatment.  I worked on the steps to the beach, mowed the lawn and did some other chores.  Though far from feeling "normal", I didn't get tired just thinking about doing those things.  Our friends and neighbours here seem to agree with my wife that I look better - better colour and "brighter".

Changes

Today I went to a meeting, then did some shopping and ran some errands.  I didn't bring my cane.  I didn't have to work up the strength and nerve to just do one of those things... I just did them all.  Yes, I still limped.  Yes, my arms and hands were stiffer by the time I was done all that (maybe I did a bit too much in one go), but... I DID it! 

A Mixed Day

Today was a mixed day.  Did the shirt buttoning thing again, didn't use my cane again, but in the afternoon my arms and hands were very stiff, and it's still like that.  But in my workout this evening, even though they were stiff, my arms and hands were stronger than they've been in a long time... strange.

Macleans article authour interviewed on Global CCSVI Radio

Did you know that there is now an internet-based Global CCSVI "radio" station?  I didn't but, yes, there is!  And this interview with the authour of the Macleans article on CCSVI (Anne Kingstone) is revealing, especially with respect to the attitude of the President of the MS Society of Canada who seems to feel that drugs should be used to treat CCSVI!  Here is the link to that interview: http://www.blogtalkradio.com/omario/2010/05/07/anne-kingstone-talking-about-ccsvi. The interview itself is long, but the piece about the MS Society of Canada's president is in the first 7 minutes.

Co-workers Impressed

Some folks at work who saw me walking around today were amazed at how much better my walking is now... I haven't used my cane for a couple of days!

Embry castigates Montreal Gazette Journalists

Dr. Ashton Embry lambastes the two Healthwatch journalists for lousy journalism in their article on CCSVI: http://www.thisisms.com/ftopicp-111922-directms.html#111922. This is a worthwhile read, and you might want to save a copy in your files to show to those in the health professions who are ridiculing the idea that CCSVI could be a cause of MS.

Simka's Team Trains Foreign Doctors

One of my fellow liberation "graduates" of April 29th asked Dr. Simka about the possibility of training a Finnish radiologist who is interested in CCSVI.  Here is Dr. Simka's response:

Congratulations for your improvement.
Regarding training, we will be more than happy when the operations will available in every country. It is rather crazy situation when patients are force to go overseas.
So, a doctor who will be interested in such training should contact either me, or Dr. Ludyga (t.ludyga@poczta.fm).
We had already doctors from UK, Russia, Hungary and India, and there will be from: USA and Canada. Prof. Zamboni is organizing primarily training in Doppler exams, but since he is from the state university, he is not very flexible (limited number of trainings, etc.), which, of course is due to bureaucracy, not to himself.

Cheerleader refutes CanWest article: "Liberation only has placebo effects"

Here is a refutation of a Montreal Gazette article that suggest the liberation treatment may only produce placebo effects: http://www.facebook.com/?ref=home#!/notes/ccsvi-in-multiple-sclerosis/liberation-of-placebo-effect-dear-canwest-you-are-wrong/396142712210

Little Improvements

Today, I wore a buttoned shirt for the first time in months... and I buttoned it myself.  And my walking is better... better than it's been in a long while.  And I've noticed a higher energy level for several days now.  So, though I don't want to jinx this, and I know that there will be setbacks, it really looks like it's working for me!

Experience with Dr. Kostecki in Poland

The following was a posting on TiMS by an MSer (alanbrowne) who had just returned from his liberation at Dr. Kostecki's clinic in Tychy, Poland.  It should be reassuring for those who have gone this route for CCSVI assessment and liberation:

Hi All,
Just thought I would share my experiences in Poland with Dr Kosteki.

Arrived on Monday 10th May, met at the airport and transferred to the Arena Hotel in Tychy. Hotel 3 * and very nice, modern with good rooms and a nice bar area and restaurant.

Had MRI on Tuesday, 45 minutes long and had a couple of hours wait but all was fine. Saw Dr Kosteki Tuesday evening and had Doppler, my right vein was completely blocked, no flow at all !!  Left vein also partially blocked.

Wednesday saw the Neuro, normal testing here.

Friday, big day....arrived at the hospital about 3.00pm, was last in line so procedure didn't start until about 9.00pm, also you can't eat or drink anything all day, so with being nervous and hungry I was feeling a bit jittery.  They do put you on a saline drip when you get there so you're not de-hydrated. Procedure was ok, a little uncomfortable but not painful, a very strange popping sound when they balloon but ok. They tried to balloon my right but this wouldn't stay open so was offered a stent which I accepted. They also tried ballooning my left and although it did open more they did say they would've also stented this vein, but currently only use one. About an hour or so later I was all finished....liberated.  Bandaged up and not to move for 6 hours I was taken back to my room. Tried to sleep but just dozed on and off through the night, early morning my groin area where they went in started bleeding again, so more bandages and another 6 hours.....
About 4.00pm was given the all clear and could go back to the hotel.
So, have I noticed any changes since....

• My left foot was immediately warmer
• The constant spasm I had in my left leg disappeared
• The Lhermittes I have always had is gone
• Our journey back to the UK took 17 hours due to cancelled flights etc, normally I would be completely exhausted....but felt fine
• My brain feels different, clearer, hard to describe

Hopefully over time things will also improve with my mobility, just need to be patient now.
Everyone over in Poland was fantastic, the Dr's, the drivers, Katherine, they all couldn't do enough to help, they were brilliant.
Also met some fantastic people who I had to mention, Randall and Kate from Canada, think we will friends for ever. Jan and Lynda from Canada, very nice people also (although a bit of a trouble maker ). Ivan and his wife from Bulgaria, also really nice people.
Just to let everyone know the situation there, Dr Kosteki is actually doing all of this as part of a study which is why it is a lot cheaper.
All in all a memorable experience, would recommend it to anyone
Take care all,
Alan

Reply to Anonymous - Vascular Specialists

My GP is trying to get me a referral to an Interventional Radiologist who might be interested in this whole issue, then perhaps a vascular specialist - but this is my own initiative, not something the doctors in Poland said I have to do.  You are in TO, so there should be a large number of IRs and vascular specialists there.  Is your GP onside?  If so, or even if he/she is neutral but open-minded, book an appointment and explain the situation - he/she should then make a referral to someone who gives a damn.  Take all the ammunition you can get from the TiMS and/or facebook sites, but try to condense it into a one page summary (with the details as backup).  I gave something like that to my GP and he was very interested and helpful - if you want, e-mail me (through the profile link below) and I'll try to find it for you.  Your doctor is there to help you, and not just with direct medical complaints, but also for consults and referrals.

I'm basically feeling no different... my wife and friends say I look better.  In any case, I tell myself it took 8 years to get to this condition, so I have to be patient about any healing that might happen... and since I'm SPMS some damage is probably permanent, so until they discover drugs that regenerate myelin and/or nerves I still may suffer symptoms.

Best of luck in Poland... you'll be well taken care of, I'm sure.

Reply to Vick - Getting an MRV in Ontario?

Vick, did you have that CCSVI done by Dr. McDonald? If yes, then he seems very pro-MSer and should be able to help you.  If it wasn't done by him, then perhaps contact his office to arrange a meeting. Was the test you had done just a Dopplar ultrasound, or a venogram (apparently the "gold standard" to testing for CCSVI)?  In Poland I had the Doppler, MRV beforehand and then a venogram during the procedure. 

If you really need to get a MRV, maybe try to get in contact with Dr. Haacke at McMaster University.  There are also some contacts on the TiMS and facebook CCSVI sites, I believe.  But I think getting in contact with Dr. McDonald might be the best idea, either directly or through a referral from your GP.

Good News: Dr. McDonald continues testing for CCSVI

A fellow MSer told me this evening that he's just received word that he has an appointment to be tested for CCSVI by Dr. McDonald in July (after having been referred by his GP) in Barrie, Ontario.  I hope for his sake, and for the sake of all other MSers in Canada, that by the time he goes to Barrie, Dr. McDonald will have been allowed to resume TREATING CCSVI, as well.  If not, then I hope somebody who is affected by this will sue the a$$es off the people and organizations who are responsible for this travesty - SHAME ON THEM!

English/Polish phrase list for Hospital in Poland

Everyone, there are three MS Word documents containing preliminary (very preliminary, in one case, at least) lists: one list for patients to use to explain things to nurses, one for nurses to explain things to patients, and one of general instructions and advice to patients. They can be found at this web site:

https://sth-se.diino.com/tedrobak/Shared%20Files

The password is euromedic

The preliminary lists have already been translated by TiMS followers Iwona and Mila.  The general instructions list is just some rough notes.  Please add any additional phrases you think might be useful in any of those lists and e-mail them to me.

The Euromedic people already have these lists and will give ideas for changes and will then adopt them.

Dr. McDonald's Plea (transcript)

In case some of you didn't see this on the CCSVI facebook site, here is the transcript of the conclusion of Dr. McDonald's passionate plea to be allowed to treat his patients:

CONCLUSION

I conclude with my recommendation to this Subcommittee. If universal health care is not accessible for treating CCSVI in MS patients, then we must at the very least allow these patients to purchase these services in Canada (just as patients purchase cosmetic surgery services, bringing revenue to hospitals whose facilities are rented). These patients have a right to decide.

Please report to the Standing Committee on Health and advise the Minister of Health that there are unconscionable and unacceptably discriminatory obstacles in the way of corrective angioplasty for CCSVI sufferers who happen also to be diagnosed with MS.

Please find the way to make clear, at the earliest possible opportunity, that properly diagnosed CCSVI should lead to angioplasty correction without any discrimination between MS sufferers and non-MS sufferers. MS patients have just as much right to proper blood flow from their brains as anyone else.

Doctors are sworn to help their patients. Please let me help mine.

Dr. Sandy McDonald, MD

No change for me yet, but...

You might like to hear from a liberated woman from southern California who described these improvements in a thread in TiMS:

1. Immediately after procedure, daughter noticed my feet were pink and felt warm. They were icy cold and dusky prior to procedure. 
2. I did not have to get up during the night to go to the bathroom. Prior, I had to get up 2 to 3 times a night. 
3. I could walk without crutches around the room. Prior, I had to use crutches for every step. 
4. I was able to sleep on the side that I had a painfully broken rib (my muscles were supporting my ribcage after the procedure). Prior, I couldn't put weight on that side. 
5. I could stand up straight. Prior, my trunk was so weak, I was bent over. 
6. I could look up at the ceiling without supporting my neck and head. Prior, I couldn't because my neck was too weak. 
7. My gallbladder worked better. How do I know? Because my bowel movements were a darker color rather than very light. I also didn't have pain in my gallbladder area, even when eating high fat food. Prior, I couldn't eat high fat food without having pain in gallbladder. 
8. I did not choke. Prior, I choked frequently on my own spit or on anything spicy. 
9. My right foot was straight when I walked. Prior, my right foot "led" with the outside. I thought I was just pigeon-toed. 
10. No positional sleepiness. Prior, I fell asleep or almost fell asleep when my head was flexed in certain positions. 
11. Shopped for 3 hours without any cramps in feet. Prior, I couldn't shop for longer than 1/2 hour.

These were immediate results that have either stayed stable or improved even further since procedure 6 weeks ago. 

My physical therapist says my lower extremity strength has increased 25%.

Dr. McDonald pleads to be allowed to treat CCSVI in MSers

The first part of this audio is Dr. McDonald's passionate plea to be allowed to treat MS patients for anomalies in their jugular and azygous veins:
http://parlvu.parl.gc.ca/parlvu/asx/playlist.aspx?files=/2010/2010-05/00019446.wmv

As he says, why should a "plumber" (vascular specialist) get permission from an "electrician" (neurologist) to be allowed to fix a plumbing problem.  The rest of the audio clip is worth listening to, as well, though you may have to suffer through some "advertisements" and/or "cautions" from researchers, neurologists and the MS Society of Canada (some of which are in French).

What medications post-op (after "liberation")?

To some extent what you will be prescribed will depend on what you have done (venoplasty only?  a stent?), but for me (with venoplasty on both sides, then a stent in the left jugular) they prescribed:

1. Fraxiparine (Heparin in North America) injections for 7 days - I guess to reduce the chance of blood clots forming.
2. Areplex (Plavix in North America, blood-clotting inhibitor) for two months, recommended for a year.
3. Polpazrol (Prilosec in North America) for two months.  This is for stomach upset, so since I need it anyway to counteract my arthritis pills, I'll keep on using it instead of the other medicine I've used previously (that was my GP's advice anyway).  Polprazol seems to work better than my old medicine.
4. Low-dose Aspirin forever.  They suggest 100 mg, but the 83 mg aspirin should be fine, they said.  I was doing that anyway.

It wasn't clear from what they gave us as general information, but apparently it's a good idea not to do very strenuous activities for a couple of weeks post-op if you get a stent. If you have any complications or concerns post-op, Dr. Simka usually answers those quite quickly.

MP Calls for Emergency Debate on CCSVI Testing and Treatment

Well, will wonders never cease... the folks at the Parliament Hill protest must have done a great job of convincing at least some MPs that this is a critical issue: http://healthblog.ctv.ca/post/MP-Dr-Kirsty-Duncan-calls-for-Commons-debate-on-CCSVI.aspx

Big study: Vascular problems associated with disability progression in MS

Almost 9000 subjects! This was not a small study, and certainly seems to indicate that CCSVI should be treated now, not after years of study: http://www.thisisms.com/ftopict-10935.html

Advice from Dr. Simka

One of the people who was liberated on the same day as me is continuing to have headaches and dizziness.  She e-mailed Dr. Simka about it and this is the advice she reports that received (edited somewhat by me):

• Fatigue might have become worse by all the activities during the week Poland, travel, stress, hospital, little rest, etc.
• Tendency to faint could be due to the effects on my body of the new vascular changes - it may take 1 to 2 months for my body to get used to it! 
• It's only eight days since the operation - that is far too short a time to feel good or see improvement. Dr. Simka  says it takes 1 to 2 months.  Take good rest and your medication! 
• The headache and back-pressure back my head and neck: is due to the ballooning! Dr. Simka advises that, if within one month I don't feel better, I should go back to Poland because there may be restenosis.  I I hope not, of course, because I don't want a stent.  The doctor who did the procedure had said he hoped that with a 12 mm balloon my vein would remain open. 
• By the way, my blood pressure varies a lot now: it was 105-62 last night and that was after one round walking with my dog - weird!
  
  I am reassured about my health condition by the reaction of Dr. Simka! Now let me see if I can feel better soon!

Two Liberal MPs Push for CCSVI Assessment and Treatment

In case you missed it in yesterday's Globe and Mail: http://www.theglobeandmail.com/news/politics/ottawa-notebook/two-mps-push-liberals-to-go-positive-for-a-change/article1561031/

Then I replied to a comment from someone who works in health care imaging who said that testing MSers would be too expensive:

Dwight Winger, do the math: I would guess that, on average, each MS patient costs the health care system (Medicare or Insurance or patient-paid) $30,000 to $50,000 per year, and that doesn't take into account the economic losses related to MSers being unable to work, much less the tremendous toll on their quality of life. This is an investment with a potentially huge return in reduced cost to the health care system.

While I recognize that we can't diagnose 70,000 people in a short period of time (because of equipment, because of lack of expertise in diagnosing CCSVI), saying that we should therefore not do anything about getting geared up to do it makes no sense at all.

I went to Poland to be diagnosed and "liberated". It would have been nice if I could have at least been diagnosed before I went, but I understand that these things take time. What I would not understand (or accept) is that fellow MSers would still have no Canadian options five years from now. That wouldn't just be stupid, it would be inhumane.

Stent Care and Iron Deposits

A note from a fellow "graduate" of Katowice who was wondering about living with a stent, and about getting rid of the iron that we assume has built up in our brains. and got these answers from Dr. Simka:

I have asked two questions (of Simka). His answers are in red:

1. Are there any rules  on 'how to live with a stent in a jugular vein' : The do's and the don'ts... You can do almost everything, but a compression in the area of the stent (especially if it is a long stent, longer than 40 mm, should be avoided.
2. We are wondering how we can get rid of the iron deposits: Medication/diet? The role for iron in the pathogenesis of MS is only hypothetical; maybe it is important, maybe it is an epiphenomenon. Anyway, diet cannot change this iron load. The are drugs that hypothetically might be useful, but they are of as yet not proven efficacy.

Another Small Advance for a Katowice Graduate

Some more good news from a liberated friend:

I had some serious jet lag 2 days after we got home and by then had put the procedure down to long-term wait and see. But yesterday I found that my foot wasn’t dragging like it had been for the last year. It was quite a revelation and came right out of the blue. My skepticism is definitely wavering!

Sporting World Rocked: Katowice Olympic Team for London 2012

The newly liberated announce plans to "Own the Podium" at the 2012 Olympics in London.

Must... be... careful!

Yes, Lorna, they actually didn't give us any information about post-treatment care of stents, but what you say makes sense... and my wife made me promise to take things easier in my workouts for the next few weeks.  And that reminds me that I have some questions and suggestions for the Euromedic people.

My "Classmates'" Improvements

A couple of the people who were in Katowice with me reported these improvements in their symptoms:

I experience the following improvements:

• balance is far better and it maintains to be so. Before I would tip over when pulling up my pants in the bathroom, now I can do so without tipping.
• i can stand up more straight and in balance. I do not have to hold the walker when I talk to someone, and am able to stand much longer. This causes muscle ache though, so I do have to do exercises to strengthen muscles.
• i am able to shower standing up! haven't done that for a long time. After a while, i sit again in order to be able to take a longer shower, but i am able to shampoo my hair and rinse it, wash my body standing up. That is a big thing. Building up strength is key here.
• i have a stronger right hand, i notice when i brush my teeth. the hand is still numb though, so my writing is still bad. Hooray for the laptop!
• i cough stronger. before i couldn't clear my throat properly, now i can.
• and the most interesting thing is that I have better circulation in my feet and legs. before i had thick legs due to water retention. Now it is gone!

 and from another:

• My eyes are better, I can see colours and contrasts better, it s like somebody cleaned the windows.:)
• My little finger on my right hand is functioning again, I can hold cutlery in both hands, also writing is getting better.
• My feet are warmer

I hope the other improvements will come with time:)

Patient Activism and the Internet

 Here is an interesting Canadian Press article on how the Internet is helping the cause of patient advocacy: http://www.google.com/hostednews/canadianpress/article/ALeqM5gJNVLWcEzd_FgZFh4x7RjEekkZBQ

Drug Company Influence on the Medical Community

Here is a very informative article on how experts can be influenced by "sponsorship" from big business, and discusses how this may work in the health industry: http://www.thisisms.com/ftopict-11534.html

Hmmm... could it be?

Tonight, as I do almost every night, I went to the gym to do my exercises.  One of them I do on my back on a bench, straightening my arms with 15 pound weights in each hand.  For the last 2 years my left arm has been weaker, to the point where I should really be using a lower weight - for those who do weights, you know how you really don't use a good technique when you try to use a weight that's too heavy.  Tonight, for the first time in a LONG time, I actually lifted the weight with my left arm properly, and without any greater effort than I required with my right arm.  It may seem like such a small thing, but since it was such a definite difference, it was really encouraging.

The Parliamentary Sub-committee on Neurological Health

is meeting on Thursday to discuss CCSVI, so a number of TiMSers who just found out about it are sending them e-mails.  This is what I sent:

Dear Committee Members,

I would first like to thank you for addressing the topic of CCSVI in your deliberations.  In this brief I would like to speak to three main issues:  the possible impact of CCSVI research on MS, the way that the CCSVI theory has been discounted by vested interests, and the fact that MS sufferers must leave Canada in order to be competently tested and treated.  My point of view is that of an MS sufferer with secondary progressive MS, who has spent the last few months researching the topic, and who has recently returned from Poland where I was tested and treated for CCSVI.

The cost of MS in terms of its impact on our health care system and in terms of lost productivity are huge, and investing in research into a condition that is, at the very least, highly correlated to MS is likely to pay very high dividends.  The evidence that links CCSVI to MS is very strong and the theory that CCSVI is a causal factor in MS is bolstered by years of independent research that found interesting phenomena in MS patients such as those concerning abnormal blood flows, iron deposition and brain cell degeneration that pre-dates any immune system reaction. The possibility that CCSVI may be a major causal factor in the initiation and progression of MS has given those stricken with the disease the first real hope that the progress of the disease might actually be stopped.  Until now, all we have had available to us are very expensive drugs that sometimes slow the progression of the disease.  The potential payback of this new area of research in terms of benefit to the quality of the lives of MS sufferers is incalculable.

There are MS experts who have gone so far as to call the CCSVI evidence a hoax, or to demand a level of proof of its authenticity that they do not demand of the drug therapies they administer.  I would like to think that these are the reactions of otherwise thoughtful and caring people who have just been confronted by a paradigm shift that throws their entire belief system on its head, that says that much they believed to be the truth throughout their careers might be completely wrong.  However, it should be recognized that MS patients who are seeing their abilities and/or faculties degenerate on a daily basis cannot wait for these experts to slowly change their minds and reach a consensus concerning their previous errors.  Nor can you expect these same unfortunate MS sufferers to be temperate in their reactions to experts who do not even bother to look at the evidence before denigrating the idea that CCSVI could be the most promising new approach to MS treatment seen in a generation.

While I  believe that it is critical that a concerted research effort be undertaken into the nature and treatment of CCSVI as soon as possible, that should not be used as an excuse in delaying the testing and treatment of the condition.  Whether or not CCSVI is a major contributor to the initiation and/or progress of MS, it is a real pathological condition that should be treated.  It is a disgrace that some of the health community go so far as to say that people should not be tested for the condition, much less treated if it is found in a patient.  It is ridiculous that vascular specialists are being dissuaded from treating MSers for this vascular deformity (that almost certainly is not good for the body) just because it has not yet been “proven” to halt the progression of the disease.  Based upon my own research into the subject, I believed that there was a strong possibility that I had CCSVI.  Given the prevailing attitude of the medical community (or at least that part of it that “owns” MS), I have not been able to find an interventional radiologist or vascular specialist to assess me for the condition.  Even if I had found one to do the assessment, there was nobody (to my knowledge, at the time) in Canada to treat the condition if found, in part because these specialists were being “warned off” from doing their jobs on MS patients.  I was forced to go to Poland to be assessed and, ultimately, treated for CCSVI.  I had the financial resources to do it, but many MSers (who are often on disability) don’t.

I hope that this committee can see why CCSVI research is a good investment for Canada, and why assessment and treatment of CCSVI is the right thing to do.

Back to work today...

To the surprise of my colleagues, I went to work today.  I think that they thought that I would be off for a while, not realizing that the "liberation" treatment is not all that invasive or debilitating... the trip and the waiting for tests and treatment were worse than the treatment itself.

I've gotten reports that some of my fellow "graduating class" of the treatment have started to see improvements in their symptoms while others, like myself, have yet to note any beneficial effects that stand out from the day-to-day variations in how we feel.  I guess we just need to be patient: it's only been five days!  My wife and friends say I look better, to which I respond with the words of Billy Crystal (in his take off of Ricardo Montalban): "It's not how you feel, it's how you look... and I look maaavelous!"  ;-)

My Procedure Images

I've figured out how to get the images off the CD that was given to me after the "liberation" procedure.  The images are, in order from top to bottom:

1. Image of my right jugular which was ballooned (but no balloon is shown in this image).
2. Image of my left jugular being ballooned (the narrowed part in the balloon is the location of my malfunctioning valve).
3. Image of the left jugular and balloon again, but now with the stent in place.
4. Image of the stent in place with the balloon no longer visible.

We're back!

Got back late last evening and got a good night's sleep.  Sometime in the next day or so I'll try to post the images of my procedure.  I've got no real improvement news of my own to report, but some of the others who were liberated on the 28th and 29th have good news to tell... I'll post a summary of what those improvements seem to be.

Things to remember

Here are some things that a few of us liberatos had forgotten to ask while we were at the clinic:

1. Were the upper jugulars checked for stenosis? Since all of us had stenoses found in our lower or mid-jugulars, we didn't think to ask whether the upper jugulars (at the backs of our heads) had been checked in any case.  It's very likely they had been checked, but it would be good to be sure since we had come all this way for treatment.
2. Some of us hadn't realized that we could ask the doctor to review the images of the procedure while we were laying there on the table after the procedure while the doctor was there to answer questions.  My doctor had shown them to me and answered my questions, but some others hadn't realized it was possible to do that and didn't ask.  We all received the images on a DVD, but it was nice to review them right at the end of the procedure.
3. Ask for an emergency number to call in case there are any post-treatment worries after you have left the clinic.

Second day after Liberation

It's a rainy day here in Katowice and, since it is a holiday (Labour Day) all the stores are closed and we won't be able to get all those souvenirs and gifts we were planning to give to friends and family at home (that's our excuse, at least).

Last night a dozen of us "liberatos" and spouses/friends had a drink with Marek (who is leaving on an all-around-Poland walk for MS on Monday) at the Sky Bar and then took him out to the Via Toscana restaurant.  That was our first opportunity to meet Tony and his son and Raj and his family.  Tony and Raj had both been treated on Wednesday, so were in Val's "graduating class". It was a fun evening though it ended with a bit of a scare: one of our liberated friends had a fainting spell and was taken back to the Euromedic clinic for tests.  Although she is prone to fainting, the Euromedic people wanted to be sure that it wasn't related to the ballooning she'd had.  She was at breakfast this morning, looking fine.

As far as symptoms go, I am not noticing any differences that can be ascribed to liberation, yet: my symptoms vary day to day (or even hour to hour) so it's going to be a bit hard to tell when some slight improvements occur until they remain for a longer period of time.  Some of the people from the Wednesday cohort have noticed some significant improvements in their symptoms.

Susan, Mary and Raj