Friday, April 30, 2010

I'm back... and liberated!

I'm back from the hospital: stenosis in both jugulars, stent placed in the left jugular after an unsuccessful attempt at using only venoplasty.  In the right jugular it looked like the ballooning would hold fine.  More details to follow: first I have to have a shower and then a nap to make up for last night's poor sleep.  I have to rest up because all the April 29th "liberatos" (and a few from previous days that are still around) have invited staff to drinks and dinner tonight.

No miraculous improvements to report for myself.  A few possible changes reported by a couple of the others from yesterday's intake (7 of us) and more good news from those liberated a few days ago that are still around.  Most of us have the same attitude: this is worth the trouble even if "all" we achieve is to arrest the progression of MS, but we can all hope for "icing on the cake", and reports from others keep us believing that we might just get some of those extras.

It was great to meet Mary (and Richard), Tarja, Susan, Lydia (and Charles), Piotr (and Margareta), Paul (and Lorna), Inge (and Eric) and Val (and her brother Warren)... our brothers and sisters in hope.  I look forward to seeing all of your TiMS updates over the next few months.  Every one we met is invited to our cottage on the Baie de Chaleur - the lobster is on us - hope to see you there, or perhaps at our "6000 km checkup" this fall.

Wednesday, April 28, 2010

MRV Done

 Front of the Hospital Administration Building
I had my MRV done this afternoon at the hospital in Zabrze (try saying that one with a mouth full of crackers!), a gigantic but sprawling health care facility.  I was lucky enough to be the first in our group of three to be done (despite a glitch in the software that required a reboot) so that we got a ride back to the hotel with one of the new employees (Marek's brother).  Poor Susan and Taria... it's going to be late evening for them.
Susan, Ted and Taria awaiting MRVs
That meant we were back early enough to have dinner with charming Inge and her husband Erik (where I followed the directions of other "liberatos" and stuffed myself - I won't be eating again for 24 hours), still leaving lots of time for "the shave" and all the other preparations for my day and overnight stay in the hospital.
Ted relaxing in the MRI/MRV
Tomorrow's the big day, so I hope to get a good night's sleep.  There'll be no blog entries tomorrow, so my next one will be on Friday.  Thanks for all the kind words, everyone... here I gooooooooo!

Eye Exam Done

This morning we had breakfast with Inge and her husband Erik, then went to the eye exam with Taria, Mary and Suzanne.  Besides Maciej and Marek, we had Chris helping us.  Chris is the new guy who will be replacing Marek who is quitting in order to do a MS walk round Poland.

We're all getting the MRV this afternoon or early evening.  Hopefully most of us will be done early enough that we'll be able to go out to dinner together as a group of "liberatos" and hopefuls.

By the way, for those who are following us, Katowice is not a place to come for tourism (though Auschwitz is not far), but the shopping (for both needs and wants) is quite good and the Qubus hotel is well located.

Tuesday, April 27, 2010

What do I believe about CCSVI and Liberation?

I was asked this by a fellow TiMSer... he wanted me to respond to his questions both before and after the procedure. Here is my "before" response:
So what do I believe? Given the evidence so far, I will likely have some kind of stenosis... I am SPMS and even in the Buffalo study 80% of people with advanced MS were found to have CCSVI.

Then, assuming the stenosis is significant, I believe (and it does make sense) that there should be a reduction in fatigue since hypoxia should be reduced. Anecdotal evidence suggests that I may have an alleviation of other symptoms (perhaps my hands will not be so numb, my feet won't get so cold, I may even trip less), but it's not clear why some MSers see these short-term improvements and others don't... how much of this variation is due to the placebo effect and how much is due to the actual variability in the causes and progression of MS?

Over the long term, I hope that the progression of the MS will be slowed or even stopped, but that is more a hope than a belief since we don't have much evidence either way and won't have for years, I suspect.

As far as being nervous goes, I guess my only real worry is that I'll be that one in 5 (or 10, or 20) that doesn't have CCSVI or that, if I have it, I'll be that one in a hundred that can't be treated.

Getting the skinny...

We spent a pleasant evening at dinner with Paul and his wife Lorna.  Paul had the procedure yesterday and didn't get any sleep last night, so he did well to hang on through a long dinner and lots of questions from us... in fact, he was going to have a beer with Marek before he turned in for the evening.  He said that he didn't feel any remarkable sudden improvements, but he didn't expect to at such an early stage and while still recovering from the drugs they give for sedation etc.  However, Paul had a long day and he was still going strong, so unless that is normal for him, being liberated hasn't done him any harm.  Of others I know through TiMS: Inge is undergoing the procedure this evening and Val will have hers tomorrow night.

But now it's getting to be my turn: eye exam at 9 AM, MRV at 3 (or later) - I guess these can drag on quite a while.

In Katowice at last...

We're here!  Our friends left us at our hotel in Krakow (they're staying until tomorrow) and then Maciej picked us up.  Katowice is just over an hour (maybe 80 minutes) from Krakow despite the traffic there which slowed us down quite a bit at the start.  Now I need to hook up with some of the other MSers here.  The important part begins tomorrow: an eye exam in the morning and the MRV in the afternoon.

Vacation is over - going to Katowice today

In the end, we didn't go to the Alef restaurant.  My wife and our friends were too physically and emotionally drained after visiting Auschwitz and Birkenhaus, and I was too tired after walking around a bit.  Instead, it was such a beautiful evening that we ate on a patio on the main square where we had a great (but heavy) meal.  I don't think I've had so much cream since the Ukrainian Christmas meals of my youth.

This morning my wife and our friends are visiting the famous salt mines.  This afternoon Maciej (pronounced Macheck, I think) of Euromedic is going to pick us up at the hotel to take us to the Qubus hotel in Katowice.  I hope to meet quite a few of my TiMS friends there over the next few evenings.

Monday, April 26, 2010

New CCSVI Research Results Summarized on Facebook Site

For those of you following research concerning the relationships between CCSVI and MS, here is nice set of links to recent research findings:!/note.php?note_id=381031542210&id=110796282297

No Bad Pierogis in Krakow

My wife and friends are visiting Auschwitz today: there was no way I could have done the walking required.  Instead I've organized to get my Spanish phone unlocked and loaded with pay-as-you-go credit, then gave Euromedic my local number to give to our driver who'll pick us up tomorrow afternoon.  I've just finished lunch: pierogi ruskie (delicious, but not light) and an Okocim piwo (beer) at a patio on the main square, enjoying the 20 C weather.  Tonight we'll probably go to the Alef restaurant in the Kazimierez quarter: near the Jewish ghetto in the Second World War, and (purportedly) Spielberg's favourite restaurant while filming "Schindler's List".

Sunday, April 25, 2010

A Fine Day in Krakow

Great weather in a beautiful city... Krakow is definitely a place I want to come back to... especially if I can actually walk around to enjoy it next time.  This evening we had a great meal at the "Pod Aniolami" ("Beneath the Angels") restaurant, on 35 Grodzka Street, not far from the castle.  The food was superb and the service was fantastic... if you go there, say "Hi" to Maciej for us. Our friends actually got some great pictures inside the restaurant.

Saturday, April 24, 2010

We're in Krakow now...

What a beautiful city with nice, friendly people!  Frankfurt was a bit of a worry (the special needs people took care of me, but my wife and our friends had to take care of themselves and arrived just as the flight to Krakow was boarding), but we (and our luggage) arrived in Krakow on time and after a nap we walked a bit (a bit is all I can do), took a golf cart tour of the city, and just had a nice meal at a Georgian restaurant.  Tomorrow we visit the Wawel castle.  The important thing is that we're here, and I'll be in Katowice by the 27th, as required.

Friday, April 23, 2010

In the airport in the Big Smoke (Toronto)

I'm on my way! Looks like the Icelandic volcano (the REALLY big smoke) is behaving itself, so we should be in Krakow by tomorrow morning. A few days in Krakow then I find out if the direction of my disease... and life... is going to change.

I'm in "the Big Smoke", with a five hour wait for my flight to Frankfurt. I don't like these long transit waits, but at least it means I'll get my money's worth from this internet connection... no free wireless like we have at the Fredericton airport. 

Me, my wife and our friends are on the way!

Fredericton International Airport

The check-in process was brutal... it took 5 minutes to get through!  Hehehe... love this airport... and free internet, too!

Thursday, April 22, 2010

Now my bags ARE packed...

and, so far, the volcano in Iceland seems to be holding back.  Still getting lots of calls and e-mails and messages - good wishes and hopes going with me... Thanks everyone!

Wednesday, April 21, 2010

Leaving on a Jet Plane...

Well, actually, my bags aren't packed yet and I'm not ready to go, but at least I'm finished marking my exams.  It looks like Frankfurt and Krakow airport are (or soon will be) in full operation, so that should be another hurdle out of the way for our take-off on Friday.  I've been getting lots of best wishes from friends, relatives and fellow MSers who are all hoping that I have CCSVI and that I come back with the kinds of improvements many "liberated" people have seen.  I'd sure hate to disappoint them!

Tuesday, April 20, 2010

Another encouraging testimonial on TiMS...

from "berriesarenice", who just recently returned from her liberation treatment in Katowice, Poland:
Oh yes, I'm here. Thank you for checking on me. I've been without internet since my return from Poland, and Blackberry is awkward for a report that does justice to my condition. I feel amazing, amazing, amazing! I have been running around with my children (I have six) all day, every day since I've been back...the park, hiking, the pond, the farm. I was always able to walk, but the fatigue was so bad I used to lie down at 1:00pm, and be in bed until the next morning. Sometimes I'd join the family for dinner, but usually not. Now I make the dinner.
I don't have words to explain the difference this has made. It feels like I had been swinging a 10x weighted bat...through mud.
Now I find myself taking the stairs, two at a time, and racing my kids across the yard. I jumped on the trampoline with them. I'll give more detail when I'm back on line, but so far, this is way beyond what I imagined. I am so grateful to all of you who were brave enough to go through with this procedure when the establishment was saying to wait, to those of you who educated and gave your testimonies and your encouragement. I didn't fully believe what a difference this would make until I experienced it for myself.

Thank you, thank you to all of you!

Changed the Template

Just to let you know: this isn't a mistake or bug... I changed my blog template to allow for some more width to the posting so you won't have to scroll down as much.  Let me know if you prefer this new template.

Arguing Liberation in the Sherbrooke Record

Below is a copy of an article published in The Sherbrooke Record that suggests MSers should not be rushing into being tested for CCSVI and liberated, followed by a letter to the editor (from my friend who lives in the area) who was very distressed by the tone and factual inaccuracies in the article.  Here is the article itself:
Lamenting Liberation E-mail
By Stephen Black

With the decidedly upbeat headline, “Miracles will happen”, Corrinna Pole reports (The Record, April 1) on a breakthrough treatment for multiple sclerosis (MS). She writes that Dr. Paolo Zamboni has discovered that this debilitating disease is caused by blocked jugular veins draining blood from the brain. He claims that unblocking them can produce rapid and remarkable improvement in symptoms. Locally, a fund-raising campaign has been started to raise the $15,000 needed to send a Townships sufferer of MS to a hospital in India for this operation.
In the Zamboni procedure, a tube carrying a balloon is threaded into the neck veins and inflated. Then a wire mesh stent is placed inside the vein to hold it open. This is an expensive procedure. It is not risk-free. The hypothesized explanation of blocked veins differs radically from what is known about theThat such a fund-raising effort exists does not surprise me. Dr. Zamboni’s achievement has received wide coverage in the media. In particular, CTV news and its reporter Avis Favaro are actively promoting it. Given the publicity and the cruel nature of the disease, it is to be expected that MS patients would be intensely interested in receiving the treatment. Dr. Zamboni provides hope in a field in which there has been little good news.
Yet while the claimed success of this radical “liberation” treatment is not an April Fool’s joke, it might well be, because the evidence for it is disturbingly weak. A responsible medical researcher, no matter how passionately he believes in his treatment, would never allow his work to be promoted in the media as Dr. Zamboni has done. At least not before providing solid evidence of its effectiveness through publication in scientific journals where the procedures and results can be scrutinized by medical experts. cause of MS as an auto-immune disease. These drawbacks might be acceptable if the procedure had established effectiveness. But based on the limited evidence currently available, the dramatic claims may turn out to be a mirage. There are good reasons why the operation is currently neither funded nor carried out in Canada.
Dr. Zamboni’s confidence is based on testimonials of the effectiveness of his treatment and on two published papers. To a scientist, testimonials are the weakest form of evidence, because positive reports are all too easily the result of self-delusion, placebo effects, exaggeration, and occasionally even fraud. Yet they are often the most convincing for a non-scientist. A scientist requires something more rigorous: a randomized, placebo-controlled, double-blind trial (an RCT), such as those routinely carried out in the development of new drugs.
Dr. Zamboni’s 2008 publication is not an RCT but a correlational study. It found that a large proportion of individuals with MS have the abnormalities in the veins which he identifies as the cause, while no abnormalities were found in individuals without MS. But while the abnormality may cause MS, as Dr. Zamboni claims, it is also possible that MS causes the abnormality, or that the individual’s genes are responsible for both MS and the abnormality, but one does not cause the other. In the latter two circumstances, treating the abnormality would have no effect on the disease.
A more recent study of the same kind as Dr. Zamboni’s was carried out by a group in Buffalo but, as it has not been published, few details are available. It is said to support Dr. Zamboni’s findings, but at the same time reports fewer cases of the abnormalities in MS patients than Dr. Zamboni found, and some of the same abnormalities in individuals without MS. This result is not encouraging, because if blockage causes MS, every individual with the abnormality should have MS.
In 2009, Dr. Zamboni published a study of his treatment showing improvement in symptoms. However, the study was not an RCT, and its restrained conclusion was merely that, “The results of this pilot study warrant a subsequent randomized control study”, indicating Dr. Zamboni’s acceptance of the need to validate his claims with an RCT. No one has yet published such a study.
Also, in the 2008 article Dr. Zamboni urges caution, noting, “The hypothesis…seems to be plausible. Nevertheless, additional longitudinal studies are necessary to confirm this hypothesis”. Others are blunt. Dr. Mark Freedman of the MS unit of the Ottawa General Hospital is reported in the Ottawa Citizen as saying, “We need to have the supporting evidence before we start reaming out blood vessels and pretending that this is going to cure the disease”.
Dr. Colin Rose, a cardiologist and associate professor of medicine at McGill, asks on his blog, “The Zamboni myth is… a good example of a surgical procedure that is “tested” on a few patients, proclaimed as a cure with no controlled trial, and then gets done on thousands of patients at great cost…Why do surgeons have this power to ignore science?” Dr. Paul O’Conner, a neurologist and specialist in MS at St. Michael’s Hospital in Toronto, comments in the Edmonton Journal that “the theory…is held by a very small group of people only”.
What about the dramatic improvement claimed for the treatment? Researchers in Poland and in Jordan have reported positive results, which remain unpublished and therefore unavailable for scrutiny. But even so, they are hardly dramatic, consisting of “remembering dreams again…reductions in fatigue, and an end to ringing in the ears”.
Most disturbingly, a trial of the therapy at Stanford University was cancelled when one of the patients died of a brain hemorrhage on the way home after treatment, while another required emergency life-saving surgery when a stent became loose and lodged in the heart.
There is a sad history of quackery in medical practice, of desperate patients deluded into believing they can be saved by untested treatments which in reality impoverish them and shorten their lives. Surely, all sufferers of dread diseases deserve a cure. But “faith and hope” alone will not accomplish this. The enormous success of modern medicine is due to its insistence on scientifically-acceptable evidence. Such evidence is not yet available for Dr. Zamboni’s treatment.
The only way in which anyone should contemplate submitting themselves to such an operation is within a carefully-planned and monitored clinical trial, where the patient has at least some protection against harmful outcomes, and where the results can provide critical information for everyone about the value of the treatment. This, as it happens, is also the recommendation of the Multiple Sclerosis Society of Canada (see The Society also provides a responsible and thoughtful analysis of Dr. Zamboni’s work and its implications. It does not include a recommendation for expensive treatment at a hospital in India.
And here is Shelley's letter to the editor:
Mrs. McCully,

I don’t know if you personally know anyone with Multiple Sclerosis – if you do, being the editor of The Sherbrooke Record, I can only imagine that you felt heartsick after reading (and allowing to be published!) Stephen Black’s article entitled, Lamenting Liberation. If you don’t know anyone with MS, you should feel heartsick and you should also feel ashamed for allowing such rubbish to be published, not just because of its cruel and sarcastic tone towards a sick woman hoping for help after years of suffering with one of the most frightening diseases known to mankind, but because it is beyond flawed and inaccurate. I am sick to my stomach from reading such self-indulgent, inaccurate, misinformed, and biased rhetoric that Mr. Black considers journalism. I don’t know where he was schooled in journalism, but perhaps he missed the lecture on accuracy and fact checking >Dr. Zamboni does NOT yet endorse the use of stents in regards to the Liberation procedure. He believes balloon angioplasty is the best way to proceed with caution in treating blocked/narrowed veins at this time. And the complication with the patient in the US who died of a brain hemorrhage shortly after being treated was due NOT to having been liberated, but rather, her death was instead a result of an adverse reaction to the prescribed blood thinners, due to a genetic condition. Her family spoke out in support of the Liberation Treatment after her death for God’s sake! Mr. Black should focus his time and attention on learning what the true facts are, rather than disparaging a local woman’s hope to be helped from a most debilitating illness. He should be aware that her hope of being treated happens to be shared by over 2.5 million people with MS worldwide, over 70,000 of whom happen to live in the same country as Mr. Black. There will be a march on Parliament Hill May 5th to get the message out to ignorant Canadian naysayers like Mr. Black that it is time to say NO to drugs and YES to medical interventions that actually cure and/or halt the disease process of MS. Canadians will be marching in major cities across the country in support of CCSVI testing and the Liberation Treatment. What an education Mr. Black will get if he watches the news that day – I’m assuming he isn’t a religious follower of the news.

This article can certainly help to educate him on the subject of CCSVI/MS/Liberation since he took it upon himself to speak with authority on a subject he clearly knows little about.  It is from Macleans- surely he has heard of this publication.

I wonder if Mr. Black had blocked veins in his neck, if he would like to have them opened up to allow better blood flow to his brain? Would he scoff at an angioplasty procedure on narrowed/blocked veins if it could spare him his sight, his continence, his intellect, and his mobility? He appears to suffer with vein blockages in his heart and in his brain – no compassion or open-mindedness seems to flow through them. Too bad there is no “liberation” for this ailment.

I welcome this letter to be published in your newspaper. You may use my name.

Shelley Black

P.S. Since I don’t have his email address, kindly forward this email to Mr. Black.

A Liberation Procedure Done in BC

First Dr. MacDonald in Barrie, and now Dr. Godley in BC... it's really happening in Canada!  I hope that this is just the tip of the iceberg for the availability of CCSVI testing and the procedure here, so all MSers will o be tested (and fixed, if appropriate) without going overseas:

Sunday, April 18, 2010

Dr. Simka's Views on Liberation and Stenting

Although the opinions of Dr. Simka on this page were in response to a TV show in Alberta, they do give you some ideas about why "liberation" should be done sooner rather than later, and why using stents can be very appropriate in the right circumstances:

Flight to Poland: Up in Ashes?

So now, on top of everything else, we have to worry that flights through Frankfurt and into Poland will still be canceled when we are scheduled to go this Friday.  As someone who is supposed to be flying to Poland through Paris this Tuesday said: "I could have thought of many reasons for not having the procedure - but a volcano wasn't one of them!"

Wednesday, April 14, 2010

Web Cast - Zamboni and others at the AAN conference in Toronto

Too much information... at least that's what it feels like.  The MS world is all abuzz about the latest information coming out of the American Academy of Neurology conference in Toronto.  Zamboni was grilled by neurologists but held his own.  Zivadinov gave more details about the Buffalo study and some explanation of why that study's results were more equivocal than what Zamboni and Simka and others were finding.  For those who want to see the web cast, here is the link:  But from what I can tell from the reports of others, these are the main points to come out of it:
  1. Zivadinov reiterated that, in the main, their Buffalo study corroborated what Zamboni had found: the majority of MSers have CCSVI, - something like 70% for SPMS and PPMS people.  Their numbers were lower than Zamboni's findings, but that could have been due to the testing method... and new equipment that they now have will probably help them find CCSVI, so those numbers will probably go up
  2. They all agreed that more study is needed, but Zamboni did suggest (bravely, since he was in a room full of neurologists) that some people should be able to be treated NOW for compassionate reasons.  As I said in the CCSVI facebook page: "Given that the evidence seems to indicate (and it's common sense) that the longer you are untreated the more irreversible the damage will be, I don't see why anyone who has looked at the risks and uncertainties of "liberation" and decides to go ahead with it should be dissuaded from doing so. Seems to me that a pretty high proportion of MSers would be eligible for compassionate treatment."
  3. Zamboni did make a point that desperate MSers shouldn't go to just anybody to be treated... people need to be careful.  He also still doesn't believe in using stents... yet, since nobody knows the long-term implications.
  4. Venoplasty of the azygous vein is very effective - they rarely close up again.  And, apparently, there is some evidence that the rate of restenosis of jugular veins can be reduced with more effective methods.  This would mean that the (more dangerous) stents wouldn't have to be used as often.
If, over the next few days, I find any more useful summarizing information, or a good summarize source, I'll paste it here. But I give my exam tomorrow, so may not have much time to do it, so if anyone else finds a good source that distills all the information, or thinks I missed an important point, let me know.

ALSO: Here is a different summary AND more detailed notes on the CCSVI facebook site:!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?v=app_2347471856

Dr. Paolo Zamboni on CBC's "The Current"

I'm going to paraphrase from memory, but here is the most exciting thing that Dr. Zamboni said in his interview:
We don't yet know what class of MS patient will benefit most from the liberation treatment, but I am sure that the majority of liberated MS patients will gain an improved quality of life from the procedure.
 If you missed the show, they should have the podcast on-line by tomorrow at this link:

The famous (infamous?) Dr. Freedman is interviewed in the second part of the program.  His skepticism, while still strong in this interview, is much more toned down and reasoned in this interview (no more talk of a hoax).

Monday, April 12, 2010

Liberation Stories on CBC Tonight

You may want to catch these stories on the CBC outlets tonight (sent to me by an MSer in Ottawa):
The CBC story (on the Liberation treatment) is on tonight. There will be a story in the news section (at 10 pm, or 9 pm on Newsworld), and then the documentary about the woman we followed to Poland to have the procedure.
There will also be stories all day on CBC Radio, including a piece on The World at Six.
And the local CBC TV stations will probably carry a news item about all of this on their supper hour shows as well.
Here is a link to an on-line article and associated videos:

Sunday, April 11, 2010

Naysayer's Hypocrisy Revealed

If you saw last night's W5, then you'll remember that Dr. Freedman, who called CCSVI a hoax last fall, seems to be backtracking on that statement, though he still feels that too much attention is being paid to it and the "dangerous" liberation treatment (which has seen one death in a patient with a pre-existing condition after 300 or more procedures).  However, when W5 asked him just over a year ago about his own experimental treatment that caused the death of one out of the 7 patients that tried it, he appeared to be much more accepting of the fact that in such experiments, "death is a possibility" or, to put it another way, that sometimes to make progress we have to take risks.  In fact, I agree with that, but I find it awfully hypocritical that he would then try to disparage a treatment that is, according to all evidence, much less risky than the one he was involved in.

See his earlier remarks (and information about the treatment he championed) at:

"Liberation Wars" on CTV's W5: now online

In case you missed the show, here is what aired last night (it's quite well done):

Preparing for Liberation - One Way

I know, it sounds like I'm going to write about travel details (what I intend to pack and so on), but that's not what I mean by "Preparing for Liberation".  I'm talking about trying to stay in shape so that if you are liberated and you start to see improvements in such things as balance, mobility and energy levels, you have the muscle tone, strength and endurance to be able to take maximum advantage of that.

I work out at the gym about an hour every day and have done that for several years now.  Until last December I was doing it only in the hopes of delaying the effects of the disease a bit or just better coping with my disability.  I have to tell you, it was darn hard to keep going to the gym every day with the main goal only being to keep from going downhill faster.  As it was, I had to stop working out on the treadmill (too dangerous) and I can no longer do 20 minutes straight on the elliptical machine.  My weights haven't changed as much, but after all this work-out time they haven't gone up, either, and I can certainly tell that my left side is way weaker than my right.  At the suggestion of a physiotherapist, I started doing some ball core work and increased my stretching.  Even with all that, I came to find out from my physio last week that my left hamstring is very weak: I could hardly lift my leg.  My quads and other muscles are pretty good (considering), but I have to work on my left hamstring because the way I "hobble" now when I walk doesn't make that muscle work.

But this is my point: now that there is a chance that I'll be liberated, I'm SO glad that I kept up my workouts and visits to the physiotherapists.  So here is my advice to everyone with MS:

  1. Don't give up hope.  CCSVI may not be ALL of the answer, but I'm sure it's part of it.
  2. Keep in shape.  Keeping in shape doesn't stop progress of the disease, but it helps you cope and also gets you ready to start making improvements once you've been liberated.
  3. Use the services of a physiotherapist, one who either knows how to work with MSers or is willing to learn.  A physiotherapist will help you to figure out to use your limited energy to your best advantage as you work to keep in the best shape you can be for "liberation day".
It's never too late to start.

Friday, April 9, 2010

Two Weeks to Go... and Symptoms

Gee, in two weeks I'll be on my way to Poland.  It's got me thinking that I should write up an "inventory" of my symptoms so that if/when I am "liberated" I'll be able to track any changes that occur.  So, let's see:
  1. My left leg is weak and somewhat unresponsive, with a definite "dropfoot" tendency when I walk.  Since I've had this symptom for more than two years, my muscles in the entire leg and buttock are weaker and smaller than those on my right side, despite the fact that I exercise at least an hour almost every day.  I can now only walk a few hundred feet and use a cane when I do that.  Walking any short distance around campus (which has lots of slope and stairs) feels like an expedition.  Over the last few weeks I've been trying an electronic "walk aide" and then a brace lent to me by the physiotherapist at the rehab centre.  I'll decide about them after I get back from Poland.  By the way, I've been working with the physiotherapist to establish some mobility benchmarks, so any improvement I might see after Poland can be more objectively measured.
  2. I sometimes get the strangest feeling, like something between a shiver and a slight seizure of some muscles when I do things like get up out of a chair, stick my foot in cold water, or accidentally stand on some small object with a bare foot (walking on crushed rock in my bare feet is absolute torture).
  3. Both hands are always numb... like the feeling you get when you're hands have been exposed to very cold wind or water for too long.  Some days it's mostly just the numb/tingly feeling with a sense that I have lost a lot of sensation in them (like I'm wearing rubber gloves), while other times it gets so bad that they feel like hams at the end of my forearms.  At those times both arms also feel heavy, like they're made of concrete.  At all times now I find I drop things from between my fingers without realizing it's happened.  On bad days I find that I have trouble with eating utensils slipping out of my hands or turning around in them.
  4. My fatigue varies considerably from day to day and week to week.  Some (rare) days I only have a few spells of suddenly feeling quite tired, but on bad days I might have to have several naps during the day, with a feeling of such fatigue that I can hardly keep my eyes open.  On the other hand, I almost never get to sleep without using a sleeping pill.
  5. I always have a pain or irritation in my left hip, which at its worst can be a radiating burning (sciatica) pain all the way down to my heel that lasts so long that it upsets my stomach.  At its best it's an irritation that makes it uncomfortable to sit still any length of time.  This symptom might not be directly an MS symptom, but rather a result of my unnatural gait.
  6. I haven't had as many "bathroom problems" as I did a few years ago, but then I've been taking pills that mean I don't feel I need to "go" as often as I did in the past, so that might be part of the improvement.  Of course, one of those pills that didn't work out gave me a really dry mouth and throat, and seems to have resulted in a chronic post-nasal drip... or at least I hope that's why I've had more swallowing difficulty since I tried that pill.
  7. Although I've had the feeling that I've been getting more forgetful (names, words), I did do a battery of tests where I was found to be OK "for a guy of my age"... I guess I can't blame it on my MS after all.
  8. I notice that I haven't had those phantom pains (especially in my legs or groin), the ones that feel like someone stuck a pin in you, as often for the last year or so.
  9. On the other hand, I have been experiencing cold feet and, to a lesser extent, cold hands.  It's a feeling that comes and goes, but at it's worse my feet feel like blocks of ice, to the point that it feels painful.  Not only do my hands and feet feel cold to me at those times, but they are cool to the touch, as well, according to my wife.
  10. The back of my neck (just below my skull) seems to be always sore/stiff lately... but maybe that's just something I've noticed more since I learned about CCSVI.
  11. I've had my eyesight checked recently, and though I no longer have the "better than 20/20 vision" of my youth, it's probably just deterioration related to my age.  Nonetheless, my optometrist is going to give me a copy of the results of the battery of tests he did so that I can take them to Poland with me.
  12. Something that I haven't had for a long while (or at least as badly) is heat intolerance, which manifested itself as great fatigue and lethargy if the weather was very hot.
Well, that's all I can think of (that I want to talk about) - if I think of anything else I'll edit this post.

"Liberation Wars" on CTV's W5

CTV has announced that they will show a new W5 episode on CCSVI and the Liberation therapy on W5, tomorrow at 7 PM.  See the preview of this episode at:  This should be interesting, since it looks like it will focus on the conflict between the Canadian research and medical communities that wish to study links between CCSVI and and MS, and MS patients that want testing and treatment now.

Wednesday, April 7, 2010

But wait...

No, wait, not so fast because this Kuwaiti Times article published today seems to be saying that neurologists put pressure on the government and the program (which has only been a trial, to date) has been suspended: 
As well, that number of 6000 must be a typo... other sources say there shouldn't be more than 600 in Kuwait, though an influx of Palestinians seems to be making that grow... more evidence that MS is genetically based, with Caucasians having a greater risk of MS.

Wow! Kuwaiti goverment asks Zamboni to advise on CCSVI testing (and treating) of all citizens with MS

As reported in TiMS (
I have just received a message from Zamboni: the Kuwait government has decided to treat all its 6000 MS patients with angioplasty at the rate of 10 a day and has asked him for technical assistance.
This is the break-through we all were waiting for and, even if it will not benefit MS patients in the western world immediately, it will certainly pave the way for converting sceptics in the future.
This is HUGE!  Certainly puts other governments and MS Societies that are actively discouraging CCSVI treatment (or even assessment) in a bad light.

Tuesday, April 6, 2010

Some MSers are angry enough to contemplate suing

Here are two thought-provoking items, one related to the medical establishment's "duty of care" and the other a thread concerning the arguments for a class action suit based on the idea that MSers are being denied testing for a venous abnormality because they have MS:
Some MSers are getting riled up... and I don't necessarily blame them.  Although I haven't studied either issue enough to feel justified to offer a strong opinion one way of another, what I have heard about the actions/declarations of some medical professionals, government departments and societies does make me think that there might end up being some substance to the points being argued.

MS Society advises... "Do Nothing"!

Here is a very telling thread about where the MS Society of Canada stands on CCSVI:  They are really trying to staunch the demand from MSers to be tested for CCSVI.  Only a very small number of people will be able to be tested under "an established research regime", so they are effectively dissuading private clinics from even providing the service according to the Zamboni protocol.  I am going to have my opportunity for testing and treatment in Poland in three weeks, but in infuriates me to know that the MS Society of Canada continues to advise most of the 70,000 MSers in Canada that they shouldn't even be tested!

Back from the Cottage

It was a wonderful Easter long weekend: a wonderful place on the Baie de Chaleur, unbelievably mild weather, good food, good friends... and hope.  While I was there a local MSer who had contacted me previously by e-mail came over to visit with his wife and youngest daughter.  He has had MS for almost 25 years, most of it RRMS.  Although not officially re-diagnosed, he is fairly certain that he is now well into SPMS.  He says that five people in his family (including cousins) have MS.  (That's a second group of five cousins who have MS that I have heard of in that small area of New Brunswick).

He told me his neuros (in Montreal) are both speaking out forcefully against the CCSVI theory.  He asked for my advice. I told that him it's his life and he has to make his own decisions about what is best for him: it's the rest of HIS life that will be affected, not those of the doctors.  I said that going to Poland makes a lot of sense for me in my situation.  I've studied it a lot and though there are still many unknowns, the preponderance of evidence points to a treatment that can improve some symptoms or at least maintain my quality of life for a lot longer.  I told him that it makes very good sense for him to get on a list as soon as possible, and do some research online so that he can come to his own conclusions about the risks, potential benefits, and the probability of each.  He can always decide not to go in the end, but at least he'll have that option.

I didn't see this posting before I talked to him, but it talks about someone 5 months after "liberation" who has dramatically improved her quality of life:

Friday, April 2, 2010

Euromedic Poland starts a Facebook Page

In order to improve communication with patients, Euromedic Poland has started a Facebook page - I' even had a "chat" with them.  Among other things, they are posting news articles, such as this one on CTV Ottawa:

A Happy Easter for Badger

"Badger", a TiMS contributor from Glasgow has this to say, a few days after he has been liberated:
I feel like I have been born again, I can't believe the improvements, I seem to feel more and more active every day.

This is all for real and no drugs are involved.

I hope for all of my fellow MS sufferes that they are also soon to receive this procedure.

Happy Easter