Insurance for Medical Travel

In case any complications occur after I get the liberation treatment (assuming I am eligible to get it, of course), I have been looking into insurance for medical travel. There is at least one US company that seems to provide some kind of insurance in case of medical complications overseas which is used by a Canadian medical travel agency called Surgical Travel Canada. The application form for this special insurance can be found at: http://www.surgicaltourism.ca/Medical%20Travel%20Insurance%20Enrollment%20ID%20-%20011609[1].pdf

Most insurance companies won't touch this kind of travel with a 10-ft pole, I suspect, since it is much riskier than ordinary travel insurance, which won't cover pre-existing conditions, much less travel for medical treatments. Of course, Canadians are probably  better off than US citizens in this regard since our medicare may cover some of the expense of an extended stay in hospital in Poland because of complications arising from medical treatment.  Of course, our Medicare will pay nothing towards the liberation treatment itself because it hasn't yet been proven to be an effective treatment for MS.

In any case, I am first going to find out what Medicare will cover in case of complications.  If our Medicare does pay for most of the expense for an extended stay in hospital in Poland, I may not bother seeking out the private (and probably expensive) medical travel insurance.  However, if it does appear that I need this private insurance, I'll look into the "bona fides" of this insurance company more deeply.

A Christmas of Hope

My wife and I are enjoying ourselves talking about how this may (hopefully, will) be the last Christmas for many things: the last Christmas I can't go out for a walk with her, the last Christmas that I don't have the excuse of my butt/leg pain to keep me from midnight mass, and so on.  It's an ongoing subject of hopeful speculation and joking for us.

Of course, assuming CCSVI is found and I do get the treatment and it helps, it is still likely that I will have some disabilities to the end of my life... but it's nice to hope.  And finally there is a reason to hope.  You forget how much you've come to accept a diminished future until you find some real chance that it doesn't have to be that way.  Hearing stories of people with MS who had the liberation treatment and are finding significant improvements in their symptoms has given us reason to hope that it could be that way for me, too.  One story (http://www.thisisms.com/ftopic-8942-0.html) is of someone who has been in a wheelchair for the last six months, had the Liberation treatment in Poland this month, and is starting to walk again - and I'm not even in a wheelchair, yet!  Other treated people talk of "two steps forward and one step back" and that is more sobering... but even that is much more hopeful than an unrelenting deterioration.

Merry Christmas, everyone!

More news from Poland

On Friday I received a reply from Dr. Simka regarding some questions I had asked a few days earlier:

• Q: I'm assuming that I can schedule the assessment and treatment (if appropriate) to happen all in one trip to Poland, is that right? Where will the assessment(s) and treatment take place (so I can choose the most appropriate hotel nearby)? How do I pay - are credit cards acceptable? A: I will send you detailed information regarding date, hotels, payments etc. in a proper time.  The hospital is in Katowice, the nearby airports are in Katowice and Krakow.

• Q: How long should I plan to stay in Poland after the treatment date? What drugs will I be required to take after the treatment, and for how long? Is it necessary to do a follow-up check-up at your clinic? A: You should plan at least 7-days long stay in Poland (at least 3 days post-op).You will get all necessary prescriptions and instructions how to use medications, as well as if and when to come for a follow-up (all these depends on the type of operation and patient's characteristics).

• Q: You gave me the costs of the assessments and treatment, but it is not clear if it is necessary to have the Doppler as well as the MRV, or if an MRV removes the need for the Doppler. A: Doppler in our centre is the main diagnostic tool, while MRV gives some additional information, which is important during the operation.

• Q: Could there be any additional costs besides the ones you quoted in the previous e-mail? A: The pricelist, in general includes all costs, however it is not possible to predict which type operation will be needed in particular case before diagnostics.

Then I asked him if it was possible to have my visit scheduled for late April, giving me time to finish giving my courses and exams.  He said that he would schedule my assessment/treatment for late April or early May.

Westmount Square Medical Imaging

My neurologist called.  She talked to Michael Baranyai at St. Mary's this morning.  Apparently he is working (part time) for a private radiology clinic in Montreal (514-939-9764).  They are doing Doppler ultrasounds ($250) and are just now studying how to reprogram their MRIs for MRV.  My guess is that they are going to have that ready before it is done at St. Mary’s (surprise surprise).  For myself, I want to know if there may be some things (such as a bone growth pinching the jugular vein) that might mean Dr. Simka in Poland can’t do anything for me.  So, if I’m going to go to Montreal, I might as well get both Doppler US and MRV done at the same time.  That means it probably will have to be the private clinic for me.

Later: I called the "Westmount Square Medical Imaging" clinic.  They don't yet  know when MRVs will be available, or what the cost will be. They'll call me when they know.

Maybe no referral

Talked to my neurologist today.  It's not clear if she'll give me a referral to St. Mary's Hospital, but she did say she would call them tomorrow to find out more.  I would like to go there before I go to Poland in case it's something like bone growth pinching a vein, in which case the people in Poland may not be able to anything... or give them more time to come up with a solution.

More about St. Mary's

I just found out from another MSer (thanks, Shelley) that I should get my referral into St. Mary's as soon as possible if I want to get my assessment done there in January (or maybe ever, if they get deluged).  I'll call my neurologist's office tomorrow.

• Michael Baranyai, Vascular Lab Technician (514) 345-3511 (ext 3682)
  
• Morena, Secretary booking Doppler scans (514) 734-2621
• Morena’s fax # at the Vascular Department (514) 734-2659

A question not yet answered: can we book the MRV (actually MRA, Magnetic Resonance Angiography, which Michael says is the same thing) with them, as well?

CCSVI Assessment in St Mary's Hospital

Today I received a reply from St Mary's Hospital in Montreal:

Unfortunately, there is no formal CCSVI study currently being conducted at St. Mary’s. What you heard about was in fact a one on one exchange between a patient and a dedicated family physician with an interest in the topic (from what I have been able to gather).

Several recommendations:

1. Speak to your own family physicians to see whether he/she is familiar with the work currently being conducted in the field. Perhaps he/she can help you book an appointment for a scan, and can help interpret results - or can link you to someone who can.
2.  I believe there is currently a formal study being conducted at McMaster (http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121) - you may try getting in touch with someone there. I unfortunately don’t have any additional information. 
3.  You may try to contact the vascular lab (for imaging/scans of the vascular system) at St. Mary’s hospital (with Michael Baranyai) – but I am afraid they may not have much more information for you. 514 345 3511 ext 3682. 

Well, that looked like a false lead.  But being the dogged person I am (stubborn?), I decided to make one more call, to Michael Baranyai.  Very luckily (he said), I caught him at his desk.  In fact, his lab IS doing the doppler and MRA (angiography, which he says is the same as venography) and though he has lots of experience with imagery (since 1986), he is on a steep learning curve with respect to CCSVI, doesn't assume that he has the expertise of Haacke, Zamboni, Dake or Simka, but is willing to do the assessment for me sometime after Christmas.  I need a referral from my doctor here in Fredericton.

By the way, I asked if he wanted me to remove his phone number from my posting, but he said it was OK because his phone number is already out there in the Internet.  Won't put out his pager number, though.  :)

More related research findings

Reading another TiMS thread (http://www.thisisms.com/ftopict-7708.html), I found this quote:

• Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. This slowed perfusion has been linked to fatigue in MS patients.

 In this thread there are also good summaries of the research on other effects of "hypoperfusion" and related research results.  Very well written, concise... there are some very talented volunteers working on various aspects of CCSVI in the TiMS forum.  This thread, along with the one focusing very narrowly on CCSVI research (http://www.thisisms.com/ftopict-7098.html), could be considered a MUST READ for people trying to understand the evidence for CCSVI being a primary cause of MS.

Another interesting CTV story

Someone in TiMS pointed out another interesting recent story by CTV.  This story makes two important points:

1. the initial (negative) reaction of much of the medical community and MS Societies worldwide may be an example of the "Semmelweis Reflex", named after a Hungarian doctor in the mid-1800s who was ridiculed by the medical community for advocating hand-washing by medical staff to reduce the possibility of a very dangerous form of infection that killed many women after childbirth.
2. there is additional evidence from research in Canada and Britain that iron oxide in the brain leads to the damage of nerves.

 The story can be found at: http://healthblog.ctv.ca/post/Iron-Multiple-Sclerosis-and-The-Semmelweis-Reflex.aspx. Maybe I should change my preferred news source from CBC to CTV.  :-)

St. Mary's Hospital in Montreal

There was a post in a ThisIsMS.com discussion thread that said that a team at the St. Mary's Hospital in Montreal is doing a study on CCSVI, using doppler ultrasound currently, but will also be doing MRVs sometimes in the next few months.  After looking at the hospital site, I found a general contact name (manon.deraad@ssss.gouv.qc.ca) who I hope will point me to the appropriate person to contact about the study.  Although I sill be going to Poland for an assessment (and perhaps treatment) in April, it would increase my comfort level if I knew about any possible occlusions ahead of time.  Besides, they might want someone in the study who is scheduled to go to Poland.

Petition

A petition is being circulated for Canadians that wish to push Health Canada to step up investigation of CCSVI and to make the liberation treatment available to people with MS: http://www.gopetition.com/petitions/the-liberation-procedure.html


Unfortunately, I don't like some of the wording in the petition.  My problem with it is that it appears to say that MS is not an autoimmune disease, but what I've gleaned from the ThisIsMS forum is that though the initial cause may be CCSVI in most cases, the reaction of the immune system to the iron passing the BBB and the brain cell damage then takes it into an autoimmune disease phase. So setting ourselves up as being "anti-autoimmune disease" is not what we want to do.

More testing sites and studies

MSers all over the world have been organizing to pressure MS societies, researchers, doctors and health officials to take the CCSVI theory seriously.  In Canada one private clinic has started doing CCSVI testing (though it's unclear if they know what they're doing at the time I write this) and talk of another opening in Gatineau in the NewYear.  It appears that researchers in Amsterdam want to do a study (after talking to Dr. Haacke of McMasters U), and it looks like something similar may start up in Western Australia.  US MSers are organizing letter-writing campaigns to get other American research centres to study CCSVI.  They are also "catologuing" big name researchers and clinicians according to whether they are open to the idea of CCSVI as a possible cause of MS.

Certainly there is a lot of suspicion (to put it mildly) that many doctors and researchers are either in the pockets of "Big Pharma" or have so much invested in the "autoimmune theory" that they aren't being open-minded.  It gets quite nasty in some of the discussion boards, and some of the comments in a CCSVI Facebook site had to be deleted: someone reported the comments as abusive.

Unfortunately, while a few of the suspicions might have a basis in fact, I worry that for some people it is becoming more about the battle than about finding out the truth about CCSVI and MS.

And I should point out that if CCSVI truly is what instigates MS, nobody is arguing that it doesn't also become an autoimmune disease after the effects of CCSVI (especially iron passing the blood-brain barrier) begin to result in damaged brain cells... it seems that it is well known that damage to axons (which the iron would cause) results in an autoimmune reaction, which then goes on to cause its own damage as it "over-reacts".  In one interesting discussion thread, someone proposed the hypothesis that the CCSVI induced inflammation is what causes relapsing/remitting (RR) MS because the damage is temporary, but as the CCSVI condition continues, the iron in the brain and the auto-immune reaction kick in, resulting in the permanent damage seen in secondary progressive (SP) MS.

There have also been a few posts where a small number of MSers have indicated that CCSVI wasn't found in their assessments, so maybe there is still another way that MS is initiated, even if CCSVI is found to be the usual cause.

I'm on the list!

I just received a message from Dr. Simka: I'm one of 25 people that have been informed that we are scheduled for assessment and treatment in April, 2010.  April actually works out fairly well, especially if it's later in the month, after the exams in my courses. We get our specific appointment dates in a week or two.  This is the real thing!

Since it was a mass mailing to all the people scheduled for April, I didn't receive any answers to the questions I'd asked.  I presume/hope that I'll get some answers with my specific appointment.

Waiting...

As I said in an earlier post, I’ve sent my request for an appointment (along with some questions, see below) to Dr. Simka, and am waiting for a reply.  Now that Dake in Stanford has been stopped from doing the treatments, and Zamboni will apparently only treat Italians (for now, at least), Simka’s team is the only option available to Canadians at this time.


My questions for Dr. Simka:

1. I’m assuming that I can schedule the assessment and treatment (if appropriate) to happen all in one trip to Poland, is that right?
2. Where will the assessment(s) and treatment take place (so I can choose the most appropriate hotel nearby)?
3. How long should I plan to stay in Poland after the treatment date?  Of that time, how much time will be in the hospital?
4. Given your experience, what are the possible complications I might have to worry about?
5. What drugs will I be required to take after the treatment, and for how long?
6. Is it necessary to do a follow-up check-up at your clinic?  When?
7. You gave me the costs of the assessments and treatment, but it is not clear if it is necessary to have the Doppler as well as the MRV, or if an MRV removes the need for the Doppler.
8. How do I pay – are credit cards acceptable?  Could there be any additional costs besides the ones you quoted in the previous e-mail?

Also, I did get a reply today from Dr. Haacke, saying he would be starting doing tests for CCSVI after the New Year and that I should be patient, allowing the scientific method to be applied to test the CCSVI theory.  I replied that I understand the necessity for using the scientific method but that, given my increasing rate of deterioration, if I had the opportunity to seek assessment and treatment somewhere soon, I would.

Medical Tourism

Kerry also pointed me to a couple of threads that shoud be of interest to those who are considering travelling for assessment and liberation treatment. Opportunities for this is sparse at the moment, but as long as the results of liberation treatments continue to be positive then demand will grow and other private clinics will offer these services. Here are the two discussion threads:

• http://www.thisisms.com/ftopict-9146.html
  

• http://www.thisisms.com/ftopict-9188.html

CCSVI Assessments in Vancouver

For those Canadians (and Americans) who do not currently have access to CCSVI assessments, here is news from a fellow MSer about CCSVI assessments being undertaken on the west coast (thanks, Kerry):

• http://www.nationalsurgery.com/ is the main web site for False Creek Surgical Centre in Vancouver. National Surgery has a facility in Winnipeg too (Maples), but I do not know if they are on it. Vancouver is much nicer...
  

• FCSC is offering the MRV for $2079, Doppler for $499, or both for $2300. If you have not a doctor to sign the requisition, False Creek has 2 staff doctors who will give MS/CCSVI people the requisition for free. They only do the scanning twice a week (I believe on Monday and Thursday), and I think that they can do 4 per day. I do not know yet whether they are up to speed on the vagaries of the diagnosis, as no one has reported yet. Purportedly, they have done 4 yesterday, and there was at least one confirmed. I hope to call them tomorrow to inquire further. (as you may, or may not know, the diagnosis is the tricky part, intervention seems to be straight-forward.)

• This is totally private-pay at this point, but at the very least, the associated costs ought to be 100% tax deductible. Yasmeen has mentioned the possibility of a class-action suit in the future to recover costs. I am not the litigious type, but there you are...
  

• If you are interested, there is a consultant local to Vancouver (Yasmeen Sayeed) who has done a lot of leg work already. She sets up treatment in other countries - such as India, Germany, etc., and has been very helpful. She has a vested interest, as she is in business, but I am impressed with her so far. She is pro-active, and I think at this point, is building good will, with a longer view than a few quick bucks. I have been communicating with her several times a day since last week, and feel that she is totally legit. I am sure that you can contact False Creek yourself, or, if you need more, Yasmeen can arrange travel, accommodation, referrals, appointments, etc.

• For full disclosure, I have no interest in her consultancy business, and expect to receive no considerations of any kind from her. If you do enlist her, I have not checked her out with the Better Business Bureau, or such, though I would before contracting her for anything. She has agreed that I can share her communications with me, and if you would like, I can forward them by e-mail. I will include her contact info. here none-the-less. Although I have no agreement with her, if you do contact her, please let her know that I referred you, just so that she knows that I am acting in good faith.

As I enter this, I'm reminded that several discussion threads have referred to radiologists that did Dopplers and MRVs but didn't really know what to look for in order to properly diagnose CCSVI. Therefore, until we can get more information about the qualifications of the people doing this, anyone considering getting assessed at FCSC should request information about their bona fides. If anyone out there has information about this, please let me know.

First serious stent complication, liberation treatments stop in the US

Well, it had to happen sometime, I guess... one of Dr. Dake's patients (in California) that had a stent put in his jugular had it move to his heart... and he required open heart surgery. "Radeck" was a recent recipient of the "liberation" treatment by Dr. Dake, and his run-up to the procedure was closely followed by the CCSVI proponent community. His story (partly in his own words) can be found here: http://www.thisisms.com/ftopic-8928-days0-orderasc-0.html. He seems to be recovering nicely, but Dr. Dake has stopped doing the treatments - presumably because of liability issues - causing a groan of anguish from those who were in line to get the treatment at Stanford. I wonder what this might mean to those of us who are hoping to get treated by Dr. Simka in Poland?

That is the first serious complication after 60 operations (worldwide) using stents - according to one MSer's count. I think those are not bad odds, but I can certainly see why that is going to stop the liberation treatment using stents from occuring in the US.

By the way, in the link above there is a good explanation as to why stents in veins are more likely to migrate than stents in arteries.

PS: I sent my request for an appointment to Dr. Simka tonight.

CCSVI - Just the facts and other useful threads in the ThisIsMS site.

While I have already referred to the WWW.ThisIsMS.com discussion site, I've only described particular "threads" of the ongoing conversations. I should have mentioned that there is a more structured way of looking at the threads and then following some that are of value to your information search. The overall topic area (CCSVI and the Liberation Treatment) can be found at http://www.thisisms.com/forum-40.html. Within that are many interesting threads, some of which I have referred to previously. (Note that some are "sticky" threads that are meant to contain information, not discussion - they don't want them so filled up with comments that the information gets lost). Some of the most useful threads include:

• A very useful thread that begins with a clear explanation of the pro-CCSVI arguments along (with some counter-arguments from those who dismiss CCSVI as being a cause for MS), can be found at: http://www.thisisms.com/ftopict-7374.html. After the first clear explanation some of the other posts in this thread do get very technical. Remember that
  

• Another useful one describes known complications with angioplasty and stenting, the procedures used by the three groups that are currently (as of December 7th, 2009) carrying out the Liberation Treatment: http://www.thisisms.com/ftopict-8984.html.
  

• A glossary of terms that are useful to know when reading about CCSVI can be found at: http://www.thisisms.com/ftopict-7268.html
  

• For this who wish to track the progress and experiences (in terms of changes to their MS symptoms) of patients who have had the liberation treatment, follow this thread: http://www.thisisms.com/ftopict-8346.html. NOTE: In this part of the forum there is one reference to the liberation procedure also being done in Taiwan - the first time I've seen a reference to the procedure being done outside of Italy, California and Poland.
  

There is much, much more, but some of these threads would be a good place to start.

Continuing research

There's a lot of information on CCSVI and the Liberation Treatment out there, and it's growing by the hour, so I hardly know where to begin in order to summarize it... and it's only 3 days since I did my last summary!

Actually, as you may have noticed from the contents of my first summary (though I didn't say it outright), I have been primarily focusing on the possibility of having the tests and procedures (if appropriate) done by Dr. Simka's team in Poland. The major reason for that is Dr. Simka actually replied to my e-mail. Dr Zamboni in Italy and Dr. Dake in California have been so deluged that they are apparently not answering the average MS patient. Even Dr. Simka now takes much longer to answer e-mails (days, rather than hours) according to former CCSVI patients, but at least I did get an answer from him. Sometime this week I can contact him to make arrangements for the assessment and, tentatively, the LT procedure sometime in the new year.

In the meantime, I have been reading the posts in the ThisIsMS forum (in www.thisisms.com) from people who have had or are planning to have the procedure done in Poland. The topic areas that I have been most interested in are the "Dr. Simka (Poland)" and "Going to Poland" threads, as well as other threads where individuals receiving the treatment have chronicled their experiences in Poland and their improvements after the treatment.

I have also been contacted by a number of people in Canada interested in what I am finding out, so I hope that I can structure this in such a way that it is of some use to them.

I'm getting tired, so I think I'll continue this tomorrow.

Some on-line resources

I may not have time to work on this tonight and will be away on the weekend, so here are a few of the web-sites and discussion groups I found useful/interesting. There are more, as I say below, but maybe I'll add them later... or readers will share theirs with me. I'll probably put them on a special page, once I learn how to do it.

• http://www.thisisms.com/ftopic-8585-45.html - Discussion forum about CCSVI and Dr. Simka’s work starting in October, 09. Includes info from past and prospective patients.

• http://csvi-ms.net/en/category/content/medizin/behandlung-ccsvi - CCSVI assessment and treatment in Italy and Poland.

• http://www.thisisms.com/ftopic-8940-days0-orderasc-0.html - Assessment and treatment of CCSVI in Paris.

• http://www.thisisms.com/ftopic-8674-days0-orderasc-15.html - Specific details about travel to Dr. Simka's clinics in Poland.
  

• http://www.thisisms.com/ftopic-8585-0.html - More about Simka’s team as well as some travel advice for someone going to Poland for assessment/treatment.

• http://medicalmyths.wordpress.com/ - A virulent naysayer (Colin Rose) about CCSVI and the liberation treatment. Unfortunately, he is so virulent that most of his arguments come out as BS. There were responses from CCSVI believers that pointed out some of the weaknesses in his own argument, but on a second trip to the site, I couldn’t find them (?).

• http://strona.simka.nazwa.pl/multiple-sclerosis.html - Web site of the clinic that Dr. Simka works in, this is the page that focuses on the MS work of Simka’s team. Much of the rest of the site (such as where it’s located) is in Polish unfortunately, so far.

• http://www.direct-ms.org/magazines/Embry%20NP%20CCSVI%20and%20MS%2009.pdf – Lay-person’s explanation of Zamboni’s findings

• http://www.stumbleupon.com/stumbler/squiffy2/tag/ccsvi/ - Zamboni’s earlier paper, a bit hard for a lay person, but still intelligible.

• http://www.facebook.com/note.php?note_id=131482162210 – Bologna conference on CCSVI and the Liberation Treatment held in early September, appears to be notes by a lay person attending the conference. Note the excitement of the doctors involved.
  

• http://www.fondazionehilarescere.org/eng/hil_risponde.html - The foundation that funded Dr. Zamboni’s research, will soon include “testimonials” from people who have received the liberation treatment .

I have some seen some other interesting forum sites of people talking about their experience with the liberation treatment, and others that are discussions of some of how other correlations with MS (Vitamin D; auto-immune reaction; differences between R&R, PP and SP MS) can be explained by CCSVI theory. Also others that talk about old research concerning brain blood flows and iron in the brains of MS patients was noted but never pursued by researchers. Unfortunately, when I read those, I didn’t think to copy the URLs: if/when I see them again, I’ll add them to this list.

Taking the first step - why?

Why? I don't need my 15 minutes of fame. I don't think that what I have to say here will be particularly earth-shattering or in need of being saved for posterity. But things have happened this week that have set me on a path that may make me a bit of a pioneer, and so what I experience in the next while may be of interest to people who have MS or have loved ones with MS.

Anyone from the MS community who is reading this will have heard about the Dr. Zamboni's "liberation treatment" by now. While some people in Europe and the US were aware of the work, the CTV show about it has put it in the limelight for the MS community in Canada and increased exposure in the Unites States. For the first time (since I was diagnosed, at least), there is news of a treatment that might actually "cure" MS, in the sense that the progression of the disease may be stopped completely. The MS blogs and facebook sites are in a state of great excitement and, as someone with MS, I can understand why.

I have, over time, come to grips with the slow-motion car crash that most MS patients face: the likelihood of loss of motor control, bodily functions gone awry, loss of dignity... and a good chance of dementia (though given the other problems, that could be a blessing). Diagnosed over five years ago and in slow decline most of that time (while on Betaseron), my rate of decline has increased over the last year or so. My mobility has gotten worse at a greater rate, and there have been periods when the fatigue would require me to nap up to four times in a day.

Now, to be offered the possibility of a reprieve... it's very exciting and scary. Scary because, if this treatment isn't as miraculous as I hope, it'll be hard to steel myself for the inevitable progression of the disease.

But that is background, and probably enough for today. Over the next while I'll chronicle some of the online research I have done on CCSVI and the "liberation treatment", and some of what I think about what I learned. More to the point, in a week or so I'll find out if there is the possibility of going overseas to be tested for CCSVI and then, if I have the condition, to be treated. If that does happen, I intend to describe my entire "journey": what happens, the results, and how I feel along the way and at the end of the process.

Regardless of how things turn out (assuming I get to go), I expect this blog to have a definite end... either I will have stopped the progression of MS and will be able to report that at some point in the future, or not...