Dr. Simka's Doppler Results - To Be Published

Here are some interesting findings regarding the incidence of CCSVI, according to the findings of Dr. Simka's team (http://www.ncbi.nlm.nih.gov/pubmed/20351666):

Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis.

Simka M, Kostecki J, Zaniewski M, Majewski E, Hartel M.

Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland - mariansimka@poczta.onet.pl.

AIM: The aim of this open-label study was to assess extracranial Doppler criteria of chronic cerebrospinal venous insufficiency in multiple sclerosis patients. METHODS: Seventy patients were assessed: 49 with relapsing-remitting, 5 with primary progressive and 16 with secondary progressive multiple sclerosis. The patients were aged 15-58 years and they suffered from multiple sclerosis for 0.5-40 years. Sonographic signs of abnormal venous outflow were detected in 64 patients (91.4%). RESULTS: We found at least two of four extracranial criteria in 63 patients (90.0%), confirming that multiple sclerosis is strongly associated with chronic cerebrospinal venous insufficiency. Additional transcranial investigations may increase the rate of patients found positive in our survey. Reflux in internal jugular and/or vertebral veins was present in 31 cases (42.8%), stenosis of internal jugular veins in 61 cases (87.1%), not detectable flow in internal jugular and/or vertebral veins in 37 cases (52.9%) and negative difference in cross-sectional area of the internal jugular vein assessed in the supine vs. sitting position in 28 cases (40.0%). Flow abnormalities in the vertebral veins were found in 8 patients (11.4%). Pathologic structures (membranaceous or netlike septa, or inverted valves) in the junction of internal jugular vein with brachiocephalic vein were found in 41 patients (58.6%), in 15 patients (21.4%) on one side only and in 26 patients (37.1%) bilaterally.

CONCLUSION: Multiple sclerosis is highly correlated with chronic cerebrospinal venous insufficiency. These abnormalities in the extracranial veins draining the central nervous system can exist in various combinations. The most common pathology in our patients was the presence of an inverted valve or another pathologic structure (like membranaceous or netlike septum) in the area of junction of the IJV with the brachiocephalic vein.

PMID: 20351666 [PubMed - in process]

Looks like the chances of my having CCSVI are pretty good.

Additional Information from Colleen O'Shea

In case folks don't notice this in the Comments section:

Colleen O'Shea said...

Hi Jeff You can also try to go through Surgical Tourism of Canada and go to India -- there is a first group of 8 Canadians there this week for treatment -- and based on their results, the CEO at Surgical Tourism has said they will start booking more surgeries. The all-inclusive price tag is around $25K CAD but that's for you and a caregiver who can take care of you. You can find out more at http://www.surgicaltourism.ca or you can read about some of the the people going to India at my blog at http://for-greet.squarespace.com.

Regarding Poland, I've heard that the GREAT Dr. Simka is booked until the end of 2011, but that may just be rumour. Two Canadians were there - two brothers - this past week and they are doing REALLY WELL -- see http://evanthornton.wordpress.com/2010/03/26/back-from-surgery to find out more about their experiences, but the long and the short of it is it was worth the $10K they each paid for the operations. I'm keeping my fingers crossed for you and hope you join CCSVI groups on Facebook or start to be radical about this yourself.

Best of luck, Colleen

Thornton Brothers Procedure in Poland

Here is the latest video report on the liberation treatment that the two Canadian brothers received last week: http://www.cbc.ca/video/player.html?category=News&clipid=1452264117

Responding to Jeff

jeff said... 

Question... how does it work going to poland? I have read about EUROMEDIC who are they? Do they set up everything for you like transportation, hotel, and the Dr. Or does the Dr.'s office do this? I'm from the US and it seems like we are really lagging behind on this CCSIV treatment. Poland seems like it might be the best option. Your thoughts?

Jeff

Jeff, I originally contacted Dr. Simka at the Euromedic clinic and arranged things with him in early December just before the big rush started.  Since then they have been inundated with requests and all inquiries should go to info@euromedicpoland.com.  Euromedic is a private medical company with several offices in Europe.  Since a lot of us "high maintenance" patients from North America are coming over, and because the actual assessments and procedures are done in several different local hospitals in and around Katowice, they have instituted a one-price for assessment, procedure, hotel room, trips to the hospitals - you organize your own airfare, but they meet you at the airport and take of all local transport.  As well, since a few of the first few patients left without ever paying, they now ask that we send the money ahead of time (with a refund if the entire testing/procedure sequence isn't carried out). The Euromedic clinic I am going to in Poland is booked until well into 2011, but they are opening up another clinic soon, so it wouldn't hurt to ask to be put on a waiting list.  With at least 200 CCSVI patients done so far, Euromedic has the most CCSVI treatment experience in the world. 

At least one other Polish organization (AMEDS) will be assessing and treating people in the next while (if they haven't already started).  Other options are in Bulgaria and India. So far I haven't heard too much good or bad about these other options, though the two clinics in India sound like they may be pricier than what is being charged in Poland and Bulgaria.

Other CCSVI testing and treatment options ARE starting to open up in the US (Georgetown University, Dr. Mehta in Albany, and others), though it is still a small number compared to the demand.  If your situation is such that your MS is not bad and not getting worse quickly, it might  be worthwhile waiting or, as some have done, working on your local vascular surgeons and/or interventional radiologists to interest them in looking into this and perhaps getting CCSVI assessment and treatment training.  In the end, if CCSVI is truly as important to MS treatment as it seems to be, assessment and treatment centers will have to open up in North America, and fairly soon.

Venoplasty and Stents in Veins - no big deal!

Here is a posting on the CCSVI facebook page (http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/how-to-treat-ccsvi-from-a-vascular-specialist-/380143052210), originally copied from a TiMS thread (http://www.thisisms.com/ftopic-10680-255.html).  It would appear that, from this vascular specialist's point of view, the warnings about the dangers of venoplasty and vein stenting do not have a basis in fact: in his institution they have been doing these kinds of intervention since 1979 (!), with few complications.

Walk Aid

Today I was at the local rehabilitation centre where the physiotherapists fitted me with and programmed an electronic "walk aid" that is meant to overcome my "toe drop" problem when I walk (www.walkaide.com).  It acts something like a muscle-stimulator, sending a shock that causes my leg to lift my toes.  I've got it for a week to try out. 

Even if I decide that this is the way to go (it costs thousands of bucks!), I wouldn't likely get it until after I see the results of my trip to Poland.  I can sure tell that my leg isn't accustomed to using that muscle: after a short walk with the walk aid, that muscle is completely tired out.  I do have some ideas how they could make the device better, though... maybe I should talk to the people at Biomed Engineering at the University...

Thornton Brothers are Liberated

The two Canadian Thornton brothers who went to Poland together have both been liberated today and are experiencing some initial positive results almost immediately, according to the CBC reporter who accompanied them to Katowice: http://www.cbc.ca/world/story/2010/03/25/mb-ott-brothers-ms-poland-surgery.html.  They are both feeling warmer hands and feet, an outcome reported by many liberated MSers.  People with MS are often plagued by poor circulation in their hands and/or feet, a symptom that I share: my feet often feel like blocks of ice. 

Gotta keep posting...

This evening I was reminded by a friend that there are some people following (and presumably getting some value from) my blog and it made me realize that my work has been getting in the way of keeping my scribblings up-to-date.  There have been quite a few encouraging developments on the CCSVI front that may be news to those not following the relevant discussion threads on www.thisisms.com or the CCSVI sites on Facebook. I'll try to summarize some of the nuggets of information and impressions I have gained from following those main sources of information (and speculation) - note that I am writing most of this from memory, so may be "mis-remembering" some details:

1. There have been, apparently, over 200 "liberations" conducted in Katowice, Poland by Dr. Simka's team and they have now ramped up their operations to the point where they are treating 50 people per week.  It's not clear if that includes a second clinic that Euromedic was supposed to be opening soon, but it certainly means that the operation has become more efficient - mostly in a good way, apparently.
2. The patients reporting on their trips to Katowice under the new protocol (more expensive, but all the details in Poland are handled by Euromedic) have indicated that they were treated very well and the ones that mentioned it said that the extra attention given to them was worth the extra money.
3. Of all the people who have been "liberated" in Poland (and there are now many who have reported), I have heard of two "non-positive" reports from the perspective of symptoms:
   
   
   

   • Rici, a Polish MSer, had very good results after treatment of his left jugular last fall, but after a time things started to get worse than before he was treated.  A new assessment showed that his right jugular was huge and had "pancaked".  The jugular is too big for a stent, and it is not clear what can be done about it.
     

   • Another Polish MSer had only reported very minimal improvements (if any at all) up till a couple of weeks after being treated.

4. Otherwise, pretty well everyone else has reported improvements that range from those that could be called minor (feet warm again, slightly less fatigue) to huge (fatigue drastically reduced, mobility increased, spasticity decreased, sleeping better, bowel and urinary problems reduced).  Stories on TiMS by contributors (you can look through the CCSVI tracking thread or search for the postings of individuals in their own threads) like "Edser", "ErikaSlovakia", "fraser", "Donnchadh", "Richardk", "Dovechick", "Brynn", "alby", "openmind" "sophie", "LR1234" and quite a few others talk about improvements after treatment in Poland, while others who were patients of Dr. Zamboni's report continuing good results and patients of Dr. Dake (of Stanford) are coming to their first anniversary and are almost all reporting continuing improvements.

There are other good things to report like new places where the assessments and treatments are being undertaken (Georgetown University, Frankfurt, Warsaw, Sofia, Mumbai, New Delhi, some place in Jordan), more interest from the media and more signs that the CCSVI theory is winning (grudging) acceptance in the medical community... but I better go work out since I missed last night and I want to be in as good shape as I can possibly be when (if) I am liberated and my mobility starts to improve again.

CCSVI finally makes the "Big Times" in the US

Or rather the New York Times: http://www.nytimes.com/aponline/2010/03/22/health/AP-US-MED-HealthBeat-MS-Bad-Veins.html?_r=1

Overall, a fairly balanced article, though it either ignores the treatments happening in other parts of the world or implies that they are "fly-by-night" operations... guess if it's not happening in a big center in the US, it can't possibly be legitimate.  But at least they are finally giving the issue some coverage, which has to be encouraging to American MS-sufferers who have worked hard to raise its profile in the US media, with limited success until now.

Encouraging Words

For those of us going to Poland for assessment and (hopefully) treatment, this posting from a Canadian woman whose husband has just been liberated is SO encouraging:
http://www.thisisms.com/ftopicp-99522-katowice.html#99522

I've received my instructions for Poland

This morning I received an e-mail from Euromedic Poland with instructions concerning the procedures, travel, payment and so on.  It's real!  Now I have to decide if I should send my payment directly from my bank or send it through the OANDA account I created.  If I do it through OANDA, I save almost $300.

We leave April 23rd and are going to Krakow for a few days before I go to the Qubus hotel in Katowice on the 27th (where we'll be staying during the days of my tests and procedure which happen on the 28th and 29th).  Friends of ours from Fredericton will be traveling with us for the Krakow part of the trip: sort of a "long weekend in Krakow"!

Georgetown University Performs Its First Liberation Treatment

The big news on TiMS and the CCSVI facebook site is that Georgetown University has performed its first liberation treatment on March 3rd and is gearing up to start assessing and treating the 2000-odd patients at the GU MS clinic.  The TiMS thread where the first GU "liberatee" (with the nickname of lucky125) announces this is at http://www.thisisms.com/ftopict-10709.html. She has let the cat out of the bag because the story is going to be put out by AP tomorrow.  She also has told everyone about her own blog (which was only open to family members previously) where she tells her story at http://myliberationadventure.blogspot.com/.

Now maybe this will finally get some real media attention in the U.S.

Video of a Liberation Treatment in Melbourne

A young lady (Kerri) in Melbourne had this venoplasty (“liberation treatment”) done this week. There are a series of three videos, the first two of her describing the background and what did happen in her own words and with the final one showing parts of the procedure (mostly the “live scans” that she could watch while they were doing the procedure):

1. http://www.youtube.com/watch?v=2Rq5UzeqKkw&feature=related
2. http://www.youtube.com/watch?v=hMU8YKowjBQ&feature=related
3. http://www.youtube.com/watch?v=vZpIbpPAJGE&NR=1

They are each 7+ minutes long.

Charity Intelligence Endorsement of CCSVI Research

As an update to my previous posting, I received an e-mail from Kate Bahen, Managing Director of Charity Intelligence Canada, that outlines the reasons they are giving CCSVI Research such a strong endorsement as a target of donations for the groups and individuals to whom they report:

Thanks Ted.

Charity Intelligence works for private funders - mostly individuals but also private foundations and corporations - helping them give. As you know, navigating the Canadian charitable landscape, trying to figure out good spots for donations can be a challenge.

The client who initiated the Ci's research into CCSVI is anonymous so we are not at a liberty to disclose the background.

However, we too out of curiosity had read the Globe and Mail article back in November and wanted to check this out - was it a hype/hoax? What we found we believe is the biggest giving opportunity we have ever seen.

As investment professionals who volunteer with Ci we look at donating through a different lens. We seek out opportunities where donations can have high social returns. In the CCSVI field, we estimate that for every $100 donated, this could produce social returns of $3,000. This is like underwriting Banting and Best - a historic donating opportunity.

We believe today more than back in February that CCSVI is the real thing - not all people with MS may have CCSVI but for those that do, this is the medical breakthrough that will redefine how MS is diagnosed and treated.

Now the challenge at hand is to get CCSVI happening in Canada. The amounts required to do this are so relatively small - $1.5 million - of which your donation is part. "It is our small streams of contributions that have the potential to fill expansive oceans."

Canadians care very much about MS. Last year Canadians donated $62 million to charities in the MS sector - yet 100% of the $8.5 million in research funding has gone to the auto-immune area and there is inadequate interest in getting CCSVI trials funded. If a small portion of Canadian’s donations can be redirected to CCSVI, we can get the Phase 1 trials funded and underway....and then people like you wouldn't have to travel to Poland!

So we have set up a mechanism where donations can go exclusively, 100% to CCSVI Phase 1 trials..... Canadian donors have the power to make this happen.

At Ci, all our team care passionately about Canada. Canada has a huge competitive advantage in the CCSVI area because of the extraordinary journalism of CTV - we are ahead of many other countries in terms of public awareness. Sadly, this advantage is not being maximized. Canada has the doctors, the machines, the will to do CCSVI research. Yet until they get the funding, nothing happens. And rather than being a world destination for others with MS to come to Canada for treatment, Canadians are going to Buffalo and Poland.

It will be a long battle to move the medical establishment but science will prevail - it's just a question of time, and time is a luxury people with MS don't have.

I would be very interested in hearing the outcome of Poland. Safe travels and please keep in touch.  And thank you again for your leap of faith in donating through an upstart charity you have never heard of before. We promise we'll deliver your donation as per your giving instructions as quickly as possible.

Kate.

Charity Intelligence - a great initiative for CCSVI in Canada

Charity Intelligence, an organization set up to provide decision-making information for donors in Canada, has just announced its support for CCSVI research.  It has produced a great report on CCSVI and why it is important that donors should support the CCSVI research initiatives in UBC and McMasters: http://charityintelligence.ca/pdfs/Ci_CCSVI_in_Canada_FINAL_Disclaimer.pdf.  The report they have produced is excellent and could be used to take to your GP or neurologist in order to convince them to take CCSVI seriously.  I could have used it when I met with my GP yesterday to explain my decision to go to Poland although, in fact, I found him very supportive of my decision once I explained my reasoning .

What happened to the Italian "liberatos"? READ THIS!

I'm sure I am not alone in wondering why we haven't been hearing more from the early patients that Dr. Zamboni "liberated" in Italy. I assumed that it may have had something to do with the likelihood that there are fewer Italians who are able to write in English. Finally, today, in response to the nervousness on the part of someone who is scheduled to be liberated, someone posted a number of translated testimonials from Italian "liberatos", including heart-wrenching stories from some who have re-stenosed and are now having to wait to be retreated because parts of the Italian medical community have stopped liberation treatments pending an ethics committee review. The thread is: http://www.thisisms.com/ftopict-10539.html.

A Virus Exacerbates My MS Symptoms

I'm on the third day with some kind of virus... stomach upset, muscles aching, tired, slight sinus headache but no fever to speak of.  But the strange thing is that for the first day and a half my spasticity and muscle weakness were WAY up.  I could hardly get in and out of bed properly and had real trouble unbuttoning my jeans, giving me an apparent preview of where my MS symptoms are headed.  If nothing else, it gave me all the more motivation to go to Poland to get treated (as if I needed more).

Now that I'm feeling somewhat better (though still sleeping lots during the day), my MS symptoms are back to "normal".  But it's making me wonder if  other people have ever felt their MS symptoms get worse so drastically when they came down with a bug of some kind.  It's never happened to me before - or at least not so noticeably.

Reply to Jenny - Getting on a list

Hi Jenny,
Here are the various possibilities to get on a list for CCSVI assessment and (hopefully) treatment:

1. Montreal: First of all, if you are willing to only get MAYBE assessed, you could make an appointment with the Westmount Square Imaging Clinic in Montreal (I assume you are in Quebec).  The reason I say MAYBE is because they don’t yet have all the appropriate equipment, and perhaps not ALL the appropriate expertise.  However, a positive CCSVI diagnosis there would give you a leg up in trying to have something done about it in Canada or the US some day, if you can’t get on the other lists below.  One thing: even though it is a private clinic and you have to pay, I understand it is still asking you to have a doctor’s referral. 
2. Poland (Simka): This is the clinic I am going to in April for assessment and (hopefully) treatment.  As far as I know, they are booked into 2011.  However, if you want to get into their list for 2011, or for the second clinic they may open this year elsewhere in Poland, then contact info@euromedicpoland.com, or try to talk to someone at the from desk at +48 32 354 05 87.  If 2011 seems too far away, or the possibility of a second clinic too uncertain, then you might ask them to put you on a list of people who are willing to go on a moment’s notice, if you are willing to do that.
3. Poland (Kostecki): This is, I believe another clinic not connected with Euromedic (or it could be the second Euromedic clinic – it’s not clear).  His contact is kosteckj@op.pl
4. Bulgaria: grozdinski@mail.bg (accepting patients from April)
5. Dr. Mehta in Albany, New York may be doing tests and procedures soon.
   

   Dr. Mehta, a vascular surgeon in Albany, NY is starting a study soon and is taking names now (for balloon angioplasty only). Dr. Mehta knows neurology, MS and CCSVI and is committed to helping as many MS patients as he can. Dr. Mehta is a friend of Dr. Dake at Stanford and he's been in very close contact with Dr. Dake about testing and treatment. If anyone is interested in having CCSVI testing and treatment (if indicated), you may call Dr. Mehta's office at: 518-262-5640, which is located at 43 New Scotland Ave., Albany, NY, 12208. Dr. Mehta has said that he will need the month of February to finalize a protocol and treatment plan, so they are planning on contacting people in March to begin getting evaluations done, etc. You may also write to his nurse to this email address: wilcoxm@albanyvascular.com. Write: MS Research Study in the subject line

6. One Torontonian (TorCan on TiMS) has booked an assessment and procedure in India.  Do a search for his postings in TiMS.
7. Mumbai, India: I'm not sure if this is different from the clinic that TorCan is using, but here is information that TiMS user manojag22 has posted concerning a clinic in Mumbai that is doing liberation treatments:

• His TiMS story: http://www.thisisms.com/ftopict-10492.html 
• The Mumbai Clinic contact info: http://www.peopleagainstbrainattack.com/peopleagainstbrainattack/site/contact.aspx
• The hospital details: http://www.breachcandyhospital.org/
• Unless I misunderstood, I believe that this is being organized by Surgical Tourism Canada and will cost $24,000 with all expenses (travel and hotel for 2, assessments and surgery) There is currently a waiting list with no specific dates given for wait-listed people until the first 16 have theirs done and come back to report on their experience, I guess - not sure when that will be.

It does appear that there may be other possibilities soon – Good luck!

My Flight is Booked

My wife and I fly to Krakow on April 23rd, arriving on the 24th.  We'll spend a few days in Krakow and area, then on the 27th go to Katowice.  After the tests on the 28th and 29th and (hopefully) treatment on the 29th, I spend a night in hospital.  We fly back to Canada on May 2nd

March on Parliament Hill for CCSVI Action - May 5th

For those who believe that there should be more and quicker movement on CCSVI from our governments, here is a chance to show them how you feel:
http://www.thisisms.com/ftopic-10488-0-days0-orderasc-.html

If you can't make it to Ottawa at that time, this link shows other ways to support the lobbying effort:
http://www.thisisms.com/ftopic-10488-0-days0-orderasc-.html