Suggested wording of letter to doctors

Here is the suggested wording (slightly altered by me) for a letter developed by TiMS contributor GetActve to send to appropriate local doctors (perhaps especially interventional radiologists and/or vascular specialists):

Dear Doctor XXX,

As you might have heard the newest idea for MS treatment/cause is Chronic Cerebrospinal Venous Insufficiency. I have included an article from the MSAA's medical director about the idea (see link http://msassociation.org/news_center/article.asp?a=ccsvi for a copy of the article). There is a lot of research going on about this right now.

It was so interesting to read today about the history of this research, starting in 1860 when a doctor said MS was a venous disease. Of special interest to me is the research of Dr. Putnam where he actually produced MS type lesions in dogs (1935) by compressing veins. He then tried to treat MS with blood thinners unsuccessfully, and his ideas were dropped as others have spent the last 70 years treating MS as an immune system disease.

Please consider treating these vein problems as Dr. Dake at Stanford and doctors in Albany NY, Italy and Poland have been doing. This is going to be a huge thing for the interventional radiologists to be involved in!

Thanks
zzzzzz

Other Liberation Treatments Possibilities in Poland and Bulgaria?

A recent TiMS posting suggests that there will be another clinic in Poland and one in Bulgaria doing CCSVI assessment and liberation treatment.  If that's the case, then some folks who missed out on getting in early with Dr. Simka would have another chance to get it checked out and done sooner rather than later.  However, I thought Kosteckj was only doing assessments and I know nothing about Grozdinski.

hi Squibbles,
Here you go...

mariansimka@poczta.onet.pl (massive waiting list!)
kosteckj@op.pl
grozdinski@mail.bg (accepting patients from April)


good luck!

Doppler, MRV and Venography - When, why?

An Italian TiMS reader who can't get her CCSVI assessment done in Italy (how ironic - apparently there are some kinds of "political problems") posted this concise and darn clear description of the various methods for assessing veins:

Just to clarify the differences of exams and definitions:

1.Eco-color doppler of extra-endocranical veins (in particular azygos and jugular veins are checked, since most commonly blood flow problems found there for MS.). The machine is a standard doppler machine as used for cardiovascular examinations (only that there they generally check arteries), and for the CCSVI test applied to MS patients a specific computer program is required and the examiner needs to know precisely which veins to look at.

2. MRV => Definition: The type of magnetic resonance imaging (MRI) used to visualize veins, the blood vessels that bring blood from the body's internal organs back into the systemic circulation.
The MRV uses the same machine as an MRI, but a special computer software allows it to only extract generated-by-blood images, as it flows through the veins. These images give doctors a rough idea of whether blood flow through a vein of interest is affected by blood clots or other disease processes.

=> Both 1+2 can either be separately or in combination used for a first CCSVI diagnosis. Zamboni used No 1.

3. Angiography - am confused about definitions on this term (I first thought called Venography), but seems that Simka is using an invasive technique to check the veins from inside in more detail? I understand that it is performed after diagnosis to check then the specific affected problem veins, to give more precise details on those, which are required for a following vein intervention.

4. The intervention process to eg enlarge the veins and potentially place some stents.

=> Simka does them all 4 one after the other to get a full picture. But for diagnosis only - to know if you have CCSVI - one of the 3 first should be sufficient.

Steffi

 So, still a bit of confusion, but otherwise very helpful.

Protocols to give to doctors

Here is some information that could be provided by MSers to interventional radiologists, vascular surgeons, neurologists and family doctors who are interested in learning more about diagnosing CCSVI.  If anyone knows of other or better links, please let me know.

Dr. Haacke's protocol for detecting CCSVI when using MRI/MRV: http://www.ms-mri.com/potential.php.


Dr. Simka's protocol for Doppler Ultrasound is here: Simka Doppler protocol link and a paper describing the same here: http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf


Another site is http://csvi-ms.net which contains the following info (perhaps including links to Zamboni's protocols):

What should I give my neurologist?

Last modified: 13.09.2009 - 08:35 CET

I would like to inform my neurologist about CCSVI. What should I give him or her?
We recommend you give your neurologist the following material:

1. The PDF files of the bold written articles of
   http://csvi-ms.net/en/content/publications
   should be printed (the PDF links are at the end of the line),
2. the research foundation
   http://www.fondazionehilarescere.org/
   should be mentioned since there are all the important articles of Prof. Zamboni listed,
3. and the information of the Bologna conference (08.09.2009)
   Program (PDF)
   Press release (Word)
   should be printed out.

Optionally, a link to this website http://csvi-ms.net could be added, as there are other important links listed and the site is regularly updated.

And a later addition (though perhaps a duplicate of other information):
http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/what-are-the-tests-for-ccsvi/225095842210

What I don't have here yet is a nice, brief but clear summary of what CCSVI is and why it might be a primary cause of MS.  Can someone point me to their favorite summary? 

Sharon, a TiMS contributor, suggests:

The MSAA article written by Dr. Jack Burks is a very concise summary of CCSVI plus it is written by a well known and respected neurologist. I have suggested that folks use it, especially when going to their own neurologists.

http://msassociation.org/news_center/article.asp?a=ccsvi

Though it might be nice to have an objective article written by someone who recognizes that an MSer who is failing fast should perhaps not be dissuaded from having CCSVI assessment and intervention, this article should be quite useful, especially considering who it was written by.

Loobie's Liberation Treatment Blog

A well-written and very personal blog by someone who's had the Liberation Treatment, has improved significantly, but still wishes for more: http://myhopefuljourneyintoactualmsrecovery.blogspot.com/.  It's easy to imagine myself in the same situation: rejoicing about the improvements, but impatient that the improvements have slowed down or stopped - while recognizing that many would love to be in that situation.

Getting up to speed on CCSVI

www.ThisIsMS.com/forum-40.html is probably the best place to get information about the background and recent developments concerning CCSVI and the liberation treatment, but is such a huge and growing site that "newbies" are overwhelmed.  They do have "stickies" (permanent topics) on the first page that are meant to summarize information in several category areas (the best info is usually in postings in the first few pages of the sticky thread, which are updated by the authour, usually the moderator).  However, there is much more valid information in the various threads than is contained in the stickies.  For someone who is new to the site, I would suggest first reading a few pages of each sticky, getting familiar with the issues and lingo, then use the "Search" link that is at the top of each page to search for more information concerning issues or to search for all postings by a particular authour.  For example, it is very enlightening to follow the postings of GiCi, an Italian cardiac surgeon in the UK who has had MS since 1986, had the liberation treatment for his jugulars done by Dr. Zamboni about three years ago, and then another treatment again in Belfast in 2009.

Another site that newbies might prefer is the facebook site http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=nf.  This one might be especially good for people who are new to the topic of CCSVI, but are used to using Facebook.

Later: Thanks to SammyJo for pointing me towards her website http://healingpowernow.com/, which has lots of information about CCSVI and links to many other sources, as well as her own personal story about her liberation treatment at the Stanford Hospital Medical Center.

Good news

I got some good news today.  A Polish-born colleague said that he would probably be able to come along with us to act as a translator/facilitator which will be very helpful, especially if there are complications.  This will ease the concerns my wife has about such an eventuality and, besides, it'll be fun to have him along.

Complications: Medicare and Private Insurance

I received some information from the New Brunswick Medicare people this morning.  Basically, NB Medicare will pay for overseas “emergency” care up to $100 per day for hospital stays and NB rates for doctor’s emergency care. However, I wasn't able to find out about any specific criteria for what constitutes an emergency.  Rather, I would have to make the case for it being an emergency if some complications came up after the procedure and the case I make would be assessed on its merits.

Remember, each province’s health care rules are different, so I suggest other Canadians look on their province's health system web site to see if there is something there, or call their Medicare people.

In any case, the NB Medicare people strongly recommended that I get the private medical insurance (which will also only pay for emergency care), but I’m going to wait until I have dates for the procedure in Poland before I apply for the insurance.

Finally, while I can’t imagine why I would need extra care unless it was an emergency, and Dr. Simka seemed to imply that the Euromedic outfit he worked for would cover emergency care for something they directly caused, it must be stressed that if something DOES happen, the case for it being emergency care has to be made to both Medicare and the insurance company.

One other issue mentioned by the NB Medicare people, as an aside, was that it is reasonable to have confidence in the Polish health care system should an emergency arise.  My own experience with European health care (in Spain) is that a) it is good and b) they won't turn you away even if you can't prove that your health insurance will pay up.

Hearsay confirmation of CCSVI and MS correlation

More hearsay confirmation, but closer to home, is this TiMS posting from a newbie in Barrie Ontario:

The technologist said that every patient she has seen with MS (around 40 people), had blocked veins. I just called my family doc and their office has called - Dr. Sandy McDonald (resident vascular surgeon), wants to see me. The next step, if he orders it, will be a CAT scan Venograpy at the hospital here. After that all bets are off, regarding the surgery. But I won't wait around here forever. If I have to go to California I will.

In a reply in that discussion I suggested to him:

 Hi Shiraz,

I'm happy for you and to hear what is happening in Barrie, but I think that it is REALLY important to get some quoted statistics from the radiology department regarding how many MS patients they have tested for CCSVI and how many have been found with it. "Up until January 3rd, 2010, thirty-eight MS patients have been tested for CCSVI by Doppler ultrasound in the XXXX hospital radiology department and 36 have been found the condition" is much stronger than "A radiology technician told me that about 40 MS patients have been tested and all were found to have occlusions" because the latter sounds more like hearsay that can be easily dismissed.

I think that this is important for all MSers (we could take this to doctors, neuros, media), but perhaps especially for our friends in the US who seem to be battling a semi-hostile MS society and a disinterested media. A few hard facts would be harder to refute and easier to build stories around.

Now I just wish that more Canadian doctors and radiology departments would hear about this and begin taking CCSVI and MS seriously.  With such overwhelming evidence (if it is accurate), they would realize that waiting for double-blind testing is not really necessary - or ethical.

Confusion and conspiracy theories

I've been reading (and sometimes been involved in) several discussion threads lately that shows how confusing and complex the whole issue of CCSVI is, particularly with respect to MS.  Some MSers have been to get Doppler ultrasounds and/or MRVs only to be told that no occlusions were found.  Strange as it may sound to sound to someone outside the loop, that was very disappointing to them  The thing is, in those cases where no stenoses or occlusions were found, it seems that perhaps the people running the equipment may not know what to look for... CCSVI is not always easy to find, because finding them takes some training and experience.  Tied in with that is confusion about how many occlusions people should expect to find in MSers, with numbers as high 100% from proponents and as low as 1% from a technician in Montreal who did a Doppler ultrasound where no problems were found (though the technician didn't seem to be aware that an intercranial doppler ultrsound requires a special technique, and the azygous can't be assessed using the Doppler).

Felow MSer Shelley has sent me some kinks to several interesting stories.  In http://www.facebook.com/note.php?note_id=222008892210&comments) of one MSer who did get assessed by a clinic in Barrie, Ontario, they did find occlusions and a vascular surgeon may be convinced to do some corrective measures, which means we would have a place in Canada to go to soon.

Other things of interest include the possibility of developing artificial arteries (and perhaps veins?) so that stents would not be needed - see copy of story below that Shelley sent to me - I don't know the source.

Shelley also sent me a link to an article in a US newspaper talking about MSers getting paranoid (possibly for some good reasons) that the US media is burying the CCSVI story: http://www.huffingtonpost.com/erika-milvy/possible-ms-breakthrough_b_396448.html. On the TiMS Forum there is worry that crying "conspiracy" too loudly will get CCSVI proponents labeled nut-cases, but certainly many are wondering why CCSVI isn't getting the media exposure in the US as it is in Canada and Europe.


Artificial artery is set to be tested in human trials early this year
London's Royal Free Hospital used nanotechnology to develop the small bypass graft from a polymer material.The material enables the graft to mimic the natural pulsing of human blood vessels, which enables them to deliver nutrients to the body's tissues. The ultimate aim is to use the graft in coronary artery and lower-limb arterial surgery, which doctors say could reduce amputations and heart attacks. If the trials - funded by a grant of £500,000 - are successful, the device could potentially help thousands of patients with vascular disease.

The wall of the artery is designed to be able to withstand blood pressure throughout a person's lifetime and is normally very strong. If it is damaged by disease such as hardening of the arteries, the artery can become blocked or in some patients the wall can weaken, becoming an aneurysm, and it may rupture.
The current surgical treatment is to bypass or replace the damaged vessel using a plastic graft or preferably a vein taken from the patient's own leg. But many patients do not have suitable veins. The plastic grafts were originally made with the same nylon used to make "drip-dry" shirts. But although they work well for larger grafts, they are less successful for grafts of less than 8mm. This is because these materials cannot pulse and their surfaces stimulate clotting of the blood in the graft.

Lives lost
Researcher Professor George Hamilton said: "There is a high failure rate using these rigid, small diameter bypass grafts. Many patients who have needed smaller bypass grafts, but have not had suitable veins, have had limbs amputated and some patients unable to have coronary bypass surgery have had heart attacks and died."

The new artificial artery has been designed to mimic the natural version as closely as possible. It is strong, flexible, resistant to blood clotting and pulses rhythmically to match the beat of the heart. Using nanotechnology, the researchers incorporated specific microscopic molecules into the graft. Some aid circulation, while others encourage specialised stem cells to coat its lining, boosting its ability to repair damaged blood vessels still further. Professor Hamilton said: "This will be hugely beneficial to patients in the NHS as we will be able to reduce heart attacks, reduce amputations and ultimately save lives."

In the long-term, the team hope to develop a range of "off the shelf" grafts, stents and other devices. Judy O'Sullivan, of the British Heart Foundation, said: "We welcome this interesting development which could potentially be of enormous benefits to patients who need a bypass operation to treat their coronary heart disease.

"The availability of suitable artificial arterial grafts would mean that more patients could benefit from the bypass operation whilst avoiding having a wound following removal of a patient's own veins or arteries to be used as grafts, as current practice requires."