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Julie  Stachowiak, Ph.D.

Interventional Radiologists See Benefit in Treating CCSVI

By March 31, 2012

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It will probably come as no surprise to many people that many interventional radiologists are interested in the effects of treating chronic cerebrospinal venous insufficiency (CCSVI) in people with MS - after all, they are the ones performing the procedures.

According to findings at the 37th annual scientific meeting of the Society of Interventional Radiology (SIR), held in San Francisco March 24 - 29th, treating CCSVI produces "significant short-term improvement in physical and mental quality of life in people with MS."

Researchers reported on the "Albany study," which included 96 individuals with relapsing remitting, 66 with secondary progressive and 30 with primary progressive. They found that in people with relapsing-remitting MS and primary progressive MS:

  • 75 percent showed physical improvement
  • 70 percent showed improvement in mental health scores

In people with secondary progressive MS, 59 percent had improvements in physical health scores and 50 percent had improvements in mental health scores.

Researchers also noted that improvements are more likely in people who have been diagnosed within the last 10 years.

I do not know how long patients were followed or at what time increments they were evaluated.

Read the 2010 position statement of the Society of Interventional Radiology on CCSVI: Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients with Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology, Endorsed by the Canadian Interventional Radiology Association

For technical reading on the SIR's approach to researching CCSVI: Development of a Research Agenda for Evaluation of Interventional Therapies for Chronic Cerebrospinal Venous Insufficiency: Proceedings from a Multidisciplinary Research Consensus Panel

March 31, 2012 at 9:11 pm
(1) Lori Batchelor says:

I’m one of the lucky secondary/progressives who had fabulous results! I think it says a lot that PPMS did so well!
“Of those with primary progressive disease, 77% had a physical and 70% had a mental improvement. These changes were all statistically significant (P < .05)." http://www.medscape.com/viewarticle/760923?src=emailthis%3Fsrc%3Dstfb
And I quote the MS Society of Canada "Quality of life benefits cannot be overstated."–But it remains to be seen if they take any action to help Canadians with PPMS obtain this treatment because no other treatment is available for them.

March 31, 2012 at 11:54 pm
(2) Bill says:

I fully expect the MS Society will either ignore these findings or twist the results to support their current position of dragging this out as long as they can. The MS executives are all scrambling to get bigger payouts now as they look for new jobs.

April 1, 2012 at 2:13 am
(3) Joan says:

Here is more information on the Albany trial–

“Results of the study were quite exciting and promising,” stated Mandato. “We can attest to significant physical improvements reported in greater than 75 percent of those with relapsing remitting and primary progressive forms of multiple sclerosis. Additionally, mental health scores improved in greater than 70 percent of individuals studied. People with secondary progressive multiple sclerosis showed statistically significant improvements in both physical and mental health scores at a rate of 59 percent and 50 percent, respectively,” he added.

“During a four-month period, we treated 213 individuals. 192 of these patients (72 men, 141 women; average age 49 years) responded to a standard questionnaire that evaluated key quality of life components including changes in physical abilities, health perception, energy/fatigue, sexual function, emotional well-being, cognition and pain,” explained Meridith J. Englander, M.D., also an interventional radiologist at Albany Medical Center and one of the study’s co-authors. “We ultimately broke this data down into physical and mental health scores for each person, and found improvement in both components of quality of life,” she added. “In addition, we found a trend that patients undergoing this treatment more than 10 years after diagnosis did not respond as well as those with a more recent diagnosis.”

Read more here: http://www.sacbee.com/2012/03/25/4364872/interventional-radiologists-see.html#storylink=cpy

April 1, 2012 at 2:20 am
(4) Joan says:

Here is another trial from Rush University, Chicago–results presented at SIR 2012

This is an IRB approved retrospective review of 105 procedures performed in 94 patients (35 men/59 women) with MS between 06/2010 and 09/2011. Mean age was 47.8 years (26-67). All patients had MS by Mc Donald criteria. Clincal categories were: 50% (47/94) Relapsing remitting (RR); 34% (32/94) Secondary Progressive (SP); 6.3% (6/94) Primary Progressive (PP) and 6.3% (6/94) unknown. Procedures were performed under conscious sedation. Jugular (JV) and azygos (AV) veins were evaluated with selective venography and intravascular ultrasound (IVUS). Angioplasty was performed if venograms or IVUS confirmed greater than 50% decrease in luminal diameter or reflux. Stents were used to treat non-responsive lesions or occlusions. Patients were anti-coagulated for 10 days and Plavix was given for 6 weeks. Follow-up included JV ultrasound (US) one week post-procedure and clinic visits with MSIS scores every three months. Results are presented as percentages.

Venography and IVUS showed stenosis in 94.9% (89/94) of patients and were normal in 5.2% (5/94). Venous stenoses were seen in a total of 179 veins: both JV (n=28) [31.5%], both JV and AV (n=21) [23.6%]; one JV and AV (n=20) [22.47%]; one JV (n=15) [16.85%] and AV (n=5) [5.61%]. Angioplasty was performed in all abnormal veins. Stents were placed in 5/179 (2.8%) veins. Indications for stent were: azygos vein kink (n=3) and JV occlusion (n=2). Symptomatic improvement was reported by 48/89 (53.9%) patients; questionable improvement: 15/89 (16.85%) and no improvement: 26/89 (29.2%). Improvement was highest in RR patients [28/47] (59.6%).

April 1, 2012 at 9:45 am
(5) Leslie says:

I had this proceedure done last May with many good results. I found out that my MS was really Lyme disease. With all that I have been through getting the diagnoses of Lyme and treatment I don’t doubt that this will be squashed and pushed down for profit. Just like they are denying that Lyme is here, and that it is known to mimic MS. It does not cost very much for a month of Doxycycline if caught in the early stages compared to 1000′s for the DMT’s. They need better testing, so people are not misdiagnosed and thrown on the side effect latent drugs for MS. Which by the way is treating something that hasn’t even been proven. It disgusts me what they are getting away with all for profit! I was diagnosed with Secondary progressive for those keeping tabs. If you can believe what they are doing in regards to MS, because I sure can’t!

April 1, 2012 at 4:02 pm
(6) Marie Rhodes says:

The research is going forward on this model in spite of huge resistance and it is very welcome. To a large extent it is grass roots patient advocacy that has brought it to where it is today; patients asking for evaluation of their blood flow and even paying for procedures has given the radiologists a way to investigate using retrospective and observational methods such as the studies Joan Beal linked above.

The increased interest and curiosity about CCSVi these kinds of studies create will only be good for further scientific efforts to understand this.

Patients who want to learn more about the model might consider my book published by McFarland health topics last year and available on Amazon. see ccsvibook.com to read excerpts ., 10% of my royalty goes to CCSVI research.

April 4, 2012 at 5:39 pm
(7) Stacy Saman says:

You have just heard from some of the most educated and influential people in the CCSVI advocacy community. I applaud them.

My little bit…I was in a walker, barely able to speak, and now I can jump and sing again. I have bad days still…we all do, but there is no ignoring the fact that treatment for CCSVI DOES improve the quality of life for most individuals with MS.

It’s about time the ‘powers that be’ (big pharma, health authorities, neurologists, insurance companies) let MS’ers have a chance at improving their quality of life.

That being said, I did need to get treated twice, and I (as well as the tens of thousands who have now been treated) are really anxious to see some long-term studies in regards to how long effects can last…and we would have had that information, had those ‘powers that be’ got active on this when the information first came out. Enough dragging of feet already! Time is brain, right?

April 4, 2012 at 5:40 pm
(8) Melanie says:

I go to a very well known MS center in Boston, MA. After reading so many positive testimonials I asked my new neurologist about this procedure. Her reaction was immediate condemnation. She told me ‘a dear friend of hers had it and now is on Plavix for life at risk of having a stroke’.

i could see there was no point in continuing that conversation. I have secondary MS and am wheelchair bound.

I told another more forward thinking Dr. recently and he was furious at the manner in which it had been presented to me. Frankly I agree with him. These neuros are so closed in their little box of thinking it is pathetic and to use scare tactics makes it even worse.

There is a lot that needs to change in the thinking, training and Diagnosing of MS in the American Medical system.

The first thing is to get it right. There are so many tools today that can be used. I was diagnosed with Fibromyalgia – 1st attack and 2nd attack 9 years later -Chronic Fatigue, I have lived with MS for 22 yrs.

April 4, 2012 at 6:50 pm
(9) Susan Wood says:

Is the relief primarily short term? I haven’t had the procedure, but a friend of mine had very good results, which unfortunately lasted for only four months.

April 4, 2012 at 7:28 pm
(10) Michael says:

My nuerologist cringed at the mention of C.C.S.V.I. At my last visit she exclaimed that one of her P.P.M.S. patients was now on blood thinners for a botched stent in a jugular vein which she said caused clotting in the guys legs??. She said the dude paid for the procedure by himself AGAINST her better advice The respected head of the Nuerology department at the Univ. of Minnesota called it the ‘roto-rooter’ treatment when my wife and I attended a seminar where he was a speaker a couple of years ago. The Copaxone I inject daily costs $1000.00/mo, The Ampyra she prescribed a month ago for ambulatory issues, is around $800.00/mo. My walking isn’t improving. Oh, I guess it has to build up in my system. My family deductible was met two months ago. Yes, it seems as if there is a large,
unwarranted bias here. I personally would like the choice to take the risk if it means that I possibly could go out and feed the animals without falling into the electric fence. A pharmacutical company in Israel is making large sums of money off our suffering.
P.S. if I find out that I wasn’t tested for Lyme’s disease with all of my blood that has been drawn, I’ll be pretty freaked out.

April 9, 2012 at 10:05 am
(11) pp2891 says:

It is great to hear that there is some treatment that will help relieve the symptoms of MS patients. I do know an interventional radiologist in Dayton, OH that is also now offering the treatment. They are very interested in this topic and want to help in the best way possible. I have heard of the results they have been getting and it is just reassuring.

April 14, 2012 at 2:31 am
(12) Leona says:

I have been waiting for a “cure” for 57 years and I’m 59 yrs old! Yes, when I was 2 my 23-year-old sister was diagnosed. She died in 1979. At 40 I was diagnosed. I’m not holding my breath. Some day, when there’s a Mormon in the White House…joke…I’ll die a dem.

April 21, 2012 at 6:24 pm
(13) LYNNE HEAL says:

beleive over 30,000 worldwide have now had the POSITIVES outway many negatives . A better quality of life is better than nothing

April 25, 2012 at 4:41 pm
(14) Bev says:

Has anyone watched the video from Dr. Terry Wahls? The diet that reversaed her progressive MS ? I have SPMS and want to know if this would be somthing I want to try as this vedeo showed a reversal from the disease.

May 9, 2012 at 1:47 pm
(15) Bev. says:

I keep hoping this MS will go away and I can be again like I used to be-I know that age also plays a large part of the deterioration that I am experiencing now. I asked my neurologist about ccsvi treatment and he says we will discuss the proceedure my next visit with him-as of present he does not see any changes in a patient he has that had the treatment.- I solved the foot drop with the help of a walk aide and that helped that problem but I am feeling that I am declining in other ways.
My family physician also says all tests indicate that my blood flow is normal and ther is no blockage in a vein. Is there anything else I should try? Suggestions would be appreciated.

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