The treatment for cerebrospinal venous insuffienciency (CCSVI) in people with multiple sclerosis (MS) is usually balloon angioplasty - the procedure is often called "Liberation Therapy."
The doctors who typically perform this procedure are interventional radiologists (IRs), doctors who do surgery or diagnose disorders using radiological images. The whole idea is that the images will help the doctors diagnose or treat in the least invasive way - instead of cutting patients open to find out what is going on and then fix it, IRs use images to show them a picture of the problem and allow them to get to the exact spot to correct it with tiny instruments, such as needles and catheters.
A group of IRs who have been treating people with CCSVI presented data from 231 MS patients who have received treatment. The data, presented at the Society of Interventional Radiology's 26th Annual Scientific Meeting, was compelling.
A total of 247 angioplasties (both with and without stent placement) were performed on 147 female and 84 male patients, who ranged in age from 25 to 70 years. In 99.2% of cases, the people were discharged within 3 hours of the procedure. The most significant "side effect" noted was sustained cardiac arrhythmia in 3 of the patients during the procedure, leading to the recommendation that cardiac monitoring be used during surgery. In addition, 8.5% of people experienced headache and 18.5% of people mentioned neck pain.
It was stressed by the IRs that even though the procedure appears to be extremely safe in people with MS, there are still many questions to be answered, including how to select patients and the relationship of CCSVI and MS.
For additional information about CCSVI and MS:
- What is CCSVI in Multiple Sclerosis?
- CCSVI Treatment Reports from Patients
- What Does CCSVI Treatment Feel Like?
Source: Society of Interventional Radiology (SIR) 36th Annual Scientific Meeting: Abstract 3. Presented March 28, 2011.
At least now we have objective information regarding the possible risks of balloon angioplasty with or without stents, though the risk of cardiac arythmia doesn’t sound great to me. Still there are relevant questions to answer: Will they continue to monitor those participants who received stents, since there is a possiblity of clots developing around the stent. Do the risks of cardiac issues rise if there is a pre-existing cardiovascular condition? And most importantly, what is the efficiency of doing the procedure to treat MS symptoms? Is it any better than what’s current out there or even placebo?
I know others who have had this procedure who then developed problems that became apparent only weeks after the procedure was done. These include blood clots, blockage of veins in the neck and scarring of the veins in the neck.
This study is rather badly flawed. The researchers should have followed patients for a much longer period of time.
I was treated for CCSVI by the authors of this study with no negative side affects. We are followed for periodic re-exams . Also have had MS for 39 years hoped to effect progression got much more- significant measurable improvements- as per my neurologist.
I was treated last June and am being re-treated this May. I had no bad side effects. It is important that people get proper “AFTER CARE” which it sounds like your friend’s Rebecca had not! So it wasn’t the “treatment” that wasn’t safe for them it was lack of proper follow up.
For myself follow up has included ultra sounds. I had no need for stenting and ballooning was minimal so plavix & or blood thinners weren’t necessary for me. I did opt to take baby aspirin myself though.
The results were beyond worth it and I’d rather do this treatment over and over as opposed to say chemo for M.S..
Dr. Gary Siskin and Dr. Ken Mandato are my doctors. I was one of the first patients to undergo treatment at Albany Medical Center and even a year later I’m doing so very well. The doctors still follow up with me on a regular basis as they have been doing for all their patients. I’m one of the patients that had stents placed that became clotted and that can be taken care of and it was.
I’m very proud of my doctors and the work that they do and I’m very thankful to them for thinking outside the box and listening to me, the patient, the one that has to endure the horrible effects of MS and the drugs that hurt even more! I am now drug free and getting better all the time.
Hi Julie!
Thanks for your information on the CCSVI.
I have been suffering from MS for the past 23 years but I have only been diagnosed in 2004 after a nasty fall in which I broke a patellar.
I noticed that I did better without any drugs.
I have identified certain things that could cause a relapse …
Stress, lack of sleep , … and I’m trying to rehabilitate myself… I hope my stable condition will lasts but just as you , I’m always on the look out for new problems! The CCSVI can stop the leakage of blood into the brain but can the damage to the central nervous system be undone?
Thanks for sharing your expertise with us.
Regards
Steeve
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
There is a clinic in Dayton, OH that offers the treatment. They are participating in a clinical study trial through the Hubbard Foundation. They are also approved by the NIH and IRB. Just some information I wanted to post for anyone wanting information.