Call me a wimp, but when I hear about a new drug or procedure, I really want to know what the downside is. I want to know what the side effects are of any drug and how much any sort of procedure is going to hurt.
When I heard about the "Liberation Treatment" for chronic cerebrospinal venous insufficiency (CCSVI), true to form, my first reaction was to cringe. The treatment is fairly simple. Called "balloon angioplasty," a catheter is threaded up to the jugular veins through an incision made in the groin area. Dye is usually used to highlight the areas of interest. The catheter is then positioned at the area of stenosis and inflated to open the vein up. A stent is occasionally placed.
The same procedure is repeated in the azygos vein, which runs along the right side of the spinal column in the middle of the torso.
Some patients only have a local anesthetic at the incision site. Others choose "conscious sedation," where they are sedated and can feel sensation and follow instruction, but do not usually experience (or at least, don't remember) pain. Yet another option is to have "twilight anesthesia," which is a light general anesthesia.
So, what does this actually feel like?
Marc Stecker, aka The Wheelchair Kamikaze, told me, "I could definitely feel something as the catheter was snaked through my circulatory system, but I wouldn't even characterize it as discomfort. When the balloons were expanded in my jugulars, it kind of felt like the pressure experienced during an airplane descent." Marc only had local anesthesia at his incision site. One particularly vivid detail that Marc shared on the radio program "CCSVI: Been There, Done That" was that he could "hear the dye being injected."
He pointed out that many people are reporting pain, as larger balloons are now being used in the procedures, and more people are opting for sedation.
On an extremely positive note, Steve Garvey said (on the "CCSVI: Been There, Done That" program) that he could instantly tell when the doctor had opened his vein, as he regained use of his left hand and left leg while still on the table.
What about you? If you have had CCSVI treatment, what was your experience? What did it feel like? Share your story in the comment section below.
I have not had the CCSVI procedure – yet (I am scheduled for October 2011). I can totally understand the statement “hear the dye being injected”. I have had multiple MRI’s with dye injection (I am currently a participant in an MRI study), and I can always “hear the dye being injected”. It isn’t painful – just an odd feeling.
I have had the treatment 3 times now. It is less painful than a trip to the dentist, although the local anesthetic shots feel the same.
Each treatment got progressively more aggressive. The latest treatment in Dec used bigger balloons and higher burst pressure. I felt some pain when he did my left jugular, but it was not too bad. He gave me a little bit of Fentanyl when I asked for it , but I didn’t want too much. Unlike some people I like to be wide awake to watch and talk to my doctor during the procedure.
The pain subsides as soon as the balloon is deflated. No big deal!
Anyone interested in my experiences can check out my blog at http://www.myliberationadventure.blogspot.com.
Thank you for this very informative post, Julie. I find it disturbing that larger balloons are now being used given that 1) veins are thin and predisposed to injury and 2) the number of MSsers reporting multiple interventions being done to resolve restenosis. Nicole has had three interventions done, two within the span of 4 or 5 months. Is this even typical for a traditional balloon angioplasty?
Yes, it’s typical to have repeat procedures to veins as they are very flexible and some just don’t want to stay open.
The restenoses rate with the larger balloons has reduced greatly.
Regarding the issue of larger balloons, I listened to an audio track of a radio show on CCSVI by a Dr. Bill Code (drbillcode.com) who had ms, and he said there are some new techniques to reduce the need for stents. Any idea of what those new techniques are – he mentioned “expansion of valves” – what does that mean?
Vance
I had the CCSVI proceedure done in Fountain Valley, California in July 2010. I was in a twilight sleep so I could hear much of what was said. They said it would last 1 1/2 hrs but my procedure took 3 hrs. My doctor did not want to use stents so needed to go thru several times to open the blockage. I didn’t feel any pain only pressure. It is a very easy and comforable procedure. My result is that I no longer have any MS fatigue and have much more energy-well worth it. Suzanne
I had my procedure in early January 2011 in Del Mar, CA, with conscious sedation. I could feel the catheter moving around, but it wasn’t painful. I’m very squeamish, but since the picture on the screen was in black and white, I was fine watching it (as opposed to a colonoscopy which is in living color). Once the procedure was over, I had some pain at the puncture site that lasted about 1 1/2 hours, but then it subsided. I was offered Tylenol with codeine, but declined.
I only had mild stenosis – 30% in one jugular and 30% in the azygous vein. The Interventional Radiologist told me that while some people experience immediate relief, for some it can take up to a month, and others never improve. I started feeling better after a month. My biggest MS-related issue has been fatigue, and that has improved noticeably. My energy level is certainly not back to its pre-MS state, however I get more done and have to prioritize less than before – I’m probably 30 – 40% better (though it’s a very subjective determination to make). I just pray that I don’t restenose. If I do, I’m not sure I would have the procedure again due to the cost (my otherwise very comprehensive top-of-the-line “Cadillac” insurance refused to pay). Based purely on anecdotal evidence, it seems that if someone restenoses once, they are likely to do so a third time, and I don’t want to start down that path. I am keeping my fingers crossed and trying to be cognizant of my limitations and not “push it” too hard to avoid “crashing”, which can confine me to the bed for several days. As of today, I am very happy I went through with the procedure, despite my “mild” stenosis, and feel it was money well spent. But ask me again in another six months!
Update – May 18, 2011. I am back to feeling lousy again. The positive benefits lasted about a month. I do not think I restenosed. Rather, since my blockages were rather moderate, I believe I experienced short term benefits. The IR who did my procedure told me I was unlikely to restenose, because I had big veins. Who knew! With the benefit of hindsight, with such a moderate stenosis, I would not go through the procedure again. Unfortunately, I did not find out the details of the stenosis until AFTER the procedure. This is a Catch 22 situation for me. Since the fMRI (under the Haacke/Hubbard protocol) ultimately showed little stenosis and contradicted the venogram, I couldn’t find out my moderate level of stenosis until after I had paid $3,500 + $7,500. I hate to think of someone traveling out of town at great expense, undergo the procedure and have only short term results like me.
Further to my previous post, one issue that I haven’t seen much discussion about is the reliability of the MRI versus the venogram. The MRI I had the day before the procedure used the Haacke-Hubbard protocol. Based on that, I was referred on for the venoplasty. The next day the venogram showed mild stenosis in two veins as described above, but the final report from Dr. Haacke’s office (received about four weeks later) showed virtually no stenosis. I feel that the MRI was a waste of money ($3,500), but the venogram/venoplasty were worth the cost ($7,500).
I had the procedure done in Costa Rica Nov 2010. I was under a twilight sedation. I had zero pain after, only my neck was tender where the balloon was inserted and opened my right jugular. The groin site was slightly tender but nothing that even required a pain reliever. The sedation was quick to pass & I was coherent & very alert shortly after my procedure. My azygos was also 50% stenosed & twisted & I had no pain there either. It was all good & would do it again in a heart beat. With in 4 days my hands were uncurled, I was begining to be able to lift my right foot up & bend my knee. I have improved greatly no longer use a walker or cane, have energy and stamina. Let’s bring this procedure o Canada now!
Xan,
People who are on dialysis often have venoplasty on their jugulars every 31 days if necessary. That is the minimum time between procedures that insurance will pay for it.
My doc told me that we could do it that often if necessary, for as long as it took. Based on his experience treating dialysis patients, he did not see any problem treating veins routinely if that is what it takes to keep them open.
I don’t know about angioplasty which is ballooning of arteries, not veins.
Thank you for such an informative article. I have posted it on our FB page!
Such incouraging stories… I am 44 & have ms, I have been in a wheelchair for 8-10 years now. I would love to know more about how to begin this journey. Any improvment I had would be amazing. I am able to stand but have very poor balance & I am unable to lift my leggs to be able to walk. Loralee’s story has me very curious because she is now able to lift her legg. I do not see a doctor for my ms, because of this I would not know where to begin. Any suggestions or help would be greatly appreciated.
Thx for the help,
Lisa
Hi,
I was a first timer as well. I went through a surgical tourism group called World Med Assist. I went to a wonderful facility in Merida, Mexico.
If I went a second time I now have enough knowledge that I could do it on my own. There are also several places in the USA doing this procedure but not in Canada yet unfortunately.
I saw my Dr. today and so far I need the testing for blockage and I do not know where I can have that done and my Dr. was skeptical about the proceedure What to do? Where is this peoceedure? If I knew I had a blockage I definitely would have the proceedure-the only med I have taken is baclofen and I have seen 2 neurologists that both have said I have secondary progressive MS I haven’t had an MRI since 2008 I have tried to ask my neurologist about this and the only answer I received was not to have it done in Tijauna . All the information I got on the net I was told it is all ads and testimonials were ads too.
I am reading all blogs submitted. all suggestions are appreciated.
Hi,
I wanted to email you about this personally but your email to link on here isn’t working. I’m leaving this comment in the hope you will read it and consider it for a response with a suitable article.
I would be interested to know if you have any views or comments on the following BBC News health article which reveals concerns about the CCSVI treatment currently being provided by one of your sponsored links (the Essential Health Clinic in Glasgow).
http://www.bbc.co.uk/news/health-12637191
They have allegedly been reported to the General Medical Council although no information regarding that report or complaint was included in the article.
We are not currently not prepared to look at this treatment as we are aware that clinical trials have yet to be proven & published, that veins are known to shrink again and that long term effects of the treatment are unknown.
Given that the procedure has received such enormous press coverage (on-line or otherwise) and the procedure has yet to be officially approved I’d like to know
1) how many people believe that they’re actually gaining a benefit from the procedure
2) that it isn’t a placebo effect.
3) why people are having to go back for additional treatments (could this be indicative of a placebo effect?)
4) if stents are being used considering they were also used in the case of the two fatalities.
I am also concerned about whether you are still independent? One of your paid(?) sponsored links is the only clinic (not one of as they say) currently offering the procedure in the UK so how do we know you are offering an unbiased point of view? Are you likely to include any commentary that looks at where the treatment has failed to have an impact or made things progressively worse to find out what/if any effect it had over time?
I think there is too much hype about the procedure. I had it done in Sydney, Aust las November & I hardly felt a thing. They inject you with the sedative in the groin area & for me I only felt a little uncomfortable once or twice, the rest of the time I spent waiting to fell something. I was occupied listening to what was going on around me & I have done meditation before a few times ad I found this helped me when I was ‘waiting’ for something to happen, I took myself away & the next thing I knew they said ok all finished now, so really, I think all the talk & build up of this procedure is getting a little out of hand. I understand it may not be the same for everyone, I had ballooning done & that part did hurt, felt like my head was going to explode but it lasted a few seconds about 2 or 3 times then it was over, I have never had baby but I imagine that would be pain, this procedure is not. Don’t worry so much, relax. Louise
To Lisa and Bev, The standard test is a MRV which is not very good. My test showed no blockage but my interventional radiologist saw something to go ahead with the procedure. I had 80% left, 90% right and 65% in the azygous blockages. I, too, am in a wheel chair and had no change in my legs. My doc said majority of change is cerebral. You need to find an interventional radiologist. They do this type of procedure all of the time. You can read about mine at PacificInterventional.com
Just an fyi. Not sure what area the folks searching for an intervention radiologist are in, but if you google American Access Care, they have about 31 office who do the procedure, particularly on the east coast.
Thanks for the information, I am very encouraged by all of this. I will read up on this procedure & keep checking back for more replies & information.
Thx again for the help & sharing
Lisa
I have read the comments several times and I am convinced that this Liberation method may not work I only can hope this is the answer and I think that the studies may prove this is not a proceedure that may only work for some and maybe attitude is what works . Placebo is proof that it is mind set and I wish my diagnosis was never told to me and believing the diagnosis is my problem, The screening has to be the proper artery and how do you get the proper artery screened? I will again ask my neurologist about looking into this CCSV treatment in the meantime I shall wait for more positive results.
I had the CCSVI procedure about two weeks ago. I had three blockages. On the way home, I noticed my vision was noticeably brighter. I had branch retinal vein occlusion in one eye and central in the other about two years ago. As these conditions are related to circulation, I had hopes that the eye circulation issue may ease up. Over the next several days, I had an overwhelming feeling of well-being…placebo, who cares? And the brain fog, GONE. I have been using acupuncture since I was diagnosed with MS IN 1995 and my practitioner, an MD has been monitoring my blood pressure almost weekly. One thing we noticed is that my blood pressure jumped about ten points for both the top and bottom number. His assessment is that there is a definite physiological change in my body. He can tell that when he reads my pulses also. Except for the blood pressure (which can and easily being controlled with medication) all positive changes and am hoping they continue. Does it work for everyone? Who knows? I’m a seventy year old male who does yoga, exercises three times a week and it sure is working for me.
Hi Bob-your comments are most encouraging. What I am having is foot drop and walking can be difficult as I fall freguently-it is like my foot sticks and if I imove very slowly it gives time to get the message to my foot (delay in message from brain) before I had a double vision looking left-it started in 1984 and I had 3 MRI’s and a lumber puncture that came up negative so I was not diagnosed until 2002 and the Mri was that I had a mild case of MS but seem to be going down hill now- I have not had a test for blockage and still wonder if that is my problem I will continue to pursue the vein thing and hope that is the only problem.
I was Liberated Sept 9,2010. I had both Jugular veins narrow.
The L on hurt a bit – way less then child birth, toothache,etc. It hurt just when they ballooned my L vein just for a moment. Mt R side never hurt at all.
Squeemish not at all, angioplasty around the heart would make me more so.
I feel everyone that has been diagnosised with MS should get Liberated. Then you have a much better quality of life! Remeber you will have to work at rebuilding all the musle you lost, but now you can.
Hi Darlene,
Where did you have the Liberation proceedure done? Did you get the screening for blockage somewhere different than the Liberation proceedure?
Has anyone that have MS had a foot drop and balance problem had the liberation proceedure? Results?
Jury is still out for me. I had the procedure a little over three weeks ago and I’m making myself walk to do my part…I walk about a quarter mile, half using walking/hiking poles. I had a lamenectomy before the MS diagnosis that I think did me more harm than good so my case is not sos cut and dried. My feeling is that the procedure by itself is not enough, you must do your part!
Thanks Bob for your recent comment. I do use my walk aide part of the time and I have some routines that I continue that I learned in physical therapy that help and I was hoping that the liberation surgery would restore me to my original self.So some of the testomonials I saw are only for advertising and not the miracle portrayed I believe the answer is hard work and attitude -we don’t know haw lucky it was to have good health free of any disability,
The procedure was really easy.
The hardest part was having a catheter inserted – you are well hydrated before hand to flush out the dye, but had a pressure bandage and were not allowed to move our legs for 5 hours after – so the catheter was a must.
I was lightly sedated, so my sense of time was all over the place. I thought it only took about 5 minutes, but apparently I was in theatre over an hour.
The was some discomfort when the balloon was used to open my right IJV, the worst of the two, but Marc is right in describing it like descending in a plane. Certainly no worse.
The tiny scar on my thigh has faded to nothing.
It was a very easy op, easier than a trip to the dentist, and I’d have it done again tomorrow if needs be.
Thanks Sue for your comment.My neurologist said we would talk about this liberation method on my next visit which will be in Sept.
He claimed he saw no difference in a patient that had it done and he was going to a conference about this treatment. he said I would have to go to vein specialist to find out if there is a blockage and to see if that is my problem .
So I will wait again.
I do not want to get another neurologist-I have seen another and no other results were given and the one I have has been with the Mayo clinic in Rochester, MN. where I have been and so he knew the Drs. I saw there at Mayo. I do like him and will continue with him and he does answer my questions.
Hello everybody. I’ve ms for 7 years. I was not on a wheelchair but I had several troubles in walking. I could’t walk alone for big problems with my balance. After 100 mt I felt very tired and I needed to lay for hours. The 19th of april I had a ccsvi procedure in Malta (performed by Prof Maleti who h
as worked with Zamboni in Ferrara). How do I feel now?
http://www.youtube.com/watch?v=aCDeeaSA9-8
I want to tell you that my improvement are not only in walking, but also in many other things I can’t show you. I’m playing the piano. Before it was impossible because my right hand was sleepy and I couldn’t move my fingers quickly. My first instrument is the cello and I need much more time to practice because it’s more difficult. I’m cooking alone and driving. I’ll post other videos. The response to ccsvi treatmente depends by the starting situation but everybody had an arrest of progression. So we can say without any doubt that ccsvi is the first medical approach to ms.
Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike “differentiated” cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus.
Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials.http://www.neurosurgeonindia.org/
Has anyone seen the article about Drugs ease crippling effects of MS in the article it talks of the miracle drug-Tsabri -the article said that eight hundred MS patients are on the drug through the Rocky Mountain MS Center and the University of Colorado Denver’s Anschutz Medical campus. This maybe something we can keep an eye on and ask our neurologist about..
Julie -what is your input on this?
I had ccsvi procedure 7/10/12 it made me feel 20-40% better then 10%less 3-4days later, I went to doc in Tampa fl 3days ago, then he sent me for a second ultrasound, they found a clot so I had procedure again yest 7/27/12, they used 2 stents and I didn’t notice anything? They said it would take 1 1/2-2 hours, but it took 5hours cause they couldn’t get in vein. I would do it again cause there’s not much else to do, I suffer from dizziness, spaced out or cloudy, my gait is crud, things get blurry once in awhile, speech has gotten worse. People think I’m drunk and I’m not… If you have any questions e-mail me Ted17tps@hotmail.com I’m not a doc but I know a lol of it…. Thanks Ted17
Greetings! Very useful advice in this particular article!
It’s the little changes that make the most significant changes. Thanks for sharing!