Saturday, May 8, 2010

Amazing Pre and Post CCSVI Liberation Procedure Videos (Updated)

The following videos were posted to YouTube by MS patient named Denise. I don't have much information about her, and I don't know where her procedure was done, or if balloon angioplasty or stents were used. Upon watching these videos, though, the results speak for themselves. If you are unfamiliar with CCSVI or the Liberation Procedure, please click here.

Here's the video taken a few days before the patient underwent the Liberation Procedure:

And here's the video taken less than 24 hours after her procedure:

Obviously, the improvements depicted are startling. I've been in touch with many patients who have undergone the procedure, both on the Internet and in person, and although many have reported improvements in their condition, this is one of the most dramatic cases I've seen/heard of.

It's hard to know what to make of these results. I don't think the patient in the videos above was "faking". Of course, I've no proof of that, but it would be a hell of an acting job if she was playing make-believe.

Naturally, it's thrilling to see such improvement, and I certainly wish that my procedure had gone as well (click here for info on my Liberation Procedure). From a scientific and medical standpoint, though, it's difficult to understand the mechanism behind the improvements depicted in the videos.

Certainly, less than 24 hours after the procedure, the reversal of nerve damage could not account for such a fast turnaround of symptoms. Nerve cells simply don't heal that quickly, and if damaged enough, they do not heal at all. I think it's safe to rule out nerve regeneration as being responsible for the improvements seen above.

The only other explanation I can come up with is that the opening of the patient's jugular vein had a remarkable anti-inflammatory effect on her CNS, which would mean that most of her problems were caused by inflammation, rather than actual nerve damage. Steroids are given to MS patients because of their powerful anti-inflammatory properties, and in some patients the beneficial action of steroids can be quite rapid, but not nearly as fast or as powerful as those that we see in the above videos. It generally takes cells at least a few days to recover from inflammation, so this solution too is problematic.

Dr. Sclafani, who did my procedure, reports that some of his other Liberation Procedure patients displayed surprising improvements soon after the procedure, but that in many cases these improvements were short-lived. Dr. Sclafani's sample size is small, though, so not much can really be read into them.

Whatever the reasons for the startling results seen in Denise's videos, I certainly hope she has lasting benefits, and continued improvement in her condition. As more and more research gets done on CCSVI, answers to the many questions surrounding the theory should start coming in.

Full-scale trials of the Liberation Procedure will be getting started this summer, and recently the government of Kuwait announced that all Kuwaiti MS patients will undergo the procedure, paid for by the state-funded medical system (click here for info). Kuwait has some 5000 MS patients, and it's expected that 10 patients per week will be getting "liberated".

Within several months, we should start getting some hard data regarding the effectiveness of treatment and the validity of CCSVI. For hundreds of thousands of MS patients, this data cannot come too soon...

IMPORTANT UPDATE: Wheelchair Kamikaze reader (and good friend) Bestadmom posted an alarming update on Denise's condition, which deteriorated about a week after her procedure. I'll include a brief summary of what happened here, and you can read a full account of the problems Denise encountered (in her own words) by clicking on the comments link, below, and reading Bestadmom's very informative post.

In a nutshell, Denise's condition reverted back to her "pre-liberation" days, with a sudden onset of her old symptoms. A return trip to the hospital where she had her liberation done showed that the stents that had originally been implanted during her procedure had restenosed and had to be removed (I was not previously aware that stents could be removed). A new set of stents was put in place (based on her account, it seems that four new stents in total were implanted), and the situation must have been dicey, since a neurosurgical team was put on standby.

The second procedure seems to have been pretty rough on Denise, but she is reporting that her symptoms do appear to be resolving once again.

Denise's experience is an enlightening example of both the promise and perils of the current CCSVI situation. Clearly, CCSVI offers the MS population real reason for hope, but the study of CCSVI, and its treatment, are still in their infancies. Techniques and materials need to be refined and developed specifically for the purpose of intervening in the array of venous blockages that have come to be known as CCSVI. This can only happen under the auspices of scientifically valid trials, whose progress can seem agonizingly slow for a patient suffering from progressive and debilitating neurologic disease.

Discretion is often the better part of valor, and it's very easy to allow hope to eclipse reason when one is staring at the dark at the end of the tunnel. Each of us needs to make their own determination of their tolerance for risk, but as more and more is learned about CCSVI, and its treatment, the risk profile associated with CCSVI should decline considerably. As previously stated, the next 6 to 12 months should be very telling.

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  1. Holy ...cow. That made my day. I will be listening tonight. Good luck!

  2. Just read this in This Is MS:

    Update from Denise again:

    5-7-10 Last night was like the nights before my Liberation. How scary that was! My legs starteded the twitches and tremor along with the body shaking and that horrible MS hug.

    The rushes of heat liquid through my heart and chest were as bad as they were when I was having that spiral worsening of the disease. My balance became very wobbly and I was just miserable.

    Going into the procedure this time was less troubling mentally. I knew all the nurses and doctors and the know me. So hugs all around when I walked in..although I did need my cane this day and I hadn't needed it in a week.

    Anyway same as before except.................. The top part that appeard to have been collapsed had totaly shut down blood flow to the vien and the blood was going back up and trying to go around it's old route. (Thus that hot liguid sensations to the heart-NOT anxiety folks, that's your heart not getting the blood back to it. I will be researching that more in depth.)

    The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons.

    Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. He moved it up to a higher area in the confluens of the left jugular and the other has been lowered in the clavical area of the jugular.

    Well, then the center was collapsing so 2 more were placed center. Neuro-surgery was on stand by just in case, but wasn't needed. Let me tell you, I'm just a difficult case, this is all not usual. Remember how bad my vein was to start? Dried blood clots in a live human body.

    This time after the procedure I needed a shot of morphine. The pain in my ear was horrible as well as in my neck. But, I didn't need my cane to walk out of the hospital again! The burning pinching pain that started down my arms and legs again was gone, the pressure that had built up in my jaw and left face is gone again.

    The long trip home was rough for me, every bump in the road radiated through out my body as I dozed in and out of sleep. When I got home I popped you all a note, drank a couple of pain pills and went to bed.

    5-8-10 Wow! I had dreams last night! Still in stiff pain today but getting better again. My balance is back! My boyfriend hired all the 'kids' (17-24 yr olds) to babysit and wait on me.

    This time around was very difficult and I'm tired and weak today, but will need more quiet healing time. I suppose things happen for a reason and you all need to know not to take this lightly.

    Not meaning to back off, but to make sure you are going with a very skilled doctor and facility that can back your doctor up. Just more reason why we need to get everyone taken care of as close to home as possible. Not everyone will fly through this with ease.

    I'm thinking that those of us with more extensive damage and disease in the first place are going to have a more difficult time. Probably because we have been left untreated so long and just more of an indication as to why we must pust ahead. Time is not just brain, it's vein!

    I'd like to know how they got the stents out.

  3. First, I'd like to thank you for your research and candidness on this blog- Was was just told about it and have been reading for a couple hours to catch up..

    Even with the 'update' from Denise, it still is remarkable how well she was doing 24 hours after liberation. I think some of these endless studies of CCSVI should be focused on how to perform the liberation more effectively, to help people like you and Denise have a successful treatment. Seems like there is just too much time wasting while they study the 'should we' instead of the 'how do we'.
    I was in the Buffalo study. I don't know about anyone else, but I was believing that a liberation study was starting this spring. It is, and I applied, but 30 patients?! I thought playing the lottery was useless....

  4. this is incredible...very inspiring and hopeful. I wish the procedure had given you this kind of relief too. Hang in there. Thank you so much for sharing this post, for allowing us to see what's possible. I hope Denise continues to do well. Don't you wonder if there are multiple diseases that are lumped together as MS? I do. Maybe one procedure/medication can't fit all because we are living with several diseases with one blanketed name. It looks so different in everyone, our abilities and disabilities, pains, numbness, energy levels? Feels like many more questions than least for now.

  5. There is another set of 'before and after' videos linked here, as well as a detailed report:

  6. Thanks for once again giving a balanced description of CCSVI which still includes an ingredient of hope.

  7. Terrific that you're doing so well after the procedure!
    Let's hope that all new procedures & MS drugs get unrestricted access to all MSers!

  8. Marc,

    Thanks for your well-balanced and clear-headed posts.
    Poor Denise, she went through hell, and unfortunately it is not over yet.

    Everybody needs to understand the tremendous risk of venous angioplasty, it was never been considered safe and ‘innocent’ procedure, remember the ‘famous’ paper from Zamboni where he mentioned that Ethic Committee allowed to perform venography only when it was adequate by condition and prohibited to perform it on healthy individuals. Even simple neck’s veins venography is potentially dangerous and ultimately leads to internal jugular valves damage (read: man-made reflux).

    In recent media you can find the words such as “easy MS treatment, safe procedure, breakthrough” and so on, it gives me goosebumps.

    Let’s use the analogy with PC. Imagine you have a hardware problem (sort of structural damage in main chip/processor) which leads to tower overheat and various software malfunctions. If you believe in CCSVI, then you take a nail and a hammer and punch some additional holes in the tower of the desktop. Well, you’ll reduce overheating, some of software will work better/stable because of this, but it will never ever fix the main chip, or fix the software which mainly depends on processor configuration.

    Some videos on CCSVI procedure, aired on TV(!), are simply disturbing, actually you can build a legal case against ‘CCSVI fix’ performed doctors (using these videos), by accusing them in trickery and unnecessary intervention, maybe one day an independent angiologist will publish the full analysis of what happened there and how tricks were made.

    BTW, in previous post you speculated about anti-inflammatory effect of venoplasty, there is no such effect, what happened was connected with fast reduction of intracranial pressure supratentorially.

    Kind regards


  9. Hi I just wanted to no actually needed to let all who read this blog that BR and his comments above are so ridiculous, perhaps he has MS or not or perhaps he is one of the Neurologists that have and can do nothing for MS but cling onto the money machine even though it is proven to be a Vascular problem without doubt, BR's comments are not based on any research or truth....he is a scare monger....who's comments should not even be on public display......

  10. PS......In case anyone is wondering I am a Dr who has had a very close ling and researched MS for many years, that where I base my knowledge and my comments on, People like BR and the broader Neurological community out there, are stopping MS sufferers from being saved by either their lack of knowledge, fear or greed.......please please disregard BR's comments CCSVI is the answer and is far less intrusive or dangerous than any of the "drugs" prescribed for MS......all Operations of course have a risk but CCSVIis so minimal its not even worth talking about.......and for everyones information Denise has become stronger and better since her second operation and continues to and is making a full recovery.

  11. I am skeptical that Ace is a doctor. He does not write professionally. I would take his comments with a considerable grain of salt. My wife has MS we are looking for answers, not drivel. Is there a repository where statisitics are kept of adverse reactions or deaths? We have heard rumours that there have been 2 deaths related to the procedure among MS patients. Our GP was going to do a referal but backed out becuase he learned this at a conference.

    Has anybody got a credible source for such information?

    I am a lawyer, not a doctor.

  12. As a Lawyer you should be more sensitive than to call someones comments dribble, and perhaps not listen to rumours, one patient had a stent migrate, the other died of an unrelated condition....Dr Simka has responded to the rumours of "not safe" is his response.......I take no offense that you called my comments dribble......or that you question my Doctorate