Sunday, March 14, 2010

Details on My CCSVI "Liberation Procedure"

Day 85Image by Okko Pyykkö via Flickr

Okay, folks, here's the skinny on my experience undergoing the CCSVI "Liberation Procedure", and the results obtained from it. For those unaware of what CCSVI or the Liberation Procedure are, please click here.

On Wednesday morning, March 10, my wife and I arrived at Kings County Hospital promptly at 7:45 AM, quite the improbable feat considering my intense loathing of the early morning hours. The hospital is about a one hour drive from my apartment in Manhattan, so we had a car pick us up at 6:45 AM (egad!). I somehow managed to get some sleep the night before, which was important because I had a long day in front of me.

Since my power wheelchair weighs about 300 pounds, making it impossible to transport in vehicles not specifically designed to handle such contraptions, we had to use my manual chair to get my gimpy ass in motion, which I despise (I feel like it renders me completely helpless). Because of the impending procedure, I had to stop taking the powerful anti-inflammatories that help keep my Avascular Necrosis in check, and the pain in my joints was intense. Riding in the uncomfortable manual wheelchair only made it worse.

Although I was considerably anxious, the trip to the hospital was made gratefully tolerable by our Egyptian cab driver, who was extremely intelligent and engaging. Our conversation allowed me to exercise my esoteric knowledge of ancient Egyptian gods, goddesses, and religious beliefs, which I rarely get to do in the course of a normal day (or week, or month, or decade), and telling tales of Isis, Osiris, and Horus went a long way towards taking my mind off of the potentially momentous events of the day to come.

Upon our arrival at the hospital, we took our place in the pre-op waiting room, and waited. And waited. And waited. I did my best to keep anxiety from taking root, trying some breathing exercises and meditation, attempting to stay in the moment and all that crap I like to spout off about, but still the butterflies kept churning away. We were finally called at 10:30 AM, and Karen and I were led to the changing area, where my godsend of a wife helped me out of my civvies and into the usual flattering hospital garb, complete with shower cap hat and rubber soled socks. We then again resumed waiting, until they finally carted me off to the surgery staging area around noon.

In the staging area, I conferred with some of the doctors and staff who would be assisting in the procedure, and Dr. Sclafani and I once again discussed that our expectations of finding anything significant were rather low, since my disease presentation is so atypical as to call my diagnosis into question , and my initial CT scans showed only one small area of stenosis high up in my left jugular, in an area that would be hard to address. I told Dr. Sclafani that I would prefer that he err on the side of caution, and he assured me that this was his intention from the get-go. I'll take this opportunity to sing the praises of Dr. Sclafani, who is an accessible, compassionate man that strove to make me a full partner in the process, and who respected and answered all of my questions and concerns in a professional but truly friendly manner. In short, Dr. Sclafani a very good man. I'm very lucky to have found myself in the care of some exceptional doctors who are also terrific human beings, including my primary neurologist, Dr. Saud Sadiq.

At about 12:30 PM, I was taken into the operating room, and gingerly made my way onto the operating table, with the help of a nurse and two orderlies. An IV was inserted into a vein in my left hand, and I believe the IV was attached only to a bag of saline, as I don't think I was sedated at all during the procedure. I may be wrong, but if there was any sedation, it was quite mild, as I was awake and alert throughout the entire process.

After sterilizing the location that the catheter would be inserted (my upper right thigh, adjacent to the groin area), I was given lidocaine injections in the area to numb it up in preparation for the catheter insertion. The lidocaine injections stung a tiny bit, but weren't really bothersome. Soon after, the procedure began, and the catheter was inserted into a vein in my upper thigh. The actual insertion was painless; all I felt was pressure and some tugging in the area.

The table I was lying on was integrated into an articulated x-ray machine, which changed position almost constantly as the catheter made its way through my vascular system and into my right jugular vein. Dye was injected into the vein via the catheter, so that blood flow could be tracked via x-ray. When the dye was squirted through the catheter, I could hear it as it filled the vein. Kind of strange, but nothing to freak out about. As soon as the dye filled vein was imaged, Dr. Sclafani literally said, "Wow!", and announced that I definitely had CCSVI. The blood in the right jugular was hardly flowing at all, and was blocked by a malformed, very large valve that was stuck almost shut. This seriously impeded blood flow, and forced blood to reflux back into my brain.

Dr. Sclafani tried to open the valve with a balloon device attached to the catheter, and each time he inflated the balloon it kind of felt like my ears were popping, very similar to the feeling you get in an airplane on final descent. He tried to open the valve three or four times, but with only limited success, and does not expect the valve to remain open for very long.

Next, the catheter was fed into my left jugular, and again dye was injected. This time, the x-ray images showed my blood flow to be perfectly normal, and the blood vessel showed no sign of stenosis.

2475295_MS_venogram r and l jugularsThese are some of the actual images taken during my venogram. The first two images show the abnormal right vein and the normal left vein. Notice all the fuzzy grayness on the left most image (right IJ). those are all the collateral veins trying to drain the right side through the vertebral vein. Unfortunately, even the vertebral vein is malformed and doesn't drain properly. The second image from the left is the normal left side and you can see uniform size and no collaterals. The third image is a close up of the abnormal valve, ( it's the gray area between the two areas of black ). Finally the image on the right is a view of the inflated angioplasty balloon.

The final step in the procedure was to explore my azygos vein, which is located in the chest and drains blood from the spinal cord. The catheter was manipulated into the azygos, and when the dye was injected, a small area of stenosis (narrowing) which was restricting blood flow was detected at the very bottom of the vein.

The azygos vein is a very twisty vessel, with lots of nooks and crannies. Unfortunately, the area of stenosis that was detected in my azygous was located in a very hard to reach part of the vein, and despite numerous attempts with different types of instruments, Dr. Sclafani could not access the site of the stenosis.

At this point, the procedure had already lasted over 4 1/2 hours, and the lidocaine that was used to numb the area of catheter insertion started wearing off. Suddenly, things started to become quite painful. I stupidly tried to gut it out for a while, trying to be the "Zen Warrior" that I like to imagine myself, but after a few minutes I realized I was being a "Zen Idiot" and alerted the doctors to the situation. After a few more lidocaine shots, the pain abated, and the procedure continued.

Trying his best to get at the area of stenosis in my azygos, Dr. Sclafani continued to try different instruments and tools in an attempt to reach the stenosis and balloon it open. This part of the procedure was not very pleasant, as I could feel the catheter snaking around inside my chest, creating an uncomfortable sensation of pressure that made me feel like I was having difficulty breathing. After exhausting his entire bag of tricks, Dr. Sclafani finally had to give up and leave the azygos stenosis unaddressed.

At this point, almost 5 1/2 hours after it started, the procedure was over. The catheter was removed, and pressure was applied to the area in which it had been inserted for about 15 minutes. When it was determined that the insertion point was no longer bleeding, I didn't even need a Band-Aid, and I can't even see where the catheter went in.

I was then wheeled into a room to recover, but since I hadn't been sedated, there really wasn't all that much to recover from. Karen appeared by my side, which gave my spirits an immediate boost.

Dr. Sclafani soon came in to explain his findings, which were that the right jugular was seriously occluded, and that although he tried with limited success to balloon it open, he didn't feel that it would stay open for very long. The options for addressing the abnormal valve that is causing the blockage are either the insertion of a stent, or a more traditional surgical procedure in which my neck would be cut open and the offending valve cut out. Neither of these options is particularly appealing, as Dr. Sclafani and I agree that until stents are designed specifically to be placed in the jugular vein, the risks involved in stenting the jugular are largely unknown and could be considerable. He suggested that the traditional surgical procedure might be the best option.

As for the obstruction in my azygos vein, Dr. Sclafani thinks that there is an instrument that he didn't have on hand during my procedure which he could use to reach the area of stenosis and balloon it open. This obstruction should remain open after ballooning, so we might decide to do another catheter procedure sometime in the near future.

After it was obvious that I had come out of the procedure in good shape, I didn't even need to spend the night in the hospital. Karen and I stayed in a local hotel, so that we didn't have to make the trip back to Manhattan, since we needed to visit Dr. Sclafani again the next morning.

Dr. Sclafani is going to consult with other doctors who are working on CCSVI, and determine the best approach regarding the two areas of abnormality he found in my CNS vascular system but had to leave largely unaddressed. We are still on the cutting edge of medicine when dealing with CCSVI, a theory that is still in its infancy, and there is much that needs to be learned.

In short, the procedure was a "successful failure", in that we successfully determined that I do have significant abnormalities in the vascular system associated with my central nervous system (a very important discovery), but those abnormalities unfortunately could not be remedied during the procedure.

As usual, I just can't seem to do anything "easy". While I now know that I do have significant blockages in my jugular and azygos veins, the scientific community still isn't sure that such blockages could be responsible for neurodegenerative damage such as is seen in my case. It stands to reason, though, that having such significant blockages in blood flow can't be doing me any good, and now that I know that I have these abnormal blockages, I would definitely like to get them fixed.

Dr. Sclafani is going to consult with my neurologist, and, I hope, with the neuroimmunology team that has been tracking my case at the National Institutes of Health, so the coming days and weeks should be filled with some important decisions and revelations.

Stay tuned, I'll keep updating Wheelchair Kamikaze with all of the latest news...

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57 comments:

  1. In my best 'zen way'...I simply say thanks for this informative post and your courage!

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  2. Wow, what a finding. Of course, it is disappointing not to have opened up the valve, but you're closer to knowing what the potential culprit is. Posibilities suddenly emerge on the horizon. Wow. Good luck on your continued journey, and thanks for being such an excellent journalist.
    Judy

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  3. I still have good feelings about CCSVI and its relationship to MS, especially after reading your post. Prior to any discussions regarding CCSVI, would anyone have looked into your vascular system? Probably not. And lo and behold--it's a mess. You have once again demonstrated the importance of being your own advocate. Stay strong, Kamikaze!!

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  4. Thank you so much for the detailed description of the procedure, Marc. You've been much on my mind, and I'm glad to hear everything went smoothly. Well, except for the little pain control hiccup...under those circumstances, I'd have to say that Lidocaine trumps Zen. ;-)

    It would, of course, have been better if the stenoses had been successfully treated the first time around, but it sounds like there's hope for future interventions; and you've gathered a lot of useful information.

    Deep bows of love and respect to you, and to Karen.

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  5. Marc, Isn't it a relief to have a black & white picture of something that is wrong with you, and can be fixed? It really hit me when I saw my stenosis images, finally something I could see with my own eyes. After all the years of hearing "unknown cause, no known cure" this was a sea-change for me. My recovery is proceeding well, hope this works for you too.

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  6. Marc,
    All I want to say is THANK YOU so much for keeping us in the loop regarding all the details of your CCSVI procedure. I must admit that I have been checking the site several times a day for an update and was relieved that you were feeling well enough to put in a post today.

    Personally, I have got to belive that having CCSVI has impacted you neurologically. It just makes too much sense. But I do have one question that I hope you are able to answer in a future post. Were they able to find any iron deposits at the site of your lesion? If so, that could possibly explain the question regarding auto-immune activity.

    I will of course continue to follow your CCSVI travels anxiously. I am currently staying at the Hakadal MS Center outside of Oslo and have tipped off my fellow patients about your blog, many of whom are also following your journey.

    I wish you all the very best!

    Ann

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  7. Thank you so much Marc!!!

    This explains very well the problem of pathologic valves...and why restenosis occurs so often...

    Thanks again, also for he pics! This is sooo helpful!

    Steffi

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  8. Always better to know more so you can fight it with understanding.Thanks for the excellent description including happy accidents like your Egyptian cabbie.Sounds like you have a truly great vascular surgeon. Glad you could talk to him too. That can be rare.

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  9. Thanks for the info, Marc. Interesting thought about the surgical options, too. Have to admit my fears about the procedure stem a lot from the insertion of a stent not designed for that location. I didn't even think about the cutting out (and presumably replacing with healthier veins) option - thanks for that. Might be worth looking into after all. So sorry they couldn't fix you right away...
    Many thanks - and recover well. Take it easy - though not overly painful, there was a lot of rummaging around done, so you need to rest and recuperate, okay?

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  10. This sounds really promising: I'm looking forward to updates. You're right about not trying to tough things out - I used to do the Zen Warrior thing and all that happened is that I'd get exhausted, so now I do the Zen Wimp thing and speak up at any discomfort. I found that doctors prefer the Zen Wimp attitude because by dealing with the immediate pain they can relax the body and make their work easier.

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  11. Marc, thank you for this update. I'm relieved to learn the procedure went smoothly and without complication. What a blessing to have such a skilled and dedicated medical team! In the coming weeks ahead, may they bring you good news for ultimate healing and peace of mind to both you and Karen, and may the next procedure return you whole and strong to your family and to us.

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  12. Marc, Your continued posts have given me hope. Thank you. I wish you and Karen all the best. I was diagnosed 22 years ago; I look forward to a day free from this paralysing torturous illness.

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  13. Thank you for sharing Marc and for posting the pics your stenosis. When you mentioned operating on the jugular stenosis, it answered a question I had wondered since the beginning of all this, I was sure there was a way to address this surgically, but please keep us posted on what you discover.
    hugs and again thank you
    Brenda Requier (aka brenda raven)

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  14. Hey Mark,

    I don`t know you, but I`ve been following your story for quite some time. Watched your videos.....really neat.

    Well, keep on keeping on....you sound like you`ve got some amazing doctor there. Cheers,

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  15. Marc, Thank you for sharing this. I think having improper blood flow is the reason my feet and hands feel frozen internally. oh well im not a Doctor but I might as well ask my Primary Doctor and Neurologist if I have CCSVI.

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  16. Better to know the monster you're dealing with than not. I hope that treating these stenosis makes a difference in the course of your disease. How wonderful that Dr Sclafani is willing to consult others for help. Sign of a great man, imo.

    I wish you well and thanks for posting the images. It's great to have good, accurate information online.

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  17. Wish you all the best:>)
    You are probably the only one that keeps me sane.
    I am the unusual case as well, thanks to you I am still hopeful "one day..."
    Jenna

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  18. Bravo Zen Warrior!! You are one of the pioneers in whose 'vein steps' we'll follow....hopefully very soon. Thank you Marc!!! Bev Bentley

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  19. Thank you, Marc. The fantastic detail and images are really helpful. At least you now know quite a bit more about what is going on inside you. Peace,
    Tracy

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  20. Thank you Mark; very informative and concise.

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  21. Glad everything went well for you and that you are on your way to answers.

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  22. Thanks for keeping us/me informed as to the procedures you have done and will continue with, I personally took interest in your articles, I think my diagnoes chronic progressive MS or PPMS as it's now called is possibly they same as your diagnose< I sense that like me you are atrue fighter and will continue until they do manage to clear your veins. I likve in Canada, hence the Liberation Process has not been approved here as of yet, fortunate I am to be part of a sudy inwhich the doupler x-ray will be used, to my knowledge the MRV will not be part of the testing but either way for me anyway, it will be a start. I have been living/exsisting life with MS for the past 30 years of so, I as I'm sure you also beleave the Liberation Process will benifit us both, it
    s just a materr of time, all I can do is what I am very sure you are prepared to do which is, stick will it and as we both know in our hearts,we will benifit our quality of life.

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  23. Oh Great "Zen Warrior" Thank you for sharing the experience with your very illuminated passages.

    Be well,
    -Scott

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  24. Bart from The NetherlandsMarch 15, 2010 at 4:13 AM

    Hi Marc,

    It seems to me that this is very the same as the procedure that was done on me in Poland. My both jugular veins were narrowed and my azygos was OK. I hope you recover quickly and the right IJV doesn't close again. After the operation, the recovery goes very quickly. I was 4 weeks ago in a wheelchair, now I walk my dog again! I hope this will happen to you too! Keep up your blog !!! People need to know this is it, the cure for MS. Hospitals agros the world need to do this simple procedure. This is maybe not the beginning of MS but the procedure helps making people better.

    Keep up the good work and get better soon!

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  25. Thanks Marc, your report is inspiring!

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  26. hi Mark
    Thanks so much my friend. I am sure you WILL GET THERE with your determined and very able approach ...and sheer Zen Power !
    I wish I had your stamina - I thought I was lAZY all those years but not I reckon it was MS FATIGUE and FOG - I cant even suss out how to contact people. Your videos are a true inspiration to all. I know I have had MS since at least 1978 (remember the Optic Neuritis and Parasthaesia).
    I saw Sammy Jo's post - awesome website Sammy thankyou too dear - we SO NMEED to all communicate and you and MARC.
    I am planning to visit a new 'special friend' in Ca. soon but EVERYTHING may depend on my getting the LIBERTN TREATMNT. which I am desperate for.
    (ah love..)It is such a nightmare.
    I am on Thisisms (kevin4apenny), I think and have tried to post you before - kkevvn@yahoo.com

    Keep on keepin on, kev

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  27. Marc - thanks for sharing your x-ray shots! It's nice to know what CCSVI actually looks like!

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  28. Dear Marc , thanks for your story ,to me it was very recognizable .I had the same procedure in Frankfurt with proff. dr.T. Vogl ,in my case the ballooning was succesfull.
    Maybe Dr Sclafani can contact proff.Vogl he is head off the J.W.Goethe -Universität Klinikum in Frankfurt (germany) he is a wonderful doctor with lots of experience in this kind of treatments and is an experimental doctor.
    Wish you all the luck in your battle for freedom!

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  29. I am an avid follower of your life, first time contributor. Just want to say thank you. You have helped me immensely. You've probably helped the medical/scientific communities more than you or they know.

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  30. Thank you Marc, not only for sharing this with us, but for working so hard to get this looked at and treated. I'm sure to you it feels like you are only trying to get your life back, but to me you're clearing a path and providing courage to take charge of my own health and find a way to make sure I don't get left behind.
    I'm so glad we all have someone like you willing to find a way to do what you can and to share it all with us. Your blog has helped me to find the courage to help myself. Thank You.
    -Cindy

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  31. God Bless you Marc! Even though it was as you said it was a "successful failure" it at least has provided useful information on your condition and has the medical community coming together to see what they can do to solve it. I've had PPMS for 10 years now and I have hope for the first time in all those years but I always have the feeling that I'll be that "special" case that they can't do much help. You are a pioneer and trailblazer though! And
    I now wait in anticipation for your posts everyday. Thank you for all that you've done and are doing!

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  32. Marc,
    You are an inspiration, I believe I'm about 4 years behind you in the Progressive part of PPMS. Love your attititude. Remember to tell your angel Karen you love her today. I also have an angel, and our difficulties are equally hard on our spouses.

    Jim

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  33. My brother works for Cordis who sell stents and he says to get a Night Naw or something like that stent placed because it is flexible. Some of the old heart stents would crimp under the pressure.

    Love ya Keep fightin the good fight
    Bless you

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  34. Thank you for articulating your events so well. I enjoyed reading this. Please keep us posted, we are all waiting for the next chapter! There will be a happy ending, I just know it. : )

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  35. Since I saw the W5 show Nov. 21/09 it made sense. To this day it still makes sense. You have proven that it makes sense. Thank for being out there and commenting on the makes sense procedure! I hope all will go well for you!

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  36. Remember when you told me 'Zen assassin'? Dude, those two little words coming from you at just the right time have had more impact on me than... well, than... I don't have the vocabulary to explain to you. BUT! Know that a guy named Moose is still in your corner cheering you on. And another point; what differences have you felt post-op? I know it's still early and wasn't a complete success but a boost in energy? Improvements cognitively? Any changes/improvements at all?

    ---Mooseasaurus Rex (and I am)
    The MonSter that MS fears. ;}>

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  37. Just wanted to say that I'm so glad you came through this all right and many thanks for all the detailed info. -- Thanks also for giving all of us a real grasp on hope. (and some conclusive science!)
    Only the best to you!

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  38. Heart is feeling so heavey for you. Hopefully in time they will be able to figure out all of the hiccups in regards to the procedure. I inttend to get the procedure done sometime in 2010 and am praying to God that it will be successful. Keep fighting and God Bless you.

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  39. Marc:

    Thanks for sharing the details of your experience both good and not-so-good. Dr. Sclafani sounds like a really talented doctor. I emailed his office today in hopes of having him do a treatment on me but haven't heard back.

    I love your excitement when talking to the cab driver about Egyptian gods and goddesses! Take care and thanks again for posting.

    Patrice Wagner

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  40. To all-thank you so much for your sage advice, words of encouragement, high praise (most of it undeserved), and well wishes.

    I wish I could address each of you individually, but the response has been a little overwhelming, so I hope you will forgive me if I try to respond en masse.

    I haven't yet felt any benefit from the procedure, but I'm pretty sure I won't, as the stenosis in my right jugular most likely has not been fixed. I spoke with Dr. Sclafani today, and he's coming up with some creative ways to try to address my malformed and malfunctioning valve.

    To all of you out there suffering through this illness, just know my heart goes out to you. All who fight this disease are warriors, I just happen to be a bit loud about it. CCSVI is yet another piece in the immensely complicated puzzle of MS. Hopefully, it will turn out to be a key piece, and with further research the disease will start to crumble like a sand castle at high tide.

    In the meantime, educate yourself, advocate for yourself, and don't lose track of the fact that despite the disease, life can still be filled with grace and beauty. It may take a bit of rummaging around to find it, but it's there, and the work required to live in the moment and take responsible for your own emotional well-being pays off exponentially.

    Thank you again, words cannot express the appreciation I feel for all of you.

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  41. Marc,
    I am sorry for the mixed results of your recent procedure but happy that abnormalities were found and that treatment may be possible. If I know you this will be forthcoming.
    It was good to see you, Michelle, and Barbara in Mitch's post this morning. You look much younger without the fedora. I wish I could have been there. Continued Best Wishes,

    Charlie

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  42. Hi Marc,

    Thanks for your good humored posting. Things seem to be progressing quickly which is encouraging. Getting first hand feedback on investigation into CCSVI would have ben unheard of just weeks ago. Keep up the good work. Your comments are invaluable.

    James

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  43. That procedure sounds unpleasant to endure, especially as it was so long. It is terribly difficult to be between diagnostic categories or have diagnoses uncertain, and I admire how you handle that with aplomb, more than I do (mine are primarily rheumatologic).

    A Quantum 6000z will barely fit on a Bruno platform lift in a minivan (we measured before ordering). It must be fully reclined with the headrest removed--that can be less expensive than a full van conversion, though it requires standing or help to load it and only certain vans can hold the lift; our public transportation is so bad and distances so far that our van is very close to a necessity for us.

    A bit of a lesson for high speed on wheels that I learned this weekend: if a big dog doesn't heel really well, don't go running with him, because he'll still be accelerating as you hit top speed. Wish I had that on video--there was a bit of screaming involved as I crashed toward a tree but stopped just short.

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  44. Just really grateful. For YOU, dude. And even more grateful for knowing you. So save that humble stuff for someone else. HA! ;)

    Still praying/ sending good vibes/ whatever you need to you. *A Moose is cheering you on!

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  45. Marc, To summarize your experience, the fears and worries exceeded the actual pain or discomfort. The proceedure located the problem. Getting it fixed requires a yet to be designed stent or a graft. The outcome and benefit of either is not yet know but promising. Did I miss anything? Ruth and I keep praying for you. Steven simonyigindele@yahoo.com

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  46. Thanks for the blog, Marc.
    Gives me much more hope than my doctors ever could.

    All the best.
    Hope you can get that right jugular fixed soon.

    Cheers

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  47. Thanks for summing all of that up so beautifully for those of us waiting on our procedures. What you did was certainly a step in the right direction. Wishing you the best and sending you "stay open" vein vibes.

    Jill

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  48. Thanks for sharing your experience Marc. I see my neuro next week and since reading your account, I'm going to ask him about it.

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  49. Marc, thank you for taking us through the procedure with you. I find you a very brave person, and also quite funny. You seem to be almost always up, and that's good.

    Maryann (azoyizes on NT)

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  50. Thank you Marc for these words... :o)

    "In the meantime, educate yourself, advocate for yourself, and don't lose track of the fact that despite the disease, life can still be filled with grace and beauty. It may take a bit of rummaging around to find it, but it's there, and the work required to live in the moment and take responsible for your own emotional well-being pays off exponentially."

    Steffi from Italy

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  51. We are all better off having you in the world.

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  52. Not all doctors are equally skilled at dilating veins, consider looking for a cracker jack interventional radiologist and you will very likely get a different result, 5 1/2 hours is a very long time for this!!

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  53. Nothing ever is 'easy' for me neither...
    I will pray for you Marc...that He Who created you will help you/science find Direct Solutions for these Circulatory Impediments: ccsvi. kate


    Acts 4:10-12

    10Be it known unto you all, and to all the people of Israel, that by the name of Jesus Christ of Nazareth, whom ye crucified, whom God raised from the dead, even by him doth this man stand here before you whole.
    11This is the stone which was set at nought of you builders, which is become the head of the corner.
    12Neither is there salvation in any other: for there is none other name under heaven given among men, whereby we must be saved

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  54. YOu are amazing, thanks for the very well explained procedure you went through. You are a person with MS in a wheelchair and you so strong and brave and not so so angry like so many others that are complaining about CCSVI being ignored and stopped. I see you can easily get this in NYC? AMAZING!! Thank you for all this information and I will think positive thoughts for you always. Elyse

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  55. Hello, I'm writing from Montauban in the south of France where my marvelous partner also has primary progressive MS diagnosed in 1976 and has been a wheelchair kamakaze the last ten years. We are seriously considering the CCSVI theory.In fact, I came across this blog while looking for CCSVI information. Thank you for being so detailed and I will continue to consult your blog.

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  56. Keep trying anything you can. I believe there is an answer out there somewhere. BTW Dr. Sadiq is my Dr. too. What does he think about you doing this?

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  57. Donna from BuffaloMarch 18, 2011 at 3:39 PM

    I am participating in a study in Buffalo, NY. My doctor worked with Dr. Zamboni in earlier studies. I am 1 of 20 who will have the liberation procedure. Here's the kicker; 10 will have the balloons inflated and 10 will not (the study is of course blinded). I'm apprehensive but excited too. I am, by nature, a unlucky person but let's hope that in this case I am one of the lucky 10 and I have significant improvements!

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