Image by nats via Flickr
This Wednesday, March 10, I'm scheduled to undergo a diagnostic venogram, looking for stenosis (narrowing) and/or other abnormalities in my azygos and jugular veins. If any such anomalies are found, they will be addressed via a balloon procedure. The venogram itself involves feeding a catheter from a vein in my upper thigh, through my vascular system, to the veins associated with the central nervous system. In the parlance of CCSVI, this is known as the "Liberation Procedure". (For info on CCSVI, click here)
The procedure will be performed at Kings County Hospital in Brooklyn, New York, by Dr. Salvatore J. A. Sclafani, the Chief of Radiology of the facility. He's also Professor and Chairman of Radiology at the SUNY Downstate Medical School. Dr. Sclafani has a long history of innovation in the field of interventional radiology, and is excited to be at the vanguard of CCSVI research and treatment. He attended the recent CCSVI conference in Hamilton, Ontario, along with all of the acknowledged experts in the field, including Dr. Paolo Zamboni, who developed the CCSVI hypothesis. Dr. Sclafani continues to regularly consult with Dr. Zamboni.
I'm hopeful that the procedure will prove to be of benefit, but I'm also trying to keep in mind the realities of my situation. It's important to understand that my illness is highly atypical. There's much question about my diagnosis, and it's quite likely that what is causing my neurodegeneration is not MS.
The neuro immunology team at the National Institutes of Health has examined me extensively, and has concluded that my disease does not fit any of the diagnostic criteria that are required to label my condition Multiple Sclerosis. They aren't sure what I do have, but one of the possibilities they've talked about is that my disease may be primarily vascular in nature, since a CT venogram done this summer did reveal stenosis very high up in my left internal jugular, unfortunately in a spot that will be difficult to fix. However, Dr. Zamboni has recently expressed the opinion that stenosis high in the jugulars is often secondary to stenosis found lower in the vein, and that addressing the lower stenosis often opens up the upper problem as well.
My primary neurologist here in New York is less convinced that I don't have MS, but agrees that whatever disease afflicts me is highly atypical. I have only one significant lesion, at the very base of my brainstem, which has not changed in size or appearance in the nine years that I've been getting regular MRI imaging. My spinal fluid is clear of O-bands or other evidence of inflammation, and my clinical presentation is at odds with the results of my diagnostic testing. I do have evidence of "autoimmune activity", such as Hashimoto’s Thyroiditis, and some unexplained episodes in my medical history.
As a result of this lack of clarity regarding my diagnosis, Dr. Sclafani and I are unsure as to what Wednesday's venogram will reveal, or that addressing any problems that do show up will have any beneficial impact at all on my condition. If I don't have MS, then the CCSVI theory doesn't even apply to me. However, my disease progression continues unabated, and since I already know that I have stenosis in my CNS venous anatomy, it makes sense to further investigate the possibility that vascular problems may be playing a part in my illness.
Thanks to the diligence and hard work of a very small group of grassroots activist MS patients, who relentlessly sought out physicians who would pick up the CCSVI gauntlet, Dr. Sclafani agreed to look at the available evidence, and upon doing so became convinced that the CCSVI theory has merit and warrants serious investigation. After much study and consideration, he's recently begun performing catheter venogram procedures on MS patients, and has found a high correlation between MS and CNS venous abnormalities. He's addressed these abnormalities using balloon angioplasty, to gently force open the azygos and/or jugular veins of his patients.
I first met with Dr. Sclafani about six weeks ago, and he devoted over three hours to consulting with my wife and me. After first being examined by the hospital’s neurologist, I sat down with Dr. Sclafani to go over the results of the CT venogram that had been done this past summer. The good doctor carefully examined dozens of the images contained in the scan, explaining what he saw in each one to Karen and me.
Since my diagnosis, I've met with some of the most renowned doctors in the land, but have encountered few as empathetic and considerate as Dr. Sclafani. Rather than being talked to, I felt I was being talked with, and Dr. Sclafani responded to all of my concerns and unhesitatingly voiced a few of his own. He was scheduled to go to the Hamilton CCSVI symposium about a week after my appointment with him, and we decided to put off making any treatment decisions until after he attended the symposium and had a chance to consult with the assembled doctors.
Our consultation lasted far longer than had been anticipated, and the doctor’s staff thoughtfully had a car service waiting to take my wife and I home when it ended. Dr. Sclafani personally saw my wife and me out of the facility, then helped me into the car. Other than my primary neurologist, Dr. Saud Sadiq, who is also quite exceptional, I don't know many other doctors who would exhibit such down to earth humanity.
After the Hamilton symposium, Dr. Sclafani contacted me and told me he thought we should move forward with the venogram. His assistant Holly attentively handled all the arrangements, and this past Thursday I went back to Kings County for pre-op testing. Thus far, every step of this process has been handled in a professional, timely, and even (gasp!) cheerful manner. Hopefully, the actual procedure will go just as smoothly...
If I were recently diagnosed, or my symptom profile was more mild, I think I'd wait to see what the coming wave of CCSVI research reveals before undergoing this procedure. The speed with which my disease is progressing, though, makes it not too hard to envision the Wheelchair Kamikaze becoming the Mattress Kamikaze in the foreseeable future, and I'm determined to do everything I possibly can to cut that eventuality off at the knees. Upon my diagnosis, just about seven years ago, I vowed that if this son of a bitch was going to take me down, it was going to take me down fighting, all guns blazing, both fists bloodied, and with bite marks firmly implanted in its skull. This is war, and surrender is not an option.
For those interested in contacting Dr. Sclafani, please e-mail his assistant Holly Barr (email@example.com).
Good luck Mark, I'll be eagerly awaiting your feedback. It will be particularly interesting to see what he finds with your peculiar history.ReplyDelete
Michele aka Dovechick
Best of luck, Marc. It seems you really have nothing to lose, and everything to gain.ReplyDelete
I am not a commenter here but a reader I so hope this works out for you!
I admire your guts and fight attitude so go get em tiger.
I want to wish you the very best of luck with the procedure. I know that I am not alone in saying that we will all be waiting anxiously to hear back from you on how it goes.
All the best and "lykke til" from Norway.
I cheer you on and express my profound gratitude that, once again, you offer us light on the path, even as you yourself sometimes wonder where that light is for you. May you emerge from the CCSVI procedure fully on your way to recovery.
My wife and I will be following this with special attention. Last week she had a Doppler ultrasound revealing a stenosis high in left jugular. She is a 20-year veteran of the Beast Wars, 10 years in a chair. We are seeing a vascular surgeon next week to discuss angioplasty. By the way, this is happening in Costa Rica, where we have lived for five years. The cost of the ultrasound was $58.00. If the surgeon takes her case and does the procedure through the state-run health care system (that dreaded "socialized medicine"), the cost will be zero.ReplyDelete
Wow, good luck Marc! We hope this procedure has a positive outcome for you and we'll be praying for you!ReplyDelete
Good luck bro, you know the whole gang's pulling for you. I know of no other MS patient that has researched and scoured like you, and here you sit ready, it must feel unbelievable to actually push forward with something at this time. Being the No. 1 medical themed blog, because it's so damn good, really makes your case awesome because so many people will be hanging on your journey. I can think of no better ambassador to put this all down for us all to watch.ReplyDelete
Once again, you have all the forces in the universe that I can call on hailed and pulling for you. I don't EVER want to see this blog titled the mattress kamikaze, but not near as bad as you don't want to change it. Good luck man.
If I could sit with Karen in the waiting room and hope for success, I'd be right there with her. Instead I'll be sitting on my mattress, pulling for you both on Wednesday.ReplyDelete
Marc, I wish you a good outcome from the proceedure on Wednesday. There are so many of us rooting for you.ReplyDelete
I have a spouse with MS this site has really helped me. I wish you a great outcome a lot of people are with you.ReplyDelete
Terrific news Marc. I am so hopeful for you and others afflicted with this devastating disease. Best of Luck and God Bless.ReplyDelete
Wishing you all the best Marc. I wish you success as a liberato. I'm so grateful for your blog. thanks.ReplyDelete
I am also here to wish the best results of your operation. I am so excited to read the results. Others, like me, may follow your lead. Speedy recoveries! AarsonReplyDelete
Wow. Best of luck; you've earned it.ReplyDelete
Erika from Slovakia
Best of luck Marc! Here comes that ironic feeling of wishing operable stenosis on someone, but I do hope they find stenosis and can perform an angio for you!ReplyDelete
All the best, Marc! I'll keep my fingers crossed all wednesday. Viel Glueck from Germany!!ReplyDelete
Good luck! Hope everything goes well for you.ReplyDelete
Tessa from Calgary, Alberta Canada
Hey, great! I'm really looking forward to hearing how it goes. My gut feel is that the procedure is very positive, and I'm sure you'll benefit. In fact, if it goes well for you, I'll be making some phone calls.ReplyDelete
Marc, there's a lot to admire in you. Your courage being at the fore front right now. I will certainly be thinking of you on Wednesday and will be sending my best toward the safest and most successful outcome.ReplyDelete
I am sending lots of luck and best wishes for a positive outcome on Wednesday!!!!! I'm so happy for you and your wife. You'll be one of us soon :)
Good luck on Wednesday.
Will be thinking of you.
Good luck!!! I'd be remiss if I didn't add that I spoke to Holly on Friday and she said "please do not tell anyone yet, we don't have the resources to handle any more inquiries than we are already getting. Even if one person told one person, we couldn't handle that volume".ReplyDelete
All the best on wednesday!
Pepe from Spain.
Thanks for all the well wishes and support, everybody. They're all greatly appreciated, and I hope in some small way my blog has helped others as much as you all have helped me.ReplyDelete
Anonymous-I made sure to get Dr. Sclafani's explicit permission to go public with this before posting anything. I certainly wouldn't have done so without getting a very specific okay from him...
Good Luck and best wishes to you and Karen. Looking forward to hearing of oyur results. Stay safe...ReplyDelete
Good for you Mark,ReplyDelete
If you do have PPMS the good news is that the azygous vein should also be involved and it has an excellent chance to remain open after ballon angio.
Even if you do not have classical MS but have CCSVI I would get the angio anyway. I am in a similar situation even though I am still ambulatory with some help so I will follow up your progress hoping you will need to change your name after the procedure to something like " Jogging Kamikaze"
Kudos, bouquets and very best wishes to you and your devoted doctors, Marc. Really can't thank any of you enough!ReplyDelete
Mary from BC
Good luck to you. I have testing scheduled for this Tuesday, March 9th. I had some concerns when Buffalo put their CCSVI study on "hold" but I am moving forward with this because I'm too antsy to sit back and wait. Again--best of luck and thank you for providing an honest analysis of the MS impact on our lives.ReplyDelete
thanks for sharing your journey with all of us, Marc. Jeff sends his reclaimed energy to you. And I just send you xoxoxoxoReplyDelete
All the best Marc....... rooting for you. We started down the liberation rd with my wifes ms but they found major thyroid issues so we have to do that first now....arg.ReplyDelete
In bocca al lupo Marc ! (= good luck in Italian way)ReplyDelete
A well-deserved go for it! And keep on going with your great helpful blog!
Steffi from Italy
Wow. Good luck! As others have said, thank you so much for sharing, and may your procedure be quick, painless, and successful. :)ReplyDelete
Bona fortuna, Marc! We're all with you and eagerly anticipate your reporting back to us.ReplyDelete
Bravo ! Our hearts are with you and your wife...ReplyDelete
Good luck. Can't wait to hear your take on it...
Jen & I will be thinking of you on Wed. Cheers
Best of luck to you, Kamikaze. I hope that you will be dancing with your wife by next St. Valentine's day.ReplyDelete
AKA Johnson - @ TiMS
I read your blog often-- you have a great way with words! Congrats on your upcoming procedure and all the very best to you.(from Calgary, Canada)ReplyDelete
Wow.. sounds like you found some great doctors who are upholding their oath as all doctors should, and doing it with class to boot. Best of luck to you Marc, there is a world of readers cheering for you!ReplyDelete
Sounds like you have a fabulous team. Best wishes!ReplyDelete
Anne in Toronto
I did have one question. What are your hoped-for expectations? Of course having the progression halted. But if this is successful, can the lost time of not using your leg be retrieved?ReplyDelete
Good luck Marc. I hope this gives you the answers and treatment you need!ReplyDelete
Just want to thank everybody again for your wonderful show of support. It's all a bit overwhelming...ReplyDelete
As far as my expectations go, I realize that this is largely uncharted territory. I'll be thrilled if the progression of my disease is slowed down, much less stopped. I'm honestly not expecting to regain any functionality, but of course, I'll gladly take it if it happens...
I can't thank you all enough for your kind words and well wishes. They mean a lot...
Good luck - I remember my doctor didn't think I had MS when I first saw him. After being dxed by someone else and not getting good treatment I changed to him and ever since he's considered me atypical... However my lesions have been numerous but usually fairly large compared to the avg MSer etc... and my symptoms are very reminiscent of losing circulation like when you tie something tight around your wrist etc... I know this will help me and dang it all I'm sure it's going to help you!!! I can't wait to read how you do with this!!! Support and good vibes from a fellow MSer, SarahReplyDelete
Will be thinking of you.
Good luck. and best wishes. I eagerly wait your results as my neurologist has mentioned this to me too. (i have an appt on the 18 in which if it still looks like a good option, i am sure i will be hearing more about)ReplyDelete
Marc...Love your GRIT...All the best for your check on Wednesday...This is a message from New Delhi, India..ReplyDelete
Good luck! It will be very interesting to hear what they find and what they think of it. I'll be waiting for your post!ReplyDelete
Add me to the growing list of people pulling for you. Looking forward to your reportage of positive results.ReplyDelete
well it's the 8th of march...and having just read all the comments and genuine words of support i would like to offer mine...ReplyDelete
Marc you are facing this like a true hero...not only for yourself,you are an example to all those people in a similar situation...the attitude you have adopted is a shining light to all of them...
i wish you the best of luck and happiness..
I wish you my very best friend.ReplyDelete
And thank you.
Keep On The Road MarcReplyDelete
I've never posted to your blog, Marc, but after reading this I wanted to wish you the best of luck. I'll be sending good energy to you, your wife, and medical team!ReplyDelete
Lisa from Kentucky
Marc I too offer you the best of luck! Please keep us posted, you and Karen remain in my prayers! I myself am going to a VS on the 23rd of this month to see what my veins look like.ReplyDelete
Bridget in DeKalb, IL
You are in good hands Marc! Dr. Sclafani will take good care of you! I will be thinking of you this week and wishing you nothing but the absolute best possible outcome!ReplyDelete
buona fortuna marcReplyDelete
lina from italy
Marc, your blog is one of the most thoughtful and interesting I've come across. Whatever variant of ms type condition you have, I'm hoping that Dr. Scalafani can help. It's very encouraging that someone of his caliber is now in the pool.ReplyDelete
Whoohooo! How can I concentrate on work this week? You made my day. Look forward to your next update. Take care.ReplyDelete
Mark, we're all rooting for you. Good luck!ReplyDelete
Wow! I pray everything goes well for you and look forward to reading about your experience.ReplyDelete
Best of luck Mark!ReplyDelete
Marc I mean sorry :)ReplyDelete
Every-time someone has the Liberation Treatment it is significant !ReplyDelete
I wish you the best of luck and we are all pulling for you in Nova Scotia
Sorry to be so predictable but...ReplyDelete
THE VERY BEST OF LUCK TO YOU
Good luck for Wednesday I look forward to hearing how it goes.ReplyDelete
On another matter I know you have read about MS/Lyme Disease and note your comments about vascular problems which are another Lyme symptom for many.
Just wondered if you saw Lorraine Johnson's presentation to IDSA review panel last July. She was at one point diagnosed with MS and then found it to be Lyme Disease about 2.20 along her presentation she shows her Spect scans before and after lyme disease treatment.Just something you might like to see if you haven't already seen them.
Good luck Marc!ReplyDelete
dear WK, I was diagnosed with ppms, six years ago, by a very loving nuro. I too have one significant lesion. And I have been horribly abused before finding the good guy. I was dropping like a rock, heading for that mattress. I too have been fighting like the tazz, but with no help from any doctors.(I'm poor) Two years ago I went the nutritional route, replacing every single food item with one that is completely poison free. For example raw goats milk. I pulled up. Stopped worsening, and then slowly started seeing small improvements. I urge you to try it(if you haven't already) I'm convinced the reason why the veins close again in some people is because they are weak. They are undernourished. Good luck WK! JudeReplyDelete
Let me add my support to the worldwide hug offeredReplyDelete
to you here!
Best possible results is what we wish for you.
Roberta, North Easton, MA
Good luck Marc, this will make a tremendous new view on MSReplyDelete
Stig - Norway
Before doing anything make sure to check out LYME Disease. I have a close relative who was just diagnosed with Lyme, Bartonella, Babesia and Mycoplasma Pn. after 13 years with an MS diagnosis. Check out the Copaxone + MInocycline treatment being used in Calgary producing the best and most promising results. However, expect a long difficult recovery in which you will get worse before you get better due to Herx reaction. In my opinion, this is the biggest crime in the history of crimes. MS is looking remarkably close to Lyme disease to close to ignore. Before you cut your head open please see the movie Under Our Skin which will save my relatives life and may save yours and others reading this blog.
marc - i love you and am wishing you the very best of luck. I will be thinking of you all day on wednesday and sending powerful positive thoughts your way! xoReplyDelete
Marc, wishing you the best of luck. You go guy!!!ReplyDelete
I am in the same boat as you no lesions etc. They were hot to diagnose me with MS because my mom had MS (severe) and my maternal half sister has PPMS. Am progressing very fast. Will be interested in your reports. Terri
All the best to you on Wednesday, Marc and to Karen. You will have the power of hundreds of people pulling for you. That's a tribute to your abilities to express so beautifully what it means to live with the symptoms of MS. Looking forward to having you walking us through the next few days.ReplyDelete
I look forward to your results!! I am in for the study in Buffalo and have a local doctor willing to help me as well but I am at a stand still for the moment. God Bless!ReplyDelete
Marc, I am so happy for you! I will be watching and hoping for the best for you. I am catching up on what is going on with CCSVI. I believe I will be right behind you as soon as I find a doctor in the Houston area that has studied Dr. Zamoboni's procedure. I am The End Of The World Will Have to Wait...ReplyDelete
Starting to count the hours now. I'm very excited for you. If you're able to hand over the worry, I'll hold it for you. Even if you could hand over some of it. This offer goes to Karen too.ReplyDelete
Time has begun standing still. Wednesday is coming.Can't wait to read your next blog and what it has to say. You are so pro-active you inspire me.
You are part of history.Thanks for letting us ride along.
You are part of history. Thanks for letting us tag along.
marc...just recently found your site...it's great. I also have MS,diagnosed 2001, and I have deteriorated terribly in the last 2 years. I recently went to U of VA in Charlottesville & she wants me to be tested for Devic's disease. Ever hear of it? kathyReplyDelete
Patricia in Illinois
Best of luck Marc. Indeed, "surrender is not an option", I love that!ReplyDelete
Best wishes and positive thoughts go out to you! There are a lot of folks interested in your positive findings for this procedure. Thanks sooo much for capturing all that you have on your blog !! Inspirational for all !ReplyDelete
Tim pulling for you in Texas !!
Thanks again for all of the wonderful words of concern and support. They're hoping to keep my spirits up in the hours before the procedure.ReplyDelete
In regards to those who have referenced Lyme disease, rest assured I have been checked for Lyme by two very Lyme literate doctors, and have had my blood tested by specialty labs. I have been assured that I do not suffer from Lyme disease, or any Lyme related diseases. Believe me, I'd much rather have Lyme disease than whatever it is I now suffer from.
Thanks again everybody, this incredible display of support has really touched me...
Marc thanks for posting your treatment. Please keep us informed on the results. My sister has gone from a W/C to a bed and I am praying the Liberation treatment will indeed be successful with MS patients and become available every where.ReplyDelete
GODSPEED to you!ReplyDelete
Marc, I have nothing but positive energy going in your direction from this moment on for a most successful outcome. !!ReplyDelete
Good luck Marc. I will be thinking of you Wednesday and wishing you the best.ReplyDelete
Greg F. in Florida
replied calling you Jesse, didn'have my brain in! Videos very funny. All the very bset of luck to you from here in G;asgow. I was iun the process of planning to travel to CA. to see my girlfriend but seem to have begun my forst major relapse so it is dead scary possibly threatenning the whole relationship. Desperate for Liberation but broke.
Wake up, wake up Marc!!!! It's Wednesday. Will be thinking of you.ReplyDelete
good luck, will be good to hear how you get on. I'm desperate to have this done myself but as always the uk is soooo far behind. all the best, AudreyReplyDelete
Prayers...thinking about you this morning! Hope all is well!ReplyDelete
Please come by my blog and pick up your Beautiful Blogger Award.
Thinking about you today! Good luck!ReplyDelete
rock on kami, rock onReplyDelete
Somebody please update us on Marc! This has been the longest day waiting to hear news on Marc! Please let us know how he is doing!ReplyDelete
Ditto, please update. We are all on pins and needles waiting to hear.....ReplyDelete
Hope to hear all went well and you are ok. Have a good sleep tonight, and catch us up as soon as you can!ReplyDelete
Brenda (Alberta Canada)
Hope you're doing well!ReplyDelete
sending lots of light to you, and waiting with bated breath for your report to us!!ReplyDelete
Ditto. Just a "he's fine" would be great!ReplyDelete
Very eager for a new post to hear your status!! God I hope you are well!!!ReplyDelete
Marc, Karen, if you can hear this blink twice.ReplyDelete
That address does not work!ReplyDelete
Good luck, Mark! Wishing you a speedy recovery with outstanding results.ReplyDelete
I am new to this Blog and am desperate to know how Mark made out could someone tell me soon It has been such a heart warming experience for all of us.MGMReplyDelete
My Physio had this procedure done about 10 days ago, MS Patient, feeling absolutely marvellous and full of energy. Her Jugular vein had collasped, and if she hadn't had the procedure done, she would have been dead within 2 years.ReplyDelete