Comments on Wheelchair Kamikaze: Details on My CCSVI "Liberation Procedure"

I am participating in a study in Buffalo, NY. My ...

2011-03-18T15:39:54.935-04:00

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!

Keep trying anything you can. I believe there is a...

2010-09-21T20:08:09.243-04:00

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?

Hello, I'm writing from Montauban in the south...

2010-06-26T11:20:32.398-04:00

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.

YOu are amazing, thanks for the very well explaine...

2010-05-20T20:50:40.143-04:00

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

Nothing ever is 'easy' for me neither... I...

2010-05-14T07:19:03.306-04:00

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

Not all doctors are equally skilled at dilating ve...

2010-04-10T15:23:17.660-04:00

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!!

We are all better off having you in the world.

2010-03-23T13:45:37.443-04:00

We are all better off having you in the world.

Thank you Marc for these words... :o) "In t...

2010-03-20T04:06:22.565-04:00

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

Marc, thank you for taking us through the procedur...

2010-03-19T11:41:44.096-04:00

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)

Thanks for sharing your experience Marc. I see my ...

2010-03-19T11:17:55.094-04:00

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.

Thanks for summing all of that up so beautifully f...

2010-03-18T20:30:21.577-04:00

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

Thanks for the blog, Marc. Gives me much more hope...

2010-03-18T14:23:22.391-04:00

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

Marc, To summarize your experience, the fears and ...

2010-03-18T12:34:55.429-04:00

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

Just really grateful. For YOU, dude. And even more...

2010-03-17T19:20:35.683-04:00

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!

That procedure sounds unpleasant to endure, especi...

2010-03-17T10:01:07.142-04:00

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.

Hi Marc, Thanks for your good humored posting. Th...

2010-03-16T20:57:27.981-04:00

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

Marc, I am sorry for the mixed results of your rec...

2010-03-16T10:16:33.915-04:00

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

To all-thank you so much for your sage advice, wor...

2010-03-16T00:10:36.548-04:00

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.

Marc: Thanks for sharing the details of your expe...

2010-03-15T20:32:22.404-04:00

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

Heart is feeling so heavey for you. Hopefully in ...

2010-03-15T17:35:40.253-04:00

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.

Just wanted to say that I'm so glad you came t...

2010-03-15T15:45:01.865-04:00

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!

Remember when you told me 'Zen assassin'? ...

2010-03-15T14:09:30.287-04:00

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. ;}>

Since I saw the W5 show Nov. 21/09 it made sense. ...

2010-03-15T14:02:58.365-04:00

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!

Thank you for articulating your events so well. I...

2010-03-15T13:52:48.153-04:00

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. : )

My brother works for Cordis who sell stents and he...

2010-03-15T13:14:33.112-04:00

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