Montel's announcement

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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blossom
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ccsvi

Post by blossom » Fri Jul 08, 2011 12:04 pm

bump. anyone hear anything?

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Post by Cece » Fri Jul 08, 2011 1:36 pm

Nothing's been posted on the Montel page. It is torturous.

(He came through the procedure no problems, had an MRI afterward with great results, and had a headache for a few days. Everything else is a secret.)

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MegansMom
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Post by MegansMom » Sat Jul 09, 2011 12:34 am

Does anyone know when the Dr Oz show featuring Montel will be aired ? I believe they said generally " in the fall" but do we have a date?
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

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Loobie
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Post by Loobie » Mon Jul 11, 2011 9:19 am

I'll tell you Dake gets some bad press for the stuff that has happened with stents. All I know is when I saw Siskin, he said he had never seen such open, flowing stents and I saw him basically 2 years post procedure. Vive la stents I say! Plus, he's developing some new ones. I'm a fan of them but to say there haven't been complications would be a lie.

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Post by bestadmom » Tue Jul 12, 2011 12:16 pm

on facebook today (i parsed it to make it easier to read):

Montel WIlliam's MS Foundation
My CCSVI Journey

A lot of you have been wondering why I stopped posting right after the CCSVI procedure. As many of you know, it can take months to fully Realize the benefits of the procedure and I want to be sure of the results Before sharing them. Overall I am feeling better and have definitely experienced a dramatic improvement in my balance.

I did not go into this procedure seeking a cure for MS, but was rather seeking out a procedure that I believed, after extensive testing, would improve my overall health and give me some relief from my MS symptoms. The purpose of having the Dr Oz show follow me through this process was to chronicle it and give a full overview of the pros and cons of CCSVI to so many who are seeking accurate information on this procedure. A lot more information than what can be shared on FB.

I do not feel it is responsible at this time to disclose where I had it done (it was in the US) as I want that information to come along with ALL the FACTS. Thank you all for your understanding and continued support.

By: Montel Williams

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Post by Cece » Tue Jul 12, 2011 7:05 pm

That is great news! Dramatic improvement in balance. Feeling better. These are good things. And there may well be gradual improvements to follow. As long as those veins stay open! (Having just had one of my veins redone due to residual tissue blocking the flow, I know it can happen!) But if anyone were to get the best care and the best follow-up care, it would be someone with Montel's resources.

He mentions the 'c' word (CURE). I have been feeling out the possibility that we can use the 'c' word if we are talk about it as a cure for CCSVI.

And the sooner we are all cured of CCSVI, the better....

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leetz
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good news!

Post by leetz » Wed Jul 13, 2011 10:59 pm

good news Montel...Cheer...i dunno know about the "c" word...lol...really though, i had the procedure and the results were only temporary...did not do the stent thing though...so i do think with more research there will be more success keeping the darn things open! mine collapsed again...but we will all see what the future brings...keep faith alway's!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

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Post by Cece » Thu Jul 14, 2011 8:43 am

It sounds like restenosis, so whenever you are ready or able to try again, there should be options. The doctors are working hard to optimize what they're doing. I hear people thinking when venoplasty fails that a stent is the next step, but I think this depends on why the venoplasty failed. If it was undertreated with a too-small balloon, then using a bigger but still safe balloon may be the next step. IVUS gives more information too, there are doctors who would not do the procedure without IVUS (and doctors who would not do the procedure with it). I agree that as much as I think it's exciting to think of this as a cure for MS, all we can really say or know is that it's a cure for CCSVI barring complications or untreatable restenosis.

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:))

Post by leetz » Fri Jul 15, 2011 10:13 pm

agreed! i suppose in my case both myself and my doc agreed to wait for more research because of the risk of perm. damage after 2 procedures..so know i wait and try something else...antibiotics next?
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

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Post by NormB » Sun Jul 17, 2011 9:38 am

Hi people,
This may be off thread but I'd like to share my opinion with the procedures. I had 2 procedures and my first one last fall, I categorized it as a resounding success. I had instant relief and my gait had me standing straight with stamina to my legs so I could stand up for 30 minutes or so. Only my left jugular was ballooned with those great results.
Alas it lasted only 4 months when I restenozed and I could stand for only 1 min. as before. On my second procedure last May I had improvements but not as good as the first one and it turned out short lived as I'm back to the previous state before the first procedure.

Now thinking back especially on the last procedure and stood up within an hour I had good legs stamina but on the next day I had lost a lot of it.
That procedure lasted 3 hrs + and I was oxygenated during the whole time.
I can't help to wonder if the oxygenation had something to do with the initial gains in stamina then as time progressed the oxygen levelled down.
I am thinking to ask my GP to prescribe me an oxygen tank for a week
using it only for the night time and see if the next day if I would regain stamina and for how long. Since our lack of blood flow due to stenosis our body lacks the oxygen to perform as you all probably know. If I could regain some quality of life for a good part of the day due to oxygen enhancement. I don't know many things such as how long it would last during the day but I'm willing to try it and report back on a thread of it's own. What do you think?

Take Care All

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.

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Post by PointsNorth » Sun Jul 17, 2011 9:51 am

Hi Norm,

Merlyn in the "phlebotomy anyone" thread talks about an oxygen tent he bought a short time ago. It's worth reading the last page of this thread and perhaps you could strike up an offline/online discussion with him.

Good Luck, PN
PS I'm heading to Brooklyn next month. Hopefully I'm lucky 2nd time. 1st time was "proof of concept" for me.

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Post by Cece » Sun Jul 17, 2011 10:25 am

He says he's been seeing more improvements in his patients and no thrombosis since refining his techniques. I have my fingers crossed for you, PointsNorth!!

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Post by 1eye » Sun Jul 17, 2011 11:05 am

I do not want this construed as anything but pure speculation, but since the trials of hyperbaric oxygen on MS patients were done in the prone position, where MS patients should have less flow due to stenosis in their internal jugulars (only used in prone position) would the correct thing not be, to re-run those trials, in the upright position?

Also, if oxygen has any effect on recovery, would it not make some sense to try hyperbaric oxygen therapy after the CCSVI procedure, to see if even further improvement can be gained?
This unit of entertainment not brought to you by FREMULON.
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NormB
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Post by NormB » Sun Jul 17, 2011 11:49 am

Hi All,
I'm very interested in hyperbaric tents but it is out of my financial means. The unit I'm refering to are the ones used for poeple with emphysema or the poor man's oxygen tent. In reality I just want to prove or replicate the feeling I had just after the procedure. If oxygen enhancement is good maybe it might be a way for me to gain stamina and waiting for the ccsvi procedures to improve or a drug to prevent restenosis. Maybe I should post my next thoughts to Merlin's thread to prevent the ongoing thread hyjack I started. In retrospect I guess Montel won't show up here to mind.:)

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.

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Post by Cece » Sun Jul 17, 2011 1:08 pm

NormB wrote:In retrospect I guess Montel won't show up here to mind.:)
You never know when Montel will be in the room with you and no one tells you, hey cece, look over there, it's Montel.....

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