CCSVI treatment available in the U.S.!

[jr5646]

Does anyone know if Dr. Siskin is finding any stenosis in the azygos vein? I am not clear how the catheter venography has been used for the azygos. My concern is mostly selfish as I originally had transverse myelitis and I suspect I might have stenosis in the spine.? Also feedback from patients I might have missed?

Hi Tazbo... I can't really answer your question but have thought about this very same thing... I have transverse myelits as my first symptom/mri and ON my second - ms dx very quick, too.

Does the cath. go thru the azygos to get to the IJV?? I know it goes thru the heart but what about the azygos? From the image perhaps up thru the heart and back down to the azygos... seems difficult?

Image compliments of Donnchadh via Wiki.. Thanks!

I'm heading there in just a few weeks so I'll let you know. I'm hoping for problems to be found and fixed all over the place.. lol and from what I've read the azygos does very well with angio... It would be interesting to see if azygos stenosis contributes to stenosis higher up too..

Anybody else going to be there June 22nd??

[Stix]

Where are the MSers who, like it or not, carry more weight than the rest of us? I remember reading about two Doctors, one in Great Britain and one in Canada, who have had the treatment. I'm sure there are many other Doctors, Nurses, Pharmacists, and other medical professionals that have been tested and/or treated for CCSVI. It would be very helpful if they would report their experience, good or bad, so that we can make more informed decisions and so that, if their experience is good, our anecdotal evidence has more weight. I don't know how best to create this reporting vehicle, but i'm sure one of you do, and suggest that we set it up as soon as possible.

[BadCopy]

We can only speculate. I imagine that some have been tested and treated quietly and would rather not get caught up in the debate in fear of what it may do to their career. And even though a lot of us are chomping at the bit to have our groin shaved and a catheter stuck in our leg, some people do want to wait for a little more testing and results.

Me? Well where is the razor !

[FlashHack]

Stix,
(WARNING: THIS MINOR RANT IS ONLY FRACTIONALLY RELATED TO YOUR POSTING SO FEEL FREE TO DISREGARD IT ENTIRELY)
I would like a magic bullet as much as the next guy. Certainly Liberated people with a medical background carry more weight than the rest of us in this battle and they ARE speaking up. Unfortunately, the reality is that we are not fighting against rational people. These are individuals and institutions with large amounts invested in the status-quo (i.e., the auto-immune theory of MS), and I don't think some of them would be convinced even if God himself came down and told them that they were wrong.

Meanwhile those on the sidelines, who hesitate to believe that trusted professionals could have and act with such blatant bias, feel caught in the cross-fire and are reluctant to take sides. There will be a few brave souls who will dare to buck the establishment and, one-by-one, MSers audacious enough to find them will slip through and get liberated. Studies will get completed. Those on the sidelines will wake up and realize their naivete and the old guard will be quietly swept aside to avoid their much deserved humiliation. Then, and only then, will we read the whole damn story in the New York Times or see it on Frontline.

We have all seen this drama play out countless times throughout history and now we MSers are fortunate/unfortunate enough to be caught up in its latest reincarnation (if you want to see one from the 1700's watch the A&E movie "Longitude" and see if you can spot the neurologists, hint: they keep demanding more research and use the word "anecdotal" ). The good news is that truth will eventually win out. The bad news is that it will have to wade through a lot of crap in the mean time.

Bottom line is that your voice and actions are nearly as effective as the MD's with MS. So keep pushing and don't give up. Get liberated if you can and then wave it in you neuro's face (politely, of course). I know that is my strategy (aside from the polite part ).

(RANT OVER)

[BooBear]

Couldn't agree more, FlashHack.

The more we get out there, the more the message is spread, and the more pwMS will start demanding the treatment. We can't get discouraged and we must remain vigilant.

My one consultation with the IR opened his eyes to something new. I go in for my doppler ultrasound on Monday- ought to be a doozy! I an barely stand the wait.

Whether I get treated locally or in Albany, I WILL be treated. We will ALL be treated!!!

[Stix]

BadCopy, FlashHack, BooBear,
I can't disagree with anything contained in your replies, but I'm not talking about those who prefer to wait until further testing is done or those who still believe that CCSVI has nothing to do with MS. I'm talking about those who have had the testing and/or treatment and have an opinion as to the effectiveness thereof. FlashHack says they are reporting. If so, I believe it would be helpful to have their comments collected in one place and identified as being from a medical professional. I realize this creates the opportunity for abuse by the anti-CCSVI contingent, but I'm sure we can come up with a verifcation system. Either way, I thank you for your comments.

[jr5646]

BadCopy, FlashHack, BooBear,
I can't disagree with anything contained in your replies, but I'm not talking about those who prefer to wait until further testing is done or those who still believe that CCSVI has nothing to do with MS. I'm talking about those who have had the testing and/or treatment and have an opinion as to the effectiveness thereof. FlashHack says they are reporting. If so, I believe it would be helpful to have their comments collected in one place and identified as being from a medical professional. I realize this creates the opportunity for abuse by the anti-CCSVI contingent, but I'm sure we can come up with a verifcation system. Either way, I thank you for your comments.

Stix - This may help.. although, I not quite sure why you are looking in this particutar thread? i myself, don't need a verification system... tims, is full of info. - just have to read the stickies...

Why not just have the catheter venogram and find out for yourself if you have blockages...

if you do, then it is your decision (with the guidance of your dr.) to have the blockages "opened"... a video or "report" will not really seal the deal.. it is a personal choice.. if you're not interested - well, nobody is forcing anybody to have the treatment... if anything, people are begging for it... possibly a shot at halting progression...

Here is one Dr. from Canada:
Dr. Mathew Nomm,
Vancouver, B.C.

A retired GP, was diagnosed with MS in 1985. On March 24, 2010 he flew to India for his CCSVI treatment that included a vein grafting to correct a blocked jugular vein. He has found significant relief from his MS symptoms and continues to improve.

http://www.reformedms.org/

and

http://www.youtube.com/user/ReformedMSSociety

I believe one of Zamboni's original PT's in the study was actually a vascular specialist who had to be re-treated because of re-stenosis...

I think he has even posted here on tims but can't remember his name right now..

formal clinical trials (usa) will need to occur in order to persuade the neurological world.. it "will" happen.. just a matter of time..

Good luck to you.

[BadCopy]

Pending some minor details I will be visiting NY in mid August. It was humerous. I answered the phone and the Scheduler told me I was being offered a date in August and was I interested. Sorry, but I found it hillarious. I could not say yes fast enough. She kind of laughed when I told her I didn't know what the name of the facility was they were going to perform in.

Hope you all get the call soon if you have not already.

[javafreek]

on both jugulars and my azygous. No more brain fog or fatigue. No more double vision. Feel so good! I want this for everyone.

So this actually resolved your double vision? I suffer from double vision on the left, but I assumed it was damaged nerves, not that it could be resolved....

[ErikaSlovakia]

on both jugulars and my azygous. No more brain fog or fatigue. No more double vision. Feel so good! I want this for everyone.

So this actually resolved your double vision? I suffer from double vision on the left, but I assumed it was damaged nerves, not that it could be resolved....

There was an MS patient (man) with double vision before the procedure in Slovakia. His double vision was gone short after the procedure. He had his procedure about 2 months ago in Slovakia.
Erika

[Donnchadh]

Just an update...the IR who did my venoplasty had to submit a proposal to his IRB. Originally I was told it would take 2 months to get a decision.
After waiting 2 months, I called his nurse and was told that it will take "another 3 or 4 months" more.

So, I will have to seek out other possibilities because my progressive MS isn't cooperating by putting itself on hold as I wait for the IR's IRB.

Donnchadh

[thornyrose76]

I would like to goo to New York and i mentioned the other day to my GP that I am planning to and he did say as a doctor I have to tell you the worse case scenario and this "is that if you stent a jugular vein and you have a restonisis you can cause worse problems, such as paralysis, stroke but he says there is only a 15% chance of this." That being said he did say if he had no other options and was in a situation like me he would have the procedure. What I would like to know has any ones physician stated that if you have stents and a restenosis occurs , can the above complications occur as a result? What do the Dr.'s in New York say? Oh he also did say that because restenosis can occur 50% of the time you will be on blood thinners and probably for life in order to avoid this. IF going to New York is there a follow up appointment involved 3 m onths 6 months? I live in WPG Canada so I Will need to know .

[Donnchadh]

I would like to goo to New York and i mentioned the other day to my GP that I am planning to and he did say as a doctor I have to tell you the worse case scenario and this "is that if you stent a jugular vein and you have a restonisis you can cause worse problems, such as paralysis, stroke but he says there is only a 15% chance of this." That being said he did say if he had no other options and was in a situation like me he would have the procedure. What I would like to know has any ones physician stated that if you have stents and a restenosis occurs , can the above complications occur as a result? What do the Dr.'s in New York say? Oh he also did say that because restenosis can occur 50% of the time you will be on blood thinners and probably for life in order to avoid this. IF going to New York is there a follow up appointment involved 3 m onths 6 months? I live in WPG Canada so I Will need to know .

As someone who underwent a venoplasty, only to have the internal jugular veins to re-stenosis, this statement doesn't make a lot of sense.

First, if you have stents implanted the possibility of the vein collapsing is next-to-impossible. That's the purpose of a stent; it's essentially a tubular mesh (see my avatar for an example of a stent) which resists the elastic recoil of the vein. If the doctor is referring to a BALLOON procedure where a stent isn't implanted, then yes re-stenosis is indeed possible and might even be likely over time.

After my veins re-stenosis, my MS symptoms returned but they are neither better or nor worse compared to their pre-op severity. It's like I never even had the procedure.

If you do have stents implanted, then yes it likely your doctor will prescribe a blood anti-clotting drug. How long depends on the doctor's judgment of the risk. This is no different from patients having stents implanted in their arteries. My IR prescribed Plavik 75 mg. for thirty days starting on the day of the procedure.

Donnchadh

[Trish317]

I could be wrong but I seem to remember reading that the doctors in Albany (Siskin, Mandato) do not prescribe anti-coagulants. Maybe someone can confirm that or say that I'm incorrect.

[FlashHack]

I could be wrong but I seem to remember reading that the doctors in Albany (Siskin, Mandato) do not prescribe anti-coagulants. Maybe someone can confirm that or say that I'm incorrect.

I would find this very odd since these drugs are pretty standard for at least a week following a ballooning of the vein and much longer with stents. I believe that the idea is that you are essentially injuring the vein by forcing it open and the thinners prevent the injured area from forming harmful clots.