This Is MS Multiple Sclerosis Knowledge & Support Community

BooBear wrote: The more success stories we have out there, the more open people will be to the procedure. I can tell you that the Albany team was great!!! Everyone- including the nurses- are aware of the CCSVI procedure and are just as excited as we are when we see improvements. Trust me, guys- the wait is worth it.

Congratulations. How are you feeling? Are you one of the success stories? Please share any details or tips.


edited to add: Nevermind, I just saw your thread you started about your experience...

BooBear wrote:Guys, I write to you from my hotel room in Albany, having been liberated yesterday. Woot!

I was told that Albany is booked through January. They are the only group openly performing this procedure, folks, so it makes sense that they have a huge waiting list. They are working to knock off as many of us from that list as they can.

Congratulations BooBear I am so happy fou you. Let's hear it again
Woot! Woot!

The news however that they are booked through January definitey not woot

That 8 months if we include January were filled before my June 1st call is unbelievable WOW. Although according to the e-mail sent out they weren't booking more than 4 months in advance which means mid December.

If there are MSers out there with November-December appointments maybe you could post and share with us your initial call date to help us anxious people waiting for the phone to ring. I was given a very rough estimate in July in an e-mail in response to question that those with call dates before June 2 would be treated by the end of the year. It was marked by Dr Siskin as a very very rough estimate.

I know there are (I believe I read on this thread) 1500 as anxious and frustrated as I am. Good luck to all with appointments and those anxiously awaiting.

Trish317 wrote:

Firas wrote:Hello,

The CCSVI procedure is not FDA approved and thus it can not be performed in the USA or Canada yet. All these doctors in the US are doing this procedures under the table, and once they get caught they shut down their operations. Majority of these doctors (or Hospitals) don't follow the guidelines and protocols set by Dr. Zamboni to save time and money, and patients end up getting the worst treatment for their MS. The patients thus get stuck with serious complications and they can not even contact the doctor if his/her clinic is shut down.
The Liberation treatment should be done under the guidelines set and applied carefully. Follow-ups are essential and thus doing it (where and when) is serious considerable option.
Even for patients who is traveling outside, make sure the hosting hospital is JCI approved (Gold-Standard Hospitals). As I researched some Medical tourism companies are doing such packages for liberation, but always stay on the safe side and ask questions.

I don't know where you are from but everything you said in your first paragraph is incorrect.

A bit harsh, Trish317, but correct. I have seen this misinformation a number of places in this forum, so I thought I would take a moment...

The FDA does not approve procedures, only drugs and medical devices.

If a Dr. has adequate training and the necessary equipment (i.e. a license to perform surgery, an operating room, assistants, etc.) he can perform the procedure. Where the Dr.'s have been forbidden to perform the procedure, it is by the institution, not the FDA. (One reason might be a fear that the procedure is not accepted as proper procedure and the hospital might get sued if anything goes wrong despite very little risk.)

The IRB is the Investigation Review Board and they approve studies. I am not certain, but I think if the procedure is not part of a trial it does not need to be approved by an IRB. This is especially true of this procedure where angiopasty of veins is routine procedure (for periferal veins for exmple). I think that the docs (e.g. Dr. Sclafani) are waiting for IRB approval beause they plan to proceed only on approved tests.

fogdweller wrote:The IRB is the Investigation Review Board and they approve studies. I am not certain, but I think if the procedure is not part of a trial it does not need to be approved by an IRB. This is especially true of this procedure where angiopasty of veins is routine procedure (for periferal veins for exmple). I think that the docs (e.g. Dr. Sclafani) are waiting for IRB approval beause they plan to proceed only on approved tests.

A hospital may require a doctor to have IRB oversight before any CCSVI procedures can be done. For example Dr. Sclafani has not been able to follow-up on the patients he'd already treated, even though they will not be part of any trial.

Journals will generally only publish research that has been done on human subjects if it is done under IRB oversight. This is actually one of the most painful parts of the fact that docs are submitting for irb approval, getting denied, and then treating in private clinics: we need treatment but we also need the data to be collected, the research done, the proof obtained.

Right, Cece. I think the operatoive word is private. The fact that Dr. Sclarfini works (worked?) at a University hospital required the IRB for the new treatment. Again, I am not positive about how this works in non-University hospitals. However, the FDA does not prevent the Dr. from performing the procedure. It does not need to be "FDA approved."

When I said the statements were incorrect, it was not meant to be harsh. I was simply stating a fact. The statements were, indeed, incorrect.

Trish317 wrote:When I said the statements were incorrect, it was not meant to be harsh. I was simply stating a fact. The statements were, indeed, incorrect.

Trish, fyi I never interpreted your response as harsh. In fact, I'm always impressed by how supportive and happy you are for everyone who is on this journey. You're a sweetheart!

Cece wrote:

CureIous wrote:Yes, even imaging studies are being held up in IRB's.

Do you know what possible reason is being given for imaging studies to be held up? It makes no sense at all.

It's just one more way to insert politics into the equation. Force Dr.s and patients to the fringe where they are easily labeled and alienated. Obviously that won't stagnate the momentum that's building, but sure puts a few bumps in the road while people suffer. Publish a negative finding study on CCSVI in a few months, 9+ for IRB approval for imaging with no horizon in sight. Well, maybe not a bump in the road, more like a Gibraltar sized rock, but those can be worked around eventually too....

newlywed4ever wrote:

Trish317 wrote:When I said the statements were incorrect, it was not meant to be harsh. I was simply stating a fact. The statements were, indeed, incorrect.

Trish, fyi I never interpreted your response as harsh. In fact, I'm always impressed by how supportive and happy you are for everyone who is on this journey. You're a sweetheart!

Thank you, newlywed4ever. I became a member of TIMS in 2008 to find all the information that I could to try and help my darling man after he was diagnosed with PPMS in 2007. Although, I didn't become actively involved until I learned about CCSVI.

I won't say that I understand what anyone goes through with this horrible disease. But I do respect each and everyone of you. You all help me learn more all the time. I appreciate it more than I can say and I pray everyday that there's an answer for everyone suffering.

Mea Culpa never mind

Who knows anything about Dr. Arata (Pacific Center)? they advertise on the web that they treat ccsvi and they are a private clinic so they shouldn't have any IRB issues.

Kate_PghPA wrote:Hi because Dr ***** is NOT PUBLICALLY advertising his services in CCSVI
we on tims refer to 'dr x' whatever, we know who we are speaking of...

just NOT to get Dr H Shutdown as so many have...thanks!!

Do we have any update on the Dr. H situation? He was publicly advertising and expanding his ccsvi procedures (he even posted several times over on Joan's ccsvi in MS facebook page) but then the last word was that he may have been shuffled by his hospital into the usual irb-process shutdown. I have not heard it confirmed.

fogdweller wrote:Who knows anything about Dr. Arata (Pacific Center)? they advertise on the web that they treat ccsvi and they are a private clinic so they shouldn't have any IRB issues.

Also what are the contact names/phone numbers for Albany? I have been looking for about a half hour and haven't found them. Just inept on my part, I guess.

Follow the link on the first page of the thread and you'll get this:
Phone: (518) 262-5149 or (518) 213-0310
Hours of Operation: Monday – Friday 8:00 AM – 5:00 PM

This is for Dr. S in Albany, there is also another Albany doc, but I am assuming which one you mean.

Someone here should be able to answer about Dr. Arata, he has treated people who have posted here about him. He's on the short list of docs who have used ivus! So that part is good.

Fogdweller, check "Katie41 in Poland" and "May-Thurner and MS" threads. Lots of info on Dr. Arata in those.
Katie

Katie41 wrote:Fogdweller, check "Katie41 in Poland" and "May-Thurner and MS" threads. Lots of info on Dr. Arata in those.
Katie

There's a simpler way to search TIMS for Arata.

"site:thisisms.com arata" will get everything out of Teh Google.

ccsviadvocate wrote:Yay, just wanted to say that the Albany office called back and I was home and they took my husband's information down. They say at this point that it will be about December time for his appointment.

Still a long way away but I am happy and thrilled. Doing a happy dance!!!!!

You may get a call from Bulgaria. We got a mid-Fall appt last May and had signed up for an earlier date in Poland, when we got a message from Bulgaria asking if we could come in 2 weeks.

There's a lot of double and triple booking, and when Canada figures out that CCSVI treatment is worth doing, I'd guess fully 2/3 of the traffic worldwide will evaporate.

I wouldn't count anyone out, but I'd want to be sure my prospective doctor had been following developments. The techniques shared in Sclafani's symposium got a lot of people thinking..