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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Daisy3
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Post by Daisy3 »

Are you guys concerned about the experience of the doctors who will be treating you?
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FlashHack
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Post by FlashHack »

Dr. Siskin trained under Dr. Sclafani (not for CCSVI). His bio is quite impressive: http://www.communitycare.com/MedicalSer ... in_Bio.asp. When I spoke with him on May 16th he had already performed procedures on 15 MS patients. By the time they get to me, that number should be closer to 100.

If you're concerned, you can always wait it out.
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Daisy3
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Post by Daisy3 »

FlashHack wrote:Dr. Siskin trained under Dr. Sclafani (not for CCSVI). His bio is quite impressive: http://www.communitycare.com/MedicalSer ... in_Bio.asp. When I spoke with him on May 16th he had already performed procedures on 15 MS patients. By the time they get to me, that number should be closer to 100.

If you're concerned, you can always wait it out.
I'm UK based and just wondered how people felt. In the same situation with the Scottish clinic in this part of the world..
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BooBear
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Post by BooBear »

Ok, I just left another message. I am transitioning offices, so I did have to tell them not to use my office number (so at least it doesn't look like I am stalking them). I did mention that I have not yet received a call from the doctor as well.

Here's hoping!
Three veins angioplastied.  One renewed life.  
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JCB
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Post by JCB »

I believe as Flashhack, that by the time they get to many of us the experience will be there. Of course they need a few early adopters to use as patients as they learn. Most, if not all of us MS'rs are willing to be test patients, especially as this is a low risk (in my opinion) procedure. I know in my case the risk/reward factor is in favor of the procedure. I've been a lab rat before and will continue to be if the outcome benefits others (and of course I'm always hoping I get benefit too).
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BadCopy
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Post by BadCopy »

BooBear wrote:Ok, I just left another message. I am transitioning offices, so I did have to tell them not to use my office number (so at least it doesn't look like I am stalking them). I did mention that I have not yet received a call from the doctor as well.

Here's hoping!
It took 2 days for them to call me after my first call. This was just to get my info and let me know that the DOC would get a hold of my within a week. Well it took 12 calendar days for the DOC to call. They are extremely busy. I understand people wanting to continue to call back to be sure they didnt get missed. On the other side of that, it will just make them busier. And yes they may think you are stalking them. There are laws against that you know :-) I had called on the first day also.
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SandyK
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Post by SandyK »

I last spoke to the scheduler on May 14th. I didn't think she'd help me. So infuriating!
Diagnosed 1994, Self EDSS is 6.5
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jay123
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Post by jay123 »

If Dr. Siskin says he is keeping a list i n order of contact, he is just be patient.
As I read all these posts from people all over the world, remember don't give up on getting local IR's involved. Dr. Siskin got involved through emails I sent him with links to this forum and Facebook. Now that he is running successfully other doc's will follow, keep trying!
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bmk1234
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Post by bmk1234 »

FlashHack wrote:Dr. Siskin trained under Dr. Sclafani (not for CCSVI). His bio is quite impressive: http://www.communitycare.com/MedicalSer ... in_Bio.asp. When I spoke with him on May 16th he had already performed procedures on 15 MS patients. By the time they get to me, that number should be closer to 100.

If you're concerned, you can always wait it out.
I just got off the phone with one of Dr. Siskin's nurses.
They have now completed 50 procedures, with very good outcomes.
She stated 2 had restenos'd, they then used stents.
A handful tested negative for CCSVI.
She was very positive about their treatment.
bmk
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pklittle
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Post by pklittle »

bmk1234 wrote:
FlashHack wrote:Dr. Siskin trained under Dr. Sclafani (not for CCSVI). His bio is quite impressive: http://www.communitycare.com/MedicalSer ... in_Bio.asp. When I spoke with him on May 16th he had already performed procedures on 15 MS patients. By the time they get to me, that number should be closer to 100.

If you're concerned, you can always wait it out.
I just got off the phone with one of Dr. Siskin's nurses.
They have now completed 50 procedures, with very good outcomes.
She stated 2 had restenos'd, they then used stents.
A handful tested negative for CCSVI.
She was very positive about their treatment.
bmk
That's great news! Thanks for sharing.
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Trooper
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Dr. Siskin

Post by Trooper »

Hi bmk

When u spoke to Dr. Siskin's nurse was it to book an apptmnt date, if so what date are they booking for today ?

Thank you :)
T

I just got off the phone with one of Dr. Siskin's nurses.
They have now completed 50 procedures, with very good outcomes.
She stated 2 had restenos'd, they then used stents.
A handful tested negative for CCSVI.
She was very positive about their treatment.
bmk[/quote]
Diag. '88 - SPMS - CCSVI- Liberated by Dr Moguel - Cabo, Mexico - 7-2010 - Trooper- is my vehicle
jenf
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Post by jenf »

I had the venogram procedure done through Dr. Siskin this past March. Evn though there was no stenosis, I have complete faith in this doctor (which is a rarity now-a-days). If anyone would like to discuss particulars, feel free to pm me and I will be happy to help out any way I can. Plus, I'm local, so I have some experience with docs from this area.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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happy_canuck
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Post by happy_canuck »

I am heading to Dr. Mandato for July 7 treatment! The countdown is killing me.

jay123 -- thank you for opening up this clinic to treating CCSVI!

We are going to stay at La Quinta near the clinic. Any locals with ideas for the clinic itself or for things to do nearby while we wait a few days afterwards, let me know. We need to drive back to Ontario by July 10.

If your appointment is also around July 7th, let me know please! I can be reached through PM or on Facebook (link below).

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />
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Rieja
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Post by Rieja »

@BooBear - that is probably good you called them. I received the initial callback today and I know I called after you.
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FlashHack
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Post by FlashHack »

jenf wrote:I had the venogram procedure done through Dr. Siskin this past March. Evn though there was no stenosis, I have complete faith in this doctor (which is a rarity now-a-days). If anyone would like to discuss particulars, feel free to pm me and I will be happy to help out any way I can. Plus, I'm local, so I have some experience with docs from this area.
Did they only do the MRV, or did they check you out with doppler? No stenosis doesn't necessarily mean no CCSVI. Over 40% of Zamboni's initial study subjects had valve issues or septums that are very difficult to diagnose via MRV alone.
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