BMK, Albany, NY, Dr. Siskin and my Liberation

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

BMK, Albany, NY, Dr. Siskin and my Liberation

Postby bmk1234 » Tue Jun 15, 2010 7:30 pm

Good evening all.
I am on the ground in Albany. I have the procedure on Wednesday (tomorrow) at 11:00AM. My aunt is after me at 1:00PM.

Not much to report tonight. I plan to give an update on Wednesday evening.

Don't expect any ground breaking news coming from me. I'm one to sit back and evaluate my condition over time before determining if I am better or not. So time will tell, but I will let you all know how it went and if I suspect any immediate changes.

Take Care.
Blaine
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Postby cheerleader » Tue Jun 15, 2010 7:32 pm

bmk--
I wish you well. Does your doctor know you are posting? Is this OK to do? concerned,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby FlashHack » Tue Jun 15, 2010 7:39 pm

Cheer,
Dr. Siskin's clinic has a 2 web page spread on his site regarding CCSVI and the fact that they are treating people. Rokkit created a thread on it about a month ago:
http://www.thisisms.com/ftopict-11660.html
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Postby Cece » Tue Jun 15, 2010 7:40 pm

Blaine, best wishes for tomorrow!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby cheerleader » Tue Jun 15, 2010 8:03 pm

FlashHack wrote:Cheer,
Dr. Siskin's clinic has a 2 web page spread on his site regarding CCSVI and the fact that they are treating people. Rokkit created a thread on it about a month ago:
http://www.thisisms.com/ftopict-11660.html


THanks, Flash. Just trigger happy. Not around as much, over on FB mostly, and get nervous when I see Drs. names...big apologies, Blaine and only good thoughts for tomorrow.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby SandyK » Tue Jun 15, 2010 9:03 pm

Fantastic! I will be there soon. I wish you all the best :D
Diagnosed 1994, Self EDSS is 6.5
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Postby Vhoenecke » Tue Jun 15, 2010 9:08 pm

I'm with Cheer, he doesn't have IRB approval yet, maybe we shouldn't be shouting this from the rooftops.
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Postby bmk1234 » Tue Jun 15, 2010 9:24 pm

Vhoenecke wrote:I'm with Cheer, he doesn't have IRB approval yet, maybe we shouldn't be shouting this from the rooftops.


Dr. S name has been mentioned numerous times on this site by numerous people in many thriads - 15 total. His phone wouldn't be ringing off the hook if it wasn't for this site. And he would not be currently liberating people if it wasn't for the exposure this forum has given him.

I specifically asked Dr. S in a phone discussion if he was concerned about getting shut down if he didn't have IRB approval. he stated he is not at all concerned about getting shut down.

I'll ask him tomorrow about the status of his IRB. I believe it only pertains to the study he is planning on doing. he is also doing procedures outside of the study - as in me. As of a couple weeks ago he had done over 50 procedures.
Last edited by bmk1234 on Tue Jul 27, 2010 5:27 pm, edited 1 time in total.
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Postby Trish317 » Tue Jun 15, 2010 9:33 pm

bmk1234 wrote:
Vhoenecke wrote:I'm with Cheer, he doesn't have IRB approval yet, maybe we shouldn't be shouting this from the rooftops.


Dr. Siskins name has been mentioned numerous times on this site by numerous people in many thriads - 15 total. His phone wouldn't be ringing off the hook if it wasn't for this site. And he would not be currently liberating people if it wasn't for the exposure this forum has given him.

I specifically asked Dr. Siskin in a phone discussion if he was concerned about getting shut down if he didn't have IRB approval. he stated he is not at all concerned about getting shut down.

I'll ask him tomorrow about the status of his IRB. I believe it only pertains to the study he is planning on doing. he is also doing procedures outside of the study - as in me. As of a couple weeks ago he had done over 50 procedures.


It's also my understanding that their study will only be done with local patients because of the need for frequent followup.

Please give Dr. Siskin and his staff our best regards and thanks for what they're doing. I'm looking forward to meeting him when my darling man goes there.
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Postby BadCopy » Tue Jun 15, 2010 9:49 pm

I also asked Dr Siskin if he thought he may be asked to stop. Obviously a concern of mine seeing as how I am scheduled for mid August. He advised me that he does not expect that to happen. Now we all know that anything can happen but this seems pretty straight forward. Really, just look at the website. If he was really concerned I dont think he would put it out there in plain sight.
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Postby belsadie » Wed Jun 16, 2010 5:50 am

My understanding is that he doesn't need IRB approval since he's doing the treatment independently...not part of a "Trial". The trial is going to involve locals and THAT will need IRB approval
What alot of nopnsense. It seems anything to sabotage this follow up on Dr Z's hypothesis...
I'll be up in Albany, soon..They BETTER NOT close this man down!
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IRB

Postby bmk1234 » Wed Jun 16, 2010 3:04 pm

I had a face to face discussion with Dr. Stoday. This is what he told me in regards to possibility of getting shut down.

“I won’t get shut down. Department Heads have been involved in getting Dr’s shut down. I am the Department Head. I will continue to do the procedure whether my IRB is approved or not. If the hospital for some reason tried to shut me down (he doesn’t believe this will happen either), I own my clinic and I do the procedure there also. I will not get shut down. I will continue to treat people.”

He's a very wonderful man. Kudos to him and his staff.
Last edited by bmk1234 on Tue Jul 27, 2010 5:28 pm, edited 1 time in total.
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Re: BMK, Albany, NY, Dr. Siskin and my Liberation

Postby bmk1234 » Wed Jun 16, 2010 3:07 pm

bmk1234 wrote:Good evening all.
I am on the ground in Albany. I have the procedure on Wednesday (tomorrow) at 11:00AM. My aunt is after me at 1:00PM.

Not much to report tonight. I plan to give an update on Wednesday evening.

Don't expect any ground breaking news coming from me. I'm one to sit back and evaluate my condition over time before determining if I am better or not. So time will tell, but I will let you all know how it went and if I suspect any immediate changes.

Take Care.
Blaine


Dr. S went from my hip to my left jugular in about 1 minute. Once there, I did have reflux present, along with 2 areas of stenosis. Dr. S angioplastied both of these with success. Continuing the tour to the right jugular vein. Dr. S also found reflux and one area of stenosis. He angioplastied this area successfully. I also had a few collateral veins that had developed. For our last stop on the tour, we went to the Azygos vein. One area of Stenosis was found and angioplastied successfully. No stents were needed for any of my stenosis (:~)))).

I feel fine, it’s been about 6 hours since I had the procedure. I think one needs to look at any benefits from the procedure over a time period of weeks/months. With that said, I would say that my left thumb feels a little better and my right leg feels a little better. Time will tell what the true outcome is.

I was Dr. S 35th patient liberated. My Aunt was 36. A quick note on her, she had one stenosis in her left Jugular, one in her right jugular and one in her azygos vein. All 3 were successfully angioplastied. I don’t want to say too much about her condition but she immediately had warm feet. She was able to wiggle her toes and raise her foot which she hasn’t been able to do. So, she’s off to a good start.

It was a good day!
Blaine
thanks for the prayers.
Last edited by bmk1234 on Tue Jul 27, 2010 5:28 pm, edited 1 time in total.
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Misc.

Postby bmk1234 » Wed Jun 16, 2010 3:09 pm

Here are a few misc. items.
• I was told I would have an ultrasound on day 2, this is no longer occurring. I need to stay in the area for 24 hours then I can bolt.
• The procedure was relatively painless, but you do experience a few sharp pains at times.
• Dr. S was training one of his partners on the procedures today. Dr. S performed the angio’s on my jugulars. His partner did my azygos.
• You really can’t watch the procedure on the monitors. Most of the time your head has to stay straight looking up.
• You are provided a CD of the images taken during the procedure.
• In about a weeks time, Dr. S will have performed this procedure more than any other Dr. in North America.
• He is doing 4 – 10 Liberation Procedures a week.
• He is booked through August.
• Dr. Siskin stated he has called back patients that had called on or before 5/18/10.
o He will call the others back, he just doesn’t want to get to far ahead of himself.
o He stated many people have cancelled and this has “wasted some of his and his staff’s time.
o So if you called on 5/18 or before and haven’t heard from them, you might want to touch base back with them. If you called later than 5/18/10, be patient.
• I asked Dr. S if there was anything he would like to say that I could pass on to my MS friends that have shown and interest in the Liberation Procedure. He stated; “Yes, tell them to be patient, if you are on the list, he will get to you. He will call you back. Don’t spend your hard earned money into going over seas for the procedure, he will get to you.”



Blaine
Last edited by bmk1234 on Tue Jul 27, 2010 5:29 pm, edited 1 time in total.
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Postby ikulo » Wed Jun 16, 2010 3:53 pm

Such great news. Thanks for all the updates!!
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