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

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

Postby Drury » Thu Jun 17, 2010 7:03 pm

Thank you for all your updates and info. My daughter has a date for MRV on August 28th at Dr. Siskin's office and I am thrilled.


I wish you continued improvements and thank you from the bottom of my heart for being courageous enough to go through with the surgery and giving us hope.

Hope you do not mind me emailing you but was not sure if you would be reading the forum for a while.

Best regards,
Drury
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Re: Dr. Siskin and his staff

Postby pklittle » Fri Jun 18, 2010 4:18 pm

bmk1234 wrote:One of the most important things I forgot to mention is;
Dr. Siskin is a wonderful man, compassionate about his work. He was willing to take many minutes before and after the procedure to answer our questions. Over the past month he has responded to every email I have sent him, usually within 12 hours. I just can't say enough about him.

I will also add that everyone on his staff that I have been in contact with has been wonderful.


ditto
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thanks!

Postby SickButHappy » Sun Jun 20, 2010 11:41 am

Thank you so much for all that info! I've been in contact with him too and he seems so nice and answers all of my emails. I feel blessed to be able to see him shortly.

All the best and keep us updated :)
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Albany

Postby Peaches1 » Wed Jun 23, 2010 12:14 pm

I was treated by Dr S about 2.5wks ago, he told me also, he is not worried about being shut down. The hosp, hotel, Dr S were all great.
I was sedated during, kinda of remember things but you have to stay still with neck straight, I remember I kept trying to look at the screens
...a No, No
I slept 12hrs straight at the hotel. The next day I was walking better but tired. My left leg is weaker and will have to build on strength.
Balance has slowly gotten better, wasn't right away though. I have had MS for 20yrs so I know it will take a while not like others have reported.

Daily headaches are gone, still walking holding on to things.
Find myself cleaning the house
Energy better
Bladder still a problem
Neck is still sore, got 2 stents.....collar bone to jaw bone on left jug
Heating pad on neck in the evening, better sleeping, took awhile to get comfy with the stents at night but getting better

Dr S isn't scared to use stents if needed. I haven't had any problem with them other than the discomfort.....flying caused more pain......NY to TX
Good Luck everyone.....Dr S is a saint.
I pray for his protection every night
Mino/Copaxone, IVIG
LDN, Prokarin
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Postby jr5646 » Wed Jun 23, 2010 4:22 pm

I just had the procedure done yesterday (June 22nd) by Dr. Kenneth Mandato (Dr. Siskins partner - Community Care Physicans, Intervertional Care)... I've felt some weird sensations during ballooning and now experiencing subtle balance improvements, but nothing miraclous yet. He found stenosis in the left jugular and angio.'d three places - feels that it is holding. I can't say enough positive things about Dr. Mandato and staff.. just wonderful, professional and caring. The hospital (Albany Medical Center) staff were excellent too..

The procedure took about an hour and a half... afterward you lay flat on your back for another hour then sitting upright for an hour.. The Dr. and Nurse go over everything with you and then your good to go. I received a disk of the imaging as well. I'll have a followup (via phone) today to see how you're doing... The doppler ultrasound isn't nesessary unless of course they run into problems. I need to stay in the area for 24hrs. since I live quite a distance away in case of any complications. No blood thinners either - they only use them if stenting is needed.

I'm not going to make judgement on the procedure in regards to ms just yet and I'll give it some time to let things settle.. right now I think I'm super sensitive to how I'm feeling... just need to go with the "flow" - so to speak..

I discussed follow-up care also... They recommend 3, 6, 12. and possibly 18 and 24 month ultrasound... Being that I'm not in the area - they will allow you to have the ultrasound done locally (nothing fancy - they don't need to know the Zamboni protocal) and we can forward the imaging disk to them. If a referral is necessary, they will provide it as well as a script if necessary.

If anybody has any questions, please feel free.

I have to say a huge thanks to THISISMS members for helping/sharing.. I'll do my best to share my experience(s) as well.

Lets hope this procedure becomes readily available quickly.. here's to healing.

-John

*** For those still waiting please hang in there... it looks as though they will have three IR's doing the procedure soon. Up until now, I was told Dr. Siskin does approx 10 per week. The nurse mentioned they have over 100 procedures completed collectively. Its happening..
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Postby thornyrose76 » Wed Jun 23, 2010 6:26 pm

I feel really stupid asking this but how do I pm you bmk1234? Or if anyone else can instruct me how to I would be grateful! :)
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Re: Albany

Postby thornyrose76 » Wed Jun 23, 2010 6:36 pm

Peaches1 wrote:I was treated by Dr S about 2.5wks ago, he told me also, he is not worried about being shut down. The hosp, hotel, Dr S were all great.
I was sedated during, kinda of remember things but you have to stay still with neck straight, I remember I kept trying to look at the screens
...a No, No
I slept 12hrs straight at the hotel. The next day I was walking better but tired. My left leg is weaker and will have to build on strength.
Balance has slowly gotten better, wasn't right away though. I have had MS for 20yrs so I know it will take a while not like others have reported.

Daily headaches are gone, still walking holding on to things.
Find myself cleaning the house
Energy better
Bladder still a problem
Neck is still sore, got 2 stents.....collar bone to jaw bone on left jug
Heating pad on neck in the evening, better sleeping, took awhile to get comfy with the stents at night but getting better

Dr S isn't scared to use stents if needed. I haven't had any problem with them other than the discomfort.....flying caused more pain......NY to TX
Good Luck everyone.....Dr S is a saint.



I pray for his protection every night



Are you going to see a physiotherapist to at least try to rehabilitate?
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PM

Postby bmk1234 » Wed Jun 23, 2010 6:42 pm

thornyrose76 wrote:I feel really stupid asking this but how do I pm you bmk1234? Or if anyone else can instruct me how to I would be grateful! :)


Hello Thorny
At the bottom of each post you will find a PM button. Go to a post by me, bmk, and hit the PM button. That will send me a private message. You can view your inbox from the left side of the screen, you will see how many PM's you have.
bmk
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Postby thornyrose76 » Thu Jun 24, 2010 11:46 am

ding dong, hello!! :oops: Didn't realize that, thanx!!
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Postby Vivianne766 » Fri Jul 09, 2010 9:52 am

jr5646 wrote:I just had the procedure done yesterday (June 22nd) by Dr. Kenneth Mandato (Dr. Siskins partner - Community Care Physicans, Intervertional Care)... I've felt some weird sensations during ballooning and now experiencing subtle balance improvements, but nothing miraclous yet.
y.

If anybody has any questions, please feel free.

I have to say a huge thanks to THISISMS members for helping/sharing.. I'll do my best to share my experience(s) as well.

Lets hope this procedure becomes readily available quickly.. here's to healing.

-John

*** For those still waiting please hang in there... it looks as though they will have three IR's doing the procedure soon. Up until now, I was told Dr. Siskin does approx 10 per week. The nurse mentioned they have over 100 procedures completed collectively. Its happening..



Hope you are feeling better and better everyday. I am one of the many waiting for the doctor's call. ......sigh.........
I got an e-mail from them on Jul. 2nd. Do u happen to know how long it'll take for someone to call from doc's office. I know things are probably different now from what it was a month ago. Well wish us luck and keep us updated. :)
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Postby bmk1234 » Fri Jul 09, 2010 10:59 am

Vivianne766 wrote:
jr5646 wrote:I just had the procedure done yesterday (June 22nd) by Dr. Kenneth Mandato (Dr. Siskins partner - Community Care Physicans, Intervertional Care)... I've felt some weird sensations during ballooning and now experiencing subtle balance improvements, but nothing miraclous yet.
y.

If anybody has any questions, please feel free.

I have to say a huge thanks to THISISMS members for helping/sharing.. I'll do my best to share my experience(s) as well.

Lets hope this procedure becomes readily available quickly.. here's to healing.

-John

*** For those still waiting please hang in there... it looks as though they will have three IR's doing the procedure soon. Up until now, I was told Dr. Siskin does approx 10 per week. The nurse mentioned they have over 100 procedures completed collectively. Its happening..



Hope you are feeling better and better everyday. I am one of the many waiting for the doctor's call. ......sigh.........
I got an e-mail from them on Jul. 2nd. Do u happen to know how long it'll take for someone to call from doc's office. I know things are probably different now from what it was a month ago. Well wish us luck and keep us updated. :)


I would guess 4 to 6 weeks, someone else might have a better idea if they've gotten a call recently.
bmk
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Dr Siskin

Postby lodgernz » Sun May 08, 2011 9:49 pm

Folks, this is just an observation: I've watched Dr Siskin on video, and it's clear to me that he has Nystagmus. Whether it is inherited or acquired is not so clear. If it's acquired, he could well have MS himself.
Whatever, he is clearly on our side. Love him.
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Postby sou » Sun May 08, 2011 11:05 pm

If nystagmus occurs very early in life (in nfancy) the brain adapts to it and the person does not suffer from oscillopsia (which means that everything you see moves uncontrollably).
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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funny

Postby leetz » Mon May 09, 2011 9:43 pm

I have met with dr. Siskin on many occasion's...never noticed that...dunno why that would even be on this thread when HE is the only one that initially had ball's enough to do this treatment in Albany....let's focus on what really matter's here..
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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Postby lodgernz » Tue May 10, 2011 1:26 am

Leetz, just pointing out that even though Dr Siskin may have his own problems to deal with, he still thinks of others first. I'm praising him. Sorry if you missed that.
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