CCSVI treatment available in the U.S.!

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

Frank wrote:A picture (and also DICOM) viewer that comes for free and without any registration is Irfanview - its imo the best pictureviewer around.
You can download it here: Download at CNET

--Frank
Got it. Thanks!
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Vivianne766
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Post by Vivianne766 »

Trish317 wrote:
Vivianne766 wrote:
ccsviadvocate wrote:Hi Everyone, I called Albany three days ago and received a call for information today. I was really happy as my husband went to the Doctor and I was going with him but decided to stay home in case they called. My son took him instead, so needless to say I was really relieved that I heard back. I would call again if it has been two weeks and you have not had a call back just in case there was a glitch in the system.

The lady I spoke to said that it would be about three weeks before I would receive a confirmation email but that at the moment anyone booking now will be seen about December time......
...well that's great. That tells me that those of us who called earlier as in late May earl June, should have a app. before December.
... hopefully.
It's been a long painful wait for me and everything seems to be dead still.
WE GOT A DATE!!!!

Just thought I'd sneak that in there. lol! My darling man got the call today. His appointment is September 14.

I guess I don't need to say how happy I am. But it's still a little unreal. I found out while I was at work. He emailed me to tell me and it was the longest day of my life because I couldn't jump up and down screaming. lol!

Now I just need to figure out how to keep my hopes and expectations at a minimum. I know he feels like this is his last chance. He was diagnosed with PPMS in 2007. So, if anyone has some advice as to how to keep our hopes and expectations at a minimum, please let me know.
OMG I am so happy Trish.
Thank you for letting us know. I feel hopeful again.
I don't know why you want to keep your hopes and expectations to "min." !?
I'm wishing the "max. best" for you and us all.
:)
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CCSVIhusband
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Post by CCSVIhusband »

That was the hardest thing for me pre-procedure too ... what do you do to keep all the emotions in control?

I was going to blog about it, but then I'm a superstitious person in a very weird way so I didn't want to jinx it.

The questions are about EVERYTHING ...

Will they even find ANYthing?

Will whatever they find be treatable?

Will this do anything for (my wife)?

Is a lawyer going to walk in while she's on the table and stop the doctor?

Is this doctor skilled enough?

What if she's one of the people this makes worse?

And so on, and so on ...

I understand what you're going through Trish ... the only advice I can give is expect NOTHING, and pray for the BEST possible outcome.

The results will likely land somewhere in the middle ... and that (in my opinion), is probably pretty good.
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BooBear
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Post by BooBear »

@Trish: OMG!!!!!! I am so excited!!!!!!! Your darling man must be overjoyed as well!!

Tears of joy!
Three veins angioplastied.  One renewed life.  
Cece
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Post by Cece »

BooBear wrote:@Trish: OMG!!!!!! I am so excited!!!!!!! Your darling man must be overjoyed as well!!

Tears of joy!
I second those tears of joy!! :) :) :)
"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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brave
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Any success stories after procedure in US?

Post by brave »

Hello MSers

I have been following this forum closely for last couple months and I'm waiting to hear my magic date .

I'm wondering , why we do NOT see any posting about success stories after getting procedure done in Albany vs.. many success stores are posted abut getting CCSVI done in Bulgaria
Is the outcome different or what?

Your input is appreciated,
brave
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BooBear
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Post by BooBear »

Brave, look for the "FlashHack is Liberated" post- Flash was Liberated at this center.

I hope to post very positive things after my liberation in a couple of weeks- also from Albany!
Three veins angioplastied.  One renewed life.  
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newfie-girl
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Post by newfie-girl »

i too would love to hear from the Albany group who have been liberated, all info would be greatly appreciated
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Trish317
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Post by Trish317 »

CCSVIhusband wrote:That was the hardest thing for me pre-procedure too ... what do you do to keep all the emotions in control?

I was going to blog about it, but then I'm a superstitious person in a very weird way so I didn't want to jinx it.

The questions are about EVERYTHING ...

Will they even find ANYthing?

Will whatever they find be treatable?

Will this do anything for (my wife)?

Is a lawyer going to walk in while she's on the table and stop the doctor?

Is this doctor skilled enough?

What if she's one of the people this makes worse?

And so on, and so on ...

I understand what you're going through Trish ... the only advice I can give is expect NOTHING, and pray for the BEST possible outcome.

The results will likely land somewhere in the middle ... and that (in my opinion), is probably pretty good.
I'm still in the "is this really happening?" place. He's the level-headed, pragmatic one and I'm the emotional, completely believes in miracles one. But I promised him that I'll keep my hopes and expectations at a minimum. If the results do land somewhere in the middle, that will be wonderful. He has a complicated medical history so I really am praying that this will be a little bit of an answer.

Thank you for the advice, CCSVIhusband. You, perfectly, articulated all the thoughts swirling in my head.
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Trish317
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Post by Trish317 »

BooBear wrote:@Trish: OMG!!!!!! I am so excited!!!!!!! Your darling man must be overjoyed as well!!

Tears of joy!
Thank you, BB! By September 14, I may not have any happy tears left.
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Trish317
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Post by Trish317 »

Cece wrote:
BooBear wrote:@Trish: OMG!!!!!! I am so excited!!!!!!! Your darling man must be overjoyed as well!!

Tears of joy!
I second those tears of joy!! :) :) :)
Thank you, Cece! On second thought, I'll probably cry the entire time he's undergoing the procedure.

Ironically, on Sunday he said he was thinking about forgoing it because of a conversation he had with a woman he went to high school with who works for the MS Society in Colorado, and a guy she introduced him to who's in a similar situation with his MS. My darling man was on vacation in Colorado last week and talked to both people who said that MS has nothing to do with CCSVI. He felt deflated and said he was thinking of forgetting about it.

I got so angry and told him, in no uncertain terms, exactly what I thought of what those people had said. He realized I was right, and Monday he got the call. Actually, I don't think there was anything ironic about it. The call came exactly when it was supposed to.
Rokkit
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Re: Any success stories after procedure in US?

Post by Rokkit »

brave wrote:I'm wondering , why we do NOT see any posting about success stories after getting procedure done in Albany vs.. many success stores are posted abut getting CCSVI done in Bulgaria
Is the outcome different or what?
In the "old days" most people were finding out about CCSVI here at TIMS. So when they got treated, we heard about it here. Now, most of the people in the treatment pipeline found out about it through Facebook or some news story. They don't have any ties with TIMS and there's so many of them it takes a while for one of "us" to get treated and report here. At least that's my theory.
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Hockeydad
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Post by Hockeydad »

Gee I hope all is ok in Albany, I'm supposed to go in November!
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
Cece
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Post by Cece »

Also for every one FlashHack, there are ten nonFlashHack's who read the "don't tell the doctor's name" responses to his in-depth report and who won't be sharing because who needs a response like that.

At first I thought, ok, we won't share the name, but then it sunk in that there were many non-regulars coming here just to dogpile him.
"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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bmk1234
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Re: Any success stories after procedure in US?

Post by bmk1234 »

Albany does a great job.
Here is a thread with my experience.

http://www.thisisms.com/ftopict-12261-albany.html+bmk

bmk
brave wrote:Hello MSers

I have been following this forum closely for last couple months and I'm waiting to hear my magic date .

I'm wondering , why we do NOT see any posting about success stories after getting procedure done in Albany vs.. many success stores are posted abut getting CCSVI done in Bulgaria
Is the outcome different or what?

Your input is appreciated,
brave
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