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

Postby Coolcatcarrie » Mon Apr 18, 2011 6:50 am

Oh no dania! Where were u treated? X
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Postby dania » Mon Apr 18, 2011 6:57 am

Coolcatcarrie wrote:Oh no dania! Where were u treated? X

Bulgaia the first 2 times. Third time with Dr Siskin and last time with Dr Arata. It is not the place. Dr Siskin told me every time you do a venogram you do a little damage to the wall of the vein. Hence scarring.
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Postby Liberation » Mon Apr 18, 2011 7:04 am

dania wrote:
Coolcatcarrie wrote:Oh no dania! Where were u treated? X

Bulgaia the first 2 times. Third time with Dr Siskin and last time with Dr Arata. It is not the place. Dr Siskin told me every time you do a venogram you do a little damage to the wall of the vein. Hence scarring.


It would be good to know how often scarring occurs. The main concept was that we have to go for venogram several times as restenoses will always happen.
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Postby Cece » Mon Apr 18, 2011 7:32 am

I keep wondering what is different about Dania's case because no one else has had 2 veins rendered unusable, let alone 3. Bulgaria was early in being aggressive, with people complaining that it hurt more. Could the aggressive ballooning plus the hypercoaguability disorder have caused this.

I agree Liberation that it would be good to know how often scarring occurs. The word was not even in the vocab here at TIMS last summer.
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Postby 1eye » Mon Apr 18, 2011 7:35 am

Yes. I agree. Do what you, and you alone decide. You can blame me all you want later if that is any help, and you need someone to pin it on, but we all get to live with ourselves. If you get a rose garden, great. Like I said elsewhere, I'm thinking whatever you get will be worth more and last longer the longer you are willing to work on it and wait for it to heal.
Last edited by 1eye on Mon Apr 18, 2011 8:05 am, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby dania » Mon Apr 18, 2011 7:37 am

Liberation wrote:
dania wrote:
Coolcatcarrie wrote:Oh no dania! Where were u treated? X

Bulgaia the first 2 times. Third time with Dr Siskin and last time with Dr Arata. It is not the place. Dr Siskin told me every time you do a venogram you do a little damage to the wall of the vein. Hence scarring.


It would be good to know how often scarring occurs. The main concept was that we have to go for venogram several times as restenoses will always happen.

I guess everyone is different. No rule of thumb applies here.
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Postby Coolcatcarrie » Mon Apr 18, 2011 8:03 am

I agree which is why non of us can say go for it or not, i'de say go for it like lots of others would but equally lots of others would say wait, we've all had the same 'dilemna' and no one can tell u what's best to do.
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Postby MegansMom » Mon Apr 18, 2011 8:39 am

According to Zamboni the earlier the intervention the better the outcome. That is why my daughter decided to get treated early.

She was diagnosed with CIS (early MS) August 19, 2010, and had her liberation Sept 21, 2010.
She works full time, is mom to an active 12 yr old and works out at the gym 3 x a week.
She quit smoking, eats a very healthy diet and makes sure she stays hydrated.
No signs of restenosis have occured.
It still quit early but she has no regrets.

So even if you decide not to have valvuloplasty or venoplasty...

Quit smoking, get regular exercise, stay hydrated and follow the vascular health diet.... These things can make the difference.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby dania » Mon Apr 18, 2011 9:16 am

THANK YOU LR1234!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Well said.
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Postby mavis » Mon Apr 18, 2011 10:59 am

LR1234, this is the best summary I have read so far, it's great.

I would also like to add that everybody (including the treating doctors) are still learning which makes me think that the procedure itself, the pre-screening and post procedure protocol will be evolving too.

My point is I would NOT do anything today if I had minimal disability.
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Postby Cece » Mon Apr 18, 2011 12:42 pm

A very good summary, LR1234, I agree with all of that.
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Postby LR1234 » Mon Apr 18, 2011 1:05 pm

.......
Last edited by LR1234 on Tue Mar 06, 2012 12:16 am, edited 1 time in total.
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Postby dania » Mon Apr 18, 2011 1:37 pm

LR1234 wrote:Sorry for my rant:( didn't mean to come over too negative, thanks guys x
Brian, ultimately the decision is yours and I wish you the best with whatever decision you make x

You have nothing to apologize for. What you wrote was not negative but the truth. And I, for one, thank you for it.
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Postby numbness23 » Wed Apr 20, 2011 9:33 am

WAIT!!!!!!! unless absolutely medically necessary wait!!!!!!!!!!!
the truth of the matter is that as we are all hopeful, we really dont know SQUAT and nobody can argue that.
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Postby brianm » Thu Apr 21, 2011 12:19 pm

Im gonna wait, even though I have felt my m.s. progressing its just been fatigue and nothing else yet. I think if I was having major issues I would go ahead with it. Thanks to everyone here....Brian
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