This Is MS Multiple Sclerosis Community: Knowledge & Support

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 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.

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.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I guess everyone is different. No rule of thumb applies here.

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.

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.

_________________
Cat (Catherine Somerville on FB)
MegansMom
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-

THANK YOU LR1234!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Well said.

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.

A very good summary, LR1234, I agree with all of that.

.......

You have nothing to apologize for. What you wrote was not negative but the truth. And I, for one, thank you for it.

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.

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