Also, this may be a stupid question (but I need arguments for the Polish doc), did Zamboni use IVUS or did Sclafani start with it ?
Thanks for your help !
Hi Girl69,girl69 wrote: Anybody else feels something could have been missed there ?
I have same feelings and I am wondering if something was not missed in my case too. I already had my 2-month check-up with dr Simka, only untrasound, which showed everything is fine, although I feel worse than before procedure. However, after reading about many cases when ultrasound showed no stenosis, and later on flebography showed something else I am wondering if another check-up flebography isn't a good idea?
Well, considering there are 8 chances in 10 to have the azygos involved (thanks mshusband ) I think that having a repeat venography makes more than sense ! The doppler wouldn't show any involvement with the spinal venous system, so that is NOT enough !
But, they need to use the right tools and from what Dr. S. said, IVUS is already being used for assessing coronary artery plaque, no big deal to get access to one, I would assume ?!? I seem to remember him quoting $ 600- $ 700 to get one (don't quote me on that, I may be dreaming ). Did you read Dr. Simka mention it ? http://www.thisisms.com/ftopic-12031-0.html so they do know about it, why don't they use it !
I for one will mention it to the Polish team (I'm with Dr. Kostecki) and hopefully other people will talk about is as well, only then do we have a chance for things to change...
Hey magoo!magoo wrote:pklittle,
It has only been 6 days since your procedure if I am correct. It took 5 days for me to feel any improvement. Everyone is different and none of us knows what our treatment really means to our individual bodies and disease. There are no standards when it comes to testing or treating. Maybe this won't work for you, but I would still have hope. Many people saw improvement weeks or even months after treatment. And many who have seen nothing are still hoping for no progression. I have high hopes for you.
BTW, did you find a local doctor for follow up?
Thanks for your post. I just assumed that most feel improvements while still "on the table". So I will still have hope to at least just stay where I am anyway.
For me, since I have no stents and am on no blood thinners, Dr Siskin advised that I judge my need for another visit based on how I feel over time. If I feel I am progressing, he said come back to him. That is my plan.Having said that, I have been trying for a few months to get an appointment with a local FSIR. Just today I got a call from them to book an appt but after some discussion, she needs to talk to the doctor and get back to me. I want to get established locally in case I have future needs and by chance they start treating ccsvi. At this point I just want to consult with them. I am really curious now about my other veins that drain the brain and spine while upright. (iliac?).
Hope you are continuing to do well!
I am not sure about regressing threads Billmeik but certainly trying to encourage others with MS to look at CCSVI logically instead of rushing to get the "liberation" procedure until it has been tested in controlled clinical trials(the same thing Zamboni said by the way).Billmeik wrote:I hope it does not regress into posts trying to convince them they are wrong.
Kind of ironic coming from the person who I've watched regress dozens of threads over the last six months.
I'm going for the angioplasty-thank God the USA. I love my
Canadian family but despise Canada, this is the nail in the coffin.
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cece I think this a great idea that will only lend more credibility to TIMSCece wrote:I wonder if we shouldn't have a sticky of a tracking thread with negative results. Because I can see where they get lost in the general flow of positive results and high hopes and it does seem like important information...particularly those who've had new symtoms. Numb fingers or hands, even starting on the operating table, is the new symptom that seems to crop up for a few people.
We have a lot of stickies already, so maybe it's not practical.
We need to know about those cases where the liberation treatment has not worked as 'hoped'. So for those who are going to share their experience here, please try to share as much information as possible with us. For instance:
1) How long ago did you have the liberation procedure? If it is recently say less than 6 months ago I would think it is far too premature to claim 'it did not work for me' .
2) What do you mean by 'it did not work for me'? Did you get worse? Did you have another relapse, if so how soon afterwards?
3) What sort of MS (or other condition) you had before the treatment and what were your symptoms. For how long have you had MS. How progressive was your condition.
4) What sort of venous abnormalities did you have and where? Were all your venous abnormalities successfully treated, if so by what means (balloon angioplasty, stent or other?
5) Are you having a vascular follow up? Have you checked that your veins have not restenosed?
There are quite a few videos and information about people who started to have changes immediately after the liberation procedure. These kind of stories should be listened. But we should also manage our expectations.
Several docs experts in CCSVI have said that one should not expect to have the liberation procedure and then start running. The CCSVI sticky tracking thread shows that for some it has taken a while to see any changes. We should also look at those cases.
i encourage everyone who is having less success with CCSVI treatment to do up a tracking item in that other thread, per the format provided. that way your story is there right alongside the positive experiences, and is easily comparable to others line for line.
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Idem for me with 10 days nightmare headaches 5 days after procedure. But since some time now these headaches are gone.LR1234 wrote:The thing is though things change. I had a vertigo relapse (well I thought it was a relapse, now I think it might have been an inner ear problem)
I am still better now after the procedure than before despite the 8 week vertigo nightmare which has just recently gone (thankfully)
And now feel much better than before procedure (certainly improvements related to bladder and fatigue!). I therefore did not update my tracking yet, would prefer to report the full picture in 3 monthly update intervals. It's the long-term effect that would count most. The first days and month(s) seem to be different from the longer term effect in a lot of patients.
I apologize if I hijacked this thread please excuse me it will never happen again. I just found it so very very helpful for us.
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