Post if CCSVI treatment did NOT work for you

girl69 · Post by **girl69** » Wed Jun 23, 2010 4:25 am

But do you think it's worth insisting on getting another venography without the IVUS (intravenous ultrasonography) when it plays such an important part in the diagnostic ?
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 !
Michelle

mila77 · Post by **mila77** » Wed Jun 23, 2010 5:03 am

girl69 wrote: Anybody else feels something could have been missed there ?

Hi Girl69,

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?

girl69 · Post by **girl69** » Wed Jun 23, 2010 5:25 am

@mila77
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...

pklittle · Post by **pklittle** » Wed Jun 23, 2010 5:12 pm

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?

Hey magoo!
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!
Pam

pklittle · Post by **pklittle** » Sun Jun 27, 2010 3:59 am

Bumping this thread so everyone can read and share.

can we please make this a sticky? Thanks

joanp · Post by **joanp** » Sat Jul 03, 2010 11:04 am

just bumping this up

scorpion · Post by **scorpion** » Sat Jul 03, 2010 11:32 am

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 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).

thornyrose76 · Post by **thornyrose76** » Sat Jul 03, 2010 11:56 am

It isn't illogical to treat and do studies. Besides there are plenty of video testimonials popping up online everyday, essentially proof that this treatment DOES work for many with MS. My own neuros response to this while initially a bit caught of guard by my statement of "could this person be faking it?" in regards to a before and after Youtube video of a person who had undergone the treatment, and his response: "Why would she be faking it?" And as this Dr. said beforehand "I just don't see it, the CCSVI theory" but "on the other hand I didn't see the theory regarding vitamin D and now look what we know about vitamin d five years later."

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.

garyak · Post by **garyak** » Sat Jul 03, 2010 1:58 pm

Cece 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.

cece I think this a great idea that will only lend more credibility to TIMS

pklittle · Post by **pklittle** » Sat Jul 03, 2010 5:40 pm

Just as an fyi, it has been 3 weeks since my procedure, and I still feel no benefits.

Post by **jimmylegs** » Sun Jul 04, 2010 3:51 am

pk, and any others with negative results, have you been inputting your info on the original tracking thread?

TMrox · Post by **TMrox** » Sun Jul 04, 2010 4:44 am

I'm glad that this important information made it to the sticky thread.

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.

Rox

Post by **jimmylegs** » Sun Jul 04, 2010 9:04 am

i personally think that this is one sticky we don't need if all the different kinds of patient experiences are logged in the main tracking thread.

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.

Zeureka · Post by **Zeureka** » Mon Jul 05, 2010 1:08 am

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)

Idem for me with 10 days nightmare headaches 5 days after procedure. But since some time now these headaches are gone.

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.

ppicklee · Post by **ppicklee** » Wed Jul 07, 2010 12:37 pm

Thank you moderators for making this a sticky. We have done our homework but there are only so many hours in a day. My care etc. (aggressive MS for 16 years, now paralyzed from the neck down) make it so that my life is not my own all of the time. I have wonderful, wonderful life so don't cry for me. Thanks!
P.
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.