This Is MS Multiple Sclerosis Community: Knowledge & Support

Perhaps with the use of IVUS etc these complications are no longer a problem.

What happened with the local Vascular Surgeon you spoke to previously?

I've been thinking of how to answer this question. I think I know deep down that I will eventually get the procedure done. It just seems that little things keep stalling my progress. Most recently I finally met with a doctor (vascular surgeon) here in Ontario that was willing to talk to me and actually give me some advice (I've been to many who knew nothing of CCSVI and refused to learn or just wouldn't speak about it with me at any length). This doctor applied to be part of the clinical trials getting underway here and I was on the list to take part. Unfortunately, his group was not awarded the trial. In fact, no one in Ontario will be part of the trial. So, back to the drawing board for me.

From everything I have read I think the CCSVI procedure will help with my symptoms. My main symptoms are constant dizziness/light-headedness, lack of energy, daytime tiredness (sleep apnea), headaches, cog-fog and some slight balance issues. This is on a very basic level, unlike some of the members on here science is most definitely not my forte (I'm an accountant!) and I quite often get lost in the scientific detail of some of these posts.

I have had CCSVI testing at the Port Perry clinic which showed 4/5 of the criteria for CCSVI (Dr. you were kind enough to translate my report in this thread a couple of years ago).

I think the lack of support around here (from my family doctor and other doctors I have reached out to) is really making me hesitant to proceed even though I know it is probably in my best interest. Although I feel the effects of this everyday and generally feel unwell if this was more physically disabling I think I would have already had this done. And because I can still get through the day, albeit a struggle some days, I haven't had that push to make the next move. On the flip side...what kind of damage is taking place while I wait??

Sorry for the rambling...I guess the short answer to the question is a little bit of confusion on the right time to proceed and lack of local support.

Thanks for your time and dedication.

What happened with the local Vascular Surgeon you spoke to previously?

He wasn't awarded the clinical trial he applied for so is pretty much in a holding pattern for now.

I was not suggesting him for treatment, but for the lack of after treatment local support you stated as a reason for holding back?

while the neurologists speak about the dangers, the safety trial, accounting for more than 2,000 patients show high safety with no deaths and few major complications. benefits are also explained as placebo.

Dear Doctor,

I had the procedure by you at the 28 September with my friend Valentina . As you remebrer I had my last relapse at 26 of September and it was really bad.
After the procedure I noticed some difference on the relapse symptoms and 2 weeks after the diplopia left .
My problem is that 20 days ago I started to get worst at ccsvi symptoms . Fatigue , cog fog , headache , instability , deaziness and the fact that I cannot see well the colors , depression are situations that I didn't have before in that grade and now I don't feel well .
I think that something doesn't go well . Something is changed . I did the ultrasound and it didn,t show that I have something .
Now I am desperate . Specially in the mornings I feel worst than ever , moreover I cannot stand in a place with many people , I cannot tolerate the noise and this is one of the worst thing because I am a teacher .
My MRI that I did at 6 of November is full of lesions . One is 11 and the other is 8 mm and there are some others .
I know that I have the clot in my left jugular vein but this I had it from last year and my ccsvi sympoms were not so bad
Well I am thinking all the time what is going wrong with me and I feel so bad . Will I get better or this will be my life from now on?
I wait every day a sign that something will change and I will feel better but there is no sign . Only the same situation and now that the cold weather comes I get worst on my symptoms .

in all the cases that i treat, i repeat the ivus after angioplasty. I look for residual defects, immobile valve fragments, thrombus, but i have never measured the cross sectional area of the vein before and after angioplasty. It seems so obvious that i should have, but i didnt. Something else to look at