Long term results

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

Re: Long term results

Postby magoo » Sun Jun 15, 2014 10:19 am

I'm going on 5 years of improvement. I have had three procedures. I believe it takes more than one in most. My symptoms started coming back and I went in. If you had improvement and it goes away, you need to get back in.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: Long term results

Postby 1eye » Sun Jun 15, 2014 6:49 pm

There is a huge amount that is unknown about the brain, MS, and CCSVI: pathology and what the unintended consequences of any treatment are, drug or procedural.

I would say that even though we have come a long way in the last 5-10 years, there is still too much unknown for anyone to feel that any treatment is absolutely the right path. With a diagnosis such as this one, you are left to be your own expert, and although nobody gets out alive, what you decide will affect whatever time you have left, in drastic ways. Seek the best counsel you can. Listen to those who have experienced the whole range of results. You will find a lot of us on the internet, but also in many other places.
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Re: Long term results

Postby AMcG » Mon Jun 23, 2014 1:06 pm

I felt I should post my experience too and it immediately made me ashamed to realise I have not posted any updates on the 'tracking thread' in years. That is really where you should be looking Glen. But you asked for long term results. I was first treated in April 2010 in Poland (Dr Kostecki) where I received a stent in my right IJV and angioplasty in my left. The stent has never bothered me and the vein is still patent.

I went to Sal Sclafani in Feb 2013 and had more angioplasty on both IJVs and my azygous vein. He also looked at my renal and lumbar veins.

Naturally the improvement in my symptoms after Poland was immense so much so that I hoped for a while I was cured. I felt very 'normal.' The improvements largely held but I was beset with continual chest infections which really knocked me down for weeks on end. But I always recovered. It eventually became apparent that the recoveries were not complete and I slowly ratcheted down to the point that I decided to go to Sal if I could. At that point my big brother with a big heart and a big wallet stepped in.

After Brooklyn I have made some improvements I did not make after Poland and the chest infections have disappeared. Best improvement after Brooklyn for me (apart from the lack of chest infections) is that going to the toilet has now normalised. What was previously a dreaded experience is now a pleasure. I am now re-experiencing the pleasure of a two year old who has mastered potty training.

So I am now over four years from initial treatment (but I have had two.) I would concur with the previous posters that Sclafani is the best and I would also second Cureious in saying that stents can be good.

As a summary I would say that almost everyone now tells me I am 'normal.' They cannot see anything wrong with me. My GP just said it to me. Yet I have had progression. I now have nine lesions. Previously I had four. When I went to Poland I had none.

I think I have a lot to be thankful for and a lot to be optimistic about but I cannot help feeling sorry for those of us who had treatment but did not see any improvement. If you are contemplating this treatment please remember there is no guarantee it will work for you.
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Re: Long term results

Postby CureIous » Mon Jun 23, 2014 3:41 pm

Well if Rhonda posts...

In a few weeks, I am renting an RV for the family. We are going on a vacation that I paid for, having worked 408 hours in a little over a month. That being in industrial construction, where faking it just doesn't make it. That is a far cry from where we were back in 2009, and especially 2008.

And there in the refrigerator, rests the last Avonex prescription. A reminder from 2008. The long needles, the nurse who came to the door, so happy to help my wife learn how to administer those injections.

And here I rest, 5 years later, planning a family vacation I would have never dreamt possible.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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