This Is MS Multiple Sclerosis Knowledge & Support Community

Denise--I hope you had a good Mother's Day yesterday...you deserve it! it's stories like the one you've posted about your son that keep me coming back here and give me energy to keep fighting and connecting with doctors. An azygos vein that was so malformed and severe jugular reflux would have cont...

The problem of getting treatment for CCSVI is relevant to the larger national discussion of Health Care Delivery in general. Although elected representative ostensibly write and implement legislation, who influences their decisions. Many folks here, have been raising the question of drug company's ...

Hello Denise I am from Pa met at Georgetown the day of your son's procedure lost your e-mail. I'll get doppler results tomorrow. What experience is there at Washington Hospital Center concerning CCSVI testing? Hello, I do remember you. Hope you are well. Our experience was that the tech at Washingt...

Yeah great you have coverage, but now the government will dictate what can and can't be treated (like what's going on with Canada and CCSVI). At least in the US a lot of people are finding doctors who will currently treat them for CCSVI - you don't see that in Canada without leaving the country. So...

regarding the statement "how bad your MS is is how bad your CCSVI is"....... a person with RRMS with no symptoms of CCSVI could still be having damage to their CNS due to iron deposition and perhaps does not have the primary symptoms due to blood flow caused by CCSVI....hence it is hard t...

France has socialized medicine, but my husband was able to be treated, but if we were in the UK, that wouldn't have happened...it all depends on how they do it, and there is nothing definite. The biggest help, will be the elimination of companies being able to say no to those with pre-existing cond...

Yeah great you have coverage, but now the government will dictate what can and can't be treated (like what's going on with Canada and CCSVI). At least in the US a lot of people are finding doctors who will currently treat them for CCSVI - you don't see that in Canada without leaving the country. So...

Zamboni found 50% restenosis in the jugulars, but only 5% restenosis in the azygous. 95% of the time the azygous stayed open, once opened...your son is very fortunate, to receive this treatment at his stage in life with that bad of ccsvi...it gives chills!! Thanks for the info Cece. Your right...ou...

Hi Denise, Can you tell me if the doppler done at WHC was done to protocol? Meaning they tested him sitting up and then lying down, etc. or was it just their normal doppler of the IJV's and they still picked up blockage? Thanks! Yes, we took a print out we got from the internet. We were lucky to ha...

kc wrote:Your story warms my heart. I think your son would have been in line for a rough go with ms. But now it will probably be nothing but a bad dream.
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YES!

kc

From your lips to God's ears!! I hope we are both right and this will be the end of a very bad dream!! Thanks for the support!!

I thought they weren't doing any more treatments at Georgetown for the time being....perhaps I am mixed up with hospitals. My son is a patient of Dr. Tornatore's at Georgetown Hospital and we have been talking to him about this possibility since January. My understanding is that Dr. T. and Dr. Nevi...

whyRwehere wrote:Sounds like an interesting case, wish there were pictures. I don't understand the 2 posts above this, by the way.

Someone was asking me if my son ever had Mono. I answered no he didn't. I suppose they are looking for a Mono connection to MS or CCSVI.

prairiegirl wrote:...actually, bring on the treatment for those who most need it now!

Amen to that!!

Sounds like an interesting case, wish there were pictures. I don't understand the 2 posts above this, by the way. Sorry, I'm new to this site and I don't know much about using it. I don't have any pictures to share, and don't how I would download pictures to it...if I had them. I guess I could ask ...

That's great news Denise. I am 22 myself, and I'm extremely grateful that CCSVI has been brought to light at this point in time. I've had some mild cognitive & fatigue problems the past few years, no physical problems. My first major attack was last year though (couldn't walk). I am able to wal...