My son's liberation

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

My Son's Liberation

Postby DeniseW » Sun May 02, 2010 1:43 pm

Hello Everyone,

My 21 year old son was liberated April 28th at Georgetown Hospital. He has had MS for a year and a half. He had one relapse about 6 months after he was diagnosed. On Tysabri for 8 months as Avonex didn't protect him from the relapse.

Post Liberation...He is doing great!! His eye sight is better, his fatigue is gone, the tremor he had in his hand is gone, the brain fog has lifted, he isn't dragging his foot anymore, better balance...it's all good!! Praying that the veins remain open (without stents). We are looking at it as he has a 50% chance they will.

He had a total of 6 angioplasties during his 3+ hour liberation. Both jugulars were blocked...one majorly and the other not as bad. His azyogus vein was basically completely blocked. Took 3 angios to open it. Dr. N said it was the worst he ever saw.

Notes about testing for CCSVI...the first doppler he had at Washington Hospital Center showed a lot of blockage. The doppler done at Georgetown Hospital didn't show much of a blockage. If it wasn't for the one done at WHC he may not have been selected for the study.
Had an MRV done at WHC that didn't show significant blockage. In retrospect...we would suggest that MRV's aren't the way to go, and you should have your dopplers done at WHC if possible, until G.town techs get better at it.

Dr. Tornatore and Dr. Neville are fabulous doctors!! The staff at Georgetown Hospital couldn't have been better. We would highly recommend them!!
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question: did your son have mono?

Postby drbart » Sun May 02, 2010 4:10 pm

and if so, how bad?
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Re: question: did your son have mono?

Postby DeniseW » Sun May 02, 2010 4:42 pm

drbart wrote:and if so, how bad?


He never had mono.
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Postby whyRwehere » Mon May 03, 2010 3:11 am

Sounds like an interesting case, wish there were pictures. I don't understand the 2 posts above this, by the way.
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Postby jackiejay » Mon May 03, 2010 5:30 am

I thought they weren't doing any more treatments at Georgetown for the time being....perhaps I am mixed up with hospitals.
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Postby kc » Mon May 03, 2010 5:40 am

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.
\

YES!

kc :!:
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Postby SaintLouis » Mon May 03, 2010 7:56 am

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!
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Re: My Son's Liberation

Postby Cece » Mon May 03, 2010 8:13 am

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!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Thanks for the WHC info.

Postby GinaMass » Mon May 03, 2010 8:39 am

Called there this morning and it seems a GP order will suffice. If I am going for this test it needs to be with someone that has expertise.
GU says neuro has to order. Ridiculous!!

And the beautiful bonus of it all/As of July 1st, those of us with no ins. such as myself (self-employed w/MS) will have it soon.
Thank You President Obama!! :D
Heres to hoping for 100% CCSVI in MSers and treatment for all soon!!
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Re: Thanks for the WHC info.

Postby Cece » Mon May 03, 2010 8:50 am

GinaMass wrote:And the beautiful bonus of it all/As of July 1st, those of us with no ins. such as myself (self-employed w/MS) will have it soon.

You are the first person I've come into contact with who is immediately benefitted by that policy...regardless of any politics, it is a beautiful thing to have health coverage, particularly when up against m.s.!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mshusband » Mon May 03, 2010 8:54 am

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.

Soon under Obamacare you won't see that in the US either.

Good luck with all that though ...

Guess you can tell which side of the coin I'm on by that post ... but it's what IS going to happen.
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Postby daverestonvirginia » Mon May 03, 2010 9:00 am

Thanks so much for posting. I live in the Washington DC area and am thinking of looking into the CCSVI testing at Georgetown.
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Postby Billmeik » Mon May 03, 2010 9:00 am

this is such a cool case.

There has only been proof for a month since buffalo but what they found is 'how bad your ms is is how bad your ccsvi is'.


In this case the patient is young and probably had some nasty ms coming. Hopefully that path is no longer.

Awesome.
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Postby whyRwehere » Mon May 03, 2010 9:27 am

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 conditions. Now they need to make the companies not be for profit....
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Postby jackiejay » Mon May 03, 2010 10:15 am

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 to say how bad their MS is at the moment.....just thinking of all the people with less obvious signs of MS.......could they not have CCSVI at all?...I guess that's what the research will show....someday....am hoping that CCSVI will apply to them also because the autoimmune theory is way too vague and implausible.
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