My son's liberation

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

Re: My Son's Liberation

Postby jr5646 » Mon May 03, 2010 11:44 am

DeniseW wrote: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!!


Thanks so much for posting this... what wonderful progress... and heartwarming.. esp. coming from a parents perspective.

Your son's case would be so interesting to follow clinically.. If the researchers and nay-saying neuros would just take more interest instead of trying to dismiss/refute this, we could all benefit..

To me your sons case would be most valuable to study/track over the next ten years..

Lets hope and pray the stenosis does not re-appear and any lesions repair / immune response stops forever.. That to me is a CURE... but way to early I suppose..

I think we all should have a chance at treatment first and now... study us afterwards..
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Postby Billmeik » Mon May 03, 2010 3:58 pm

a person with RRMS with no symptoms of CCSVI



that's why I disagree with places like buffalo. I don't believe there really are that many people as you describe, because I believe that ccsvi causes MS and you can't have ms without ccsvi so probably the imaging (buffalo? early false creek?) is returning false negatives.

The grey area is membranes films and valve issues.
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Postby Salvatore24 » Mon May 03, 2010 4:04 pm

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 walk/jog again, but I'm hoping once I have my procedure (fingers crossed for this month) I will get back to my pre-ms state when I was 17-18. I wish the very best for your son.
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Postby prairiegirl » Mon May 03, 2010 5:46 pm

My daughter (also in her 20s) has MS (presently in remission). She has had 2 very debilitating and scary attacks however, and I am following the research and treatment developments closely. Thanks so much for posting your son's results, Denise. I hope this pans out for all of us! Bring on the studies!
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Postby prairiegirl » Mon May 03, 2010 5:52 pm

...actually, bring on the treatment for those who most need it now!
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Re: Thanks for the WHC info.

Postby DeniseW » Mon May 03, 2010 6:41 pm

GinaMass wrote: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


We are privately insured too...and always fear being terminated. I Thank President Obama too...but, I just hope the bill is strong enough and there aren't any loop holes for the insurance companies to jump through. I'm all for single payer!!
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Postby DeniseW » Mon May 03, 2010 6:43 pm

prairiegirl wrote:My daughter (also in her 20s) has MS (presently in remission). She has had 2 very debilitating and scary attacks however, and I am following the research and treatment developments closely. Thanks so much for posting your son's results, Denise. I hope this pans out for all of us! Bring on the studies!


Our son had 2 scary attacks too...so I know how you fell. Hang in there. Hopefully it won't be too long before everyone can get tested. I'll keep you posted as to his progress.
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Postby DeniseW » Mon May 03, 2010 6:49 pm

Salvatore24 wrote: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 walk/jog again, but I'm hoping once I have my procedure (fingers crossed for this month) I will get back to my pre-ms state when I was 17-18. I wish the very best for your son.


You sound a lot like my son. I'll say a prayer that you get your procedure this month. Is it going to be a venogram? I noticed you are from Australia. Are they doing a lot of CCSVI testing there?
I believe in my heart and soul that treating CCSVI will be the end to this terrible monster in your and my son's life. My best to you too!!
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Postby DeniseW » Mon May 03, 2010 6:59 pm

whyRwehere wrote: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 for some pictures at his followup appointment...and ask one of my kids, when they return from college this summer, to download them for me...if I get some. The one of his azyogus vein will blow you away it was so narrowed!! His doctor brought us into the procedure room to show it to us.
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Postby DeniseW » Mon May 03, 2010 6:59 pm

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


Amen to that!!
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Postby DeniseW » Mon May 03, 2010 7:02 pm

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.
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Postby DeniseW » Mon May 03, 2010 7:10 pm

jackiejay wrote: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. Neville are only studying a group of 30 MS patients and they are all Dr. Tornatore's patients. I don't believe they are doing venograms on others outside his practice...but, I could be wrong. I did meet a man from PA at the hospital on the 28th that said he traveled to Georgetown to have a doppler of his jugulars done there.
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Postby DeniseW » Mon May 03, 2010 7:12 pm

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.
\

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!!
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Postby DeniseW » Mon May 03, 2010 7:18 pm

SaintLouis wrote: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 have a great tech. She was very interested in the CCSVI theory and was happy to follow the protocal. She did have someone raise the bed while she dopplered his neck and you could see the blood flow in his jugular flow backward as his jugular closed. I was in the room at the time...and so was another tech. None of us could believe our eyes. It was just at his collar bone where it closed. She said she had never seen anything like it.
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Re: My Son's Liberation

Postby DeniseW » Mon May 03, 2010 7:22 pm

Cece wrote: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...our son is very fortunate. I pray that everyone with MS can be tested soon and helped too!!
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