Gibbledygook's Stents

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

Postby Arcee » Thu Jul 02, 2009 12:35 pm

Super news! So glad to hear that you are back home and doing well. Please keep us posted.
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Re: Post travel update

Postby cheerleader » Thu Jul 02, 2009 12:43 pm

gibbledygook wrote:Like Marie and Jeff my leg spasms have improved, in my case surprisingly so. I had NO leg spasms on the long haul flight even though I fell asleep.

Wonderful news, Alex!

My bladder control has also been really quite good. I went to the toilet (visited) only twice on a twelve hour long haul flight. \
It is blazing hot in London with attendant relatively high levels of humidity. I am not using my cane. I am walking down stairs. I have noticed greater flexibility in my badly affected right foot.

I never really had brain fog but I am more enthusiastic about everything despite the heat.

I am trying to get the National Health Service involved. There is a contact at St Thomas and Guys in London which I am waiting on.


Alex....this is all so heartening. Glad you're home and ready to get your country's "team" going on CCSVI. Your post made my day!
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Thu Jul 02, 2009 12:59 pm

123
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Postby mrhodes40 » Thu Jul 02, 2009 2:16 pm

ALex so glad to hear your good news I am so glad you went to cali! It sounds like you are doing really well, way to go!

I am trying to get the National Health Service involved. There is a contact at St Thomas and Guys in London which I am waiting


This is good news! What a difference it will make to people if they get involved with this approach. Did you bring home copies of your MRV's and stuff to use as a talking point and visual aid?

Say, did they do a doppler on you too, or just the MRV? And did your doppler show anything at all or did you, like the rest of us, find that there was nothing to be seen on that test?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Thu Jul 02, 2009 2:47 pm

Gibbs -

Glad you made it home and in good health...WOW what speedy results u have. This is great news and inspiring. Wobbly would say this is the real deal.

It sounds like you are firing up the UK with all this. you go girl! You are the poster child for the Brits. And your are part of the Stanford Clan....
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Postby gibbledygook » Sun Jul 05, 2009 2:26 am

I must say I am surprised also at the suddenness of improvements. I must keep in mind that they are maybe somehow placebo although I don't understand how that could be. Maybe the percocet pills have helped to change things but I stopped them 6 days ago. Somehow that doesn't ring true.

Anyhow I didn't have Doppler scans although a doctor in London had offered to do them. Prof Dake didn't even suggest Dopplers. I think the MRV gives the clearest pictures. And he sent me off with 4 CDs of my MRV scans so hopefully these will get people in London interested. I can't wait to have a meeting in London and show them these scans. :D
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Sun Jul 05, 2009 7:15 am

We will ALL stay tuned to that story for sure.

Early on in this, back in December--can it be so recently?- when we were just trying to find someone to do dopplers and writing letters etc, that was one kind of grass roots effort because we did not have as much to go on. We were kind of tentative about it not knowing if it it could be reproduced. I wrote to Dr Zamboni and he urged patience and asked for prayers for his work. Of course we did not want to wait, people who are losing nervous tissue by the day don't have any "wait" in them

NOW I almost feel like an activist urge is reasonable, this is good therapy, not some flash in the pan that people merely try, we all seem to have this issue.

Alex, Leann, LR1234, found someone to do her studies maybe that person would be interested in seeing your well done MRV and hearing about it? That person is at least open to it and has heard of it. Just a thought.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby LR1234 » Sun Jul 05, 2009 7:59 am

HI A,
Glad to hear you are having improvements!!
Marie is right...The Dr I have been seeing really wants to see some scans of other patients with these stenosis. I have passed his details on to you so please send him copies.
L x
Last edited by LR1234 on Mon Jul 06, 2009 9:21 am, edited 1 time in total.
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Postby CureOrBust » Mon Jul 06, 2009 7:58 am

not to get too techy, but if any of you can copy your MRV Cd's to an ISO file and place them on a fileshare web site (eg RapidShare) we could download them and I am certain I could place them in front of "interested" MS neurologists here in Australia.
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Postby peekaboo » Mon Jul 06, 2009 8:55 am

Cure - sounds like a great idea...I do not have a cd...if no one wants to share, Marie posted a couple MRV's from a paper she linked. which thread i can't find or remember. I think we should have a sample on the master CCSVI sticky too.
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Postby Loobie » Mon Jul 06, 2009 9:47 am

To quote Homer:

Woooo Hooooo!!
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Postby gibbledygook » Thu Jul 09, 2009 8:32 am

Right. I've got a meeting on Monday with a bone surgeon friend who is asking his radiologist to look at the CDs from Stanford which I'll bring to St George's Hospital in Tooting. Hopefully they will be able to read the scans and get a picture of the occluded jugulars onto a powerpoint slide. I think this might be quite helpful as my jugulars looked pretty buggered even to me, a layperson. I know that some film producers who have been preparing a documentary for months and months are very excited about the Stanford operation and would benefit enormously from having a slide of the scans to film.

I continue not to have spasms at night, my bladder urgency is still better, my walking less stiff. The pain in my shoulders has evolved into just terrible stiffness so that playing the piano for longer than a few minutes is a no, no. Also lifting anything heavy is painful including bottles of water. I am brighter and more energetic and I am sweating more. Maybe I was more fatigued than I knew although I certainly have never found fatigue debilitating. I am brighter/jauntier for sure. My piano teacher commented on this. I'm also smiling a lot. 8)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby peekaboo » Thu Jul 09, 2009 8:44 am

Great news Alex :!:

This is what it's all about :D
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Postby mrhodes40 » Thu Jul 09, 2009 9:08 am

Alex this sounds super great! I am so glad you have had such good results in your case. You have more positive signs than I do, but I had the whole bed rest episode so that may have caused some wider issues. But with regards to the comment that even to a lay person the jugs looked buggered up, YEAH! mine too. It was a tangle in there of exptra veins and stuff.

Can you let one of your MRV pictures go to cure so he can post it in an ISO (whatever that is) and I can link to it in the research pages? Then doctors who check here can see what the MRV should be looking at specifically/visually? Cures MRV did not look right like they highlighted his head veins--like everything in his skin of his head was bright not the deep ones and the jugs/azygos etc..

What is the film maker documenting?

And a power point will be really helpful, for any presentations you'd like to give! ITs all very cool
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Arcee » Thu Jul 09, 2009 9:08 am

Yes, really super news. Congratulations!
A film? Interesting...
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