Thank you Jamie and Mel!

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

Thank you Jamie and Mel!

Postby Needled » Sun Oct 04, 2009 8:05 am

Since your post about "What a wonderful trip" keeps getting hijacked, I thought I'd start a new one for you. I realized I hadn't told you how glad I was that Mel's checkup went fine and that you guys deserved a great weekend and I'm so glad it went well for you. PLEASE continue to share your experiences with us. There are so many people who want to know how Mel is doing and you know we appreciate all of your insight and willingness to take the time and write about it to us. The same goes for all the Stanford folks who seem to be attracting alot of heat because they talk about their experiences.
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Postby Jamie » Tue Oct 06, 2009 6:50 pm

Thanks!

I will, don't worry.

I'm glad I took a few days away.

it's like that old cartoon 'I can't come to bed honey, someone is WRONG on the internet!'

Onwards and upwards!!
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Postby mrhodes40 » Wed Oct 07, 2009 6:44 am

I second that Needled! Many of us who decided to opt to take the risk of an unproven therapy are without other options like myself: you can't prove the effectiveness of stents by me (YET! :wink: ) so I love to read about Mel's experience because she has a lot less permanent brain damage than I have so her results are logically going to be more obvious.

I think it is really generous of you Jamie to take your time to share when by all rights someone in your position might logically choose to "leave MS behind" and never think of it again. Thanks.

By the way is Mel past the point time wise where she started to notice that revimmune had not met its goal with her? Just curious......... :roll:
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 Loobie » Wed Oct 07, 2009 7:13 am

I'm with Marie on this one. I hang on every word you post about her!
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Postby catfreak » Wed Oct 07, 2009 9:02 am

Lew wrote:

I'm with Marie on this one. I hang on every word you post about her!


Me too Jamie!!

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Jamie » Wed Oct 07, 2009 4:49 pm

Thanks guys!

Marie, not yet and I know you are itching for that day to come.

I'd say Mel had all her symptoms return by 12 months out. Fatigue and heat intolerance came back way before that but left sided weakness went.

At the outset of HiCy, I can go back to the posts if need be (!), we said 'we want HiCy to buy us some time, a couple of years for something else to come out.

Mel didn't progress at all in that time, stayed stable disability wise but towards the end (pre-stents) her fatigue was worse than ever and heat would knock her out for a couple of days afterwards.

She's had zero fatigue and heat intolerance so far.

So far is all I can say as was quite rightly pointed out to 'angry Jamie' the other day!

She'll tell you though that this is 'different'.

Who knows? Maybe some people will need immune ablation too - once the run away train starts it might be harder to stop than just stopping the original cause, feedback loop if you will.

All speculation of course.

And its funny, I did think to myself 'why do I still go on TIMS, we should just move on from this 800lb gorilla that has dominated everything since August of 07'. We even had to postpone our wedding because of HiCy etc.

The thing is though I like it here, my life would be a lot emptier without seeing everyone trying there best at the MS coal face, that's something else I forgot at the weekend too. I don't want this to be a place I come only when we need answers, at the very least I should share our experiences because I know how ravenously I searched the internet for peoples real experiences of HiCy and how much I looked forward to other peoples tales while we were waiting to go to California.

So, Marie - if Melissa is still 100% by Christmas that will be a lot longer than she felt genuinely good after HiCy, and most of that 'good' time was spent recovering from the chemo and being depressed at being bald!
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Postby mrhodes40 » Thu Oct 08, 2009 1:58 am

Thanks Jamie!!

You said
Maybe some people will need immune ablation too - once the run away train starts it might be harder to stop than just stopping the original cause, feedback loop if you will.


I personally think this is possible and will not be done holding my breath for some time........... :roll:

There are several possibilities:
CCSVI repair means the end of MS progression for everyone
CCSVI repair means the end only for some-those who have no autoimmune component, and some other people could have a self perpetuating issue
CCSVI repair is a partial answer and everyone will need immune strategies too
CCSVI repair will EVENTUALLY mean everyone will have no autoimmune component (ie they have some but it goes away naturally after the repair with some time, perhaps 6 months for all the blood cells to be replaced naturally, as it does in rheumatic fever)

however the good thing about that is that if autoimmune components need to be addressed there are some good options already on the table and well researched in MS, hopefully the idea that the reflux is repaired will be a game changer there and things that are marginally effective will become much more so with good blood flow.

I am still on copaxone.

This aspect of the possible interaction of CCSVI with immunity will be intensely investigated I believe as it will answer the question "if CCSVI is MS then how did all the research make it seem like an autoimmune disease to so many people?"
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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