CCSVI patients' log

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

Postby catfreak » Thu Aug 20, 2009 1:44 pm

Update the list:

Catfreak aka Cindi going on Sept 2 & 3
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 MaggieMae » Mon Aug 24, 2009 9:01 am

Reading Cheer's post on Jeff and seeing that he continues to take his Copaxone, I was wondering how many others who have had the surgery at Standford continue to take the ABC drugs or Tysabri. If I remember correctly, Lew quit Tysabri right before he went to Stanford.
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Postby Sharon » Mon Aug 24, 2009 9:09 am

Maggie -
I quit taking LDN prior to the surgery because of the contraindications with pain medications. I resumed taking a lower dose of LDN after Dr. D. took me off the blood thinners and gave me the A-ok.

Sharon
Last edited by Sharon on Mon Aug 24, 2009 9:09 am, edited 1 time in total.
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Postby Arcee » Mon Aug 24, 2009 9:09 am

Great question. I was on Copaxone before my surgery, but have been off it since then. I am not willing to deal with the injections when I am bruising so easily since I often have injection site issues. Not sure if I will go back on - -that's a tough one to figure out. My neuro has been supportive of the CCSVI intervention, but I suspect he will want me back on Copaxone when I am off the Coumadin.
What have others decided?
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureIous » Mon Aug 24, 2009 8:49 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:23 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby LR1234 » Tue Aug 25, 2009 3:27 am

Mark, when did you have the procedure again?? and have you not had a relapse since the surgery?
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Postby Arcee » Tue Aug 25, 2009 1:38 pm

Wanted to add in case it helps someone else, that I am still on the Coumadin and aspirin but have stopped taking the Plavix. I have been bruising something awful, haven't been able to wear shorts. My PCP offered up that maybe it wasn't the Coumadin per se but the combination of all three meds that was contributing to the problem. Dr. Dake was fine with my going off the Plavix since there really isn't any research on it regarding venous issues. And I do think I am bruising less now. Counting down the days until the Coumadin ends...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Sharon » Tue Aug 25, 2009 1:58 pm

Wanted to add in case it helps someone else, that I am still on the Coumadin and aspirin but have stopped taking the Plavix. I have been bruising something awful, haven't been able to wear shorts. My PCP offered up that maybe it wasn't the Coumadin per se but the combination of all three meds that was contributing to the problem. Dr. Dake was fine with my going off the Plavix since there really isn't any research on it regarding venous issues. And I do think I am bruising less now. Counting down the days until the Coumadin ends...


Yes, this is good information. This could also be a $ benefit. The Plavix was not covered entirely by my insurance.
Sharon
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Postby mrhodes40 » Tue Aug 25, 2009 2:47 pm

I'm still on copaxone. It helps my RA really well, so itis a good antiinflammatory. I am waiting for more information before considering dropping it altogether for something else for the RA....
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 CureIous » Tue Aug 25, 2009 9:39 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:21 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Loobie » Wed Aug 26, 2009 3:50 am

Man that sounds great!
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Postby zap » Wed Aug 26, 2009 6:38 am

Loobie wrote:Man that sounds great!


Hang in there Loobie - I kind of wonder - with your lower spinal lesions and lack of fast relief from the stents seen by others, if you'll wind up being best examined by the Zamboni-style Doppler ... perhaps you have the same "membranous" blockage at the azygous? Sept 8th is coming soon, I hope it sets a big ball rolling fast!
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Postby Jamie » Wed Aug 26, 2009 8:18 am

We returned Mel's last months worth of Copaxone to the pharmacy.

If she has a relapse then there's a return of the blockage.

She's had no active inflammation (that has been seen) since HiCy, even on a 7T MRI.

She must have had 10 MRI's since last year so I'm pretty sure active/enhancing lesions would have come up.

Despite all that she was feeling crap and had what felt like a relapse but no inflammation.

She was coming to the end of that when she went to Stanford.

Since two days after the op she's felt great. The coumadin is dragging on her as is her work schedule but she's still first up and last to bed with NO naps at all.

She's pretty unique in the fact that she's had high dose chemo and the surgical repair.

Interesting to see how Chris does if he has this done. Keri too maybe. She's had HiCy twice but has relapsed, if this works and lasts then that in itself strongly suggest that auto immunity isn't the culprit. Immune response is of course initially blasted by HiCy. Doesn't make it auto immune though which is crucial.

Anyway!

I guess I'm saying we're done with the CRAB's and steroids too for the foreseeable.

Rebif didn't work, copaxone was post HiCy which may well have helped prevent the immune response to the damaged caused by venous insufficiency and there's no evidence to suggest that steroids shorten relapse or lessen the damage caused by relapse.

For us the puzzle has been solved.

There are many here who will disagree, some vehemently and from their perspective I may too.

But we've done it. She's been through the chemo, followed the autoimmune theory to its logical maximum (short of radiation and bone marrow transplant) - she still suffered.

We're both intelligent people, we've thought this through carefully, yes we acted quickly but not rashly.

She's a clinical instructor in genetics. We know a lot of doctors, surgeons and pHD's they have mostly expressed extreme interest and a 'that makes total sense' response.

She went, she undertook the for her excruciating surgery.

And it worked. Two months later it continues to work and her life is 100% normal.

How long will it last? Who knows. But if she does start to feel bad again, we'll go to Dr. Dake or hopefully by then someone local and she'll be tested and if necessary she'll have the veins opened up again.

She can stop taking the poison daily and we can start to consider having children.

She's been too scared to talk about it as (in my view irrational and this isn't to offend any mom's) she couldn't face being a 'sick mom'. She didn't want to have a baby then three or four years later not be able to walk with her/him.

She's only really told me this AFTER the surgery as she is starting to be able to put that fear behind her.

It's the safety net. The 'we can go get it fixed if it goes wrong again' that we are hearing more and more of from the Liberation participants and that we'll hearing a whole lot of on Sept 8th.

One of the most dreadful things with MS is the unknown. Is this it? This time I can't use my left arm is this the time it sticks? How will I feel at the weekend, can I go to that event? How will I feel tomorrow? This afternoon? In ten fucking minutes?

THAT part of it is going away for Mel.
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Postby zap » Wed Aug 26, 2009 8:24 am

Jamie wrote:She's been too scared to talk about it as she couldn't face being a 'sick mom'. She didn't want to have a baby then three or four years later not be able to walk with her/him.

She's only really told me this AFTER the surgery as she is starting to be able to put that fear behind her.


This actually brought tears to my eyes. Wow.

Congratulations, and thanks for sharing some of that potent hope.
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Postby mormiles » Wed Aug 26, 2009 8:52 am

Zap, Like you, Jamie's account of Mel withholding her deep-seated reason for not getting pregnant brought a lump to my throat. I can't think of anything I hate more than MS.

Jamie, You and Mel have fun making a baby!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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