It happens when you least expect it

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

It happens when you least expect it

Postby mshusband » Sat Apr 24, 2010 7:44 pm

All:

I only intend on this being just an inspirational post, because at times I know we all struggle with patience and the ups and downs of everything (like being on a list and the doctor getting shut down).

BUT,

I want to write because for months now, I've been trying to contact every doctor I can about CCSVI. For weeks (at least) I've been writing letters, presenting research, making calls, sending emails (anything I could) ... all without being asked by anyone to do so ... but doing so because it just makes too much sense, and I believe (as an engineer) that this (CCSVI) makes too much sense from an engineering perspective that there has to be something behind it.

Anyway, tonight I am SO HAPPY to report, I got a call from a semi-local doctor today willing to take us on as patients. He's never performed the procedure before (but at the same time, has never been approached - and is friends with SEVERAL of the doctors who have performed this procedure here in the US). He mentioned wondering when his first patient would come through his door ... apparently we are that patient.

I don't want to name names of the doctors he's friends with - but I guarantee you have ALL heard of THEM. I also don't want to give his name out either (you've read my thoughts on keeping these secret because of how doctors "get shut down" ...).

I really just wanted this post to be an inspiration to KEEP WORKING AT IT. You CAN and WILL find doctors. It WILL happen when you least expect it (today we had a thousand other things going on and getting that call was the furthest thing from our minds) ...

So KEEP UP THE GOOD FIGHT FOR CCSVI. THIS IS SPREADING ... it might be agonizingly frustrating and at times seem slow ... but IT IS SPREADING.

God bless ... all.

Have a great Sunday.
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Postby cheerleader » Sat Apr 24, 2010 7:52 pm

MShusband-
wonderful news for you and your wife (and the potential future patients of the doctor you found.) The doctors know each other, they attend conferences together, read each others' research, and are becoming aware of venous insufficiency in the jugulars and azygos veins. You're right not to mention names, but people in your area may PM you....just be prepared :)

Going local is possible in the US. We are very fortunate.
blessings back atcha-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bestadmom » Sat Apr 24, 2010 7:56 pm

You have no idea how relieved I am to hear that you've found someone locally. Congratulations.
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Postby QueenMum » Sun Apr 25, 2010 12:16 am

Bravo for your hard work & persistence in finding a local practitioner. Pittsburgh had a really great rep for their medical system when our daughter was at CMU. Hope it is just as good now.

All the best.

Mum :wink:
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Postby mshusband » Sun Apr 25, 2010 4:26 pm

I've had quite a few people write to me today (PMs) to ask how I've done it, and they tell me stories of going to neurologists and asking about CCSVI.

I think the first thing I have to say is we've all read stories about neurologists and their dismissal of CCSVI ... those stories seem to be true based on what I've heard.

Our neuro actually made an interesting comment last time we went to see him BEFORE we asked about CCSVI, that the reason people feel tight muscles and numbness with MS is because "MS can cause a lack of blood-flow to the extremities". Now ... THAT seems to be as far from true as anything I ever heard. IT seems to me that a neurological condition CAN'T have an affect on blood-flow. But since he brought it up and opened the door, we mentioned CCSVI. He said he'd heard about it but VASCULAR isn't his specialty. So I wouldn't say he was dismissal in any way ... and did make the connection between poor blood-flow and MS but as a neurologist he couldn't make the connection I think others here have (doctors included). We did have a good chat about it however. AND he did agree that CCSVI did sound plausible. In that if the body had occlusion somewhere (especially in a key area of that body such as the brain/spinal cord) that the body would pump blood to that area to keep it alive and not through the rest of the body properly as a result (hence most MS symptoms occur in the extremities as far from the vital areas of the body as possible).

So we dropped it with him and went out on our own ... CONTACTING VASCULAR SURGEONS and INTERVENTIONAL RADIOLOGISTS.

I think bringing CCSVI up to your neurologists is a waste of time ... it IS NOT their specialty. We need to work on every interventional radiologist and vascular surgeon out there.

Just my two cents reading stories of those who have contacted me today.
Last edited by mshusband on Sun Apr 25, 2010 4:44 pm, edited 1 time in total.
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Postby ozarkcanoer » Sun Apr 25, 2010 4:40 pm

mshusband,

congratulations on finding a doctor willing to consider CCSVI treatment. I hope for the best for your wife. You know we love every story from every poster here so keep us posted !!

ozarkcanoer
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Postby Donnchadh » Sun Apr 25, 2010 6:54 pm

mshusband wrote:I've had quite a few people write to me today (PMs) to ask how I've done it, and they tell me stories of going to neurologists and asking about CCSVI.

I think the first thing I have to say is we've all read stories about neurologists and their dismissal of CCSVI ... those stories seem to be true based on what I've heard.

Our neuro actually made an interesting comment last time we went to see him BEFORE we asked about CCSVI, that the reason people feel tight muscles and numbness with MS is because "MS can cause a lack of blood-flow to the extremities". Now ... THAT seems to be as far from true as anything I ever heard. IT seems to me that a neurological condition CAN'T have an affect on blood-flow. But since he brought it up and opened the door, we mentioned CCSVI. He said he'd heard about it but VASCULAR isn't his specialty. So I wouldn't say he was dismissal in any way ... and did make the connection between poor blood-flow and MS but as a neurologist he couldn't make the connection I think others here have (doctors included). We did have a good chat about it however. AND he did agree that CCSVI did sound plausible. In that if the body had occlusion somewhere (especially in a key area of that body such as the brain/spinal cord) that the body would pump blood to that area to keep it alive and not through the rest of the body properly as a result (hence most MS symptoms occur in the extremities as far from the vital areas of the body as possible).

So we dropped it with him and went out on our own ... CONTACTING VASCULAR SURGEONS and INTERVENTIONAL RADIOLOGISTS.

I think bringing CCSVI up to your neurologists is a waste of time ... it IS NOT their specialty. We need to work on every interventional radiologist and vascular surgeon out there.


Just my two cents reading stories of those who have contacted me today.


I couldn't agree more; don't waste your time on neuro's as they are NOT qualified to perform the liberation procedure.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby SandyK » Sun Apr 25, 2010 7:10 pm

I wish I had better news to report. I was meeting with an IR for a different issue and brought out my handy packet of info on CCSVI and tried to talk to him about it and he didn't give me the time of time. I am up in Washington state and so far in all my calls and letters I can't spark the interest. They'll all be beating down my door when I return from abroad liberated!
Diagnosed 1994, Self EDSS is 6.5
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