Brit going to Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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CCSVIhusband
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Post by CCSVIhusband » Mon Jul 12, 2010 3:43 pm

No, not seeing the neuro until September (he doesn't know she had the procedure ... I've mentioned before he didn't dismiss it ... but we don't know his real feelings. He's very into drug research).

Yes, occlusion of the Left Common Iliac Vein by the Right Common Iliac Artery is the diagnostic requirement for May-Thurner Syndrome.

It often goes undiagnosed (hence it is heavily believed it occurs in more than the 2%-5% of people reported). Even DVT often goes undiagnosed ...

The key is going to be the finding of collaterals - or via left femoral entry (asking your doctor to look for May-Thurner).

I don't think it's going to have a HIGH prevalence in MS (probably only slightly higher than the non-MS population), because it would likely go undiagnosed if there was no occlusion in the azygous vein as well. But it is one more thing we've learned.

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HappyPoet
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Post by HappyPoet » Mon Jul 12, 2010 4:20 pm

I agree with Drury... CCSVIhusband's posts are brilliant!

I wonder if there is another place his info can be put where more people might see it??? Any ideas?

Thanks for sharing all that, CCSVIhusband. And I'm sorry I interrupted your treatise. You've come so far since your very early questions on my Dr. Mehta thread -- I said it then, and I'm saying it again... you're a terrific husband.

For the final time, back to the originally scheduled program
~HP

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Drury
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Post by Drury » Mon Jul 12, 2010 6:24 pm

Thank you CCSVIhusband.

Drury

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CCSVIhusband
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Post by CCSVIhusband » Thu Jul 15, 2010 4:37 pm

On a funny note ... from the meeting we had with a new IR today ... he was talking about MS and neurologists and said that IRs have obviously been getting a lot of new interest from MS patients about CCSVI.

He kind of talked for a minute, but the funny thing that came out of it was he was talking about the head of Neurology at his hospital and he said ... "What other doctor can you go to and hear "we don't know" so much, and it be an acceptable answer as it is with neurologists and MS".

Think about it ... it's true. What other doctor have you ever been to, where the entire field of doctors that practice that particular type of medicine say "we don't know".

How comfortable are you going to a doctor of "I don't knows"? --- good thing you dropped 200-grand on medical school to learn to say "I don't know".

We all had a good laugh about that one ...

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MartinHalford
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Post by MartinHalford » Wed Jul 21, 2010 4:23 am

OK All,

The much heralded video post CCSVI surgery is now posted on YouTube:



But don't hold your breath - improvements are only marginal - as I've said before, the repair to my plumbing systems is well past the sell-date of my spent electrical circuits, so arrested development is the best I can hope for. But a firm believer in CCSVI for the MS masses I remain!
Martin Halford
RRMS Dx 1983; Self EDSS 6.0

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costumenastional
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Post by costumenastional » Wed Jul 21, 2010 4:58 am

Better late than never mate. Hang in there, you never know.

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Bizzy
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Post by Bizzy » Wed Jul 21, 2010 4:42 pm

Hi Martin, you say your improvements are only marginal but wow, I think your improvements are totally noticeable. Your balance is much better and you were able to walk without your cane which is remarkable!

I had my procedure the day after you and my improvements are more subtle. I do have more energy. When I do things now it takes less effort and I'm not so exhausted like I used to be. My balance is better on most days and I am also less stiff. When I stand up now, I don't have to wait as long to move.
I guess, I was hoping for much more. I know I have damage that will take time to repair and must learn to be patient.

Sue
Diagnosed in 1986 - was RRMS now SPMS.

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L
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Post by L » Wed Jul 21, 2010 5:10 pm

And I saw the video a day before I saw the thread, I didn't know you were on here Martin!

A mild improvement is a great thing and they say that three months or six isn't an unreasonable time to wait for the effects of the procedure to be known..

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hopeful2
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Post by hopeful2 » Thu Jul 22, 2010 9:32 am

Hi Martin---thanks for posting your video. Your balance looks better to me! I also heard you speaking with a stronger voice but am not sure that's due to the procedure. It's good to hear from you and I hope things keep improving for you.

@Sue, it's good to hear about your improvements too. I know what you mean about not needing as much time to move after standing up! Me too.

Patrice

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