It's official, PP it is

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

It's official, PP it is

Postby Johnnymac » Thu Dec 29, 2011 1:43 pm

The neuro today confirmed what we've thought for a while now, Court has Primary Progressive MS, not RR. 5 years of no new lesions, gradual worsening of symptoms and no periods of remission.

This may be why she didn't see any long term benefit from CCSVI treatment, as it seems the RR group are the ones who really see lasting positive results from opening up the veins. Wanted to let those who have followed our journey know the news as it does shine new light on her not seeing the great benefits from ballooning that we had hoped for.
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Re: It's official, PP it is

Postby Cece » Thu Dec 29, 2011 2:12 pm

The two of you are a beautiful couple. I am sorry to hear it's primary progressive.
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Re: It's official, PP it is

Postby EJC » Thu Dec 29, 2011 2:37 pm

It's not news you wanted to hear, you have our thoughts.
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Re: It's official, PP it is

Postby Rosegirl » Thu Dec 29, 2011 4:44 pm

Was the neurologist supportive of the CCSVI theory?

Since there was benefit after treatment that has disappeared, are you sure that the problem isn't restenosis? Many patients require additional treatment.

Also, if there was improvement earlier, perhaps as the IRs get better at finding problems, there is still lots of room for improvement.
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Re: It's official, PP it is

Postby Johnnymac » Thu Dec 29, 2011 7:47 pm

She was treated by Dr S, I dont think we could have had a better IR. We haven't given up on CCSVI, just waiting for more of the studies to get done and for good local IRs in Texas to get on board. Neuro wasn't dismissive, just not convinced anything definitive has been determined yet in regards to the relationship of CCSVI and MS.
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Re: It's official, PP it is

Postby Cece » Thu Dec 29, 2011 10:08 pm

Depending on when she saw him, was he checking renal veins? Or did he say if she had anything untreatable? Hypoplastic ascending lumbars might be more common in PPMS, according to Zamboni's findings. Restenosis is also common, although some may have higher rates of restenosis than others depending on techniques. Dr. S is awesome, I saw him too, and I've had lasting results that still surprise me, but I had partial restenosis in one of my jugulars that benefited from a second procedure. I like to see people get tested for restenosis, just so they know, but understand if it's not easy/possible/local/covered. (And wouldn't it be nice if those roadblocks weren't there!)

It's also hard for me to get over Wheelchair Kamikaze's thoughts on the possibility of a tertiary immune system in the brain itself in progressive patients. It happens in other diseases where there is constant inflammation in an organ. If this proves true, then it leads to new pharmaceutical options. ( http://www.wheelchairkamikaze.com/2011/ ... nning.html )
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Re: It's official, PP it is

Postby Donnchadh » Sun Jan 01, 2012 12:36 pm

Johnnymac wrote:The neuro today confirmed what we've thought for a while now, Court has Primary Progressive MS, not RR. 5 years of no new lesions, gradual worsening of symptoms and no periods of remission.

This may be why she didn't see any long term benefit from CCSVI treatment, as it seems the RR group are the ones who really see lasting positive results from opening up the veins. Wanted to let those who have followed our journey know the news as it does shine new light on her not seeing the great benefits from ballooning that we had hoped for.


Just curious, is there any history of trauma to the head or neck?

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Got MS?.....Get Liberated!
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Re: It's official, PP it is

Postby cheerleader » Sun Jan 01, 2012 12:58 pm

Johnny---
I'm so, so sorry. Sending love and healing thoughts to you and Court-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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