drsclafani wrote:sorry hp, i misled you. All three of those images are of the same person, the nonMS patient with ccsvi manifesting with cogfog and chronic fatigue. I would not think that his disability is any less than a PwMS. he cannot function at all. He is unhappy and struggling with no one telling him how he can get well.
Cece wrote:In this case, was the hypoplastic jugular the only CCSVI finding? Or were there problematic valves too?
drsclafani wrote:But the question of the three was in a comparison of the mother, son and Pw/oMS
which of these three do you think would have the worst symptoms
Sorry I forgot to send you an email for my 5th month followup....
so, here's my 5month and a half email...
Everything is good,
last week I had a small headhaches, but I had a huge indigestion in the same time... eaten something that doesnt pass... Anyway...
So, beside that, no fatigue, no headhaches, legs getting slowly stronger as I'm taking stairs way more often than before... it's a slow recovery
Still paddling once a week even if it's getting cold here, and I have a good question for you about paddling..
I think I will be the first in your entire carreer to ask you this...
at this time of the season, the water is getting colder. This is not bottering me a lot, for this season, but in the past, I was starting my paddling season realy early, somewhere at the beginning of april. at this moment we have to use a Dry Top, because the water is deadly cold. To prevent water to get inside, a drytop is build with silicon Gaskets at the wrist and The neck and normaly, it put a lot of pressure. We even stretch new one with a football for months before using it, or it choke to much.
I dont feel confident about adding pressure at my neck for the moment, so I will finish the season with only a wetsuit(yeah i'm crasy) but do you think next april, (so 12months after my procedure) it will be safe to use this kind of gear?
or do you think it could hurt veins, or even valves, to wear this kind of stuff? I was wondering if strong neck pressure can break a valve or something...
NZer1 wrote:Thanks for your Magic with Frances Dr.
Now I'm nosey and don't want to pester her with my questions so I thought I would ask you instead
drsclafani wrote:what a dilemna! i would never have imagined this patient asking details regarding white water kayaking!!!
my sense is that this would not be a good idea to compress his jugular veins.
CindyCB wrote:Does it not go that if you have one hypoplastic vein as long as the *other* one is working well, there is no problem? Just wondering for myself as my neuro told me on my original MRV (brain only of course) that my left side all looked strong so that's fine and the right side won't be causing my symptoms, even if it is very small.
Of course I now know that further down the veins I have problems on both sides, so not so simple...
For the chap with small veins on both sides... how long has he been ill? If he was born this way has he always been symptomatic?
Can veins become hypoplastic or are that way from the start?
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