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

post-surgery hair loss?

Not such a big deal, especially compared to Lew's rash, but anyone else on Coumadin and Plavix noticing that their hair is coming out? I am definitely shedding way more than normal. It's not clumps (at least not yet), and I think it is a not uncommon side effect, but am wondering if anyone else has experienced this or has comments. Thanks.
Read more : post-surgery hair loss? | Views : 1271 | Replies : 6

in simple terms...?

hi everyone,

I just came on over from the HiCy board....I see there's a lot of action here - and I want to know more about it.

Can anyone (duh! I know a lot of you can) please explain this to me in plain English? I have the articles and links - will check them out - but am hoping someone can help me out. I want to tell others about it.

I know I ...
Read more : in simple terms...? | Views : 1354 | Replies : 4

High Hopes on Pacific Coast

Hi everyone...
I just got off the phone with Dr. Dake. He asked me a few questions about my medical history, and gave me a high-level overview of the steps to come next. He said he'll be out of town for the next few days and asked me to contact Alex to work on selecting a date for the procedure.

I feel like I just won the lottery! ...
Read more : High Hopes on Pacific Coast | Views : 17185 | Replies : 94

CT Venography Scheduled for Thursday

After consulting with Dr. Dake, my PCP has scheduled me for a CT venography of my jugular and azygous veins, this Thursday at 9 AM. I believe Dr. Dake spoke to the radiologist at the hospital where I'll be having the procedure done, to fully brief him on what precise protocols need to be followed.

I spoke with Dr. Dake, and he wants me to send him a disk with the results. Should be interesting...
Read more : CT Venography Scheduled for Thursday | Views : 3697 | Replies : 27

It's a go.

Read more : It's a go. | Views : 1132 | Replies : 3

Anyone else get a rash?

I was lying around today and was just constantly itching my head around the hairliine and also my lower torso. After a couple of hours of this I decided it was more than just dry skin so I looked in the mirror. I have an ever so light rash that I can hardly see, but it feels kind of like barely raised chicken skin; ie, can't even feel unless touching very lightly. It's probably nothing, ...
Read more : Anyone else get a rash? | Views : 3299 | Replies : 24

Steve's Turn: waiting for the call

All the records and other documentation have been sent to Alexandra, we've already had our introduction by phone, and we've been exchanging e-mails. Now, we're just waiting for the call.

Can the wheels of healing be more excruciatingly slow??? Of course they can be---like for healing that's never dreamt of, like for healing that never comes.
Read more : Steve's Turn: waiting for the call | Views : 4211 | Replies : 31

Being with a loved one at Stanford

From Loobie's Mom...

Wow, what an amazing, heart-rending, hopeful, informative, exhausting week. I don't even know where to begin! I'll start with how to be of help. Once we got to Lew's first appt. (we were so lucky to have a friend who knew where our destination was!)' I had some time while he was going through his initial tests. I remember someone saying how many long halls there were to navigate. So I took ...
Read more : Being with a loved one at Stanford | Views : 1214 | Replies : 4

Advice on Getting GP Support?

Hi All,

I've been reading here for a while, downloading the articles, reading my old MRV/MRI reports, dusting off the anatomy books, and having lots of ah-ha moments.

I have been phone tagging with Dr. Dake for a while. Saw my Neuro last week -- she supports this for me as I have atypical MS and known cerebral venous issues from brain surgery last fall. My N wasn't familiar with CCSVI but took the main ...
Read more : Advice on Getting GP Support? | Views : 1400 | Replies : 9

Pic of me and the team

I did this once before, so I know I can do it again. If not, please forgive all the editing as I try to bring this image from Photobucket! Anyway, here is Alex, me, Dr. Dake, and Angela.


Ok Shannon, the blond had on heels, so no short jokes :lol:
Read more : Pic of me and the team | Views : 1329 | Replies : 6


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