Poll: Getting treatment?

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

Are you getting treatment for CCSVI?

Yes, I am getting treatment at Stanford.
13
24%
Yes, I am getting treatment somewhere else (post where in this thread)
10
18%
No, but I am looking for someone locally to do it
22
40%
No, I'll wait for more research or my neuro to say do it.
10
18%
 
Total votes : 55

Where to start?

Postby akaheather » Sun May 17, 2009 9:58 pm

I just found this thread on Friday and having been soaking it in all weekend. (I stayed up 'til 3 am Friday and then couldn't sleep unitl almost 6 am dreaming of all the possibilities.) I can't wait for tomorow to come so I can get on the ball.
Unfortunately, I'm not sure where to start..neuro vs pcp. My pcp sucks, but , since I have HMO, I think she has to be the one to refer me.
I have also considered faxing some info to my neuro with a message like " Have your heard about this? Do you think it would be in my best interest to have this checked out? "
I don't think my little HMO would cover a trip to Cali unless no one else in Texas could do it. (Not to mention that I find it hard to believe that I couldn't find someone in this fine state that could handle it. 8)

Any ideas?
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Postby Artifishual » Mon May 18, 2009 6:22 am

heather not sure where you are located in texas, but i am waiting to hear back from a dr in the baylor medical group in houston, if i don't hear from him within a day or two i am planning on scheduling an appointment. my neuro is also in the texas medical center and when i brought this to him
he was sorta layed back about it, but now he wants me to get tested to see.
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Austin

Postby akaheather » Mon May 18, 2009 2:06 pm

I'm in Austin. I just sent a fax to my neuro today asking him to review Dr. Zamboni's research and advise. It was a 32 page fax 8O . (That should give him something to chew on. )

I am curious to see what kind of response I get back.

I also talked to my aunt who is a nurse. She wanted to look over the info as well, but did caution me that vascular surgery was fairly serious. (Yes, but so is MS.)

Anyway, let me know what you find out in Houston. It's definately alot closer than California.

On a side note, how is everyone getting their insurance companies to cover treatment in California? I can't imagine my Doc giving me a referral out of state.
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Postby Sharon » Mon May 18, 2009 3:31 pm

akaheather you wrote:

I also talked to my aunt who is a nurse. She wanted to look over the info as well, but did caution me that vascular surgery was fairly serious


Any type of surgery is serious - no surgery is risk free. But, I think your aunt could have been referring to surgery for vasculitis, aneurysms, carotid stenosis or maybe varicose vein surgery. Dr. Dake will be placing a stent in either the jugular or the asygmous vein. This is not risk free, but it is much different than most vascular surgery.

Sharon
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Postby Artifishual » Mon May 18, 2009 3:36 pm

Heather
Well I emailed this Dr.'s nurse since I have had no response from him if I should just call and make an appointment. Tomorrow I will call again and ask her over the phone. They just don't realize how big a pain in the ass I really can be......... :wink:
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Postby Loobie » Mon May 18, 2009 3:59 pm

I think if you show up and threaten to sit on one of them, they'll get one look at your Shrek lookin' ass and run :lol: :lol: :lol:. You know I'm kiddin' big boy! Give 'em hell.
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Postby Lyon » Mon May 18, 2009 4:51 pm

.
Last edited by Lyon on Sat Nov 26, 2011 1:11 pm, edited 1 time in total.
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Postby Artifishual » Mon May 18, 2009 5:20 pm

I knew I could count on you guys, talk about feel the love :roll:
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Postby Lyon » Mon May 18, 2009 7:15 pm

.
Last edited by Lyon on Sat Nov 26, 2011 1:11 pm, edited 1 time in total.
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Postby zap » Thu May 21, 2009 1:38 pm

Well, strike 1 (2 if I count my neuro's response):

Thank you for reaching out to Minneapolis Radiology and Minneapolis Vascular Physicians. We are sorry to learn of your battle with MS and appreciate your inquiry. I reviewed your emails with an interventional radiologist and neuroradiologist in our practice. They indicated we don't do much MRV of the chest. Their concern in your case is that the study wouldn't turn out technically. Additionally, from an interventional perspective, they indicated they would not use any stents to treat your MS.


le sigh!
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Postby peekaboo » Thu May 21, 2009 1:45 pm

we certainly have a fight on our hands :cry:
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Postby Arcee » Thu May 21, 2009 6:58 pm

I am pretty sure that Dr. Dake said he is seeing about 50 MS people...
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Postby patientx » Thu May 21, 2009 7:21 pm

Zap,

How did you go about contacting this practice? Was it a cold email?

I'm curious, because I am starting to try to contact the vascular departments of hospitals near me, and I was wondering how others are going about this.
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Postby Sharon » Thu May 21, 2009 7:48 pm

patientx

I started "cold calling" at the University Hospital here in Denver trying to get information. Finally, I was able to get a fax number of the head cardiovascular surgeon - I faxed over the Zamboni 2008 report with a cover letter. Unfortunately, I have not heard anything even after I followed up with the doctor's nurse. The Interventional Radiology dept was sent the information at the beginning of this week - maybe something will happen here - who knows :?:

Good luck
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Postby whyRwehere » Thu May 21, 2009 10:08 pm

It's strange. We all are excited about this and can see the sense of it, and can see that we are only looking first to see if something is damaged and then if it is, then why not fix it....yet on another MS site, which I had never seen before(I googled zamboni, etc), the inclined bed man had posted information about this and quite a few there were not open at all to the idea...and then the thread got CLOSED!? I thought, Thank God I'm not on that site, what a bunch of miseries.....
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