Message for Out218

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

Message for Out218

Postby CNClear » Thu Oct 01, 2009 6:40 pm

For some reason I cant send you a PM...it says user not found...so I tried a few times and since it still would not go, I didn't want you to think I wasn't answering, because everyone has been so great to me on TIMS, answering my questions and all...so here is the PM I tried to send to you...hope you get this!

Hi Steve...It sure was bad last week (the flooding)...we fared OK once it stopped raining, the water all drained off the yard, so we were lucky...hope you didnt get hit too hard...as for the Shepherd Center, I havent gone there. I have Kaiser Insurance and they are pretty specific about what they will and wont cover. I go to the MS Center of Atlanta and so far, so good...

This CCSVI stuff is so new that there are very few people who even know about it. I am sending the MSCA a packet of stuff this week...I do have an appointment with a vascular surgeon next week...I got my PCP doc to refer me from Kaiser, hoping that he will find it interesting enough to pursue...or maybe give me an MRV or at least tell my PCP that there is no one in the US except for Dake at Stanford, that is doing this procedure...the Jacobs Institute in Buffalo, NY is starting some kind of deal that has to do with diagnosing CCSVI...no treatment planned yet tho, from what I understand, just dxing...i sent them an email 3 weeks ago and haven't heard back from them, but you can google them and get some info that way...I am hoping that Kaiser will pay for some of the surgery, so that's why i am going to see a vascular guy here, so i can get a referral to Dake, so they might pay for some of it...

Right now, I am waiting for Dake to call me for my preop consult...I Fedexed him my neuros report and MRIs last week, Alex said I may get in as soon as end of November! But from reading about the newest appointments, it looks like it will be December... I can't wait! I just know that this is going to be something that makes me feel better and lately, i've been feeling too fatigued to do anything at all...along with a bunch of other 'inconvenient symptoms' ...I'm sure you know what I mean!

So, if you think you might want to give the CCSVI thing a go, send your MRI cd's (the latest two...with reports) and a years worth of nuero doc visit med reports and a list of your MS history...you know, your 'story' and then Alex (Dakes asst) will call you and ask you questions and then Dake calls and then Alex calls back to sched the surgery at Stanford. You dont have to have an MRV or Doppler on your veins in order to go out to Stanford...Dake will redo it anyway...(I will get one while I am waiting to go to Stanford, if my ins. will pay for it.) I'm not putting a lot of stock in the results because the test protocol is so new and different that most places dont know how to do it and I've heard, that some just refuse to do it because they dont know enough about it...

All the contact info is listed in the stickies...

Good luck with all that flood water and with the MS...it really is a monster! I can't wait for the day that no one has to suffer from it anymore!

Lisa aka CNClear
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CCSVI in Atlanta

Postby dee522 » Mon May 24, 2010 9:39 am

Where can I go to get pre-screened in Atlanta? In fact... where can I get the pre-screening AND the CCSVI treatment in Atlanta. I Know the vascular surgeons do the treatment, but how would I go about finding them? I'd rather go in the country rather than international because I'd stll need monitoring after it's done
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CCSVI in Atlanta

Postby dee522 » Mon May 24, 2010 9:44 am

Where can I go to get pre-screened in Atlanta? In fact... where can I get the pre-screening AND the CCSVI treatment in Atlanta. I Know the vascular surgeons do the treatment, but how would I go about finding them? I'd rather go in the country rather than international because I'd stll need monitoring after it's done
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Postby tzootsi » Mon May 24, 2010 10:13 am

I'm not sure why you posted under this topic, you may not get many answers. Anyhow, my wife just underwent the procedure 6 weeks ago here in New England. Here's what you need to do - go to the websites of all the hospitals within driving distance, and get the phone# for their interventional radiologists. Call the number, and ask to speak directly to the doctor, or have him call you. You can briefly explain your question to the receptionist, but insist on speaking to the doctor. Offer to e-mail the doctor some info on CCSVI. You should have some success this way. A lot of people are doing this - beats going overseas.
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Postby Cece » Mon May 24, 2010 10:14 am

I haven't heard of anyone getting treatment in Atlanta yet so you may have to start from scratch: mail off some letters to local interventional radiologists presenting the CCSVI theory and yourself as potential patient. People have had success with this.

There are options between doing it locally and travelling to Poland or further. NY seems to be a particular hotbed of CCSVI-interested doctors. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby shye » Mon May 24, 2010 3:18 pm

Cece
I am in NY--not aware it is a hotbed (other than Dr Sclafani of course).
PLEASE PM me with info on any drs here...
Thanks
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Re: Message for Out218

Postby Sotiris » Tue May 25, 2010 1:26 am

CNClear wrote:For some reason I cant send you a PM...it says user not found...so I tried a few times and since it still would not go, I didn't want you to think I wasn't answering, because everyone has been so great to me on TIMS, answering my questions and all...so here is the PM I tried to send to you...hope you get this![...]Lisa aka CNClear
The reason you cannot find user "Out218" is that the correct user name is "Out2L8".
PS. I just noticed that the original message is quite old, i.e. you know the reason already.
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