Message for Out218
Posted: Thu Oct 01, 2009 5:40 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
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