CCSVI treatment available in the U.S.!

[thornyrose76]

I would like to go to Latham New York and be tested but I have some concerns being the cost bc I would be paying out of pocket, annd the other is follow up exam, I live in Winnipeg Canada and there is no one I could see here in WPG that could help me out with that I don't believe but am I wrong?? Can any dr. do a follow up exam, who would I see a vascular surgeon? HELP!!

[bmk1234]

I would like to go to Latham New York and be tested but I have some concerns being the cost bc I would be paying out of pocket, annd the other is follow up exam, I live in Winnipeg Canada and there is no one I could see here in WPG that could help me out with that I don't believe but am I wrong?? Can any dr. do a follow up exam, who would I see a vascular surgeon? HELP!!

I will be having the procedure soon in NY with Dr. Siskin. I plan to do my follow up tests at an institution that has agreed to do the follow up tests in MN- just south of Winnipeg. This same institution is in the process of defining their testing protocal for CCSVI testing. So hopefully in the near future you could get testing in MN. Dr. Siskin has told me he is ok with getting the follow up test locally.

[thornyrose76]

okay, that's good to know. Is this MN institution the Mayo Clinic?
The problem is it would have to be in Wpg bc I am on my own with this and travelling to Mn isn't possible jjust for a follow up, what support I have has agreed to help with New York but that's it so I'm kinda trying to find a way thru t his on my own.

[gfrl]

I would like to have the diagnostic testing for CCSVI and the follow-up procedures if I have blockages. I am a member of Kaiser in HI and there is no MS Specialist in HI. Has anyone else in the Kaiser system been able to get a referral to a non-Kaiser facility who knows how to do these?
I am willing to travel.
Thanks!

[jr5646]

OK everybody - I called them at 8am on Wed. May 12th (eastern) and left messages - received a call back the same day at approx.12:30. Brief background and demographics were taken and they said a Dr. would be calling me back within the next few days.. Sure enough, Dr. Mandato called on Fri. May 14th to discuss treatment and my current condition.. He discussed the massive influx of calls and that I would hopefully hear back from them soon..

I was already scheduled for testing at BNAC and was torn - should I drop $4,500 or just cancell??? Well, I went ahead with the testing figuring it would take weeks to hear back..

How's this for ironic... I just put all my gear into a locker (wallet, keys, cell phone-which I forgot to turn it off.. etc.) I then sit down awaiting for them to call me for MRI / MRV appointment.. The stupid cell phone starts to ring.. I thought for a second that maybe I should try to make it to the locker, unlock and answer... then I remembered how slow I am, and decided it would be impossible to make it to the locker, fumble with the key and answer before voice mail kicked in.. so I simply ignore it..

The MRI/MRV was a long one.. approx 1.5 to almost 2 hrs in the tube. I finally get out of there.. my next appt. is at 1:30 and it
is now 1:20.. so I check the voice mail. Damn.... it was Dr. Mandato's scheduler. They want to schedule an appt on June 22nd.

I finally connect with Beth M. and confirm for June 22nd... WOW... OK - don't get too excited, Ins. approval first..

Beth calls me back on Wed the 26th and states that my ins. is approved (no need for a referral either) and good to go...

FINALLY ....

OK I don't want to get my hopes up since I was initially scheduled with Dr. Sclafani for the week of April 19th and received the dreaded cancellation call exactly two weeks prior... so I've already had the wind knocked outta me once and refuse to allow myself to experience that again. So I reluctantly even dare mention "having" an appointment for fear I'll jinx it..

Here's to liberation... congrats to all who have appts. and patience to those waiting. Drop me a pm if anybody is scheduled for June 22..

[bmk1234]

okay, that's good to know. Is this MN institution the Mayo Clinic?
The problem is it would have to be in Wpg bc I am on my own with this and travelling to Mn isn't possible jjust for a follow up, what support I have has agreed to help with New York but that's it so I'm kinda trying to find a way thru t his on my own.

I can not name the institution until they have all their ducks in a row and are ready to start testing individual. Once I get the OK from them I can list their name.

[Cece]

OK I don't want to get my hopes up since I was initially scheduled with Dr. Sclafani for the week of April 19th and received the dreaded cancellation call exactly two weeks prior... so I've already had the wind knocked outta me once and refuse to allow myself to experience that again.

Well that's the best news I heard all day!! Congrats & it's about time & if it doesn't work out, I'll consider you bad luck, and ask you to kindly refrain from getting on lists with me...that was a joke, I think Siskin is a solid go.

[Cece]

So hopefully in the near future you could get testing in MN.

Testing but not treatment, so not the whole enchildada just yet! I am counting on you, bmk, to dazzle them with post-procedure improvements.

[bmk1234]

So hopefully in the near future you could get testing in MN.

Testing but not treatment, so not the whole enchildada just yet! I am counting on you, bmk, to dazzle them with post-procedure improvements.

You gotta start somewhere. In order to make enchilada's you gotta do some prep work. I'm cautiously optomistic. Time will tell.

[Cece]

You gotta start somewhere. In order to make enchilada's you gotta do some prep work. I'm cautiously optomistic. Time will tell.

Gotta do the prep work...love it, so true! I am optimistic as well.

[BooBear]

Still absolutely no call. I am starting to lose heart.

ARGH!!!!!

[Cece]

Can any dr. do a follow up exam, who would I see a vascular surgeon? HELP!!

thornyrose, I don't see anyone having answered this: you would see an interventional radiologist

[FlashHack]

Still absolutely no call. I am starting to lose heart.

ARGH!!!!!

Don't lose heart. The trickle will become a stream and the stream will become a river and the river will become a flood and the flood will drown a few neurologists, pharmaceutical companies and MS Societies. Your turn will come.

[Trish317]

Still absolutely no call. I am starting to lose heart.

ARGH!!!!!

Don't lose heart! Remind me again when you first called them? They now have a message that says your call will be returned within 72 hours.

My darling man got a call back to give basic information. He originally called on the 18th but didn't hear anything. Then on the 24th, I encouraged him to call again (I'm more impatient than he is). He got the call back on the 26th to give them insurance information, etc. He still has not gotten a call back from one of the doctors. Hopefully, that will be this week.

Maybe you should just call them back today, BB.

[Cece]

Don't lose heart. The trickle will become a stream and the stream will become a river and the river will become a flood and the flood will drown a few neurologists, pharmaceutical companies and MS Societies. Your turn will come.

What FlashHack said! It is already so changed from how things were at the end of last year. So many more opportunities to get this treated and different doctors in the game.