CCSVI treatment available in the U.S.!

[BevB]

BevB, let us know as soon as u get a call.
I am excited.

I'll be sure to post as soon as I get the call. I know we're all anxious and excited to get our calls and to know where they are on the list and Rieja has given us a good idea with her call dates and she now has an appointment. I think this gives us all hope. Good luck to everyone!!!

[Trish317]

I called in the last week of May, have an appointment date of Sept 13th. Insurance will cover for me I am from MN. Can't wait! Trying to keep expectations in check.

I know the feeling of trying to keep expectations in check. Well, I know them from the perspective of someone who loves someone undergoing the procedure. I can't even imagine what it must be like for someone going through it.

I pray, all the time, for wonderful results for everyone.

[erinc14]

thank you !

[longman111]

My wife called on 6/22 and today received an appointment for an mrv and then a consult with Doctor Mandato on 10/27. An appointment for the venogram/angioplasty will made after the test/consult.

[BevB]

Congrats to your wife longman111. This does leave me a little confused because the other day we discussed someone who had received an appointment whose initial call date was around May 31 or June 1. This seems somewhat out of order. I certainly don't begrudge anyone getting an appointment. I was so excited because I was thinking I would be just around the corner from getting my call, with my June 1 date. I think we need to hear, if possible, from people who called between May 22 and May 31 to see if they've been called with appointments. I'm sure all of us June callers are anxious to know where the list stands.

Good luck to all heading for their treatment!!!!

[Vivianne766]

I think Mrs. longman has an app. for consulting not treatment yet.
Am I right ?
Good speedy luck to us all.

[Cece]

I think Mrs. longman has an app. for consulting not treatment yet.
Am I right.
Good speedy luck to us all.

That makes sense, thanks for figuring that out. (Local patients do a consult and MRV imaging and then the procedure if the MRV shows ccsvi. Out-of-towners go straight to the procedure, since we're traveling in.)

There could also be differences in scheduling depending on which doctor gets a particular patient, since there are three doctors, not sure if they're all being scheduled the same way or at the same time. Also if someone happens to get scheduled into a cancellation, then they'd be sooner too.

What a change from how things were back in January/February. There were no 'out' doctors back then, other than overseas.

[longman111]

That is correct - testing and consultation only; not what we expected. From others in the forum I thought appointments would be for both testing and potential treatment. Maybe because we are only 3.5 hours away. Happy something is going forward as my wife is not doing well.

[bruce123]

We called Albany in the last week of May and got our call-back on June 3rd. We have not heard anything else yet.

We are out-of-town (out-of-country actually) so, as was said, maybe the local patients get a 2 step process with screening first then possible treatment later while us out-of-towners are on a slightly different schedule.

It was easier to wait a couple of months ago when the appointment call was in the distant future. Now it's getting tough. I can't imagine the anxiety when the actual appointment approaches.

Having everyone post when they called and when they get their appointment is very helpful. Please keep it up.

Bruce.

[lovebug]

I initially contacted Dr. Siskin June 5 and I received a call back from his office June 8. Still waiting to hear about an appt. for a venogram and possible surgery. Everytime the phone rings, I jump...........

[thornyrose76]

I called in July and got voicemail- left name, number and email and have heard nothing back but did receive email back after I emailed Siskin's office within a day- two actually from Dr. Siskin saying not to worry his office would get to me. Should I maybe phone again?

[MSbutnotMS]

I got my call back on May 21 but have not yet had an appointment scheduled. I also am out of country so hopefully it will be soon.

[Vivianne766]

Waiting sux.
Specially when you can't figure out any system. There is no consistency.
I'm frustrated.

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There.... I said it. ........ah....feelin' better now.

[millertime]

I called the end of June but no definitive date yet. Sounds like it may be a month or so before I even get a date yet by the timetables so far posted here.

[Karenems]

My initial call was May 20th. My appointment is September 1st