Just back from TCI

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Just back from TCI

Postby JeanneMarie » Wed Jun 13, 2007 1:47 pm

Hi, all!

I finally made it to TCI after being denied treatment at Mayo.

I had a laminectomy/decomp in 2005 for a Chiari I/C1-T8 syrinx in May 2005, after which I had a massive stroke and almost croaked. I have madea spectacular recovery (from near death, anyway) and now have some dysfunction and chronic pain/numbness issues, but can walk, talk and function somewhat normally. I applied for SSDI twice, and was just denied today in reconsideration.

TCI tested me with the whole battery, Xray, CINE-MRI, CAT scan, etc. and found acute encephylitis in addition to C1 tethering and two syrinxes, C1-T1 and T2-4. Dr. B reccomends surgery and we find out today when that should be. I am so saddened by SS's decision, as I was hoping medicare would cover the cost of the operation.

Strangely, my case worker at SS told me this morning that I should have a decision within 2-3 weeks, that a Dr. still needed to review my case. Then the denial letter came in the afternoon.

At least I know now WHY I've been in pain and the docs there are optomistic that I can get past it with surgery.

Though the service at TCI is good overall, please note that new patients are scheduled so that the first day (testing) has all appt.s in the a.m., the 2nd day (eval with docs) is loose and appointments could be any time. You are reccomended NOT to book flights out of NY that day (but Malalie forgot to tell us). We missed our NS consult because the docs had to go to the hospital for an emergency and we had to leave for our flight.

TCI did refund the whole day's visits and is doing a phone conference with Dr. B. later today.

That's where I'm at.

The best to you all,


Posts: 27
Joined: Tue Jun 05, 2007 1:41 pm

Postby loren67 » Wed Jun 13, 2007 6:18 pm

hang in there. hope you hear back from them soon. jenn
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Joined: Fri May 18, 2007 3:43 pm


Postby MrChiari » Wed Jun 13, 2007 10:02 pm

Why did they refund your whole days visit?
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Joined: Wed May 16, 2007 9:27 pm

Postby mac » Thu Jun 14, 2007 12:52 am

Jeanne, how did it go today on the phone with Dr. B? That must have been so disappointing to have to fly home without seeing him, but we all know those emergency surgeries take priority...doesn't make it any easier, though, Im sure.

Can you explain the tethering C1? Is your spinal cord tethered at that level? That is the first I've heard that terminology, but then, that's just a teeny, tiny fraction of the things I don't know about all of this stuff!

I think it's so unjust that you did not receive SSDI! With all that has happened to you and that you are dealin with now, it's so unfair! Can you appeal again?

Thank you for sharing. I'm glad you got the clear dx. Let us know when the surgery is scheduled and what.


Postby JeanneMarie » Thu Jun 14, 2007 12:38 pm

Hey again,

The refund was likely due to the fact that we arrived at TCI at 9:00 and left at 3:30 and still no Dr. B. Yesterday, we were scheduled for the phone conference at 3:00, and he didn't call until 4:30, when we had to leave to pick up our kids. Sigh...

We have rescheduled for tomorrow.

SSDI does not know what they are doing, to say the least. My case worker has still not called me back to explain that a decision was made without her knowlege, and without an M.D. signing off on it. At this point, with the updates they have (my needing another surgery, tethering, encephylitis, etc.), my lawyer is considering legal action on whiever does sign off. I also plan to get my local cogressman, Keith Ellison, involved. In MN, you have to wait a year for a court hearing, then 3 months for a decision.

I don't do anger and bitching very well, it saps my energy. Restating the facts gives me a good picture of what I'm dealing with, though.

Bottom line, I am likely to have a surgery in the fall that has the potential to restore a lot of function, reduce the pain, and vastly improve the quality of my life. I'll stay focused on that and let you know what up. :)


Posts: 27
Joined: Tue Jun 05, 2007 1:41 pm

Postby mac » Thu Jun 14, 2007 1:20 pm

Thanks Jeanne and you have the right attitude! Fight back...

maybe we'll be at NSHS at the same time for our surgery. I have two this year some time, things aren't in place yet to schedule it.

hugs to you

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