TCI visit....scared

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TCI visit....scared

Postby jjames » Wed Jun 20, 2007 1:45 pm

Hi all -
I am scheduled to go to TCI for the first time on July 16th and 17th. So far they have been less than organized....(I have had to call them, and I still don't know what is going on! It is hard to get messages returned, and I think the tests they have ordered are incorrect. And they won't tell me if I can have them done locally or not!) I had a decompression done in 1998, and my symptoms have gotten worse since then. The local NS thinks that the first decompression was not successful, which is why I am seeking another opinion from the experts at TCI. My symptoms actually got worse when I was pregnant, and have not gotten any better, and my son is 8 months old. That is the other thing. I will have to leave my baby while I travel to NY (I live in NE) for 4 days!! And who knows about the surgery, if/when it happens. He is my miracle baby, and I just want to be able to take care of him. I am doing that now, but it hurts so bad! I just want to be a normal mom who doesn't have to be in pain all the time. I want my son to have good memories of his mom, not that his mommy hurt all the time. I try to hide the pain from my family because they worry too much now, and there is nothing that can be done for it at the moment. I am hoping that the doctors at TCI can offer some good insight and I can have a somewhat normal life for my family. Sorry to vent...just frustrated and tired of hurting.

1998 Decompression
Syrinx C1-T10
Posts: 120
Joined: Wed May 30, 2007 11:06 am
Location: Nebraska


Postby prism » Wed Jun 20, 2007 1:55 pm

best of luck hun. best of luck. and hugs for you and your baby. prism


Postby razzle51 » Wed Jun 20, 2007 2:50 pm

I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

thanks prism

Postby jjames » Wed Jun 20, 2007 4:15 pm

Thanks prism....
we need all the luck we can get right now.
~Everything is always ok in the end. If it's not, then it isn't the end.~

1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
Posts: 120
Joined: Wed May 30, 2007 11:06 am
Location: Nebraska

Postby the 4ks » Thu Jun 21, 2007 8:09 am

You made a good choice about going to TCI they are the best.
Getting in to see them is well worth the wait and the trouble you have to go thru.
You will get alot of answers.
Good Luck to you.
the 4ks
Posts: 419
Joined: Thu May 17, 2007 10:09 am
Location: Kansas City, Missouri

Postby specialmomx2 » Thu Jun 21, 2007 9:44 am

A TCI evaluation usually involves a day of radiology in a facility near to TCI in Great Neck, and a day of assessments and evaluations at TCI.

So my *guess* is that you will have the radiolagy done on Long Island. However, your case may be different due to insurance or whatever, so best to get in touch with your TCI NP or medical secretary to confirm.

Good Luck!

"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

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