Should I forget about surgery?

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Should I forget about surgery?

Postby toport20 » Thu Nov 10, 2011 8:07 pm

Hi all,

Been a long time! I had TCS surgery in 07 with minimal Chiari and Syringomyelia. Now CM is 8mm and SM is 9mm in width on Mri's in the beginning of the year. I know I need surgery, I had to file bankruptcy after other surgery and have no money to travel. Not satisfied with docs in OH!!

I am on SSD and have secondary insurance from my old employer, but it doesn't cover the other things?

Does anyone know if there is some type of financial support available anywhere- i.e. travel, hotel stays? Ready to give up. Thanks.
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Should I forget about surgery?

Postby pmaxwell » Fri Nov 11, 2011 9:45 am

Often when surgery fails it is because there is something else going on that has been overlooked. But there is also the possibility of scar tissue forming that can cause spinal fluid blockage.

Have you considered the NIH/NINDS? they have clinical trials available and if you qualify,it is my understanding they cover the expenses.

http://www.asap.org/index.php/resources ... resources/ This link is on our website and has information for travel assistance and patient advocacy groups.

You can also check with your state to see if programs are available. Your local state representative should be able to give you a list of any programs that are available.

Hopefully others will have more suggestions.

best wishes,

Patricia
Together We Can...
pmaxwell
 
Posts: 152
Joined: Mon Jan 31, 2011 2:20 pm

Re: Should I forget about surgery?

Postby toport20 » Sat Nov 12, 2011 3:44 pm

Thanks Patricia,

Guess I better get my homework done huh? Somedays I just want to give up, I feel bad every day and live by myself so don't feel like doing much. I'm not sure where I will go, I did go to the Chiari Institute before. Do you remember if there was a place you could stay around the hospital where you could recover? Or anyone else?

Godbless!

:P
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Should I forget about surgery?

Postby Sueli » Wed Nov 16, 2011 8:11 am

Dear toport20,
There is a place called "Variety" house if my memory serves me correctly. The caretaker's name is Dennis. When you call for an appointment at TCI ask if you can stay there. I ended up having
surgery in NYC , but I still have high regards for Dr. B.

Hang in there!

Sueli
Sueli
 
Posts: 16
Joined: Thu Mar 31, 2011 9:06 pm

Re: Should I forget about surgery?

Postby toport20 » Mon Nov 21, 2011 8:12 pm

Sueli,

Thanks for the input, I couldn't remember the name of the house. I'm not sure they are in business anymore, seems like they were trying to work on something else. I know Dr. B has gone through some things, but I would go back in a minute. Actually I left him a message to see what his input is.

Thanks for refreshing what's left of my memory...LOL
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio


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