Result of appointment

[nsalem656]

My appointment went interesting. I got brave and told him about the fact that I applied to the chiari institute in new york and he is sending me to UCLA for a second opinion. Otherwise it is definitely decompression surgery. The tethered cord doesn't show on the mri. He said that he wants to wait till after the decompression surgery to deal with the tethered cord because it might not be tethered cord syndrome.

to those who went to the Chiari institute:

1. How much did they charge you? (if insurance didn't pay at all)

2. Did you like the doctors?

3. Do you think it was worth going too?

[nsalem656]

Thanks. Hopefully my insurance and them can work together. :). I hope your surgery goes well as well.

[actressmouse]

Don't know yet....just received an email from TCI that they will be scheduling my date soon.  They are also going to work with my insurance co. to get pre-auths., etc.  I should know then how much out of pocket I can expect to incur.  I will re-post when I have more info.

[nsalem656]

The reason I ask about money is because I am on state government insurance and I live in California. Do you know how much your surgeries are going to cost?

[actressmouse]

I just went to TCI in August 2011.  They were my 2nd opinion, after being given the "royal Chiari run-around" by Columbia Presbyterian.  No one at Columbia said I didn't need surgery....they just kept saying "you should wait...maybe your symptoms will go away as you age".  TCI was my 2nd opinion and I was very honest with them that they were.  I saw Dr. Bolognese...love him!!! He was honest, compassionate, informative, and gave me the option of waiting til this summer for financial reasons (if I can tough it out!!).  My out of pocket expense was:  500.00 for Dr. B., 237.00 to have my new C-spine MRI read and my overnight expenses on Long Island (I lived there for 20 years, so I know the area) which was 90.00 for a 3 star hotel right near TCI, plus gas, tolls.  I live in NY (upstate), so the drive down  took about 5 hours.  

Botton line is:  don't waste your time (and $$) going to docs that don't know Chiari....go to the best.  I was ultimately dxd with a Connective Tissue Disorder (Stickler Syndrome) which TCI picked up on....and was referred to the best genetic doc in country (Dr. Francomano in Baltimore).  Another trip that was well worth it.  My surgery at TCI has been modified now to include fusion of c1, c2, and c3 to stabilize my head.  So I'll be having 2 procedures in 1 surgery...this at the suggestion of TCI doc, Dr. B.  If they were in the business of unnecessary surgeries...why would they give me the option of waiting and why would they agree to do the 2 procedures in 1 surgery???  Check the dates on the press releases, too.  I believe that was older news.  Good luck on your journey...I hope the $$ info helps.

[irislita]

I am happy you chose this way...i tell it ll be worth it and saves u from running around helpless afterwards.

[selmaS]

  Most of this info is in our Health Pages Link page....do use it for the links to info u can use...and not just for going to TCI...there are other NS's that offer lodging at reduced rates and are listed here as well.

[nsalem656]

That's perfect information Selma. I just need to get the mri's and cds to tci before they forget I applied. 0:)

[selmaS]

  Use the Health Pages...there are non profits in the links page that will fly u free...and TCI has a location to house u for  a low rate it is called Variety House...ask about it when u schedule an appointment.

Plus, keep in mind, the prices may not be what I said as it was May '08 when I went for surgery...

And as I said there is a NS there that works with ins....ask about this when u call.

[nsalem656]

Thanks so much Selma. I really want to go to tci in new york. 520 unforunately is the cost of my travel expenses. :( Hopefully they help me find a way to get there. I really don't trust the UCLA doctor (who probably would be one of the doctors complaining about unnessary surgeries); they are supposed to be the expects in california about everything, but I think they need a reality check.

[selmaS]

  There is more out there about nothing...this is not something to be concerned with...I had my surgery there while all that was supposed to be going on.

This is not the only groups of chiari Drs under the microscope....the problem is the Drs that r judging them saying the surgery is not necessary are the same ones that tell us chiari does not cause symptoms.....

All NS's that do TC release surgeries are under fire right now too....

  I will not give credence to those reports.

[martha274]

hi guys, i actually read online that the institute is under investigation for practicing surgeries that were not necessary and experimental. please review, and check them out.

[selmaS]

  Hi..I recently heard one of TCI's NS's is working with ins...and was it worth it...heck yeah...I had my surgery there and was well pleased with my NS....not everyone will like all Drs, so u have to find the one that is right for u, TCI has several, and u can request which one u want  or if u need it to be within ur ins needs...they have several NS's at one location which is nice.

U only pay the NS's office visit which was 530.00 back when I went, I have no idea what it is now.