Hello,

My teen daughter has moderate-severe scoliosis with a small accompanying syrinx in her thoracic spine. Both neurologists we visited were not concerned with her syrinx. Therefore, I sent her MRI's and information to the Chiari Institute on Long Island, to see if she was eligible for their expertise. They called to make an appointment for my daughter, as they believed they could offer some help. However, they want us to get the following prior to her visit: 8 x-rays, a full head 3-D CAT-scan, and a full brain and spine MRI with Cine. They made it rather clear that all films etc. should be done at one of their affiliated clinics on Long Island, and not in New York City where I live closer to (where there are obviously several excellent facilities).

I am wondering if anyone has had any experience with this institute? I am finding their protocol extremely fishy. And, I figure if my daughter's syrinx and scoliosis isn't enough, then the cancer she is likely to get after all of the procedures they are requiring will be!

Thank you for any advice.

Brooke

Are you talking about The Chiari Institute in Manhassett (forgive my spelling)?

I was/ am a patient there. Infact I've had a posterior fossa revision and tethered cord release from them. So far 2 years after the fact I'm holding my own and am in some semblance of recovery (of course being 40 and having CMI and syringo (I have thoracic also) still has its challenges).

I can understand being cautious, expecialy with her being a teen. I have a daughter myself and would question it too. Call the nurse assigned to her case and explain your concerns. Ask her why they want what they want and why at their facilities.

In my case I needed films done at their facilities in Long Island because the radiologist in my area (Alabama) weren't trained to do the films the way the docs needed them so they could look at what they wanted.

Of course I came to their facilities as a last resort. All the docs I went to were either not familiar with complicated cases, didn't want to do anything for me, or did not understand what was going on.

I hope this helps.

My sister went there to have her tethered cord repaired. It was a few years ago. When she decided to have the chiari malformation removed - she chose Aurora Colorado. She had heard talk about the hospital in New York having problems and didn't want to take any chances.

Good luck to you and your daughter. I understand your concern about the ionizing radiation. She is young. If they are unwilling to work with you about this, perhaps this is NOT a good selection for treatment.

All those scans and xrays will then be repeated post op. I feel I have had too many in my lifetime that proved to be unnecessary. Be heard. Tell them your concern. Excessive radiation can be threatening and they know it.

Hello,

I hope your daughter is doing well.

My wife and her sisters need to get checked out for Chiari I because her sister just passed away and they think that's what caused it. My wife is 38. We live in Brooklyn.

Any advice about where to go in the NYC area?

Thank you in advance for any advice.

John

I live in CY and have not heard good things about this institute. I've heard horror stories about the care in the hospital after surgery. I know one of the more prominent doctors left a patient on the OR table and forgot and left. I had my neurosurgeon check them out and it wasn't good. Of course there are plenty of success stories too, but I think for them it's become more of a money making business. Get a 2nd and 3rd opinion.

Hi Ewie has your daughter had chiari decompression surgery? i had this surgery 6m ago they removed piece of occipital bone to give room i hope all goes well goodluck if i can answer any questions give a shout cally in tampa