Waiting Process

So I sent my daughters records and MRI images to one of the top pediatric places in ohio. I'm still waiting for a reply from them. Crossing my fingers that they will be able to help my daughter. I'm very determined to find someone that can help my daughter. I hate the this waiting process,its very frustrating.

I know waiting is hard especially when someone you love is not well. I went through 52 Specialists over four years, until I got sent to the right one. Never stop searching. A great place to find the right provider is the the National Institute of Health. You can read the studies and then search the doctors that did them. A specialist at UVA sent me to a Dr. in Pittsburgh from a study he found on the NIH website. I had a rare disorder that had never been diagnosed & treated at UVA before my ACM was diagnosed. Please stay strong, Hopefully you will get a call soon. I know most dr's get together with their associates and go over new patients records weekly.


Not shure who you are seeing or have seen. But we are also in Ohio and met with Dr. Violette Recinos a NS at the Cleveland Clinic. She specializes in pediatric and adult chiari. If you needed a name, I would recommend her. She only met with us once, but I did some research on her, she came highly recommended. Also, when we met with her she was great and actually advised against surgery for my wife as the imaging and exam evidence and symptoms didn't support cutting her open. Not what you would expect from a surgeon. Good decision too, as the neck pain and headaches that we thought were her chiari becoming symptomatic as all but gone now. Only her tingling and numbness remain, and they still don't know what is causing that. Good luck!

hi Susan....

I know...the waiting...it is torture, right????

Tracy and NeoGeoH gave you great input....thanks guys!!

Please let us know when you find out whats going on, ok???



Thank you for all the reply and support. Yes,this waiting is torture. I'm still waiting for a reply from Ohio. Do you think I should of heard something by now? For the good news my daughter was able to take 7 steps today with out her walker or any help. We both have bad headaches tonight. I think its because the weather change over night.

Thank you


How long has it been since the doctor has had your daughters records? I would call them on Monday and ask if they have them and how long their consideration will take. Then at least you will know a timeframe.