Blown off by TCI

General
1

I can't even begin to tell you how hopeless I'm feeling right now. I was finally diagnosed with chiari (3 mm herniation but severe sx) by a NS at Tufts in Boston last month so I sent all of my information to TCI in NY, believing that I was finally going to get the help that I've been desperately seeking. Yesterday I received a packet from TCI with all of my CDs and some of my medical info, along with a couple sentence cover letter saying they reviewed my stuff and feel no need to see me. So the sx questionnaire that they have you fill out that I was able to check 40 out of 45 sx doesn't matter? My long letter explaining everything I'm going through doesn't matter? Just like that they blow me off? What happened to this wonderful 2-day work up that they put patients through to get to the bottom of things? How did they look at the same brain MRI as the dr at Tufts and say there's nothing wrong? The Dr at Tufts sent me for a cine-MRI but I haven't received those results yet.

I can't believe that they didn't suggest further testing since a PT eval that I sent to them shows upper cervical instability. I have a retroflexed odontoid, incomplete arch of c1 and wear and tear at c1-2...none of that was considered. There was no suggestion for testing for EDS or TCS and my TCS questionnaire had mostly positive responses. Literally just a blow off. If the top experts in the field won't help me what do I do? Live like this forever? Make believe my sx aren't real and just move on with life until my body won't let me anymore? Wait until so much time has gone by that the damage is irreversible or I end up paralyzed then I can say "I told you so!" I can't deal with it anymore. I have not been able to work for the past 18 mos and have to spend the majority of my day in a recliner due to severe pressure at the base of my skull with spastic muscles, numbness all over, difficulty swallowing, difficulty holding my head up, and the list goes on......

Does anyone have any suggestions? Is the issue that my case is a chiari 0 and does TCI not treat chiari 0? Who does? Any help or suggestions would be very much appreciated.

Feeling desperate and hopeless :(

Di

2

I am so sorry to hear this. Perhaps once you get the disc from your CINE you could try the Mayfield Chiari Center or perhaps the one in Wisconsin. I have heard of a doc in NC that takes cases other specialists have declined. Dr. Rosner I think.

Don’t give up on feeling better.

3

Yes Di please dont give up. I was just diagnosed Sept 27th 2012 and felt hopeless and desperate until I came across a great bunch of people on this site. My mother said she named me Faith because thats all she had left when she had me. I have yet to see the NS and I dont go until the 19th of Novemeber unless there is a cancellation sooner. So I dont know how bad my herniation is or if i'll have surgery. All I do know is I have practically all the symptoms. From finding this great bunch of people on here I have regained my "Faith" And I know you can too. Everyone is so kind and helpful. I love my pain management doctor he was the one who diagnosed me with Chairi I. But I dont like how he brushes it off as no big deal. I ask questions and all I hear is dont worry Faith. See what the Neuro has to say. Ive gotten more answers and support here than anywhere else. So please hang in there and know there are a group of people here praying for you. And who care about you. And if there is anything I can do personally to help you please let me know.