Blown off by TCi

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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

[selmaS]

  sigh.....hmmm this is a tough one....I have never heard of a geneticist refusing to check for EDS...not all types of EDS r hyper mobile....so  the fact u r not scoring above a 0 is not proff u do not have EDS or hyper mobile joints as they do not check all joints with the Beighton score test.

Do u know if u have a EDS specialist in ur area?

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Thanks for your input.  I saw a geneticist to be tested for EDS. After doing a thorough clinical exam he said I scored 0/9 on the Beighton scale so he felt now need to do genetic testing. He said I had no hypermobility in my joints. He did not examine my neck, though, saying it's not his area of specialty. The only one that has thoroughly evaluated my neck is a PT that is certified in spinal stabilization and he is adamant that I have hypermobility in my c-spine and there is upper cervical instability but not matter how much I tell doctors they refuse to listen to me or read the PT reports and they never put their hands on me to evaluate for themselves. Unfortunately all of the radiology that has been done has not shown the instability - b/c it's all done lying down!!!!!  Flex/exten xrays haven't shown it either.  Not sure what else to do. I KNOW that it's unstable...I can feel my skull shift and hear bone crunching as I move and that's when all the awful neuro sx happen.   I have to wear a stiff neck brace when upright but that's not even enough support to hold my head up so it feels normal.  Are there other tests that I should insist on??

[selmaS]

  Well the NL and all the  others involved in the surgery, the hospital, anesthesiologist, and what not all worked with my ins....the only one that did not was the NS....so my ins paid a portion of it and there was a small amount for me to pay...but it  was not as much as I feared......

Since ur CSF flow is "normal" then it is not the Chiari causing the symptoms....so, u need to find a EDS specialist and see if that is the cause.....EDS symptoms r very similar to Chiari....u get HA's. vision issues, the cerviocranial instability, joint pain....

  As  I mentioned b4 I was dx'd with fibro and was later told it was not fibro but EDS...I would suggest u check that out first since u have Chiari,  u just r not a surgical candidate now....

Trust me I know how u feel and if I was able to get a MRI yrs b4 I actually did, I may have gotten the same  info u did...but I had the same issues...but they did come and go as Chiari symptoms do.....hopefully this is just a flare and will calm down soon.

But with all the disk issues, I would look at EDS,.

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I will definitely email Dr B.  How did you get insurance to cover everything...did you have to submit afterwards?  I'm confused by that whole process.  I finally got my cine-MRI results and they say it's all normal. I'm beyond confused as to what is going on then. I don't understand how these tests keep coming back normal yet I am a neurological mess every single day and can barely hold my head up. And while in the MRI I was completely numb...my arms and legs didn't feel attached and when I got up I felt totally out of it.  How do I have these sx with no explanation? The radiologist at Tufts even said that my cerebellar tonsils are WNL so now saying I don't have chiari?  Yet the NS looked at a brain MRI and said they were at least herniated 3 mm. Every day I get a different answer based on who's looking at it.  The MRI was done for my entire spine to look for syrinx and they said there wasn't one.  It did point out a few things that I'm not sure what it means and will have to research myself I guess.  It says......mild endplate degenerative marrow signal changes are noted at several levels, as well as T2 hyperintense foci in the T11 vertebral body which likely reflect fatty deposits or hemangiomas. Then goes on to point out tiny posterior disc protrusion from T5-T10 and a small disc bulge at L5-S1.  
If I don't have chiari, is it possible that fibromyalgia really causes all these sx?  When I was given that dx I sorta brushed it off as wrong.  Could I have FM and not CM?  I am so confused and frustrated. I'm not making this stuff up. I have such awful debilitating sx but no explanation for them!

[selmaS]

  I don't know but when I went none of the NS's worked with ins....this Dr R is new and he is the only one that does.,..so not sure what is going on.....Plus much of what I had done was covered by ins, it was just the visit costs...so I paid for that just so I could go there....

Well the fund raising is not a bad idea and I have suggested that to a few others....

Deff try Dr B again and see if he can suggest something to u, explain u did not have ur CINE MRI yet and how u get them to revisit ur case.

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Thank you and selma for your suggestion.  How I wish I could see Dr B....why don't the insurance companies cover him?  The only Dr at TCI that my insurance will cover is Dr Rekate and it's a good, nationwide insurance.  I had emailed Dr B a while ago with my sob story and was told to hold fundraisers for myself.  I was a bit surprised by that response. Dr Rekate has actually responded sounding as if he at least has empathy.  Maybe I'll try to email Dr B again....if he would at least take a look!  ugh!!