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Chiari Malformation Community
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1069888 tn?1421940341

Disability Reconsideration... unknown doctors...

Recently, my disability insurance company has informed me that I have to have an IME for reconsideration of benefits.  First they wanted to send me to an occupational therapist.  I told them I didn't think this person would have a clue with regard to my conditions and that most of the neuro community didn't either.  Well, they then decided that I would see a neurosurgeon.  (The one suggested has a BAD rating and NO CLUE about Chiari, etc.)  I have sent them names of Chiari Docs... I don't know what more to do.

My question is... has anyone had to go through this?  If so, what do they do?  

I have been working on getting back into Cleveland Clinic, though I'm not real sure who is left there for Chiari...  I really need a follow-up for more recent baselines on my MRIs and EMGs.  I will have to pay for it out of pocket though, as I have no health insurance.  At Cleveland Clinic though, they have one of the most generous financial assistance programs I have seen anywhere.  (4 times the poverty index!)

4 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi Lori....I know ChiariWolf still goes to CC and may be able to let you know who is there name wise....I am drawing a blank....sorry.

And as for the Disability, I am told those that claim to also have depression (which is on the disability list) get approval....sad to say we need to get Chiari added to the list.

The more DX's you can have added the better and of course if they are on the list then even better.....

We do have some tips to get the disability....I will try to bump up that thread. Keep us posted on what happens.
Avatar universal
Dr William Bingaman at Cleveland clinic did my surgery and did it perfectly. He is extremely thorough and will also do second opinion. He may be able to help
1069888 tn?1421940341
Thank you Selma and dhrycik!

I don't even know where to begin with this... I have so much going on and with all of the cross-over symptoms, where do you start?  Depression and anxiety are things I was treated with (rx) for years.  I have since stopped most rx meds and gone to natural unless I absolutely MUST take the rx.  I also have SLE, EDS, POTS, IIH/PTC, and so on...  Sometimes it's very difficult to figure out what is currently causing some symptoms.  Furthermore, being constantly fatigued... but having horrible insomnia and GERD make that even worse.

I will look into Dr. Bingaman a bit.  I have to admit, I have not heard his name up to now.  I will definitely look into him though.  

Thank you both!!!

Blessings!!!
620923 tn?1452919248
COMMUNITY LEADER

  Lori have they looked at you for Mast Cell Disease? It is related to EDS and can be part of the issue as well...I found after some reading it can cause us to over produce histamines and that can cause PND and in turn GERD....and it can also affect our sleep and how rested we feel.....since starting on anti histamines b4 bed I am sleeping better and am not as fatigued as I had been.

I still have occasional insomnia, but nothing like I  had and my GERD meds are down to just b4 I want to eat something like pizza...
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