Medicaid Cgiari question fir guidance

[tattooer601]

Hello all.

  I've been a member here for awhile and am in a Delilah and thought I'd ask if anyone may know of a way to suggest ideas so I may continue my fight.

I'm disabled and have been symptomatic for 6 years now.
  I've had multiple cervical fusions in 'attempts" to elieveate symptoms.

Well a N.S. told me after he had done my total cervical fusion that I have to apply for disability.
After a extremely long fight to get disability,I received Medicaid.

Obviously I went back in hopes that I finally could have my Chiari decompression surgery.
   This didn't work out, sadly it seems this N.S. doesn't seem confident in doing my surgery.

  So I live in the south,there are NO Chiari Specialist in my state.

  Does anyone have a clue as to how I may receive help from a specialist?
Medicaid us state & federal funded,however it only accepted in the state the recipient resides.

Common sence tells me, that at some point in history someone has been granted the opportunity to see a out of state specialist while on medicaid for rare conditions.

  I'm unsure how to pursue on, I've been bedbound for 5 years due to Chiari only to find out that Medicaid doesn't cover out if state care to my knowledge.

  Please,I'm in dire straits and need direction.
  Many M.S. patients see out if state specialist and some I'm sure are Medicaid patients.

Any ideas and or suggestions would be a huge blessing, thanks for you guys time.

[kgperry]

Tatooer601, we have no Chiari experts where I live either and had a similar approach in trying to move forward with testing as I tried to figure out the next step. My syrinx is in my thoracic spine. I do have an appt with a specialist in December and am sending my imaging to others, so it was worth piecing it together instead of feeling like a sitting duck. Keep fighting and taking one step at a time!

[selmaS]

  No worries : )

[tattooer601]

Thank you selmaS

[selmaS]

  I too have Raynauds Phenomenon....and it is related to EDS.

CCI is cerviocranial instability....another related condition to EDS.

[tattooer601]

Thanks so much :) .
  I have Rynalds disease and have read it's viewed by many as a "Associated disorder".

Of theatre testing you've mentioned I have to ask what's. CCI? the other terms I remember from study early during my diagnosis.
  I'd also written down Hashimotos phenomenon, I remember from long ago that you had this one.
Thanks again

[selmaS]

  Some of the testing may not be approved by INS due to who is RXing them....so be advised your NS/ Chiari specialist  should check you for these things...

Other things I forgot...( Chiari brain fog)

Retroflexed odontoid, basilar invagnation....I think that is all of them....

[tattooer601]

So testing for the below are some of the related are:
Syringomyelia, EDS, ICP, CCI, POTS, Sleep apnea.

  I'm trying to use whatsoever available to me now through my PCP of 17 years,hoping that by being tested for related conditions I could accomplish 'something' rather than remaining in limbo.

SelmaS, If my PCP will refer me or perform these test,my thought is that once I am able to see a Chiari specialist ill have most testing done that could help them make their final decision on surgery,rather than sending me for these test .

I'm very open to suggestions, I've just made a "pact" with myself that I'll be working toward my surgery all the time in any method I can.

I've been misled and lied to reguarding my surgery & keep feeling defeated,well I'm going to continue to push anyway I can to get proper help.

I'm mad at these people,it's unfair that I'm not getting some form of true treatment after being symptomatic for more than 5 years.

We all have to FIGHT FOR OUR LIVES,in order to receive adequate care from a specialist that has compassion and is accretive in studying their field.

To everyone that reads this thread please know I never meant any disrespect,I'm alone to fight this and if anger has to be my motivator to get proper care I'll be motivated.
  
Thaks to all ,I apologize if I seem harsh,I've been getting mistreated and not taken seriously by this person that's a N.S. .
  
  

[selmaS]

  Sorry for the late response my electric was out all day yesterday.....so I went to my daughters and just got home.

Google the Drs name and look at their specialties....it should name Chiari at the top of the list and not much more unless it is related to Chiari....
ALL NS's can do the surgery but not ALL are well informed of the related conditions or experienced with them,....so it is best to go with a Dr that does their own research....etc....

There are many sub specialties with in the NS umbrella....you will have to research the Dr and see what they know and what type of experience they actually have.....will they test for ALL related conditions  Syringomyelia, EDS, ICP, CCI, POTS, Sleep apnea........

It takes time but well worth the effort.

[tattooer601]

Selma,
  I finally got called back from Medicaid they gave me a few new Brain Neurosurgeon names that are covered by Medicaid.
  
  What type of 'surgeon' should I look for, obviously I call then "Chiari surgeons".
  Are they "base skull surgeons","brain neurosurgeon"?
What term define a specialist?

[tattooer601]

Thanks :).
    I'm
striving to stay positive and hope to find a "loophole" rather than to give up.

My Chiari symptoms are well documented and films are current,I just need to find a way that Medicaid will help me see a specialist.
  If all else fails it's my understanding that Medicare supposedly starts at the 2 year point.
  

[selmaS]

  But not a MRI of the thoracic  spine and you have pain there....yes, I would say get one to rule out a disk or syrinx issue.


  No worries.....keep me posted.

[tattooer601]

Not to my knowledge, I've have current MRI of :
Brain scan
Cervical spine
Lumbar spine.

   I've been trying to receive a CINE MRI, they are unheard of in my area.
  
Reguarding Syringomyelia, unless it's in my thoracic spine, this area has always hurt me and I've to had a thoracic MRI done.
  
Being that I've had the brain,c-spine,and lumbar should I try to get a thoracic aswell?
  I'm asking because it seems I've remember reading of a high percentage of Syrnx found in the thoracic spine if Chiari patients.
   Selma, thank you for all the help over the years.
  One day I'll tecieve my decompression.

[selmaS]

  Hi...you may want to look on the link for clinical trials...Dr Heiss at NIH  and the trials are all over the country not just in MD....

https://clinicaltrials.gov/ct2/results?term=Chiari&Search=Search

Do you have Syringomyelia as well, if so there is a trial that is recruiting now.