Chiari Malformation Post Op Decompression surgery but still having pain.

[candy0722]

Hi, I have been suffering since 1992. I was first diagnosed with a psuedo-tumor cerebri. After many spinal taps, I had a paratuneal shunt put in. This helped for years. In 2009. Symptoms returned. I was diagnosed with a Chiari Malformation by a pain management dr. She sent me to a Neurosurgeon who recommended Decompression surgery. Surgery was in August of 2010. I was fine until about a month ago. I am having pain in my arms. The pain started at the tips of my fingers and radiates up my arm. I am even experiencing some pain in my legs occasionally. I have been reading up on other conditions. My doctor did a MRI on Wed. I will be getting the results tomorrow. I am worried that something else is wrong. Is this common with my condition? On top of that I am not able to work due to pain. My work disability was cancelled because the insurance company thinks I can return to work. I was denied SSI and disability. I dont have insurance and dont qualify for assistance. I am very stressed and about to lose it. Does anyone have any suggestions on how to get help. I cant continue to go to see my Dr with no income or insurance...

[selmaS]

  My deepest sympathies on the loss of ur daughter .....I can not imagine such a loss....heartbreaking.

But I do know, we chiarians r a tough breed, and u will get thru this, all of it...one day at a time and u do have friends here willing to support u : )

TC or tethered cord is when the spinal cord attaches to the spinal column it pulls down on the brain stem...and bcuz of that most with TC will have an elongated brain stem on MRI....we also will have a sacral  dimple.Some time a hairy patch...but some form of evidence it is there. The TC can also pull the cerebellum tonsils down, so if a PFD surgery is done and the TC is present it can create even more issues post op....and pull the tonsils back down or not let them retract.The surgery to release the cord comes with possibilities of a re-tether...scar tissue can cause this and more surgery would be the option.....

Symptoms of TC r similar to those of chiari with more bowel and bladder involvement.

I am surprised u got the LTD, I was denied...I paid into it for 15 yrs too....I am not done fighting tho...I will keep going...as will u : )

    "selma"

[candy0722]

Thank you for your comment. It helps to know there are people who understand my frustration. It seems as if I am all alone. I have worked since age 15. Now I cant work and there is no help out there for me. I cant even get a medical card or food stamps temporarily. I cant attempt to go back to work due to the fact that I am still having severe pain in both arms, memory issues, depression and sleep issues. Just to name a few. On top off all that I lost a daughter in a auto accident a couple of years ago and went through a divorce. I dont know how much more I can take. Does anyone have any suggestions??

[epsion22]

There is no way you should lose your disability in my research and the insurance company has no right to do this (but they will). I would recommend getting a disability lawyer to get your income back.

[candy0722]

Thank you for your response. I recieved Long Term disability through my employer. My Doctor did provide medical information to my insurance company regarding my condition, surgery and how long he wanted me to be off. I was just cut off without a notice. Just told I would not receive a check again. I have not been tested for a tethered cord. What is that? What are the symptoms? I am very frustrated at this point.

[selmaS]

  Hi and welcome to the Chiari forum.

   May I ask how u had disability in order for it to be cancelled?...Did ur Chiari NS write a letter for u?.....

  Did u have a PFD with lamenectomy and duraplasty?...what type of patch if u had one?

  DO u know if u were tested for tethered cord, Ehlers-danlos, ?

     I am in the same boat as u....no income...and no disability at this point...so I do understand what u r going thru.

Hang in there....

   "selma"