NEED HELP BOSTON AREA

[Daugter123]

​Hello,


    My mother has chiari malformation type 1. My mother was misdiagnosed for ten years. Through years and years of pain and suffering my mother finally took matters into her own hands and starting researching her symptoms since no doctor would help us. She discovered this and contacted a neurosurgeon on her own. Her surgeon then recommended immediate decompression surgery in August 2013 after finding a 15mm herniation. Months after the surgery things started to look up. Her headaches were numbered, her neck pain was less, she regained some feeling in her feet and tingliness was less to the point where waking was doable. Her sight improved and she could finally swallow ! Now a little over a year past the surgery everything is worse. Her eye movements are out of control. The nerve pain in her legs is unbearable and she says it feels like red fire ants are living in her leg bones. Sleep is limited or she sleeps multiple hour( 17) in one day. Her short term memory is awful..... among a dozen other things. AND NO ONE WILL HELP! We have had many trips to the ER after she has fallen and nothing is done. Her neurosurgeon takes offense to any questions or concerns we have about her disease. He takes is personally and say, " It has nothing to do with my surgery". We just need help. We need answers. She is on her last end, and me being a 21 year old a having trouble lifting her spirits and giving her hope that the pain will go away.

    I reached out to the Chiari Institue in New York but due to out lac of funds and her insurance there is no way we can make it out there. I was hoping you could give me some advice or some names of specialist or doctors who can help us in the Boston/ MA area.  

Thank you for your time.

[selmaS]

   Hi  and  welcome  to  the  Chiari  forum,

I  hope  you  found  the list  of  Drs  to use  to  research  them  to find  the right one  for  your  mom.

  Not  all  Drs  be  they  NL  or  NS  are   well  informed  or  experienced  with Chiari  and  ALL  the  related  conditions  so  do  see  a few  and educate  yourself  and  your  mom  so  you  can find  the right  Dr  for her,

[kwalker0004]

Yes many of us do have to travel to find the right specialist for us. Many doctors will work with you on a payment plan and even your insurance. I had to write to my insurance company explaining that there are no specialist in my area and I got approved to see a doctor in Ohio. But our leader of this community saw there was a closer doctor to me in Baltimore and I decided to stay in Maryland once I was able to see if we would connect.

Your truly want to find a specialist as normal neurosurgeons don't run all the proper test and they think they cured us when really this is a life long condition. I know its frustrating when no one will listen to us. I had all my doctors quit on my besides the one in Baltimore. They think we are making these things up. Like who would lie about the mess we are tortured with every day.

The pain could be caused by the tethered cord like you said. But in the mean time try to educate yourself. Education is the key to success with this condition. Its a long road so prepare yourself. You are welcome

[Daugter123]

She is was diagnosed with anything else with her surgery. The ten years after the pain started she was diagnosed with fibromyalgia, CFS, she had slipped discs in her back, she has also had back surgery. The pain in her legs could be caused by tethered cord or the syrinx but we are waiting to see her neurosurgeon who is not a specialist and not very helpful as well. When we talk to him ( by him I mean the doctor working under him because he " only does the surgery") he takes it to offense thinking that we are saying her new symptoms are caused by his surgery. Thank you for list. I realize that many people travel to get help. But she has not worked in years and medicare and medicade are her insurance so we are limited.

[kwalker0004]

Hi and welcome to our community. (please forgive me for misspelled words).

There is a list of doctors on this site. I will find it and move it up so you can see it. These doctors have been seen by people that are members of this forum. This list is not a recommendation or a endorsement. Its a tool to help you do some research and find a place to start.

I am sorry your mom doesn't feel to good. When she first had her surgery was all related conditions ruled out, such as EDs, Pots, and the many more conditions we Chiarians have to face. I only ask because some of these conditions can cause us to get worse and affect the way we heal. The surgery is not a cure by no means. It is only used to restore the CSF flow. Was her neurosurgeon a specialist??

Good luck on your journey. Keep us posted