Scared and SO very Frustrated

Welcome Greetings and Introductions
1

So glad to have found a site where others are able to share their experiences with this maddening chiari thing. I was diagnosed several years ago, with VERY little information given to me by the doctor. Actually, the chiari was found on an MRI after I complained of neck pain following a hot tub lid injury. To say that they minimized the chiari is an understatement. A few months later they schedule an EEG and another MRI. The reports revealed the chiari existed (still of very little interest to my doctor) and there was some small POSSIBLE seizure activity during the EEG but not "significant" So years later here I sit, the lower left base of my skull in a dull aching agony that spreads into my head every time I even think of laying my head against a pillow, or looking left, or up...or down (don't we all need to do these things? Guess not..the doctor said to try not to and I wouldn't hurt).

Anyhow, after my last MRI, I was dismissed by the neuro office again and told "things were the same and to call if I needed anything further". After two weeks of persistence to see the doctor I was given an appt with his NP. She told me the MRI showed a 10 mm herniation and no obvious evidence of a syrinx. And that they didn't know what to do for me but try Cymbalta because "chiari patients are a real pain to treat with all our symptoms". I was told I might want to go find a surgeon if I needed additional information.

I feel so very invalidated and frustrated. I know my pain is real and life altering. And I don't know where to begin. I am seeking any and all suggestions for pain relief..ways to get comfortable when sitting and watching tv for instance, because I can't even rest my head on a chair back without aching. Then I need to explore whether I want to talk to a surgeon..and who?? This all scares me immensely. I am sorry to rant, I am just over this pain and fear. I feel largely ignored by a medical community that is unaware of this disorder. I work in healthcare...so I can truly appreciate a doctor that will say "I can't help, but I will help you find someone who will".

Is this chiari just a doom and gloom life changer, or is there hope? Thanks so much for any input. My heart breaks for everyone suffering from this mess.

2

You have found the right place. Each person has a unique situation with their chiari. However, we all understand what you are going through. I was excused, downplayed, and laughed at before I finally found a wonderful surgeon. I had decompression done this passed November in San Antonio, TX. I was mostly symptom free until July 20, 2013. An auto accident (my 14 or 15) lead to major neurological symptoms. Trying to find someone who would be willing to do the operation on a high risk patient was not easy.

There are a few people here that have compiled a list of neurosurgeons in or around your area that have a working knowledge of chiari malformations. Consulting that list may save you a ton of leg work and time. You need relief and help sooner rather than later. Stay diligent to find the right TEAM of doctors that will help YOU.

Good luck and best wishes,

-M

3

Thank you so much for your comments! :)

Nykki said:

Hello Stephanie,

Please know that you are not alone. I too was shrugged off with little information when I first found out about the Chiari. You need to find a NS (neurosurgeon) that specializes in Chiari. The only thing that neurologist is good for is giving a referral to the specialist you need. Hang in there. This chiari road has many curves and roadblocks. We are all waiting to reach our destination of contentment.
4

OH this is awesome..thank you!!

Abby said:

Stephanie,

Here is the doctors listing for you. Please know your not alone, we are here with you. Having Chiari is not a condition that is fully understood by most doctors. We still need so much research and doctors who are trained. Good luck and positive thoughts coming your way.

5

Thank you everyone for the great information and replies! I feel like I am a little more "armed" and ready to fight for myself. So sad that this lack of knowledge in the general medical community leads to so many people suffering and fighting for a diagnosis and help!