Chiari Online Support Group

Numb from neck to fingertips

Okay, here goes…
In Oct. of 2010, I was hospitalized for what they thought was viral meningitis. I’ve never gotten a straight answer as to how I got viral meningitis, other than I probably took too many different antibiotics to deal with a recurring ear ache. During an MRI, they found a Chiari 1 malformation and mastoiditis. I was told I’d had the Chiari since birth and it was nothing to worry too much about. I was given enough care to survive, but if it were up to my local hospital, I’d still be on narcotics. I’ve shied away from doctors since, because I live in a very real area with limited competence.

Fast forward to Dec 2016… I have a hard time explaining it, but all of a sudden, my arms started going numb while I slept. I’ve tried every pillow, bed and anything else I can come up with, to no avail. The last year has been the worst, with added headaches and another ear ache I can’t seem to shake. I’m realizing I need help, but am terrified to go back to the doctor. However, I did find a doctor a little over 300 miles away that has some experience with Chiari. I prefer NDs to MD’s, but my regular practitioner doesn’t even live in my state and only comes every few months. She’s awesome, but she’s also limited by time and inexperience with my type of condition. I guess I’d like to hear your thoughts- if you’d take the chance and financial leap to go see this doctor? I will refuse any kind of surgery until it’s life or death…

sorry to hear about what you are going thru. what your explaining sounds like Chiari. I am 2 1/2 years after decompression surgery and STILL have the numbness in my hands. mine is worse in left than right. part of my issues now is degenerative disk in my neck. basically I have “blown-out” disk pushing into my nerve cannel. after have 2 level disk fusion in 2013 and chiari surgery in 2016, NO surgeon wants to touch me. for some pain relief I found a pain doctor that LISTENS to me, has done his own research about both conditions and is helping. I am with you about narcotics (hate them). I am on a anti inflammatory (long lasting) naproxin 2x’s day, use muscle relaxer as needed (not sleepy one) robaxtin, and as needed a “pain pill” tramidal (non narcotic). I am able to take all of these and still work. they don’t make me sleepy or “in the clouds”. I avoid surgery until I was blacking out from chiari headaches and was had a constant thought speech issue that was hindering my work life. good luck, hopefully your PC can help with med’s for you.

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Hey I’m having same symptoms. I had my Chiari 1 surgery 4 years ago in Oct 2015. I’m having same symptoms after surgery nothing is improved. I took Pain Killers initially but after a period of time they were ineffective. So any suggestions how to overcome from all this?

I had a lot of hand numbness, clumsiness, pain, feeling of swelling without the swelling before surgery but also which developed again after surgery. I found out that it was related to Chiari but not necessarily treated by surgery. Chiari itself is a physical problem with the whole herniation into the spinal canal. However, I found out that Chiari also affects how the brain processes information from the body.

With the spinal cord and cerebellum being compressed, the brain receives strange information that it then perceives as threatening to the body and translates it into pain so that we pay attention to the body part. Unfortunately, with a brain herniation, we can not address that problem and a chronic situation emerges with the brain getting more desperate to decode the strange information and for us to do something about it. Hand, head and thoracic are common areas but others can and do occur. This is pain and problem areas that medical doctors cannot explain nor regular physical therapy address. Medications and other drug related interventions tend not to be helpful.

The brain can demonstrate altered processing technique after surgery. It does not have a time limit. Additional stress, illness, and age can reveal a struggling brain.

Great! You say. Well, what do I do about it. Brain rehabilitation. To address my head, hand, arm, thoracic, foot pain, I have worked hard on graded motor imagery, neurodynamics, vestibular rehab, eye therapy, midline work, and more. This physical therapy approach is not unique to Chiari but is used for people with concussion, stroke, MS, amputations, Compex Regional Pain Syndrome and more. Anytime the brain processes are not working optimally and pain (and other symptoms) are present.

This does not mean you are crazy or have a psychological problem.

The brain is plastic and can be worked on.

Good luck in being your own advocate and finding resources and people that can help you on your journey. New approaches and new mind sets are necessary for Chiari folk. Get the tests done, try the medications, but when they do not work please be open to the newness.