Chiari Online Support Group

New Symptoms 14 yrs Post Decompression

Hello Team,

My name is Amber. I was diagnosed with ACM Type II in 2007. I am now many years post surgery and I’m having increased numbness and tingling on my left side. All my imaging is negative for compression and my syrinx resolved itself post surgery. I feel this is a neuropathy issue connected to ACM, but I can’t get a Dr. to tell me that. My neurosurgeon says my surgical site is “prestine” and my CSF flow is great. I do have ulnar nerve impingement, but both my arms go numb randomly and my whole left side tingles and goes numb. I also have Trigeminal Neuralgia and been one all kinds of neuropathic medications. I’ve had EKGs done and do have nerve issues in the areas I’ve been tested (they didn’t do enough areas I don’t think). Does anyone else have anything like this? No one can tell me anything at this point.

I found that I had a number of symptoms emerge after surgery when my imaging looked just fine. Turns out that muscle triggers can have pain and numbness referral patterns and faulty motor control (how the neck and shoulder are moving in my case) can affect nerves and their function and sensitivity to irritation. Graded Motor Imagery is great therapy tool when the brain is not processing body information well.

The Trigger Point Therapy Workbook by Claire Davies fixed up a lot of wonky nervy things after numerous doctors had finished up their tests and threw their hands up in the air. It is a great book where I can look at body pictures of where my pain is and the book gives me a list of muscles to work on. Tells you “the How” of how to work on muscle trigger problems.

I was very disappointed that doctors could not tell me that “this surgery” would fix me up. It took a lot of time and reconfiguring of my thinking on what was wrong with me to accept that pushing on a muscle in my face and neck could get rid of the pain and numbness in my face. Craziness!

Unfortunately, if doctors cannot see anything to fix on imaging they do not go in for exploratory surgery! I am thinking that was a good thing in my case.

Keep in mind that Trigeminal Neuralgia is just a description of having chronic pain in that nerve distribution. The doctor is not telling you WHY that is or how to fix it! Doctors kept tossing around neuralgia in my case but could not tell me anything else - and head pain kept getting worse.

I also worked on graded motor imagery to address the head pain. My brain did not know how to process information from my neck and head and just turned it into the sensation of pain. Pain after dumb things that should not cause pain was getting out of hand and making my interactions with the world smaller and smaller.

Doctors do not have all the answers on why people have chronic pain nor what to do about it. Other sources of information are necessary.

Graded Motor Imagery
Muscle Trigger Therapy
Motor Control

Chances are if you mention any of these therapy techniques, a doctor will scoff, indicate a “try it if you like” attitude, or honestly say that they know nothing about them. That does not mean that they are not valid therapies for the Chiari brain.

With all of the therapies, initial assessment is quickly able to ascertain if you have problems in the areas that the therapies address. A quick poke at muscles according to the charts in the workbook will let you know if the muscle is involved - relief is fairly quick. Neurodynamic testing by phsyical therapist is quick to sort out too. Graded motor imagery is computerized and on an app.

Of course other people have what you are going through. The question is what to do about it. Try not to get overwhelmed but go ahead and try something new! Where do you think would be a good place to start?