New to support groups, but is there anyone out there like me?


I’ve never participated in a support group before, but I’m going to try. I’m having a down day when I feel like my Chiari has ruined and robbed me of so much. I was first diagnosed in 2011, underwent my first decompression surgery in 2012, but that only made things worse due to the surgical technique used.

After that is a really long story about how I got turned away by everybody - and some didn’t do it nicely either (ahem - I’m looking at you, Mayo Clinic). I was seen as drug seeking or crazy. I FINALLY found a surgeon who recognized that I needed another surgery and was willing to do it.

So in late in 2014, I had a revision surgery. It stopped the ever worsening progression of symptoms, and also made some symptoms less severe or even go away pretty much completely, but either the nerve damage done between surgeries has left me permanently disabled, I’m still having compression, or both. In my second surgery one of my tonsils was resected, but the other one had two pretty large blood vessels connecting to the brainstem, so my surgeon left it alone. I trust his judgment on that - I’d rather this than being paralyzed or something - but I just can’t help but feel like the remaining tonsil is still causing problems.

It’s hard on me, my family doesn’t understand, I’ve been unable to work. Hell, I can’t even brown hamburger without causing myself increased pain because of the angle of looking down at the stove top. It seems my level of disability is atypical, but maybe that’s just doctors dismissing others as they did me. Are there other people out there who have become permanently disabled - unable to work, needing help with daily things, etc. - due to Chiari? If so, how on earth do you deal with it?

i am sorry to hear about your plight post-decompression. I, too did not have a good recovery of function after my surgery 7 years ago. I did not have a redo but I spent a number of years seeing the neurosurgeon, neurologists, and neuropsychologists in an effort to receive help. I researched up a number of conditions that I could possibly have that would require surgery. However, the thing is with surgery-appropriate conditions there is evidence of a problem on imaging and testing. I had nothing - everything looked great in the eyes of these esteemed doctors. Surgeons do not do surgery if they cannot see anything to fix!

I eventually drifted towards specialized physical therapists who had a range of skills and techniques that I had never heard of to address my wonky symptoms that no one cared about, knew anything about, or thought was I was fabricating and malingering. Drugs did not help.

The neck pain from looking down slightly was definitely in my wheelhouse and was continuously getting worse with a wider range of activities and affecting me for longer periods of time. I found out that Chiari’s pressure on my brain had caused it to perceive movement in an abnormal way and to turn it into pain. We know that looking down to cook should not cause any pain! I succeeded in reducing my pain levels with a graded motor imagery programme that is also used for people with amputation pain and CRPS. The same idea with these folks is that the brain gets confused and turns stimuli into pain because it does not understand.

The graded motor imagery was not the first thing that I tried, but it should have been. It was an effective series of exercises from the Neuro-orthopedic Institute that allowed me to move on to other forms of therapy that continued me on the healing path towards increased function. Perhaps you could contact them if anyone in your area has received such training or look for physical therapists in your area that advertise this form of therapy. People who work with Complex Regional Pain Syndrome and those with amputee pain should have this knowledge-base if they are any good.

This is a youtube video that outlines how the left-right discrimination (1st level of exercises) works. I used the neck programme.

I really wanted someone in a lab coat to know what was wrong with me and fix me up quickly, hold my hand, and care. Unfortunately my journey has been long and laborious. Hopefully, yours will not be! I care and I would so like others with Chiari to benefit from what I have learned.

Thank you so much! I will definitely check that out. I’ve watched the video and Googled it a bit, I’m also dyslexic with one of my symptoms being an impaired ability to identify left and right already. I’ve emailed the NOI to ask about it.

I can see how it might work for hands, arms, feet, and legs, if there was an unaffected one, but how does it work for the neck?

Interesting about your dyslexia. You will have to do a case study on yourself and see if it improves. Literature does state that people notice an improvement but I have not looked into any actual studies on the dyslexia part. Having dyslexia is not a contra-indication to graded motor imagery therapy. You may find that your learning curve is slower than average but you will have nothing to compare to, so no worries about that! Everyone goes at their own pace anyways.

in regards to left-right determinism for the neck, the observer choses which way they think that the head is leaning or looking. Is it to the “body in picture’s” left or right. Now that I look at your question,I am not sure that I answered it. Hmmm… I will try again. If a person has two frozen shoulders, they can still go ahead with left-right determination exercises. The exercises is bringing more correct information about body orientation to the brain as ground work to lay further information about the body. Ask again if I still misunderstood what you are asking.

I am not sure on how much NOI responds to random questions from people who are ailing. You’ll have to let me know what you asked and if they respond!

Thanks. That does help with a clearer idea of what the neck images would be. I ask about the dyslexia because it was exclusion criteria for all studies I found, as well as a possible thing to check for in terms of unexpected results in the FAQs from the website. They probably won’t answer, but I’ll let you know if they do.

Yes, folks with dyslexia can have a leaning to pre-existing left-right determination difficulties which is why they are excluded. They need to create their own sample pool in a different type of study! In the clinic, with dyslexia AND kooky pain is still okay to go ahead with graded motor imagery exercises. Download the app and have a go. It takes some time getting through the levels so might as well get started!

Thanks, I’ll check it out!

Hi, I just wanted to say that I did hear back from the NOI. Here is what I sent and their response, in case it helps anyone else:


I have chronic pain from Chiari I malformation, and someone recommended your program to me, but I am dyslexic with left/right differentiation being something I’ve NEVER been able to do well. How might that affect GMI? I see in the FAQs on your website that you asked about dyslexia in your response to someone reporting unexpected results. Is GMI less effective for dyslexic patients with prior existing deficits in telling left from right? Or are there alterations in the program or expectations for persons who are dyslexic?

Best regards,

Response from the NOI:

Hi Laurie

Thanks for your message.

No solid data on this, only repeated anecdote. But what has been found is that people with dyslexia may have widely varying results from test to test. This makes interpretation nearly impossible and raises the question as to whether left/right judgement tasks (Recognise) are worth pursuing. In the case of ongoing widely varying results, the recommendation is to skip Recognise and move on to Stage 2 of GMI which is imagined activity and then on to mirror therapy in time.

No evidence to suggest that GMI is less effective for people with dyslexia, but also no evidence collected to suggest that it specifically works, although this question is rarely asked.

Still worth giving a go, and if Stage 1 is working out, there is still stage 2 and 3 of GMI that can be implemented.

My best,
xxxxx (not posting name)

Thanks for posting this. I guess they are saying to give the left-right discrimination a go regardless of your dyslexia and see what happens with your scores. Of course, reduction in pain is the ultimate goal, not how well you do on the tracking. You’ll have to keep me posted for my own curiosity.

It is a shame that he focused on your dyslexia’s effects on Recognise scoring and not how Chiari has been affected with graded motor imagery. I know it helped me tremendously but I was interested in other people’s responses if they indeed have had any clients with Chiari.