Has anyone tried seeing a pain management specialist for Chiari headaches. I have had decompression and my symptoms have gradually returned. I have had MRIs but they show nothing. Searching for help with the pain.
I tend to be leery of clinics that label themselves pain management specialists. These clinics tend to offer pain cocktails, various types of injections, various machines, and “tips” to manage your pain in the day to day… not necessarily helpful in eliciting actual change in perceived pain levels and activity levels.
I have found that physical therapists who are knowledgeable about NOI (neuro-orthopedic Institute) pain education, course training, graded-motor imagery, and neurodynamics AND use these principles in their daily professional practice are of better use in seeing positive change.
Other skills sets include motor control exercises, primitive reflexes, and central pain assessment and treatment skills. These skills are not available in the average physical therapist or pain management specialist. However, it is worthwhile to do your homework on what a clinic has to offer before investing the necessary time in active rehabilitation. Run away if the majority of treatment is passive (TENS, interferential, other machines that plug into the wall, acupuncture, massage, heat packs, cupping etc.).
The Chiari brain has developed abnormal patterns of processing information and needs specialized approaches to change, but change it can under the proper rehabilitation assessment and treatment. Good luck in finding what you need.
You do not say what symptoms you have. Different approaches for different symptoms…
The worst is the headaches. I also have dizziness, trouble focusing and concentrating, my balance is not good, fatigue, wake up feeling as tired as when I went to sleep, sometimes one eye will be a little droopy and the other wide open, trouble with vision, and short term memory loss. I also believe I have fibromyalgia but it is not diagnosed. These are worse during the time I have the headaches.
Things are the rehabilitation treatments that I have done for these symptoms
- Headaches: scar management
kept upper cervical mobility in a good state
myofascial trigger points (Trigger Point Therapy Workbook)
neurodynamic mobilizations
graded motor imagery
motor control exercises for neck, thoracic, and shoulders
I do not have head aches anymore. I still get central pain in my head and other places on my body but to a much lesser degree and I can see an end in sight.
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Dizziness and balance: I did the primitive reflex exercises that are listed on this site. I can’t remember the last time that I had to do them to keep the dizziness and head spinning away. They work great.
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Vision: Vision Therapy exercises. Got the double vision and eye fatigue under control. I do not feel that I need reading glasses anymore and my driving endurance has improved.
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Fatigue: Good sleep and naps
continued…
I also went on a ketogenic diet followed by pre and probiotics. I am not a diet person and have actively scoffed various diets, but I was at a point where my cognitive levels and fatigue was not improving. And, I was not happy with the sub-level of activity I had. I was out of bed but definitely not a full participant in life. As recommended by a physical therapy speacialist, this wonky diet has cleared my thinking greatly AND has allowed me to make greater strides with the central pain treatment instead of just going around in circles. My husband has remarked on the sparkle in my eye is more often present even at the end of the day.
Many different approaches for a complex presentation that is Chiari. Instead of being stuck at a level of function well below what I was willing to accept, I am continuing to improve in my energy, ability, and pain levels. My rehabilitation is complex and difficult to manage, but is worth the effort. Please note that all treatments, other than the diet/probiotics are active and engaging forms of treatment. For the brain to develop, change, and improve connections there needs to be a dynamic approach.
Please ask if you have any questions about the various treatments that I have mentioned.
Thanks, I will check into these.