Hello everyone. I am thirty six, I work full time, have a wonderfully supportive husband and a busy two year old son. All of my symptoms started after giving birth May 2014. I was diagnosed with Chiari in August of 2015, I had decompression surgery in March of 2016 and then an open door laminoplasty c4-c6 done in June 2016. I am still struggling with my main symptom which is a burning, radiating nerve pain in my arms that seems to take over my entire body. With each surgery I hoped for relief and it didn’t happen, now I don’t know what to do. My NS is basically just hoping that PT makes it better, but I’m going to PT to rehabilitate my neck muscles from the last surgery not for my nerve pain. I have an appointment with the pain clinic in December, but other than that I am at a lose. I feel so disillusioned at this point and I am just wondering if anyone has had a similar experience or could offer any advice. Thank you!
I am sorry to hear that your surgeries have not helped you with your arm pain. While I do not know what is exactly wrong with you, I do know that there are lots of things that can be done to help with crazy chronic pain. Not all physical therapists are created equally just as other healthcare professionals so if yours does not have the answers maybe another will. For crazy pain, I have used a variety of techniques that have given very good results. While I might continue to have troubles after surgery, pain is no longer one of them - with no meds!
I have done nerve glide techniques, guided motor imagery, scar management techniques, and motor control exercises to help with a variety of crazy chiari pain. These are all physical therapy based so hopefully you can find someone who is knowledgeable about the brain and how it affects our pain sensation/production/continuation. The Neuro-orthopedic Institute web-site has excellent resources available to help understand chronic pain. They also provided courses for the physical therapists - not so much the motor control courses. Personally, I tend to be leery of pain clinics as they tend to try and give you techniques on managing it not actually helping your brain to normalize activity or to fix actual musculoskeletal problems that may be present. Of course, it depends on the training and philosophy of the clinic. Reading the NOI pain book can help you to understand the differences between the different types of pain and what can be done about them. If any questions just ask.
Thank you for your kind words and advice, I will certainly look into NOI pain book and ask my physical therapist about possible different options. I plan to take my MRI in for her to see to get her opinion about my pain as well. Hopefully I can get some relief, living in chronic pain is not an option I am ok with accepting at this time.
My prayers and thoughts are with you. Hope you can find some relief from your pain, please don’t give up. Like Gabby says just asks questions don’t be afraid we are all here to support each other!
