My son was diagnosed when he was 4 years old. We had 3 surgeries & stayed in the hospital close to 4 months because of so many complications. Rough year after that…then about 2 good years. (His syrnx is smaller but still there 4 years out) About 3.5 years after surgeries he started having high level chronic headaches all day everyday & nothing can touch the pain. He has tried all the emergency medicines (6) that the hospital can give him…they didn’t touch the pain. Did physical therapy for 16 weeks & his pain dropped about 1 point in the 1-10 pain scale. But once he stopped it went right back up to where he started. His pain level is between a 5.5-7 all day everyday. Let me tell you about his pain levels, he has only given himself an 8 once & that was right after brain surgery while he was in the PICU…& they were trying to make him have just Tylenol after brain surgery!! He reserves 10 for death! So he doesn’t ever give himself high numbers so it has been brutal watching him in this much pain. He is going on 10 months now with no relief.
Has anyone else experienced this after surgery & did anything help with you pain? I am so desperate for help!
There are a variety of things that can help with chronic head pain. Of course, assessment can help narrow down what would best for your son.
Some things that have helped with head stuff for me is:
1: Trigger release - done on your own. I used a book called Trigger Point Therapy Workbook by Claire Davies. Great relief for tension, muscle based, myofascial pain headaches. Also helps to normalize head movement for the next point.
Motor control exercises for the neck and shoulder. My neck and shoulders were a mess by the time I finished with surgery. Great to strengthen and normalize head and shoulder movements. Abnormal movements place a lot of strain on the neck.
Got from physical therapists. They need to be familiar with finding neutral cervical positioning, exercises for cervical upper flexion and extension and rotation. There are other exercises but this is what I needed to work on. Query therapists before paying for an assessment. If they do not know what you are talking about (even if you don’t either!) find someone who does. Specificity is the key when dealing with post-surgery Chiari necks.
Graded motor imagery exercises. These have been a lifesaver. The early exercises are an app. Ideally the same physio for the motor control exercises would be familiar with the Neuro-Orthopedic Institute ( you can research this Australian outfit - excellent research, books, and courses) exercises that help when the brain is wonky and misunderstands signals from the body and reads them as pain. Chiari folk excel at strange brain processing.
You probably are reading this and thinking “I have no idea what she is saying, this does not make sense, there has got to be something easier. I heard that acupuncture can work miracles!”. After many years of active research, talking to people, and trying things out on my own Chiari processing brain, I have yet to find something that is easy.
To change how the brain is functioning takes specificity, diligence, and time. I have yet to find quick fixes or short cuts to make actual changes in my pain levels, cognitive function, and brain perception.
If you have any questions on how to find resources or physical therapists in your area give a shout. Good luck in finding help for your son.
We did physical therapy for 16 weeks. We went to a specialist recommended by our 4th neurologist. The physical therapist specialized in head trauma. That was actually the only thing that has moved his pain but after he flat lined & was not making any more progress they stopped his physical therapy & his level when right back up to where we started. I’m not looking for a quick fix I’m just looking for anything that will possibly work.
Unfortunately, physical therapy is the same as any other profession in that there is a variety of skills and knowledge that any one physical therapist has. some The key is to find the skill-set that matches what your son needs. Physical therapists are not interchangeable.
I often read people saying what you are saying - “I did physical therapy and it did not help”. This site is also full of people saying that they saw 5 neurologists and 3 neurosurgeons before someone was able to explain what was going on and could offer assistance with education/medications or surgery. Finding people with the knowledge base to help your son is what counts. You know that your search for assistance is not over. I am offering another path that you may chose to explore or not.
I can’t seem to stop posting before I am done!
What I wanted to continue with is that I am listing what helped for myself - not just a Band-Aid for my symptoms. While these techniques are included under the umbrella of “physical therapy”, in no way are they the standard PT that is available everywhere. Hopefully, the label of physiotherapy does not scare you off and that my additional comments have not made you anymore defensive about your choice of action. It is ultimately up to you. These are simply my comments in response to you seeking help on what others have done. Take them or leave but do not cognitively lump them into physio that has already been done.
Again, good look for finding help for your son. He will need a strong and savvy advocate to assist him in navigating the health field.