Daughter had surgery 1 1/2 years ago and is having problems moving neck from left to right and also has light sensitivity problems. Met with doctor today and he feels light sensitivity may be a migraine issue and prescribed medicine for that. We also did MRI and he said for the most part looks good but there is possibly I believe it was either bone or ligament in the neck that is curved inward causing issues. We will do a little PT and see if this helps. If not he wants to do a special MRI where she’s bent down to issue the bone or ligament. Any one have these problems or any info for me.
I had difficulty with neck movements after surgery as well. I found that good quality physical therapy was worthwhile. Standard neck range of motion and isometric exercises and machines was not worthwhile! If you research beforehand (before the first appointment) to find a physical therapist who understands and uses motor control exercises for the neck and shoulder that would be a great benefit. Unlikely to find someone who has dealt with Chiari, but if they have been working for more than 5 years and have experience with other types of post-cervical and head surgery that would help. Associations with hospitals can provide therapists with the skill set you are looking for.
Physical therapists are kind and listen well. It is easy to like them. Unfortunately, they also need to be skilled to treat Chiari folk. Be ready to move on if you find that they are not as skilled as they claim to be.
I also bought and used a book called “The Trigger Point Workbook” by Claire Davies. It is an excellent resource to work on the muscles in the neck and shoulder yourself. More to the point, you can show your daughter how to do it herself. The book is designed for laypeople but still requires focus and careful reading and application. Make sure to pay attention to the beginning part on how to save your hands!
I forgot to speak on the light issue. I personally would be wary of taking migraine medication for light sensitivity. Check out the side-effects and ask what the doctors thinks would be successful outcome of medication usage. Or is this just a “try it and see if it helps” situation? Never keen on medication being used for this purpose.
If she actually does have migraines, she should be receiving counsel on a diary to determine current migraine frequency and intensity (this will help to assess if treatment is actually helping!), exploration of triggers, ways to avoid or minimize triggers, diet approaches, good sleep and stress… and more. Writing a script for migraine medication is easy but sloppy and Chiari brains often do not do well with such medications. Other things can be done for light sensitivity!
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