Recurring symptoms post decompression surgery/retroflexed odontoid

My daughter underwent decompression surgery almost two years ago. Since then she has suffered from chronic migraines. Now, over the past two to three weeks, she is experiencing symptoms she says are very familiar before her surgery. She has a constant headache in the back of her head and neck, ears feel full and hurt, double vision at times, arm pain. An MRI just the other day was unchanged from her post-op MRI showing no crowding or decreased CSF flow. Going to the neurosurgeon next week for his opinion then to a pain clinic. I have asked if an upright MRI would be beneficial. Neurologist doesn’t think so. I’m also curious about a retroflexed odontoid and if anyone has had experience with that or even had a dr. mention that to them. Does anyone have similar story/experience? Does scar tissue show up on MRI?
Thanks for anyone’s thoughts!

After my own experience three years post surgery, I would highly recommend trigger point release. The idea is that muscles develop tension points that can then cause a variety of symptoms - especially in the head and neck. An easy to read source book is “The Trigger Point Therapy Workbook” by Clair Davies - available on Amazon for $15. This book makes Travell and Simons work available for the average person in a highly usable way.

This technique can get to the root of problems which I appreciate. I would rather live my life rather than dance around symptoms that nobody understands. It is work that you and your daughter can do - check with your doctor to make sure it is okay if you like.

Chapter 4. Try it all. Be gentle at first. Give me a shout if you have questions. Good luck

Retroflexed Odontoid: Loose ligaments can misalign the proper angle of the odontoid bone causing it to push backwards, compressing the brainstem.
I have retroflexed odontoid.I have a lot of issues from it.
Here are a few things that are my most troubling.
Dysautonomia: brainstem compression can lead to a dysfunctional autonomic nervous system (the involuntary regulator of all body functions). Symptoms of this include, but are not limited to:
tachycardia (rapid heart)
heat intolerance
orthostatic intolerance (low blood pressure when standing)
syncope (fainting)
polydipsia (extreme thirst)
delayed gastric emptying
chronic fatigueOCF
There are more, you can google for more information.

Abbey brought up a good point about heat intolerance. I had noticed that since the temperature dropped in the last week, my head aches have subsided.

I’ve actually been having a lot of issues lately and I moved away from all my doctors so I have not been rescanned since postop 2 yrs ago. It’s almost worse than before surgery because now neck issues etc are combined on top. My primary said it could be the scar tissue building up and pushing on things, that I need to get scanned asap. I’m assuming scar tissue shows up on mri otherwise he wouldnt have told me that. Also my migraines are back with vengeance but usually when my allergies are really bad.

I completely understand what you are talking about. I had my decompression 3 years ago. My “migraines” are daily now. My neurologist has me on as much medication as I can take to try to control them but it doesn’t seem to be working. I am a nurse and manage a unit in the hospital. I have to be able to think clearly. I tried massage therapy. It does help, but you need to be consistent with it. They say I have fibromyalgia as well so that may be the reason I seem to have spasms after the massage therapy. I have been through enough meds now that insurance should allow Botox. I will be seeing my Neurologist on Tuesday to discuss it. Does anyone else know some of your triggers? I seem to get a headache to some degree every time I drive. If I lift anything over about 5 lbs, I get one, and if I lift patients, I will get a severe headache for 2-3 days. If I actually don’t have a headache, I am off balance. Like others have said, my MRI is normal as well.

Haven’t posted in a while. My daughter was evaluated by a neurosurgeon at MUSC who understands and considers all comorbidities of chiari. He attributed her symptoms to craniocervical instability and hypermobility syndrome (Not sure if it’s EDS). He explained that her medulla was being stretched due to the instability. She underwent occipitocervical fusion two weeks ago to stabilize her cervical spine and align her brainstem properly. I had to do a lot of research on my own to get to this point. Her original surgeons told us a retroflexed odontoid wasn’t a problem. From what I read from others, this is a common opinion among most doctors. Chiari and conditions that go along with it are not well studied by most, so I encourage everyone to research what you can and find a doctor who understands everything that goes with Chiari. The NIH has recently approved “Common Data Elements” for Chiari, and a list of comorbidities can be found there for reference. I hope this helps others!