I am a 31 year old female who has just undergone surgery for Chiari 1 malformation with a syrinx that spanned from my C4 to my T10. I had gone in because of an onset of symptoms in my upper body, including numbness in my hands, pain in both shoulders, chest pain, neck and back pain, and pain up through my arms...
Since the surgery, almost all symptoms have disappeared (except for very painful shoulders, which I was told could be arthritis from the ACM??). Anyway, I did also have a different set of symptoms in my lower body, including hip pain on both sides, muscle spasms (also still having those up top), abdominal pain, lower back pain, and amenorrhea with an increasing amount of pain from the lower left quadrant of my pelvis. I did receive a diagnosis of endometrios, but it didn't make much sense since my periods have all but disappeared. All blood work is fine.
So I looked back over an old pelvic MRI and found the results which stated I have multiple Tarlov cysts on my sacrum. They listed it as an incidental finding, but I had had the test done because of pain in my hip. After doing some research, I have found that both the syrinx and Tarlov cysts are considered rare disorders... So I have a couple of questions... One, what are the chances of having two unrelated rare disorders??? And two, what can I do about the symptoms, which seem to be increasing over the last few weeks, without facing another surgery?? (I'm only 3 months out of a decompression-- laminectomy, craniectomy, and duraplasty)
I am desperate for a doctor who understands these conditions and can help me figure out if there is another possible cause, or what the relationship is...
I had the same brain surgery for chiari type 1. also had a syrnix in my neck very large. i was diagnosed with chiari when i was 45.I was not aware of my tarlov cysts either until i found them myself going through my medical records no one told me. they were found when i had a cat scan for something else. when i questioned my my p.c. about it she said nothing to worry about itshould not cause any symptoms.but my nerosurgen said they can cause numerous problems but can not be removed due to the fact they have a lot of nerve ending that are too close to the spine my cysts are very large and i do have back pain , pain in my legs arm pain, hip and sciatica pain and i could go on and on. i asked my neurosurgen about tethered cord and he said there is no such thing! i am confused very confused the doctors are blaming my pain on fibromyalgia i do not believe that! the pain is getting worse and more frequent and i was told that i could have permanent nerve damage just from the chiari alone. any information you have on this topic would be helpful. can these cysts cause tethered cord or is this caused just by the decompression surgery. thanks pam
many with Chairi also have related issues/conditions, do u know if u were tested for ne of them...I am not saying ur tarlov cyst is not a part of ur problems, but u should also check into some of the related issues to Chiari and rule them out as well....we do have a forum for Chiari and I invite u to join us- http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc
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