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Chiari 1, Syringomyelia, and Tarlov
by Nickygg, Mar 15, 2008 02:47PM
Hi,
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...
Thanks,
Nicole
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...
Thanks,
Nicole
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There is no evidence that shows any connection between Tarlov cysts and syringomyelia. These two conditions can co-exist. Tarlov's cysts are perineural cysts. Tarlov cysts can produce symptoms if they are large.
You can have Nerve conduction study done for the nerves of the lower limb. This will help you understand if the cysts are responsible for your lower limb symptoms.
Regards