Quote:
Originally Posted by Oregonsand
After trying to convince my primary care doc that the pain is not in my head, the MRI results show large Tarlov cysts. I'm getting ready to go back to see my doc (who graduated med school about 20yrs ago) and am ready to hear from him the standard reply about Tarlov cysts being asymptomatic and how they couldn't possibly be the cause of my pain.
I've already printed out lots of updated info & studies that will hopefully point out the fact that Tarlov cysts can cause a lot of pain. Even if I can convince him to refer me to a neurosurgeon, I can't seem to find a single reference online to any neurosurgeons in Oregon that has any expertise in this field.
I don't have the resources to fly to Kansas or Dallas to see the doctors who operate on Tarlov cysts, and the original injury that may have caused them to form was a fall at home-so I cannot go the workers comp route.
I'm guessing there may be other people who were once in my shoes and perhaps they can guide me on where I go from here.
While it's great to finally know what is causing my back pain as I read story after story from people sharing that same pain/problems, it's also a double edged sword if I can't get treatment to correct the problem.
Any help would be greatly appreciated, especially before I return to my primary doctor.
Thanks
Cathy
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Hi Cathy,
When you do see your primary care physician, ask him to send you to a neurologist in your area and hopefully the neurologists will have some experience with Tarlov cysts and help you regarding further testing such as nerve conduction studies, muscle conduction studies, etc. Then, maybe, he can refer you to a neurosurgeon that is knowledgeable in Tarlov cysts. Ask your family and friends if they can help you financially to fly to Texas when it becomes necessary to do this. First, I would have the studies of nerve and muscle and also determine what size the Tarlov cyst. The Tarlov Cyst Foundation can also direct you for more information.
Good luck.
Kathryn1