I have had orthostatic headaches since the day after a nasty epidural during labor 10 months ago. I have been through 5 blood patches with noticeable results from the last 2. I have had no help, referral, or suggestions from my health care provider. The radiologist in Lubbock,TX who did my myleogram, a test at my request, said he saw a leak and that I was low on fluid in the room but in the recovery room he let me know that I was still in the normal limits of fluid and that despite what he may have said that his report would say he thinks the only leak he saw is from his needle.
I finally saw a neurosurgeon in Lubbock, TX who looked at my myleogram disk and said he saw 2 leaks but that he and every other surgeon in Lubbock and Amarillo, TX do not fix CSF leaks. His report said nothing about seeing leaks or that I should be helped promptly, he did not listen to any symptom except orthostatic headache. He told me I should go to Dallas, TX. The neurosurgeon I saw today in Dallas and paid for out of pocket said he saw no leak. I feel that he only read the report and did not view the disk.

He told me that it was probably a cervical disc problem and had no explanation to why my headaches are positional or why I'm vomiting, nauseated, fainting, having interscalpular pain, lumbar pain, heart problems and kidney problems. His report gave blood pressure results, temp, said my pain never interfered with my "housework", along with a whole slew of other things we never went over in his office. It was a completely false report. I am at home alone with an infant and a 5 year old while my husband is deployed. I am worried I'll pass out while driving with my children or while bathing my baby.

Every time I get sent to some other doctor who has no experience with CSF leaks it takes months for I live in a small town in New Mexico. I'm worried I am going to die before I find an experienced Doctor that will listen to me. I'm 32, I eat very healthy and exercise(as much as I can with the headaches), I have normal thyroid levels. Suggestions on how to get Tricare to send me to the right doctor or somewhere with neuroradiology would be great. Also, any other ideas of what this could be beside CSF leak are welcome. Thanks for your time, AUD