I thought I would give an update in case it helps anyone else. I went back to the neurologist and saw his assistant (PA). I brought up a CSF leak and her response was “no way”. She walked over and grabbed my neck and said: “see how tense your neck is, I’ll give you a prescription for muscle relaxers”. Even after explaining that stiff neck is a symptom of a CSF leak she completely disregarded it. At the checkout I let them know how disappointed I was that I was flat out rejected without even a discussion. The administrative staff there were top notch and got me another appointment with the original doctor in a week and half. That was very good as most have to wait months for an appointment. I was pretty worried and feeling very low at that point. I was worried it could take months or years to get a diagnoses.
In the meantime I decided to go back to my primary physician and explain the situation. He knows me and knows I wouldn’t make something like this up. I was very careful not to say I had a CSF leak even though I was pretty sure that’s what it was. I said I suspected it could be a CSF leak and it was my top candidate and I would like to have a test done to confirm or deny. After explaining all my symptoms he admitted he didn’t know much about CSF leaks so I asked if he would research it and see if he thought it was a possible candidate. He did and agreed my symptoms did seem in line with a CSF leak and it should be a candidate. I asked him to fax a letter over to my neurologist saying he suspected a CSF leak. At this point I felt my neurologist would at least have to have a discussion with me about it. At that appointment we did have that conversion and went over my symptoms and why I thought a leak was the top candidate. It really came down to it being positional. He ultimately referred me to Duke Neuroradiology. The team there is great and they have extensive knowledge and experience with CSF leaks. I got my appointment at Duke about three weeks later and first we did a lumber puncture and my pressure was 10.5 which is low. A CT myelogram confirmed it was leak. Just having the diagnoses was a huge relief.
This first blood patch did not take so I went back for a second X-ray myelogram to find the exact location of the leak. I’ve since had 3 more blood/glue patches, I’m recovering from the 4th procedure. The leak is in the front of the spine making it hard to patch and hard to get at in general. The next step will be surgery at Cedars Sinai in CA. Good luck to each of you and I wish you a speedy recovery. I’ll post back when more progress is made.