Hi,

I had an epidural steroid injection last january. Once I sat up after the procedure I had the most severe pain in the back of my head and the temples. I had two blood patches in february without success. I had brain and back ct and mri with contrast in march which were both negative. I was put on Topamax starting at 25mg and increasing for 4 weeks. The first two weeks showed improved but I have been on it for months now with no success after the first two weeks. I was put on Amytriptyline two weeks ago starting at 25mg for two weeks, then increasing to 50mg for two weeks.

I have no life. The pain goes when I lie down for a few minutes but comes back straight away when I stand up. I am seeing the Neurologist again next week. My only options at this stage are to repeat the blood patch but the leak could be anywhere. The only other option is a Cisternogram. However we have been warned that it is highly likely that I will have another leak during the Cisternogram but this time it will be impossible to do a blood patch to patch the leak. Does anyone have experience of Cisternograms? The other thing I was told by the consultant was that Cisternograms are not that accurate. Please help if you can. I am over four months like this and am told that I could be like this for months or years. I cannot leave the house as I am.

I had a ct myleogram which I think is similar. It was not pleasant. Lots of disgusting pain and pressure, I felt the needle in my bone and it took me 2 weeks to recover. The Doctor who preformed the procedure said he saw a leak in the room and that I was incredibly low on fluid. When he talked to me in the recovery room he let me know that despite what he said that his report would say he only saw the leak at his needle sight and that I was still within normal limits of fluid.
Later saw a neurosurgeon who reviewed the disk himself and let me know that he saw 2 leaks and a possible 3rd that was probably from the myleogram needle but that he didn't fix leaks. Unfortunately, I had a 4th and 5th blood patch without knowing about the other leaks, I did not take my disk to the 3rd anesthesiologist.
I am still leaking and still trying to get to an experienced CSF leak Doctor. The main thing I've learned is to take your disks to your appointments, make sure your neurologist and neurosurgeon view the disk not read the report which could be wrong. Good luck, let's get fixed.

Oh thank you for that help. I had a leak this time last year and had to have three blood patches and they are not pleasant. Not looking forward to the cisternogram and worried that I'll end up with more leaks than I started with. Thank you so much for your help. I would never have thought of getting the disks. I have put far too much trust in doctors. Thanks for the support.