Due to some new symptoms I’ve recently developed my Neuro is suspicious of a high CSF pressure problem. I’m going to have the spinal tap at Duke in a couple of weeks. Everything I’ve read about high CSF pressure on line in bleak. Has anyone had this and had it fixed?
I have low csf pressure. I have been seen at Duke as they thought it was too high to begin with, but the test revealed it was low and I had leaks. If you end up getting a myleogram, I highly recommend Dr. Gray at Duke, she understands this stuff really well.
Good Luck to you!
Thanks inafog! I actually got Dr. Linda Gray! I had to ask for her specifically. I’ve read a lot of your posts about CSF. I hope it does not take too long for my referral. Do you know much about high CSF? Obviously it could be low or it could even be fine. Dr. Adkins just thinks this is something to look into. Also will be please tell me about the procedure? Do they do it at the Vestibular Clinic or the actual hospital? Is it outpatient? Is it local anast? How bad does it hurt? (I’ve had an epidural and a spinal) so I sort of have an idea. It’s done in the neck right? How long does it take? Sorry about all the questions, you just seem to know a lot about this stuff 
I don’t know much about high pressure except that the first line to correct it is taking drugs like diamox to reduce the pressure.
They do a CT guided puncture in your lumbar (lower back) spine using local anesthetic. It hurts a little as they advance the needle, but they add more lidacaine, and so it is not bad. I think it is more scary than anything. Sitting still while she checks the pressure is hard. Based on high or low, she will adjust your pressure on the table by drawing off more fluid (in the case of too high) and you may feel a difference right there on the table. In my case, it was too low, so she added fluid, and I could immediately tell that my vision was no longer distorted. The procedure is done in the radiology department on the 1st floor of the Hospital.
Thank you for the info. I have been researching Dr. Gray and I had no idea that she is pretty much THE expert in this. So may I ask your symptoms? Mine are as follows: headaches that began IMMEDIATELY after spinal epidural, rocking vertigo, feeling of always being “out of it”, anxiety, and a lot of pain in my neck. Kind of in a fog
Also, my new symptom that prompted my Dr. to order the spinal tap is vision disturbances. I’m just not seeing things as sharply and I find I have to close one eye to see better. She’s also sending me to a neuro-optomologist if spinal tap comes back fine. Do you live in NC?
The vision thing has been the biggest difference for me. When I am not well, I just am not able to process everything I see…it is so hard to explain, also my sense of balance is off, and then a whole list of other symptoms all related to this foggy feeling in my head. Anxiety has not been too much of a problem for me. I have had a bit of anxiety when I have been in public and have trouble staying upright and have to stagger out the door, but the anxiety is situational. Oh, also had a little anxiety when Dr. Gray talked a student through my lumbar puncture----he looked like he was 16! LOL (he did great though)
After I got more fluid in, Dr. Gray walked me down the hall and I remember her asking how I felt, and all I could think to say was that I could see better, oh and I could walk and look at the signs at the same time (processing both walking, reading and looking around all at once) The difference in my vision was profound! Also, my tinnitus was gone as well as head pressure.
I wish I lived in NC, but I have to travel back there every time from the West Coast. Next week will be the 4th time. I had wanted Dr. Gray to recommend someone out here who could do what she does, for this patch, but I was unable to connect with her, and I wanted to get another patch before I head out to Hawaii for Christmas. Hopefully this patch will do the trick, permanently, but if not, I hope to find some care closer to home.
By the way, I also have neck pain which has improved when my pressure is normal.
Wow, I understand that not being able to walk and read things feeling. That’s wonderful that it has worked for you! Hopefully you can find someone else that can do the patches. How long did you suffer? As I write this message the words are all blurred. It’s so much fun to have this condition. I pray Dr. Gray can find it and fix it if it is CSF related.