I had my decompression surgery May 2012. Developed a CSF leak a week later, doctors office said it was probably just a swollen muscle, what did I know! Three weeks later had an MRI, yep, CSF leak. Doctor says lets try a lumbar drain, it's less invasive. OK! Seven days in ICU with a lumbar drain, horrible. A week later, still a leak. Three weeks go by and doctor says must have blown a stitch, needs to be repaired. Went in the hospital for surgery #2 and had a lumbar drain at the same time...ouch. About two weeks after that surgery I felt some swelling at the base of my skull, not the same place as before where it was on the suture site at my neck like a golf ball, this time it's bigger and higher up on my head. Almost from my right ear to my left. It's pretty big. Had MRI's of my c-spine and brain. Suboccipital CSF leak and Psedomeningocele. My doctor was on vacation for three weeks in August so I had to wait. Finally saw him and he says the only thing I can do is a lumbar shunt. I asked him about grafting tissue from my own body, he's says he doesn't do that. He said he has always used the Bovine patch and it works well. Yet he said mine has a defused leak. His explaination was mine is leaking from all the stitches not just one so a repair is not able to be done. Said it won't help. I don't want a shunt. I don't want a shunt. Does anyone know of any doctors in Florida or know of anything else I can try before I have to have the shunt? I have been sleeping in a chair since August 3rd,can't drive, can't move my head at all, the pressure is so bad that I sometimes can't think. After reading in this website, I found Diamox worked for some people. I called my doctor yesterday and asked him for Diamox. He reluctantly gave it to me stating that it wasn't going to work and I needed to prepare myself for the shunt. Any ideas???
I am so sorry you are going through so much. I only know of a pediatric NS. His name is Dr. Trumble & he is a member here. Send him a message and ask for an Adult NS recommendation. Please let us know how you are doing. We really do care & understand.
Tracy Z.
I am so sorry you are going through this! Just today I received a copy of the neurologist’s notes (5 pages) and right there in black and white…they are trying Diamox and Topamax to reduce the large pseudomeningocele. We started the meds June 14 and by our next visit she was very much improved. She played a tennis match today which is remarkable given her condition 2 months ago. lIt did work for my daughter and I am praying that it helps you as well.
Thank you for the information. I have requested him as a friend.
Oh Rachele, I am so sorry for what you're going through and the doctor not listening to your wants for your own Dura patch. It seems to me that a new doctor might be in your best interest. I have a friend that lives near me that had her own Dura taken from the outside of her left thigh. Now a year after surgery, she said that the leg area feels like a bruise still but her incision site has no pain. She still gets headaches, but they are far and few between.
I will pray that you get the fix and it be the right decision for you. Avoid the shunt if you can.
Praying for you,
Lori D
Thank you for your input. All the information I have gotten from this site has been so very helpful. I wish I would have signed up 'long ago, maybe I wouldn't be in this situation. I am looking for a new NS. Unfortunately, there aren't any near me that deal with Chiari. I had to drive three hours for my last one. Again, thank you for the information.
Please let us know if the Diamox helps! Fingers crossed!
Hi Rachel,I too have a csk leak and a pusedo.Im waiting to have a dura graft repair,have had mine since the surgery in nov 2011!!! they tried an epidural blood patch in June that didnt work just gave me a bad back! do you suffer with postural headaches? I cant stand up with out getting a headache and dizzy and feels like my brain is pushing downwards.hope you ok x
Hi Denise! I was just thinking about you and wondering when your surgery will take place. I’m so happy for you that it will be soon 
Hi Jo,how are u? x
Joalexa said:
Hi Denise! I was just thinking about you and wondering when your surgery will take place. I'm so happy for you that it will be soon :)
Hi! I’m checking in to see how you are! Did the Diamox work for you? Did you need the shunt (hope not)!