CSF fluid leak twice

[MaLuisa63]

Hi I had a chiari decompression surgery done April 28 2014 and three months after that I went to see my NS for a follow up and told him I was feeling great right after the major surgery... But when I started my therapy for recovery I started noticing I was going downhills.  He ordered an MRI and surely I had a leak ... He told me it was a suture that had gotten lose so he had do another surgery to fix the patch tightly.... I did not think twice and went ahead and had the surgery. I never regained my feeling great moment after the second surgery.... So after three more months I went back to see him and commented on the fact that every time I laid down I was in terrible unbearable pain... He just went along to say there where many types of headaches and it was easy to not know the difference between chiari and an allergy headache or stress headache... And I was thinking " no one should ever have to go through Chiari headaches .. Much less confuuuuuse the Chairi headache with stress....much  Less allergy headache!!!!! So I returned home and started feeling worse and went to see a NS that is from Cuba and does know quite a bit about Chiari and its symptoms. He told me that my CSF had more pressure than what my patch could take, and if I would have 30 surgeries to repair the patch it would rupture 31 times. So he suggested a shunt to alleviated my CSF pressure.... So I called my NS in Tucson and he said he would not see me anymore if I would to decided to have surgery with this other NS and he thought I did not need a shunt .... No more explanations..... I hang the phone and started trembling so bad that I had a severe panic attack! Who should I listen to. Who is right who's not right.... Omg!,,,, I already have a shunt for a syrinxs 27 yrs ago but the shunt did not drain the syrinxs and so after so many years finally I had to do the decompression surgery because I started having to many symptoms.... Now what? Shunt or no shunt... Another patch repair or not! I think I am going crazy ! So much misinformation! I feel like a Guinea Pig!!!!!!

[Ball123]

I agree. Plus that the first NS has had two opportunities already, do you really trust him a third time? But get a third opinion from a known expert, that is what you need.

[AKC_75]

Hi and welcome to the Migraines & Headaches Community.

I would get a 3rd opinion if I were you. But in the meantime while you are waiting...you will probably get better answers if you visit the Chiari Community. Good luck!