My Journey – The discovery

This blog will detail my progress from surgery of a CSF Leak that was caused by surgical trauma. After weeks of searching the Internet I have not found anyone who has written their experiences from their CSF surgery and their thoughts about it so here I go

I had an orbital decompression surgery on my right eye. I had too much swelling for the eye socket to hold all of my eye muscles so my neuro opthmologist preformed a decompression surgery that would open up my orbital socket in to the ethmoid sinus.

I was told that the surgery would possibly cause more double vision but would save my sight because everything in there was pushing on my optic nerve.

The surgery went great is what I was told. There was little actual eye pain but I woke up from surgery with a massive headache on the top of my head and everything had no real taste. I mentioned This to my Dr the next morning when he came in to the hospital room to evaluate me and discharge me. He said hum unusual but headache is acceptable after major surgery take my pain Meds and I’ll see you in one week.

At the 1 week post op appointment I told the doc the headache was still there and that I can eat anything, even things I absolutely hate and can not taste anything. He said thats weird, and that he did don’t know why that would happen from surgery. He assigned me some antibiotics (because I requested them) thinking I must have a sinus infection.

The antibiotics seems to help little bit however with in 2 days of being off them them I felt like I needed more or a different kind ( maybe a placebo effect) No worries I had been down this road before with sinus infections, sometimes you need a different kind to get rid of the infection.

The neuro opth was out of his office when I called, so I scheduled an appointment with my ENT and waited for my appointment.

When he saw me, I explained about the headaches and the new foul smell that was popping up when I inhaled he gave me a quick look over and issued an antibiotic and a steroid nasal spray and said to call him if this does not help. I took the course of Meds .

Mind you I had the headache this whole time , after the blood clot dislodged it self from the surgery I noticed that at night I would have these clear watery drops come out of my nose and this foul smell when inhaling I thought is smelled like rotting flesh.. At this point I thought “ok I still have a sinus infection ” and I am starting to just deal with it. My ENT thinks the same as I do nothing to worry about.

I finished the 3rd course of antibiotics and waited it out over the weekend. That next week I made 5 phone calls to my surgeon and never received a call back from him or his office. That friday night after coming home from dinner, I experienced a really bad headache, dizzy and nausea. I took my pain Meds and went to sleep. On Saturday morning I found the surgeons cell number in my stack of medical stuff and called him. I explained about trying to reach him all week and what happened the night before and I was very concerned. This was 45 days post surgery.

He finally listened, he said he would schedule a CT scan to see what is happening. I asked if he could send it that day. I called the imaging center and found a place that was opened that day and they said as long as they receive the order for the CT scan they could get me in, in 2 hours. The facility’s hat could do the scan was 1.5 hours from us. I grabed the cell phone told the hubby to change and we were out the door.

It took until Wednesday afternoon to get the results back because the radiologist thought she saw a breach of the brain into the sinus but wan not certain. I was scheduled for and MRI to confirm her findings. I called the ENT and asked him to look at the scan and he called my neuro opth. MRI was needed ASAP. We had the MRI one week after the CT scan again it took until late Wednesday afternoon to get the report. The report stated nothing about the ethmoid roof fracture or the brain into the sinuses. I called my ENT to get the results since he is the specialist on the sinus. He disagreed with the report pulled up the MRI scans and saw the breach of the brain into the sinuses as well as a sinus infection in the frontal sinus and called the neuro opth that did the orbital decompression.

The ENT requested to see me so he could culture my nose to see if there was any bacteria growing. They called me on Thursday night and said that I has e coli in my sinus and that this could be very serious if I hits the brain. So the next morning I was scheduled to go to the hospital and have a PICC line put in and that a home health nurse would becoming to our home to show me how to self administer the Meds thought the PICC line. Ok now I’m scared.

10 days of very heavy antibiotics cruising through my veins. That next Friday I was scheduled for a neurosurgeon appointment to explain how to fix this whole in my head.

The neurosurgeon I went to was funny as hell. He put me at ease stating that why would he put a whole in the top of my head the size of a large fist to fix a small whole the size of a my pinky. I agreed why would he. He said that he would find me the best ENT surgeon to do the repair through my nose. OK now that does not sound so bad, I can handle that.

3 weeks later after his best ENT refuses to see me. I get rerouted to a different hospital and a different ENT surgeon who states that this can not be done through the nose and I have to have an open Craniotomy to fix this leak.

Are you kidding me?????? Holy cow.

That is where we are right now we are scheduling all of the appointments that go along with scheduling a frontal craniotomy. I will be up dating this blog as we venture down this path of the unknown. Fell free to leave messages and I will respond to any of your questions as soon as I can. And thanks for reading this blog.

Eye after orbital decompression