On 8 Feb 2016 I had my Acoustic Neuroma removed by Translabrinth approach. The surgery lasted about 8 hours, plus a long time in the recovery room. I was very fortunate to have family members there, which helped, since I don’t remember much about the time I was in the ICU. I was there for 3 days and then to a regular room, but still on the neuro floor. I was released on 13 Feb with some exercises (which sometimes seemed a little silly…but truly do help) and follow-up appointments.
On 15 Feb I was readmitted for a cerebral spinal fluid (CSF) leak. The hospital didn’t have a bed on the neuro unit, so I went to a general medicine floor. I hope I never have to do that again! I got there with a tremendous headache and I was freezing. As I lay in the bed with clothes still on covered with my down coat, I had to ask if I could have a blanket…I think it must have sounded like I asked for a million dollars. The nurse came in to start the IV and I had to suggest he put me in a gown first, so it would be easier for both of us. I must interject here, I am a RN and know this intake should have been totally different. The nurse also broke a vial of medication, which is glass on the floor, where we walk around in socks-it was never cleaned up. I had to get a lumbar puncture to check the pressures in my spinal fluid. I was told not to go to the rest room by myself, so I called my nurse at one time, he said he didn’t have time for this. I would have to get back to my bed myself. WHAT?? In the morning, I was transferred to the neuro unit where I think the angels were singing…
A wonderful staff, but a long process for me. I was in the hospital for 4 more weeks. I had to lay on my back for majority of it. If you’ve never tried to use a bedpan, it’s not as easy as they say it is! They put me in a bed and told me to lay flat and gave me pain medication. I never love the idea of medication, but this helped the pain greatly!! I had a lumbar puncture (LP) drain put in since the leak would not just seal up. This is the same type of drain they put in the first night, but this one stays in and they can take fluid off at a controlled rate. The pain I felt when it went in was beyond anything I’ve ever felt, but they were running it against a nerve, which makes the pain shoot down to the toes. Plus when they hit the area, I could feel the CSF draining and felt like my head was caving in! I told them after that if I ever needed another one in this lifetime, I will have anesthesia. NEVER AGAIN!!
The drain wasn’t helping the leak stop, so I went back to surgery on 27 Feb. More fat was taken from my abdomen to fill the area, but at least they used the same incision as the first time. They put another drain in, while I was still under anesthesia. I was told to go ahead and get up to go to the bathroom after a day. I was leaking again. Flat again. It didn’t work.
I went back for surgery again on 5 Mar, more shaving of my hair, more fat taken-new incision, and a plate put in. This worked. I was home by 13 Mar. It was a long stay, but I’m that one. We always run into that one patient that has the problems. I was that patient.
I do have some suggestions for anyone who may need them:
-Have support at the hospital with you! It helps to have a second pair of ears when the doctors are there and someone to help you when the staff is busy
-Set your house up before hand to have walkways clear and free of things on the floor. I made sure I had a straight shot to the bathroom.
-Have some easy snack food or have someone bring you some for when you get home. You’re body will be tired and you’re not likely to want to cook.
-I made sure I had someone come by and check on me and phone numbers available if I needed them (I live alone).
-Have someone set up to come take your trash out or help care for animals. Bending over sucks at first and lifting is not something you want to do right away.
-Don’t be afraid to ask questions! At times, doctors are one track with their thinking, it happens to all of us. Write your questions down, and ask them!! I had a friend who “didn’t want to take away from the other patients.” They are here to help us and sometimes need to be reminded we aren’t doctors!
-I had numerous residents, PA’s, NP’s, and fellows coming in and checking on me. It hurt and by the third week, I said enough! I didn’t allow anyone but the surgeons and their PA to touch me. I just couldn’t take it anymore. I realize my experience was kind of exptreme, but you have to speak up for yourself.
-Be nice to the nursing staff!! They will make your experience awesome, if you let them. They are used to dealing with us patients on a daily basis and the doctors. You can ask them questions and they will generally always find out the answer or pass it on to whoever needs to know what is going on.
-Basically…use your resources!!!
The after-affects:
My facial nerve was saved.
I had already list much of my balance, so it hasn't been horrible. Coming off the pain meds was horrible-but I was also on them for longer than most. I have lost some of my taste. I lost a LOT of hair- three months after surgery (they say it's due to my being so sick and all the anesthesia). I'm sure I'll think of more, but I hope this helps someone!!
