Well this is my first post here and rather than post in all the different threads I thought I would just relate my experiences so far. I had a 3cm AN removed from my left side on Jan 17, 2006. I was expecting to be out of work for about 5 weeks but it did not quite go that smoothly. During the initial operation the surgeons got a little more than they expected… literally. My MRI showed the tumor to be about 2.5cm but once they cut me open the tumor puffed up on them. The tumor tissue was under pressure from the surrounding tissue so when they released the pressure it poofed up like a wadded up sponge. It took 3 surgeons working 12 hours to completely dissect it and get me into the ICU.
After my first hospital stay I developed a CF leak coming from my nose. The CF fluid was making its way down the eustacean tube and running down my throat and would come out of my nose as I leaned foreword. About 2 weeks after the first surgery I was back in the hospital where they put me on a lumbar drain for 48hours. The idea there was to reduce the pressure in my head to give the leak a chance to stop itself. They would drain about 20cc an hour and I was pretty much wiped out the whole time from the headaches it caused. This was successful in stopping the leak for about 4-5 days after I got out of the hospital the second time. The leak came back so they had to go back into my head for a second time to try and seal it up with a new fat plug.
The recovery from the second surgery was much easier as they did not have to deal with the tumor, it only took a couple of hours to re-do the seal work. After this third hospital stay the leak once again came back after about a week. At this point the surgeons decided to try a semi-permanent drain. I went back into the hospital for the 4th time so they could run a tube under my skin from my spine to my abdominal cavity. It goes from the center of my lower back around my right side and then goes into my abdominal cavity about 3 inches from my belly button. The idea again was to reduce the pressure in my head to try and stop the leak. They tell me the tube drains about 9cc of spinal fluid an hour. This 3rd surgery seemed to solve the problem but once again I had the leak return a few days later.
My 4th surgery and 5th hospital stay was April 13th, this time they did two things. First of all they went back into my head and re-packed it for the third time. The second thing they did was another surgeon sewed the other end of my eustechen tube shut from the inside of my nose. They also put in another spinal tap while I was out and kept it in for almost 4 days. They wanted to keep my spinal fluid pressure as low as possible to allow time for the plug and the stitches in my nose to heal.ÂÂ
So far it looks like I am done. After 5 hospital stays, 4 surgeries and 14 weeks being out of work I am happy to say I have been back to work for a month and have had no leaking since the last surgery. I still have the semi-permanent drain in and it looks like they may just leave it in. So where does that leave me now?
Well after the initial surgery I had total paralysis on the left side of my face. I have regained some movement since then and the doctors are very optimistic that I should regain most if not full function over time. I am getting some of the sensations covered in other posts like feeling my face is cramping up and so-on. I have not experienced the twitching yet but I am thinking any kind of pain, spasm, twitch, or cramp has to mean improvement so it makes me feel better.
I am dealing with daily headaches mostly in the morning when I am first getting out of bed. These may be related to the spinal tap or it may just be the healing process. I am thinking if they continue for several months I may see about getting the drain removed. I have the dry eye issues but I got some good suggestions from my optometrist.
I do not really need glasses as I have good vision but I am getting a pair of computer glasses (I have a desk job). The light prescription on the glasses will take out the small stigmatism I have and the anti reflective coating will make it so my eyes do not have to work so hard. The interesting thing is I got some frames that sit high on my face close to my eyebrows. The optometrist said that they will act kinda like little greenhouses and keep a pocket of humid air in front of my eyes so they won’t dry out so fast. The shape of the glasses will also calm down any breezes or wind that can dry out my eye. I don’t have the real ones yet but the sample frames I put on I could feel the difference almost immediately. I don’t want to opt for any surgical methods for my eye right now as I still think my chance at recovery is good. Perhaps after a year or so if I am still having issues I may consider the options.
Sorry for the long post but just thought I would relate my story.
