I've been following these posts for quite some time now and have been looking forward to the time when I could chime in and perhaps contribute. This certainly has been a great help to me and my ordeal. At this time I am 6 months post op. I can say now that I'm definitely on the road to recovery but it has not been easy. After reading about some of the other ANers, I guess one could say, I’ve had a rough time.
My story is that I discovered I had an AN in 2007, watched and waited for 6 months, found that it was growing and had Cyberknife radiation treatment in 2008. Things were fine for one year. The next year the doctor found that it had grown. I was scheduled for and had translab surgical removal on Dec 28, 2010. Everything appeared to go great and three days later I was home from the hospital. Unfortunately, I developed a CSF leak along with the heavy-head and headaches that come with that. On Jan 13 I went to see my doctor to have my stitches removed, and she suggested that they do a lumbar drain to remove some of the fluid and relieve the headaches and prepare for CSF leak surgery. The lumbar drain procedure was painful for me. Unfortunately it required me to be on my back (for the most part) for 5 days and I ended up with a massive pulmonary embolism (blood clot in the lungs). I stayed in the hospital 12 days for that. I came home and had to be on blood thinners. The worst part of this was the “Lovenox†injections that I had to give myself in the stomach until I was therapeutic and could progress to Coumadin. I was told I would probably be off of the Lovenox injections in about 5 days - it took 20 long days. In addition to that, I somehow developed severe lower-back/upper-thigh/sciatic nerve-type pains. I was miserable.
After I was cleared by the heart and pulmonary doctors, I was again scheduled to have surgery to fix the CSF leak. This was to happen on March 15. Of course I wasn't looking forward to this but I had to get it over with. Well, 5 days before this scheduled surgery, I contracted meningitis. Thank God for my nervous family members because never in my wildest dreams did I think I this would happen to me; I was about to ignore the symptoms. They rushed me to emergency at a local hospital, which pumped me full of steroids and antibiotics and shipped me to my ENT and neurosurgeon doctors. I then had a lumbar puncture which was another nightmare for me. This time I stayed in the hospital for 7 days. I came home with a peripherally inserted central catheter (PICC line) in my arm to continue the antibiotics for another two weeks.
Meanwhile I still had this CSF leak and my next scheduled appointment for that surgery was April 12. However, on March 26 I got severe pains in my chest and I was terrified. Normally I'm not one who rushes to the ER but with all that had gone wrong I didn't want to take any chances. The ER doctor advised me it might be gall bladder problems. Even with all of the pain I was in, this seemed trivial compared to everything else and would have to be put on the back burner. I finally had my CSF leak surgery on April 12 and all appeared to go well…for about two weeks…when the leak started again. On May 26 I went in for outpatient surgery to have that repaired. So far, there have been no more problems with that. On June 2 I had the gall bladder removal surgery and am recovering well from that.
So, here I am. I can’t believe I’m still here to tell my story. I also ended up with the typical AN problems such as facial paralysis, eye issues, fatigue, and balance issues. But, I feel great considering what I went through. I kept reading the posts here where everyone said things would get better. That kept me going even though it was hard for me to believe at the time. Thank you all for being there for me even though you didn’t know you were. I’m now hoping to be able to do the same for someone else.
