This forum has been a godsend for me since I developed my AF back in December 2015. Since I am now on the road to recovery I wanted to post my story in order to give back to this community. I had no idea what an AF was until I was diagnosed and I am sure I did it harm prior to the diagnosis.
Anyway, this is my story.....
In mid-December 2015 I was awoken one night by some bum pain. It got pretty severe (Don't think I have to go into detail here as we all know the pain). I thought it must be hemorrhoids but had never had any before so it was a guess. Treated with prep H and pain reduced/went away. This lasted for about a week when the pain came roaring back....again at night. Luckily I was on holiday leave from work for 2+ weeks so I just took it easy and tried to let everything settle down (still without knowing really what it was). It mostly worked, dealt with some pain but manageable. Then I went back to work and couldn't even sit at my desk. This spurred me to see my GP which I did the following day. He diagnosed the AF right away and prescribed Nitro and appts with a GI and CRS. Got the nitro ($100 a tube...yikes!) and it seemed to work a little but in reality not very much. Saw the CRS and he ended up prescribing Dilt which worked a little better than Nitro but not much. I went 2 more months (now we are up to Feb 2016) alternating between Nitro and Dilt with limited to no success. Had the typical days where I seemed to be getting better then relapsed (it's certainly a roller coaster ride). Finally decided to do BOTOX (CRS wouldn't go straight to LIS -more on this in a minute).
BOTOX first day seemed to be working but in reality it was just the lidocaine. BOTOX did nothing for me. At this point I was pretty disheartened and my CRS was not helping at all...plus his manner was to offer little to no information and get out of the office as quickly as possible. I am lucky enough to have a friend that is an Ortho Surgeon. I talked to him about it mainly because I wanted to get an Rx for valium (I was WAY stressed out and the spasms were getting worse by the day). He wrote the Rx and it helped a lot with my mental state but it's not something to take long term nor does it "heal" the AF. He was kind enough to make some calls and found a very good CRS for me. Highly recommended by the head of surgery and his wife (an anesthesiologist....they really know who is good!). Went to see her about 3 days later and right away I knew this was the right person. She examined me and was able to fully see the AF (none of the others could fully see it) without sticking something up there and said "we're gonna fix this for you". We talked about what had transpired and she said "BOTOX is really experimental. We're not even sure if its just a placebo effect or really works yet." Anyway, I booked my surgery for 1 week later which was 23 March 2015.
I had the normal jitters surgery day but did not experience the long term worry most of you did as I didn't care (and still don't) about the possibility of incontinence. I just wanted my life back. I am here to tell you that surgery was FANTASTIC. I was in pretty decent amount of pain the day of surgery and the next day but it subsided pretty quickly and here I am almost 4 weeks out and I can do almost everything I used to. I even had a slice of pizza the other day!!
this is leaving tons of info out so please feel free to ask any questions. I will continue to check back in here to answer as this forum helped me so much with my mental state all throughout this horrible ordeal.
I guess the moral to this story is to not be afraid of getting LIS (I waiting 3 months but wish I hadn't) and to do your research and get a good CRS.
I truly hope you all find relief.
NOTE: My surgeon friend is convince my first CRS was being paid to do BOTOX research and is adamant about me reporting his behavior. Apparently they are paid more for research than to, you know, actually treat people and relieve their symptoms. It fits in that my AF was probably not as bad as some others and he could justify the research with "it's a conservative approach". I'm not bringing this up to scare anyone or as a conspiracy theory...just food for thought.