Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hey so I am going to the surgeon tomorrow for my consultation and this surgery is something I am more than willing to do! Had these for like 10 years and I am done with the pain. I was recommended by the local emergency room for this surgery since I have so much scarring! So how long does it take to recover? How long are you in the hospital? How bad does it hurt? Will the do the arms and legs all at one time? I have them in my arm pits and my groin area! Thanks in adavance for your answers!
So I've gotten a few surgeries done in the past and I wanted to tell you about my experiences. If you can, please please PLEASE go to someone who specializes in HS reconstruction. Do your research. I made the mistake of going to my regular hospital for these surgeries and two years later I still have very large very painful areas of my body with open flesh that never healed properly because often people do the surgery but don't know what they are doing. They will use you as an experiment and cut you open and send you along your way only for things to end up worse for you in the long run. Trust me, I understand wanting to get this over with and end the pain but please don't do this if the surgeon doesn't specialize in it. I just don't ever want anybody to go through what I have in the past.
Recently my depression/sleeplessness/anxiety/ pain and pain related drug addiction got so bad that I did a lot of research and came across a guy who specializes in HS surgeries. He has a 90% success rate so I went to see him for a consult. The surgery is very expensive and my insurance doesn't pay for it (its around 70,000 all together :/) But I need it so bad that i'm in the process of appealing my insurance and trying to make them pay for it.
The doctor will do one area at a time. So if you have it under both arm pits he'll do both arms for one surgery, then your groin a few months later for the next, then your thighs a few months later etc.
The surgery will take around 4 hours for one area and he'll take a portion of healthy skin from a different portion of your body (like your thigh or somewhere else on your arm) and he'll do a skin graph and sew it up. You'll be in the hospital for about two weeks and he told me you'll be nearly pain free as soon as you wake up from the surgery. After the two weeks in the hospital you will go home but you'll still have to take good care of the areas and rehab yourself a bit. Once that area heals after a few months you will go back into surgery and start a new area and the process will repeat until all the HS is gone. It sounds like A lot but this is the RIGHT way to do it.
In the past doctors have cut me open, packed it with gauze and then sent me home the same day. Only to leave open areas of flesh that have never healed. I hope this helps. Ask the surgeon plenty of questions including what is his success rate and how often does he do this type of thing. Ask to see pictures of past procedures and if you don't feel comfortable with his answers get out of there and keep looking for someone to do it the right way. Dont let them make you into an experiment.
As already stated, just be sure that you're sure. You really have to consider the blatant lack of knowledge /helpfulness from these physicians while they're trying to convince you to let them cut you.
I personally have a hard time being convinced by the same people that have provided me with NONE of the helpful things I've learned thus far about this disease. ....