Jane
I have had Hidradenitis Suppervativia for over 20 years. Had very successful radical underarm surgery with no recurrence for the past 10 years since surgery. There is a good website for information regarding this disease (don't have the address handy) But, you can find it by searching for Hidradenitis and choosing the H.I.D.E website. My surgery 10 years ago cost over $3000.00 for each underarm. Who knows how much it is now. Also, should you decide to have surgery, be very careful about which surgeon you choose. He/she must be well educated in the disease (most plastic surgeons aren't)as well as an excellent reconstructive surgeon. It took me 10 years to find my "master" surgeon, but well worth the wait as I have heard so many horror stories from others in the H.I.D.E. group who had surgery and the disease returned. Mine, I believe, has not returned in the underarms due to being patient and not settling for a general plastic surgeon. I qualified for disability. It is on the SS list of qualified diseases. However, I believe the fact that I had other disabilities as well factored into it. Applying is a long beauracratic process, but worth trying as I know how painful and dibilitating this disease is. If a physician recommends prescribing Accutane, please decline to take it! It causes bad side effects. In my case, my cholesterol skyrocketed to over 600 and I developed hypertension. Blood tests prior to taking the medication were normal. Then, after the fact,I read the pamphlet inside the Accutane box and discovered these warnings! Pain can make one desparate! As a result, I have had to have two heart valves replaced. Besides, Accutane was (for me) not even helpful in relieving the symptons or the pain. I still have outbreaks of HS in the lower extremities (no surgery there)and I find, of all things, Bag Balm ointment to be soothing. It is a very old remedy for soothing cows utters! I still find after 20 years, few doctors can identify the disease (give it it's proper name). Most believe all I have are sebacceous cysts! Those who are "acquainted" with HS have no idea (mostly no interest)how to treat it. You just have to be your own advocate! Good luck!