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,...

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chandrez 05/14/2013

I was diagnosed with HS 3 years ago and my under arms were destroyed, I lost all mobility in my arms above my elbow, i could no longer do things as simple as wash my hair or put on a jacket. Also my neck was getting bad, couldn't turn my head that much. Well one day my dermetologist and my main doctor had me admitted to the emergency room. Needless to say they kept me, i was in the hospital for 5 weeks. They did a new process on my arms, they removed the sweat glands and filled it with this new substance called integra which is made of shark skin, its a new process that was developed at Duke University not to long ago. THey then did a skin grasp and replaced the skin on top of my wounds with that, I then had to keep suction machines under my arms for about 3 weeks to make sure the blood vessels took the skin and the integra. Well it's been 2 and a half years my arms are perfect i can strectch do push ups, lifts weights it feels as if nothing ever happned. I am not sure if that information will help. And i was good for about 2 years but i did start having outbreaks in my thigh area and things. But For those of you saying that you suffer under your arms, Let me say that I at least had that permanently fixed.

deleted_user 05/14/2013

Interesting!

deleted_user 05/14/2013

Awesome! I had a similar thing done with pig bladder stem cells! I have feeling in my arm and both it and my groin look beautiful! Now if all these drs out there treating these people would get with the program and do these new treatments maybe others would find this relief! Kinda makes me nuts! I'm in complete remission for now and I'm doing everything diet wise and supplement wise I can to keep it a bay with out the drugs! Cross your fingers for me because my dr says it will come back but someplace else and the only area I have left hs normally affects is the breasts .... Luckily mine are small and perky so no skin to skin contact he says will help keep it from attacking there! Good luck to you and thanks for sharing!

deleted_user 05/15/2013

Chandrez, I want to say thank you for sharing that, because that is one of the things that I have been going back and forth with myself about the surgery. Will I get this and have another break out while I am healing. You stated you are not sure if the information help, YES it did. Thank you!!!

deleted_user 05/15/2013

YES THANK YOU FOR SHARING THIS

HSchich 05/15/2013

chandrez,

That's great your armpits are HS free...that gives me hope that mine won't return. Thanks and I wish you the best.

deleted_user 05/16/2013

wow!! thank you for sharing this!! that is awesome that u have no flare ups anymore! god bless you!

chandrez 05/16/2013

Yes, since i have no sweat glands or nerves under my arms any more i dont have any outbreaks there, NOW i have had a small bump or two occur outside of the area around my arm, but it never really was anything more than like what looked to be hair bump that went away with nothing weird happening or pain. But yes after surgery there is no more hs under my arms, it can't come back there. But I say have the surgery, For me i will say it really sucked because aside from working full time, I am a pretty popular DJ and I work a lot so trying to do this and have that condition was the worse thing ever in life for me. I remember those days, taking an hour just to be able to get out the bed, crying at night because of the pain in my arms, having to replace all of my shirts because of all the blood and fluids in my sleeves, ohhh man, the recovery time did take a whiel I will say again. I had machines under my arms for about 2 weeks after I left the hospital but man was it worth it, being able to reach my arms in the air and try to touch the sky and feeling nothing but joy.

chandrez 05/16/2013

OH and if any of you want to see pics I will gladly show you you via email or whatever. I'm new to the site so I'm not all familiar with the communicating methods on here, but anything I can do to help. My fight isn't over, i'm still in the battle with you all I just have my armpits healed and the back of my nec

deleted_user 05/17/2013

This sounds unreal. I read a lot on HS forums that the doctors don't know anything about HS as well as some people having horrible surgeries from surgeons not really understanding HS. But know reading about surgeons using new process involving shark skin and pig bladder WOW!!!

How did you even find a dermatologist or doctors that specializes in HS? I've been searching for any Doctors in Ontario or even Canada that could help :(

deleted_user 05/17/2013

I was sent to my doctors by doctors I work with. It seems to be very very hard to find a good HS doctor. Start by calling cosmetic surgeons then general sergery drs. My derm is awesome he wrote a little book on hs but he is the kind of dr that just wants to drug drug drug. I'm kinda crunchy so I don't really care for that but he's a nice understanding guy who works with the sergery dr my old boss ( a cosmetic dr) sent me to. So really at least I have some drs with my wishes at the core of their treatment. Good luck y'all and if I can help at all I'm here!

chandrez 05/17/2013

When I went to my doctor I didnt know I had HS and neither did He, however after about 2 visits and he couldn't figure out on his own He did some research and he found out what I had and he then started trying various things to treat it that. He sent me to a few plastic surgeons too actually and some of them told me right out they no longer treated H.S. As far as my dermatologist she also knew about it, but I dont know if this matters, but I did go to a African American Dermatologist and she told me that it is more common in african americans so she has seen it before and worked with other patients.

deleted_user 05/18/2013

Chandrez, I did not know that it is in more African American. learn something new everyday.

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