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,...
Whew..thought September would never get here! I know it's not September just yet, but my surgeon appointment at UNC is September 10th and I am just on pins and needles!
I'm excited, sort of, but also kinda leery. I'm so hoping that this surgeon can have some sort of common sense, unlike the last one I saw. :]
I'm wondering from those of us who have had surgery, what are good things to make sure I ask? I know one of the first things I WILL be asking is "How many different ways are there to do this?" and of course for each "How long the healing times are for each different way?" but I'm kinda drawing a blank for anything else to ask about. I'd hate to waste what might turn out to be an actually good visit with someone who's got at least TWO brain cells to clack together...lol
I just want to make sure I make the most out of the visit. The last time I let the doc come in and fly through and talk like an auctioneer. He was willing to do surgery, but even after I explained to him that his idea was flawed in that the skin he was going to attach to good skin (after only taking out what HE thought was affected skin) skin already affected by HS. The center of my armpits where the crease runs is the worst of my armpit areas. HS runs the thickest and most rampant right there in the crease and he wanted to keep that area uncut to give me better range of motion and less pain with bending my armpit after surgery, but I did try to tell him that that approach would not work as HS had already affected me there. So he shot himself in the foot on that.
Anyone with any pointers or surgery story they would like to share? I'm excited, but wary and it's kinda scary because it is such a large area of skin to be dealing with. I do know that the plastic surgeon and their staff are being relocated to the Laser Center at UNC so I am hoping maybe that will help in what choices of types of surgery I can have.
Ok, I'm running on..Much love to you all!
I'm excited, sort of, but also kinda leery. I'm so hoping that this surgeon can have some sort of common sense, unlike the last one I saw. :]
I'm wondering from those of us who have had surgery, what are good things to make sure I ask? I know one of the first things I WILL be asking is "How many different ways are there to do this?" and of course for each "How long the healing times are for each different way?" but I'm kinda drawing a blank for anything else to ask about. I'd hate to waste what might turn out to be an actually good visit with someone who's got at least TWO brain cells to clack together...lol
I just want to make sure I make the most out of the visit. The last time I let the doc come in and fly through and talk like an auctioneer. He was willing to do surgery, but even after I explained to him that his idea was flawed in that the skin he was going to attach to good skin (after only taking out what HE thought was affected skin) skin already affected by HS. The center of my armpits where the crease runs is the worst of my armpit areas. HS runs the thickest and most rampant right there in the crease and he wanted to keep that area uncut to give me better range of motion and less pain with bending my armpit after surgery, but I did try to tell him that that approach would not work as HS had already affected me there. So he shot himself in the foot on that.
Anyone with any pointers or surgery story they would like to share? I'm excited, but wary and it's kinda scary because it is such a large area of skin to be dealing with. I do know that the plastic surgeon and their staff are being relocated to the Laser Center at UNC so I am hoping maybe that will help in what choices of types of surgery I can have.
Ok, I'm running on..Much love to you all!
You must've seen in the literature or a video about the doc who injects a dark dye into the tunnels during surgery to make sure he "got it all". It sounds more than logical to do this; they don't have x-ray vision after all! You might ask your surgeon to consult a plastic surgeon about it.
Especially in your case, the surgeon must know about your many responsibilities and all the care-taking that falls to you. That might make a difference whether the doc decides to put in a post-surgical drain or not, or to use a different type of suturing technique, etc..
Eons ago I had a gynie who did hysties one way, the "cosmetic" way. I was then sent home to 2 babies in diapers and a husband who took not a single day off of work. Internal stitches tore... It took over 3 months to even begin to heal. I wish healing for you, and comfort!
Just a couple of thoughts, but I hope they help in some way.
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When I went in for my consult I let her look and give me the options- there aren't many out there if the disease is far gone. We opted to do the major graft surgery in two separate surgeries. I asked specifically about what that would entail, what the recovery time was like, how much pain I could experience and the likelihood of graft failure (my biggest concern, even now three weeks post-op).
I have to say, even with my concerns about the graft, I am so happy I did the major graft surgery because I know that my likelihood of reoccurrence in that area is pretty low (the surgery is less successful in the groin, breast and butt areas).
I would definitely be asking about reoccurrence rates and how many surgeries he/she has done specifically related to this disease. Less than 25/30 I would find someone else. To me that would indicate that he hasn't seen this enough to be decent at knowing what to look for to get rid of all the affected skin. Also, if he doesn't have any idea of his reoccurrence rate that would worry me BIG time too. He should know how successful his surgeries have been (for example my surgeon has done 60 surgeries for this disease on the underarms alone and has only seen the disease reoccur one time in the last 5 years).
Good luck.
I'll be sending you Good Vibes ;-)
And while I understand what lyssaroo is saying here I don't really agree with it. You should talk with the surgeon and get his/her take on how to handle- that person should be familiar enough with the disease to know how likely it is that you will have to come back if you do a simple exicision vs a full removal of sweat glands and hair bearing skin and a graft. If you want to "manage" your HS that's one thing but if you want complete relief of your symptoms you might have to thinking about getting a more complicated surgery.
FWIW, I had the major graft surgery and I had my follow up yesterday. I had very little pain in the hospital, I've had very little (to no pain) at home. In two weeks I am returning to work and in 6 weeks I'll be doing the other side. I am pretty sure this is my "cure" and I'll be doing all I can to prevent the spread of this horrible disease to other areas of my body (groin, butt, breasts) by using a dermatologist who is familiar with this disease.
I don't want to just "manage" this disease in areas where it was completely forgone (under my arms)- I shouldn't have to be in pain there or any place else on my body. You have to think about what you want in the end.
The doctor I am seeing is supposedly familiar with HS. From what I understand, they even have a nurse on staff that works with them that has HS as well. And I also have a nurse friend that is willing to try to look out for me if I decide to have surgery.
I'm definitely gonna make sure I am comfortable with whatever surgery (if any) I do decide to get. I've already had 5 major operations already, and I don't take an issue like surgery lightly.
I am looking at doing my left armpit first..it is the one with the most massive area of being affected by HS.
My armpits have been described by doctors as a war zone, so that ought to sorta shed a little light on how bad it is. I have had doctors and nurses take double takes when I raise my arms..and I am talking ER doctors and nurses in trauma centers. sigh..ah well.
I did hear something about dye..from one of these posts I do believe but it will definitely something I will be sure to bring up. My biggest worry is what the pain will be like afterward. That is the biggest scariest thing for me really is how bad will it be and how long will I HAVE to be down. My job doing require much, answering a phone, typing on a computer sometimes, putting a paper in a file cabinet. And then I also have to consider how long it might be before I can drive. That would suck if I have to be driven every where.lol
And I will definitely be asking about rates of recurrence.
Thanks again everyone for your input! I am still nervous but can not wait for my appointment. I am hoping for a good visit, but not putting my hopes up TOO high.