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,...
Well I have finally made up my mind to go ahead and get surgery just as soon as my medical kicks back in. My doctor had me set up with a visit to go see a surgeon, but my medical died out, so I'm having to wait to get re approved again.
I'd like to hear from folks who have had either type, as to what they felt the pros and cons were for their particular type. I'm leaning heavily towards the wound vac method, as I am going to be having them start at the armpits, preferably one side at a time (I know some surgeons just wanna go ahead and knock out "two birds with one stone", but that's a little much for me anyways).
Skin grafting, especially for the armpit areas scares me a bit, not to mention the extra pain from the donor sites, and although I'm ready to go, I'm not looking forward to more cutting on me than absolutely necessary.
Please let me know your experiences, what you felt the pros and cons were of your type of healing method, and if you had to do it again, would you chose the same method or would you be more inclined to go with the other?
Much love to you all!
I'd like to hear from folks who have had either type, as to what they felt the pros and cons were for their particular type. I'm leaning heavily towards the wound vac method, as I am going to be having them start at the armpits, preferably one side at a time (I know some surgeons just wanna go ahead and knock out "two birds with one stone", but that's a little much for me anyways).
Skin grafting, especially for the armpit areas scares me a bit, not to mention the extra pain from the donor sites, and although I'm ready to go, I'm not looking forward to more cutting on me than absolutely necessary.
Please let me know your experiences, what you felt the pros and cons were of your type of healing method, and if you had to do it again, would you chose the same method or would you be more inclined to go with the other?
Much love to you all!
In January I had a large excavation on my left butt cheek. The wound out of the OR was 17.5x15.25x3.5 centimeters, that is. I had the wound vac on for 2 months. I discontinued the vac when I did because that is when my insurance decided they were only going to pay half the bill for the machine. With my ins. the vac cost me $5300 for 2 months. When it came off my wound was over 80% closed. The scar from the vac is smooth and very nice despite it's size.
If you go for the vac, I have a couple of suggestions. First, let them do both sides at once, the recovery with the vac is the easiest, least painful post op experience I have had, ever. Second, you will need to make sure the surgeon places something like adaptec between your wound and the vac dressing. If he forgets this vital step, the vac will cause the dressing to imbed itself in the wound, making dressing changes sheer agony. Found this out the hard way.
I found that the only pain I felt was when the dressings were changed; but mostly because I was 3 weeks post-op before my wound care nurse thought about the adaptec. They will have a nurse change the dressings 3 times per week.
If I have to have another large excavation type procedure again, I would do the wound vac, without another thought. I would not choose to repeat the skin graft procedure. I think it ranks right up there with medieval torture. If you have any other questions, please feel free to ask. Good luck!
What the hell is wrong with this country and the insurance BUSINESS. My God $5300 for two months of wound vac. I am currently without insurance. Am just so disgusted with our country right now. Everything revolves around the dollar, OR lack there of.
I want to do both at once, but I have to special needs children at home and I have to be somewhat functional, or as close to it as I can possibly maintain while doing the wound vac (also another reason I don't want to do skin grafting). I wouldn't say my husband is helpless, or that between him, his mom and dad, that they couldn't manage...but I take care of all the paperwork for the kids for school and dr. appts, along with the appts themselves and anything pertaining to the kids at school. It has just been my preference to take care of all this stuff, as I am already hyper vigiliant from my PTSD, so if I don't know every little aspect of each doctor visit or teacher meeting I get quite anxious as I want to make sure my kids get the best treatment/help they possibly can, and it's hard to feel that way if I'm not personally involved.
When I talk to the surgeon I will make sure to mention the adaptec. I sure as hell don't want anymore grief than I absolutely have to endure, I think we've all endured quite enough with this disease.
Much love to you both.
Anyone else out there have anything to share??
I swear I am on pins and needles, like a kid with only two weeks til Christmas.... I can't wait to see my insurance cards in the mail, cause then it's on!
This last round of being sick with a flare has really wiped me out. Last time I was this bad was when I had one the size of half a softball in my left armpit. I guess the lack of size was made up by the sheer numbers of them this go round.I'm just so physically and mentally and emotionally drained by this go round of flares that I am truly amazed I am still functioning without snapping the heads off of friends and family alike. I just keep reminding myself when they say " I'm sorry" that they truly are sorry for me having to deal with HS..but I always tell them "Don't say you're sorry, it's not your fault, you didn't give me this." And I guess it irritates me a little almost like I am being pitied and I don't want pity, just a little understanding...lol