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, culminating in drainage, often leaving open wounds that will not heal.

0 Online
0 Online

the wound vac...

i had a love/ hate relationship with the wound vac. my wound was closed so my surgeon put it on as a extra step in the healing.. it kept me up at night beeping saying the canister was full and it was empty. I had my 1 week follow up today and he removed it. i am glad to see it gone.

Replies

deleted_user
deleted_user

It's not the most comfortable device to be hooked up to, but I would highly recommend it. I had it attached to my groin/ inner thigh area for 4 weeks. If it wasn't for the vac I would have probably suffered secondary infections and an extended healing time. The wound healed pretty fast, but the first dressing changes were excruciating. That was until nurse started to put paraffin gauze into the wound before inserting the foam. This turned out be a real lifesaver for painful dressing changes.

By the second week I was removing the vac myself, and the nurse merely had to sterilize the area and apply the new dressing. My machine was relatively quiet and trouble free. By week three I learned how to patch up areas of dressing where a leak would occur and make the device noisy.

I was told that not all patients take well to wound vac therapy. Skin grafts are not always an option, and the vac gets you back to work fairly quickly.
hazelwood117
hazelwood117

hi brandih1982! was your wound closed or almost? Was it still draining?
deleted_user
deleted_user

the 10 cm incision was closed with stitches and a j p drain was inserted about 1 inch below the wound.
deleted_user
deleted_user

It's silly to say but I actually miss my wound V.A.C! I had surgery on both of my under arms and had a wound V.A.C on for a little over a month. I got used to the sounds at night and always carrying it around.. MIND you! I DO NOT miss the changing! :)
deleted_user
deleted_user

Constance & DaDodger--

How long a go did you have your surgeries?

How was the overall process & healing?

And if you dont mind me asking - - Did it work? Do you have any new growth in the surgery area or around it?

Sorry so many questions.. Getting surgery on my armpit or groin just sounds awful.. But you have made it through at least :)
ShannonA
ShannonA

I'm curious as well. I'm going to see a plastic surgeon on the 30th, and depending upon what he tells me, I may or may not go through with surgery. I've already been to see one and he was not someone I would send anyone to. One of those "I know it all and you know nothing" talks a hundred miles and hour and makes you feel like he's checking your tire pressure and not your body kinda fellows.
I would like my surgeon to do one spot at a time so I can stay as functional as possible, and I am totally interested in the wound vac thing, as it seems like it works better than slice, dice and stitch ya back together type surgery.
I'm looking at having my armpits and the inside of my left thigh done....it WILL be awhile before I have the nerve to do my groin or the inside of my buttocks done...lol
deleted_user
deleted_user

I would highly recommend surgery. My surgery was also done with a plastic surgeon on 13 Feb 2012. He was recommended by my dermatologist, as he has a lot of experience with HS surgery. I think that is the most important part, as the surgeon should have practical experience with getting rid of every bit of tunnelling.

My surgeon explained to me that he was quite vigilant with searching for tunnels, as he knows from experience that it causes the procedure to fail with HS patients. The procedure took three hours and he used contrast dye to search for hidden tunnels. He even explained to me afterwards that there were areas that looked pretty healthy, but showed tunneling upon closer inspection.

I only had to stay in hospital overnight, and walked out unassisted the next day. The worst part for me was the stitches coming loose after about three days. I just was not prepared to see the gaping, bloody wounds in my groin and thighs. It was very awkward to clean it, because you have to touch the raw flesh. So that's when I went back to the surgeon and the wound vac started. My wounds were about 11x6cm.

I still have to go back to have my butt area done, as the surgeon did not want to do it all at once. My groin area is pretty closed up now, and I feel wonderful. My life has returned to normal with no pain and smelly pus draining every day. It's too early to say that it will not return, but my faith keeps me strong. If you still have doubt, I would say 'go for it', it's worth it.
deleted_user
deleted_user

I had surgery done on both of my underarms Feb 24th 2011 and it was just a day surgery. I was in pre-op/surgery/recovery for a total of 7 hours but the operation only took 2. I had just a general surgeon who had dealt with this before perform it and she had to remove all the sweat glands and a lot of the scar tissue.
Didn't need a skin graph and both incisions are about 7 inches from front to back, closed up with stitches.
The wound V.A.C wasn't terrible to have but the first changing was rough. I have very sensitive skin and they had to put a lot of tape on me to keep the foam pads in place and so when the nurse had to pull them off, I was not happy. I STRONGLY recommend taking pain medication before they go over to change it. I learned a lesson from that first changing lol
Over all I had my V.A.C for a little over a month, kept the stitches in for a bit longer and then got those removed.
Since then I haven't had ANY regrowth!! I did get a bump ONCE but I think that was just irritation on the scar. Currently I am watching them since I'm getting "black heads" in the area and don't know if that's something to worry about or not but I would STRONGLY recommend the surgery to anyone!
I have full function back in my arms, still numb in the area but they say that's normal.. :P

I will upload some pictures I took if you're curious to see! :)

Sorry for the long rant! :)
deleted_user
deleted_user

Forgot to mention that when my stitches were taken out, the wounds were still open a little. They just needed to be kept clean and as LITTLE movement as possible to avoid opening them more. One side was worse than the other and did require a little bit of packing with gauze but it wasn't a terrible task.
ShannonA
ShannonA

Many thanks to you both for the extra info. When I go to see this plastic surgeon on the 30th I will have extra stuff to talk to him about (contrast and close inspection to make sure all sinus tracts/tunneling is found and removed). My insurance won't let me try Humira or Remicade, since I don't have something generally approved from the use of it such as Rheumatoid Arthritis. So surgery is going to have to be the way for me to go, unless some sort of miracle pops up before then.
Other than that the only question I have is...What kind of pain meds were you on after surgery. I'm asking cause like I said, I am wanting to stay as functional as possible, and I can handle 10mg percocets pretty well without the "head fuzzies" and sluggishness that normally is associated with narcotics. (actually I have been told I have an "allergic" reaction to narcotics since I don't get the drowsies but instead want to get up and do..but I think that is more like "oh I'm not dying..and feel ok to do something..so let's use it while I can"..sorta thing). But I have had 2 previous back surgeries and both times they put me on Oxycontin which knocked mine hiney in the dirt and all I did was sleep. Don't get me wrong..I like good sleep as much as the next person..but I also like to be able to get up and DO dang it..lol
ShannonA
ShannonA

Oh and if you got pictures I would love to see them. (forgot to add that..lol..got so carried away there. XP)
ShannonA
ShannonA

Those photos are awesome (at least compared to what we look like before). Did you have to do much physical therapy after you were healed (like to stretch the skin or anything?)? I would so love for my armpits to look like that instead of the crazy mess they are right now. But like I posted in one of my journal entries...I am SO over the idea of "sexy" armpits (as if armpits could be..lol) and just focused on the idea of no pain at some point and no oozing, stinkin' areas there.
Thanks for letting those be available for us to see, Constance!
deleted_user
deleted_user

I was given oxycodone 15mg after surgery and wasn't knocked out from it. I could still be awake but minus the pain, unless I laid down in bed, then that's different :P
Sadly when I had the surgery, since both arms were done completely, I couldn't do anything that involved moving my arms unless I wanted the wounds to be opened up. I couldn't wash my hair, comb my hair or put it up! I even had trouble with putting clothes on! :(
deleted_user
deleted_user

It's no problem! I am SO much happier having these scars compared to what they looked like before!
Not any official physical therapy was needed! Once they had closed up and weren't going to open again, I just had to slowly start stretching my arms around to get movement back.

My armpits
deleted_user
deleted_user

My armpits, I love them even more than I did before HS! LOL I don't have to wear deodrant anymore because I don't produce sweat there and also I don't ever have to shave there again! hahah I'm totally okay with that :)

(sorry I don't know what happened to the rest in the previous post)