problematic underarm surgery, please help.

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I have suffered with HS for YEARS! My gp was less than helpful, protesting it was nothing more than boils and refusing to refer me to a dermatologist.

its taken six years to see a plastic surgeon and I have finally had my first

operation, I had it done march 30th. The wound was sutured and looked

Incredible, I was so happy. I had a drain in but that was removed the very next day and I was sent home.. then the problems started.....

Gradually, my wound has reopened! At first it was 3cm now its a huge cavity and the entirety of my arm pit.

my surgeon is on annual leave and everyone else seems reluctant to touch it, the latest after demanding to see another surgeon is that it should be left to open further?

I cant see my surgeon for another 9 days and I am feeling so low, my husband is doing everything for me and our family, even bathing me and getting me dressed.

I am meant to have the remaining stitches out tommorow but im not convinced thats a good idea..

Help me, please.

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  • Posted

    Just relax. Breathe. Calm.

    Right. When you go to get your remaining stitches out, the person doing it should be able to tell that your arm isn't ready for it. At the end of the day, if you get them taken out and your arm deteriorates more and you get infected (sorry if this is putting horrid thoughts into your head!) it'll reflect badly on the medical practice, and they don't want that. Tell your physician or nurse your concerns - they're there to help you through this, and I know as a fellow HS sufferer that it's a b**** of a condition, and hopefully they'll listen and find a solution for you. It won't go away over night, but there we go - just got to ride it out .

    Good luck! If you experience horrendous pain after going home, don't be afraid to go to A&E!

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  • Posted

    Hi Chrissey,

    Your wound sounds horrendous. If your surgeon is on leave and nobody is willing to touch it, I would suggest going to A&E. An open wound is not good or correct, the hospital need to sort it in some way for you to avoid infection and unnecessary pain. 

    Discuss your concerns with the nurse removing your stitches. They will have a look and might suggest leaving the stitches in longer and clean it for your or dress it. 

    I hope it gets better quickly xx

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  • Posted

    Thanks lauren, im really freaking out. Been to a&e loads due to it opening and the docs there have all said it needs closing either by way of a graft or stitching. The surgeon that came to the dressings clinic once I had said I wasnt happy was the one who said it needs to open more, im in so much pain already and I have 7 ops to go :-(

    I feel totally useless and almost broken... I'm 25 on the 19th and I'll still be in this state when I should be well on the way RE healing.

    the hole is huge, constantly weaping now there is blood on the dressing (im so lucky to have such a wonderful husband) he is redressing it right away when its needed.

    its all making me question further surgery, I wouldnt say im a wuss but this has me in tears all the time.

    how do you cope?

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    • Posted

      Just make sure you keep it as clean as possible - the healthier it is the easier it will be for medical staff to sort you out properly. 

      Like Rachel said - you could try the A&E again and stress that it's hurting you and that it's seriously affecting your sense of well being. It's their job to sort this kinda stuff out.

      Ah that sucks!! But just think - by the time you turn 26 you'll (or should be anyway) be healed and healthy and happy and ready to take on anything! 

      There's plenty of things you can do that don't involve you hurting your arm further - you just have to look on the brighter side of things. If there's such a thing as karma - you'll be owed a good time in the years to come!

      My first surgery went absolutely brilliant - the scar was a little larger than I wanted, but it turned out alright in the end, and I personally don't think that my scar is that visable - just looks like a line of slightly-wrinkled skin. My second..well that's what I'm suffering with at the moement...but I'm already looking ahead to my third surgery in a few months time. It won't always go perfect, but (hopefully) in the end it will all be worth it. 

      To be honest, my approach at coping is so..weird. I read a lot of books and watch films that make me realise how lucky I am to be in my situation. For example, Before I Die by Jenny Downham and My Sister's Keeper...they're both so doom and gloom and terminal that it puts H.S into perspective. It's a debilitating disease - but we can fight it! (:

      Sorry for the long message!

      x

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    • Posted

      Thats very true, normally I am much more sane lol but right now its as if someone has well and truly knocked the wind right out of me, I feel as if im letting people down gettimg this upset and im just trying to pull myself together but its so much harder than I imagined it would be.

      My mum suggested asking if the head of plastics has any private appointments before my date the nhs has given me, luckily between some members of my family they are prepared to pay if they can get me one.

      We're keeping it as clean as possible, going through dressings like you wouldnt believe and cleaning with saline.

      x

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  • Posted

    Thank you rachel,

    I've been to the hospital about 20 times since.. a&e agree that it neess sorting but then on the surgical ward, they say it needs to be left?

    Its crazy, I dont know where to turn or who to listen to up there.

    Its dressed (soley because of my husband ensuring it is plus mum and mother in law) im on antibiotics but surely the fact its massive and was originally stiched isnt good???

    Thanks so much for the help guys, I really am upset with it all x

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    • Posted

      I can only imagine how upset and frustrated you must feel. Speak to the nurse tomorrow, tell them exactly how your feeling and that your worried about possible infection. They can't continue to palm you off and pass you from pillar to post when your armpit is a gaping hole.

      Your family are saints for keeping it clean. Don't feel your letting any of them down, this is not your fault. If you feel anxious about your next surgery, I'm sure your entitled to postpone it until your current wound is healed at least and then speak to your surgeon when they return.

      Try keep your chin up (easier said I know) xx

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  • Posted

    Hi, I only joined this group yesterday, and some of the stories are awful, and yours sounds so bad, I am really sorry. I have suffered with HS for about 15 years now, and is gradually getting worse. I had surgery some years ago on my groin, both sides. It was stiched but started to open before the stiches were due to come out. The nurse at my local surgery took them out early as she knew that it was infection causing the problem, my GP wanted to send me back to the hospital for further stiches, but the nurse argued with him that it would only delay the healing process. I then had them packed every day for 8 weeks. When the skin started to near the top they stopped packing and used some other solution to encourage the skin to grow over and heal so it did not raise above my leg. It was remarkable after it was all over, very little scaring. Sorry such a long story, but this might be better than more stiching, especially if infected. I am not sure where to go now however as I have now had 6 abscesses in 4 weeks, had incision and drainage and more anitbiotics than held in a pharmacy. Keep thinking that what you are going through is horrendous, but it maybe a means to and end. I now need to start hounding my surgery to let me go to the dermatology outpatients to see if I can start getting somewhere to stop this horrible painful ailment. I feel your pain, chin up, it will get better, post so we know how you get on and take care. 
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  • Posted

    Blimey deb, that sounds awful.

    im dreading tomorrow, doubt i will sleep tonight if im honest.

    im on cocodamol and naproxen but its doing nothing, its like touching a live wire with the dressings against the wound.

    I really do wish I had the money to go private for all of it, some of the aftercare staff have made me feel like im a massive nuisance and I really dont mean to be but its horrific, I dont see this day in, day out!

    The first time I saw the open wound was with a thin mirror when my husband went into the kitchen to fetch dressings and I could have passed out.

    xx

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  • Posted

    Hi wasn't your wound packed from the inside?   They do this so not just the skin grows back but underneath the skin does too otherwise you have a hole there.  If they haven't done that already I don't know if it is too late now but in future they must do this.   It should be done every day for a while then every other day until the skin heals underneath it.   x

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    • Posted

      No they opted to close the wound, which would have been great had it stayed closed. The problem was there was lots of tissue removed, one of the worst cases he had seen by all accounts and a graft was the next option if it opened but then he went on holiday and no other plastics staff want to touch it so I have to wait until my surgeon is back.

      its just agony, before my next op I am going to request a step by step and back up plan before we go ahead because I have seen about 10 other people since the op, theres been no continuity. X

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  • Posted

    I'm scheduled to have the surgery under both arms on Wednesday the 15th. I have heard that if the stitches burst they will sometimes leave the wound open to heal, is there a wound clinic you can go to? I notice you said your husband has to do everything for you, is it because of the pain or because you are unable to move your arms? Once I have my surgery, I will continue to post updates. Hope things get better for you soon.
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    • Posted

      Hi!! I was very painful that first week. I went home with stitches and staples and a drainage tube on each side. It is definitely hard to move at all without using your arms. I think I slept sitting up for 2 weeks. After they removed everything I started feeling better. I guess I was doing to much and opened up a hole underbrush left arm. The surgeon "burned" it and it healed fine. I'm 2 months in and this has been the best decision of my life! I'm glad he opted to do the skin flap surgery instead of the skin grafts. I wear sleeveless shirts all the time now. Love my scars! The only think is sometimes my underarms itch and I scratch and scratch but can't feel a thing, lol.

      How have things been with you?? Thanks for asking!

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    • Posted

      You're not? What's going on, I'm sorry to hear that. I'm in 2 ft groups hidradentis suppurativa support group and hidradentis suppurativa warriors. I'd love to join yours also
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