Can you help

Posted , 3 users are following.

Hello...

I have been dealing with HS for a few years and had my 1st operation April last year, since then I have had to have 9 operation in on arm and it has never healed. 

I am now getting it in the other underarm and am really worried.  I feel like this is never going to end and starting to feel down about it a lot.  I am finding it really hard to stay positive about it all.  Ever doctor I see all tell me that it will get better but it just seems to be getting worse. 

I really don’t know what to do and how to become positive about it all. I don’t know if having so many operation is just making it worse or is this the only way to get rid of it

0 likes, 3 replies

3 Replies

  • Posted

    Hey Mins, are you going to a wound clinic? I had 16 surgeries on both arms.. it sounds like you are going thru the same problems that I did..
  • Posted

    Talk with your Doc about Manuka honey. We use it in the US for amputee patients and burn patients it helps the healing process. It helped heal some of my incisions from HS.
  • Posted

    Here is my personal story.  I am not a professional so please discuss everything on here with your medical professional.  Every case is different and I'm just sharing my personal case (which was probably the worst case scenario).

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    When I woke up, I had pain but the pressure was gone and I had relief on that side (my worst side) finally but I'm not going to lie after the pain medication was gone I was in pain.  The doctor came in to see me and my mom in the recovery area and told me that the surgery was a lot more intense than he anticipated.  He removed the lymph nodes and he said that on the right arm I shouldn't have a problem again once it heals up.  He was right. I've never had an issue with HS on my under arms since surgery.  I went home and took my pain medications as directed which helped with the pain and made me sleep alot.  As directed I changed my gauze three times a day the day after surgery.  I noticed and the doctor on my follow up visit that the incision was opening up and it did completely.  At that point we decided to go back to the OR and try the skin graft.  Did that and it failed.  Tried the wound vac next and even though it helped healing a LITTLE bit.. it still didn't heal.  Meanwhile my left side was still having the pressure and pain so even though the other side wasn't healed I begged him to do the surgery on my left side and he did.  Now I had two arms that I couldn't use.  The left side he just left open and my right side as well.  I was to place / pack gauze and change 3 times a day.  Problem was the gauzes would get stuck to the wound so bad and everytime I had to change the dressing it hurt sooooo bad.. PLUS, I couldn't pack the gauze.. too painful so I would just place them on the wounds.. One time it got stuck so bad I couldn't remove it and I had to go back to the OR.  Quality of life for me sucked!  I was in sooo much pain and nothing was working.  I was soo hopeless and I thought that nothing would help.  16 surgeries later.... 10 months later.... my surgeon referred me to a wound care clinic because he had exhausted all options... and he saw how worn out and tired I was... I cried to him and told him this was no way to live.. my emotional health was down the drain.. I was recommended to see a counselor and I did.. she spoke to me over the phone since I couldn't go anywhere.  Which I would also recommend... if you are depressed or have major anxiety like I did.. it slows the healing process... they put me an anxiety meds which helped.. I took them about 30 minutes before gauze / dressing changes..

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    I went ahead and did about 4 months of this....

    They did change my gauze once my infection was gone to include.. PRISMA, then Hydrofera Blue and then the surgical pad...

    and then once the wound was smaller... PRISMA and the ABD surgical pad.

    It's cool because they have so many dressings that I didn't even know exhisted and I'm in the health care field myself.. not even my surgeons and doctors know what they are..

    After 4 months, which may seem like a lot but it wasn't because I was living a more normal life.. each week seeing major improvements.. after 4 months I was completely healed!

    Once I started going to the wound care clinic I went from having NO skin under my underarms.. like the WHOLE underarm... to completely healed..

    My only regret in this whole process is not going to the wound care clinic sooner.. I wouldn't of had to have so many surgeries and PAIN and suffering.. Let me put it this way.. a surgeon deals with people under anesthesia.. they aren't gentle!  However, the wound care clinic deals with people who are in a lot of pain and awake.. they are so patient and understanding.. they are gentle and experienced in healing.. it's what they do..

    What I feel made the wound heal the quickest.. and the measurements agree with my opinion was the PRISMA and debridements.. the PRISMA btw dissolves on the wound so it doesn't stick and need to be removed... even though there were like two occasions that a little peice in the edge didn't dissolve and they just put saline and it could be picked right off.. Every time they did debridements and used PRISMA it healed quicker and quicker... OH! and there was 3 occasions where they did "carterized" the wound... sounds worse than what it is... it's like a long swab and they rub it softly on the wound.. once you have lidocaine on and it turned the wound like a smokey color.. but I swear it doesn't hurt with Lidocaine.. right after the numbing agent wears off you might feel a little discomfort but not bad at all.. I did notice significant changes when they did that towards the end of the healing process when my wounds reached a plateau of not healing.. at that time they were the size of a quarter or half dollar.. and the following week the size of a bean after not healing at all for 2 weeks.. so that helped a lot..  They also shaved the few areas that hair was growing.. hair by the wound will slow the healing process.. that helped ALOT as well.. if you want to heal quickly.. have them do this after lidocaine and debridement for less pain and they do it quickly while talking to you.. they are done before you know it..

    Also don't get discouraged if one week it is bigger by a little or the wound morphs a little... maybe longer but shorter in height.. that happens but it will keep healing if you follow the wound care doctors direction.. that happened to me twice.. I also had one reopen on one side.. but very little the size of a rice grain and it closed up again after a week (carterizing and shaving helped this one I believe).. just be careful and don't lift anything heavy.. you can rip your wound.. reopen.. tear it.. even after you are healed.... take a month or two before lifting because it can reopen if you aren't careful..

    each week was basically looking at the wound and seeing where you at and making changes as you go depending on what is needed..

    I remember getting discharged and I started bawling crying in happiness... I thought I would never get to that point of healing.. so I get how you are feeling.. I was there but it does get better..

    again.. my only regret is not going to the wound clinic sooner... do your research and find one that has the highest reviews and go asap.. maybe write a list.. of something I mentioned because there were times that I had to speak up and tell them about things i found on the internet or say HEY put some lidocaine lol..... and theres nothing wrong with that.. you are the one feeling the pain and not them.. speak up and if something hurts or is uncomfortable they are really good about accomodating you and finding ways to make it more comfortable.. the tape ripping the top layer of my skin (where the surgical pad was taped in place) and the wounds getting stuck was my major thing.. that was easy fixes for them.... adhesive removal swabs.. and changing it to paper tape.. and then using vaseline gauze on the wound helped..

    Please let me know if you have any questions.. I know this was long but I wanted to mention EVERYTHING I could think of...

    Like I previously said.. I went thru a lot of UNNECESSARY pain.. I try to reach out in as many blogs as I can and tell people what worked for me.. in hopes that it helps them too.... keep in touch.. let me know if you have any questions..

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