Confused after surgeon appointment...

#1
Hey guys. I had my post op appointment with my surgeon last night, but I've left a bit confused and upset.

I had my operation in July, first time with this problem, closed with stitches. Unfortunately I got an infection a week after my op and the wound opened up a little in the middle, which was probably not helped by me sitting too much after my operation. It's still open now, after months of almost closing, infections then back to the start of healing again, and is about 0.8cm deep, 0.7cm long and I'm not sure how far across, but it isn't a big wound. I saw my surgeon yesterday, the first time since my op and it wasn't the best experience.

Before he had even seen my wound, he said 'if it hasn't healed by now, then it never will'. I explained that my district nurses had started using Aquacel this week as I had been on Flaminal, and she expected it would be healed by December, if not two weeks. To this he said 'Don't kid yourself' and then proceeded to look at the wound and say how if the wound doesn't heal it's caused by the pilonidal disease and nothing else, and how there is a 15% failure rate on all operations to treat this. He said he was happy for me to see him again at the end of November to give the Aquacel a chance, but that he was sceptical it would even work. He made a comment about the district nurses trying all these things saying it'll work when it actually won't. The only thing in favour of myself and the district nurses was that if a pilonidal wound breaks down, it's not usually where mine has, so it may not be due to the pilonidal sinus being back again. I asked what surgery would happen next, he said wide open excision and that we could fit the surgery around my schedule, the earliest being late January, early Feb. I was upset at this point, because the last few months have been hell on earth, with no real help or guidance after my operation and being very limited in what I can do and feeling like I will never get better. He was a bit less blunt at this point and said I can do whatever I want as normal, obviously not things like swimming, and that I'm a normal health 24 year old living with pilonidal disease.
Today, I woke up with blood across the bottom of my dressing, and then at the top and sides. I got an earlier appointment with the district nurses, thinking the whole scar had reopened, but it was the same wound, the same size, it had just been bleeding, probably from my surgeon being too pokey the night before.

I am very, very confused after that meeting. District nurses and doctors have told me this wound takes ages to heal because of where it is, but that it will heal. I have seen people on here who have taken months to heal, longer than me currently. My surgeon then says if it hasn't healed after 100 days it won't heal and I need more surgery. I have read online, on the NHS website, that wide open excision has the lowest reccurance rate and infection rate, my surgeon said all the surgeries have a 15% failure rate. When I was originally referred by my doctor, she said they would do an incision and drainage either with local or general anesthetic, as it was just the abccess I had, with no pain other than when I knocked it, and it improved with antibiotics. When I first met my surgeon, he said we start with closed with stitches, then open excision, then keep going through all the surgeries. I thought it was based on what was best for the paitent and what the paitient preferred, as I have seen people on here who have had their first op as wide excision. I'm getting the impression from my surgeon that he just goes through all these surgeries like their a course of antibiotics, like none of them will ever heal it and we just keep operating and operating throughout my life, as he said before I was even operated on that it will come back and eases off near your 40s. All the nurses I've seen have been surprised it was closed with stitches as well.
I've lost an incredible amount of faith in my surgeon from how blunt he was and how his information contradicted everything else I have heard, from other NHS staff. My boyfriends dad, who works in the NHS and my district nurses said I can get a second opinion from my GP or ask to see another surgeon, and I really hope I can because I feel so low and negative about this whole process again, after feeling like I was near the end. As far as I was concerned, because my scar had opened again, I had to go back to the start of the healing process, and everytime it reopened with an infection that was the case, not that it was unhealable. The nurse I saw this morning was incredible, calming me, telling me how well I was doing, how clean the wound was and how they will get it to heal. She even said to ignore my surgeon, although she wasn't allowed to say that, and that they see wounds like this every day.

I'm just very conflicted on what to believe now. Has anyone else had any issues like this with their surgeon, or able to offer any advice? Am I able to see a different surgeon? I am dreading my appointment with him at the end of the month and don't want to go at all! I can't imagine all this stress is good for me healing either, as it's making me so upset and I've gone right off my food as well because I'm sick with nerves.
 
#2
I had an open excision last year, November 2017, and not once did it close up. It remained unhealed for basically an entire year until the 18th of October of this year, when I got a cleft lift.

The cleft lift I had feels like its failed. I'm leaking, and it's very very discouraging. But from past experience, all I can say is this; do NOT get an open excision ever again; it's heavily overrated.
 
#3
I got my first PS around your age. I had open wound with packing. It took months for it to heal. But when it did, I had no recurrence for 10 years. Please do not get discouraged. You will get through it.
 
#4
How many months did it take Antmysta? I'm 4 months nearly now, but I've had so many infections I'm wondering if they're caused by it being back already. I'm just at a loss of what to do, keep waiting for it to heal or give in and let my surgeon book my next operation haha.
 
#5
I had an open excision last year, November 2017, and not once did it close up. It remained unhealed for basically an entire year until the 18th of October of this year, when I got a cleft lift.

The cleft lift I had feels like its failed. I'm leaking, and it's very very discouraging. But from past experience, all I can say is this; do NOT get an open excision ever again; it's heavily overrated.
Oh no, I'm sorry to hear that! It's awful isn't it, wasting so much time with something that won't heal. I don't think I'll have an option about the open healing, it's the next surgery my surgeon says they do.
 
#6
I feel like what happened to you happened to me. My first surgery was a cleft lift but got infected like yours and opened. (3 places) then I went to district nurse and they packed me with Aquacel and it almost healed then got another infection and all 3 holes opened further. I ended up getting a second more extensive cleft lift surgery 6 months after this. And I'm 12 weeks down the line, is healing well but they have found another reoccurring sinus. So I'm absolutely fuming. Contemplating not getting further surgery and just living with it.
 
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