1.5 years on- surgery wound still not closed

ralipotso

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Hello,
Brief history as I've not posted here for a while.
Had first surgery about 1.5 years ago to remove pilonidal sinus. Wound almost closed but not quite. Had a second surgery about 3-4 months on from the first to close it.

The wound still hasn't closed despite these two surgeries, numerous strategies such as honey dressings, promogram, packing, silver nitrate etc. For a little while I was seeing a tissue viability nurse but she retired and now there is nothing similar being offered in my areas. I've essentially been left with a wound about 2cm x 1cm and 1cm deep. Not big but it still discharges and hasn't changed for months.

I've suffered massively with my mental health, not helped by covid/lockdown of course. I've been hugely depressed on and off in cycles, mainly because I feel there is no end in sight. I've not done sport for all this time and that was my main social interaction/fitness that I'd do 2-3 times per week.

The latest is that a referral has been sent off for plastic surgery to see if there's anything they can do. But who is to say that it once again won't heal as it is supposed to? Also, of course with covid, everything is at a standstill so who knows when I'll hear back about that.

I just feel totally abandoned. My surgeon has been very disappointing and has now discharged me from his care because I was seeing a colleague of his (who was seeing people face to face during lockdown).

I just feel like life is over at the moment. I'm single, 30, stressed and depressed.
 

Between2Cheeks

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I know the feeling. I'm healed now but it took 18 months with lots of stalling and lots of treatments.

I have two suggestions. I had a lot of success with PICO Dressings or Negative Pressure Therapy as it's known. Not commonly used on pilonidal sinus but it worked a treat for me, and lots of other people. A wound of your size is perfect for Pico. I was about the same when they put mine on.

Secondly using a dressing called UrgoStart is great to kick start wound healing. Easy to apply.

You didn't mention flamminal either, has that been tried?

There are still a lot of things they haven't tried so don't give up hope. I think a lot of things need to be tried just to keep the body guessing and to get it back into healing mode!
 

ralipotso

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I know the feeling. I'm healed now but it took 18 months with lots of stalling and lots of treatments.

I have two suggestions. I had a lot of success with PICO Dressings or Negative Pressure Therapy as it's known. Not commonly used on pilonidal sinus but it worked a treat for me, and lots of other people. A wound of your size is perfect for Pico. I was about the same when they put mine on.

Secondly using a dressing called UrgoStart is great to kick start wound healing. Easy to apply.

You didn't mention flamminal either, has that been tried?

There are still a lot of things they haven't tried so don't give up hope. I think a lot of things need to be tried just to keep the body guessing and to get it back into healing mode!
Thank you very much for your response. It's that never-ending feeling that's the hardest. I was due to see a plastic surgery consultant on Friday and that has now been cancelled due to an admin error. It's now being sent as a referral to a different hospital, so that means I now have to wait all over again for a new appointment.

I mentioned the negative pressure therapy to my nurse before but she said it wouldn't work so well because of the area and because the wound itself is quite small. I have heard quite a few people recommend PICO though.

I've not heard of Urgostart, will give that a Google. Flaminal also looks good but that's not been mentioned to me either. It seems like I'm having to be the one going to all of these doctors and nurses with different ideas. They've essentially said there's nothing more they can do and will just have to try even more surgery. I feel like they're the ones who should have the solutions. I will mention those though and see what they think, even if it's just something to try while I wait for the plastic surgery appointment. Thanks for your help.
 

Between2Cheeks

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Yeah I hear you. The waiting is the worst bit. I was told it would be 2 weeks to heal after the surgery. It was more like 2 years! It's probably the hardest part about all this, it just goes on and on. Meanwhile you're left with kind of an invisible injury.

I mentioned the negative pressure therapy to my nurse before but she said it wouldn't work so well because of the area and because the wound itself is quite small. I have heard quite a few people recommend PICO though.
They said the same to me, don't stand for it. If you have a dedicated wound viability team or wound clinic get in touch with them. There's studies out there by the various PICO producers on the effectiveness of them for Pilonidal Sinus.

My wound basically went right to my anus and multiple people said PICO wouldn't work. In the end it was the most effective treatment I could have asked for. Sadly the nurses don't always know best.

Flaminal and UrgoStart were also great so best of luck with those!

Sounds like your wound is fairly small by this point, just needs a final push to the finish. Don't lose faith.
 

ralipotso

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I'm guessing you're now fully healed? Even if it took you 2 years, I can at least use you as a good example I can hopefully follow.

Mine is actually a couple of inches away from the anus so it sounds like it could actually be in a slightly better position. I will mention it again though. Happy to try anything, of course.

I had a tissue viability nurse for a few months right towards the start who tried all sorts of things such as Promogram which had some success but then stalled. Eventually, she said that nothing else would work, it should've healed, and suggested that perhaps I was sabotaging my own wound. As you can imagine, this was devastating to hear and I was incredibly offended. She then retired, no other tissue/wound viability in my area so I've been left with occasional visits just to the nurse at my GP who gives it a clean. I know it's covid but I feel massively let down by all of these medical professionals.

I am seeing the nurse tomorrow so I will definitely be mentioning your 3 suggestions. Thank you.

* Ah, I also forgot to mention. I've been left with a very annoying keloid scar from the surgery too. It changes week by week, sometimes protruding a lot and sore, sometimes very flat. Apparently this isn't interfering with the healing but it's not ideal!
 

pilodoc

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Hello,
Brief history as I've not posted here for a while.
Had first surgery about 1.5 years ago to remove pilonidal sinus. Wound almost closed but not quite. Had a second surgery about 3-4 months on from the first to close it.

The wound still hasn't closed despite these two surgeries, numerous strategies such as honey dressings, promogram, packing, silver nitrate etc. For a little while I was seeing a tissue viability nurse but she retired and now there is nothing similar being offered in my areas. I've essentially been left with a wound about 2cm x 1cm and 1cm deep. Not big but it still discharges and hasn't changed for months.

I've suffered massively with my mental health, not helped by covid/lockdown of course. I've been hugely depressed on and off in cycles, mainly because I feel there is no end in sight. I've not done sport for all this time and that was my main social interaction/fitness that I'd do 2-3 times per week.

The latest is that a referral has been sent off for plastic surgery to see if there's anything they can do. But who is to say that it once again won't heal as it is supposed to? Also, of course with covid, everything is at a standstill so who knows when I'll hear back about that.

I just feel totally abandoned. My surgeon has been very disappointing and has now discharged me from his care because I was seeing a colleague of his (who was seeing people face to face during lockdown).

I just feel like life is over at the moment. I'm single, 30, stressed and depressed.
My name is Brian Shrager. I am the Medical Director of the Pilonidal Treatment Center of New Jersey (www.ptcnj.com). I am one of only a handful of high volume cleft-lift surgeons in the US. I take on the most difficult nonhealing pilonidal wounds. I offer also a more limited “simple pilonidal cystectomy”, pit-picking, and endoscopic pit-picking (EPSIT).

if you are scheduled for a lay-open surgery, a traditional closed surgery by a nonspecialist, or any other flap closure (e.g. Limberg, z-plasty.., please please consider cancelling your procedure, and getting help from a specialist. We are here to end this ordeal for you. You need no longer suffer
 

ralipotso

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Update:
Waited a couple of months for the plastic surgery referral. He said he specialises more in cancer and trauma so he's now referred me to a different colleague. 2 weeks on I'm still waiting for my new appointment date.

Wound is now going through another bad phase with lots of discharge and blood. My keloid scar is also very angry at the moment.

Now looking into Asha Senapati. I don't care if I have to pay. I need this fixed after a year and a half surgery recovery. Mental health back down again and thinking bad things. This cannot continue and it has stolen my life
 

Spokm34

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Update:
Waited a couple of months for the plastic surgery referral. He said he specialises more in cancer and trauma so he's now referred me to a different colleague. 2 weeks on I'm still waiting for my new appointment date.

Wound is now going through another bad phase with lots of discharge and blood. My keloid scar is also very angry at the moment.

Now looking into Asha Senapati. I don't care if I have to pay. I need this fixed after a year and a half surgery recovery. Mental health back down again and thinking bad things. This cannot continue and it has stolen my life
Cleft lift is the way no amount of negative pressure dressings will ever truly heal it,

it will only temporary heal it I wasted money on the pico dressings asha senapati the queen of cleft lift, the ultimate cure.
 

Spokm34

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New update: I am seeing Miss Senapati next week for a consultation. I'm really happy and surprised how quick the whole process has been.
Good luck, with consultation with her, she is very fast, my operation for cleft lift is with her this Saturday bit nervous but ready.
 

Spokm34

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Oh wow that is very quick! Best of luck to you. I hope this is the final piece of the puzzle for you.
Thanks Yeah Hopefully this puts an end to it I'm depressed fed up,with this wound is getting me down. I will update on here how the operation goes on Saturday what the recovery is like and how long the drain takes to come out, and generally how long I be able to walk again.
 

ralipotso

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Thanks Yeah Hopefully this puts an end to it I'm depressed fed up,with this wound is getting me down. I will update on here how the operation goes on Saturday what the recovery is like and how long the drain takes to come out, and generally how long I be able to walk again.
I'll keep an eye out for your posts. You sound like you're very much in the same frame of mind. With any luck I won't be too far behind you
 

Spokm34

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I'll keep an eye out for your posts. You sound like you're very much in the same frame of mind. With any luck I won't be too far behind you
Well I actually saw her last year but my wound was almost healed last year, but this year its reopened and gone backwards so that's why I'm having the operation now, I can tell you that the 1 night stay at Spire Portsmouth is £150 a night and I had to fight to get my insurance company to pay for that and I won the 1 night hospital stay, the drain needs to be removed 2 to 3 day's so I've booked myself into a bed and breakfast 3 mins drive from the hospital so once my drain is taken out I will go home, but when you to decide to have you're operation it's entirely upto you after the operation you can have it done as a Day Case or you can stay 1 night in the hospital that is totally upto you, I will update you Saturday all the best.
 

ralipotso

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Update: I saw Miss Senapati today. Very quick in and out but all very positive and professional. I'm now on the private waiting list for a cleft lift. I'm hoping it doesn't take too long, I made it clear that I'm desperate and would do it as quickly as possible. I know it's not a guaranteed fix but it FINALLY feels, about 2 years after the first op, that I'm on the final straight.
 

Spokm34

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Update: I saw Miss Senapati today. Very quick in and out but all very positive and professional. I'm now on the private waiting list for a cleft lift. I'm hoping it doesn't take too long, I made it clear that I'm desperate and would do it as quickly as possible. I know it's not a guaranteed fix but it FINALLY feels, about 2 years after the first op, that I'm on the final straight.
Wow that was very quick goodluck with the operation it will be painful at first but this will fix it for sure
 

Spokm34

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Update: I saw Miss Senapati today. Very quick in and out but all very positive and professional. I'm now on the private waiting list for a cleft lift. I'm hoping it doesn't take too long, I made it clear that I'm desperate and would do it as quickly as possible. I know it's not a guaranteed fix but it FINALLY feels, about 2 years after the first op, that I'm on the final straight.
Update: going to the bathroom is the worst, this is my first time having to go since my operation that was sheer agony they didn't warn me it be that bad I was scared I was going to pull out my drain or tear the skin, but everything seems ok I've got one more day/night to get through until the drain is out, I've just took pain tablet's
 

Spokm34

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Update: I saw Miss Senapati today. Very quick in and out but all very positive and professional. I'm now on the private waiting list for a cleft lift. I'm hoping it doesn't take too long, I made it clear that I'm desperate and would do it as quickly as possible. I know it's not a guaranteed fix but it FINALLY feels, about 2 years after the first op, that I'm on the final straight.
Update I'm off home now in 2 weeks I should be fully healed I wish you the best of luck on you're operation thanks for the support on here let me know how it goes all the best to you.
 

ralipotso

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Sounds good! I'm pleased things are going well for you. I'm only an hour away so she said I'd be a day case and I'm on the private waiting list. I'm hoping that I get the call/email quite quickly for the op but just have to wait and see.
 

Spokm34

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Sounds good! I'm pleased things are going well for you. I'm only an hour away so she said I'd be a day case and I'm on the private waiting list. I'm hoping that I get the call/email quite quickly for the op but just have to wait and see.
Thanks I don't think you will have to wait too long,they will be booking you in for you're covid swab test first, 1 week today I had my surgery damn it's flown by the hospital was so quiet last Saturday hardly anyone in and the staff are amazing if you're having it done at Spire Hospital the staff are incredible.
 
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