2nd op- still not healing- depressed

Luke Wade

Very Helpful
Just an update

It's now been a bit over 4months since second op. A month ago I managed to get a referral to a tissue viability nurse. Since seeing her, they've been using Promogran Prisma daily and it's now almost healed. They reckon it should be fully healed in 2-3 weeks.

I'm the over the moon to finally be seeing some actual progress. No surgeon and no nurse at my GP mention TV nurses to me. I only found out about it through my aunt who is a receptionist at a GP. For anyone who has been struggling and hasn't seen one, go get a referral from your doctor.
Great to hear! There will be a day when you no longer have to worry about your butt crack - I promise you.

Another thing - I did have a tiny patch of raw skin at the end of my healing that just wouldn't heal.. I sprinkled table salt on it. Left on for a minute - rinsed off. This dried the patch out and healed it after repeating once a day for about a week. Note this patch was about 1cm by 1cm and quite flat. Hope you heal this last area quickly
 

mountainviewSZ

New Member
Hang in there. I fought mine for 3 years, at the outset of High School, until they finally nailed it. I can't remember the procedure names, but I had 3 in-patient surgeries on mine, not to mention the tens of in-office lancings and cauterizations. After two unsuccessful in-patient procedures(one was a 5 day stint at hospital with woundvac) and months of packing with gauze, my GS referred me to a plastic surgeon in Charlottesville, VA who went in and 'took a chunk of meat' out and left a caving culdesac. Pain was completely gone. In regard to your first post of not being able to find a comfortable seated position - I was forced to learn to sit on my cheek and alternate. My elbow would help prop my body up. Wishing you a speedy recovery.
 

ralipotso

New Member
Hello
Another opdate
1 year since op#1
Roughly 7 months since op#2

Still not recovered unfortunately. Still wearing pads. It's no longer a tunnel which is good, it's right towards the top but it just won't close. It still leaks a little bit.

I'm showering twice per day and hairdrying it gently

I've been on all sorts of different treatment and packing things. Most recently, I've been using an iodine spray thing every few days to try to keep it clean and dry it out

It occasionally seems to make big progress for a few days and then just does nothing for weeks and weeks

Of course with lockdown and everything, I've not been able to see my tissue viability nurse which is a shame. I feel like I'm just chugging along and it's not improving anymore

I've definitely had 'dark thoughts' over the past few months and I desperately need this to heal and go away. I can't take it much more. My confidence has totally gone. I can't do the sports that I love and I'm hopelessly single until it finally decides to heal and I can put myself out there again
 

Angusm

New Member
Hello
Another opdate
1 year since op#1
Roughly 7 months since op#2

Still not recovered unfortunately. Still wearing pads. It's no longer a tunnel which is good, it's right towards the top but it just won't close. It still leaks a little bit.

I'm showering twice per day and hairdrying it gently

I've been on all sorts of different treatment and packing things. Most recently, I've been using an iodine spray thing every few days to try to keep it clean and dry it out

It occasionally seems to make big progress for a few days and then just does nothing for weeks and weeks

Of course with lockdown and everything, I've not been able to see my tissue viability nurse which is a shame. I feel like I'm just chugging along and it's not improving anymore

I've definitely had 'dark thoughts' over the past few months and I desperately need this to heal and go away. I can't take it much more. My confidence has totally gone. I can't do the sports that I love and I'm hopelessly single until it finally decides to heal and I can put myself out there again
Sorry to hear you are still having issues. As soon as this lock down is over I would seriously consider seeing Miss Asha Senapati. I was in the same position as you. I had 1 primary excision and closure and 1 "cleft lift" by a surgeon in the hall of fame section on this site. Neither of them worked and the wounds broke down. I saw miss Senapati booked an appointment for the end of October to have the cleft lift done by her, and since then it has went on to heal the first few months we're rough for me I'm not going to lie, but that was mainly just mentally after having 2 failed ops prior. The scar has now been healing for over half a year and I have had no issues what so ever, apart from nerve pain which is perfectly normal for all surgeries. I would do it again in a heartbeat.
 

ralipotso

New Member
Thank you

I keep seeing her name pop up, so much so that I'm almost suspicious it's some kind of paid advertising I'm seeing my surgeon again in a couple months if I'm still having issues I'll definitely be looking into alternatives, although the thought of more surgery is horrifying
 

Guitarnerd97

New Member
It’s not paid advertising, she is the specialist in this area of medicine in the UK. I was left with a monster wound after a failed cleft lift 5 years ago that never healed, I saw Asha Senapati last year and she fixed me 1st go with no issues whatsoever. If you are as desperate for your life back in the ways you describe then you have to take onboard what myself and others on this thread have recommended to you. I promise she will help you.
Sorry if that comes across as blunt but I wish someone had given me the same info 5 years ago. Best of luck!
 

6yearwonder

New Member
It’s not paid advertising, she is the specialist in this area of medicine in the UK. I was left with a monster wound after a failed cleft lift 5 years ago that never healed, I saw Asha Senapati last year and she fixed me 1st go with no issues whatsoever. If you are as desperate for your life back in the ways you describe then you have to take onboard what myself and others on this thread have recommended to you. I promise she will help you.
Sorry if that comes across as blunt but I wish someone had given me the same info 5 years ago. Best of luck!
I’ve just asked for a referral to her after 6 years and 4 failed surgery’s. Recently my wound (my entire cleft and part to the side ) has opened up and looking very angry lol. How long was the process to actually have an appointment and treatment from her ?
 

ralipotso

New Member
It’s not paid advertising, she is the specialist in this area of medicine in the UK. I was left with a monster wound after a failed cleft lift 5 years ago that never healed, I saw Asha Senapati last year and she fixed me 1st go with no issues whatsoever. If you are as desperate for your life back in the ways you describe then you have to take onboard what myself and others on this thread have recommended to you. I promise she will help you.
Sorry if that comes across as blunt but I wish someone had given me the same info 5 years ago. Best of luck!
Thank you that's good to hear. You just never know with the internet! Yeah I'm desperate for some sort of solution. I can't continue like this.
 

aleximo

New Member
Hello
Another opdate
1 year since op#1
Roughly 7 months since op#2

Still not recovered unfortunately. Still wearing pads. It's no longer a tunnel which is good, it's right towards the top but it just won't close. It still leaks a little bit.

I'm showering twice per day and hairdrying it gently

I've been on all sorts of different treatment and packing things. Most recently, I've been using an iodine spray thing every few days to try to keep it clean and dry it out

It occasionally seems to make big progress for a few days and then just does nothing for weeks and weeks

Of course with lockdown and everything, I've not been able to see my tissue viability nurse which is a shame. I feel like I'm just chugging along and it's not improving anymore

I've definitely had 'dark thoughts' over the past few months and I desperately need this to heal and go away. I can't take it much more. My confidence has totally gone. I can't do the sports that I love and I'm hopelessly single until it finally decides to heal and I can put myself out there again

If you are having trouble with healing it may be that you have sinus tracts, however if it is just a superficial wound with not regular discharge then try reading my recent thread, hydrocortisone cream really helped.

https://www.pilonidal.org/xfforums/...uffering-this-absolutely-worked-for-me.15146/
 

ralipotso

New Member
If you are having trouble with healing it may be that you have sinus tracts, however if it is just a superficial wound with not regular discharge then try reading my recent thread, hydrocortisone cream really helped.

https://www.pilonidal.org/xfforums/...uffering-this-absolutely-worked-for-me.15146/
Thanks for your message. They believe it's just slow to heal and not linked to any complications.

Funnily enough, my tissue viability nurse just recommended hydrocortisone cream. I'm desperate so will try anything
 

ralipotso

New Member
Update. I've now been informed that the tissue viability clinic is no longer longer running and won't be returning. So the specialist I've been having is no longer going to see me. I was told to return to my doctor or surgeon.

I feel so abandoned by it all. It must be around 8months or so post op#2. It's improved a lot but I still have a bit of scar protruding and there is still a small wound. It still discharges each day and regularly bleeds.

What the hell can I do? Does the discharge mean there are still issues underneath it? Do I need more surgery?:
 

Luke Wade

Very Helpful
Update. I've now been informed that the tissue viability clinic is no longer longer running and won't be returning. So the specialist I've been having is no longer going to see me. I was told to return to my doctor or surgeon.

I feel so abandoned by it all. It must be around 8months or so post op#2. It's improved a lot but I still have a bit of scar protruding and there is still a small wound. It still discharges each day and regularly bleeds.

What the hell can I do? Does the discharge mean there are still issues underneath it? Do I need more surgery?:
Hard to say if there's issues underneath or not. Just try your best to stay positive until you can see a cleft lift surgeon and get it sorted, I know it's hard but you'll eventually get it fixed. Lockdown is lifting now so things will speed up
 

Spokm34

Very Helpful
Try pico 7 dressings they are the best dressings for no infections no bleeding promotes blood supply to the wound can walk around with it.

If that fails cleft lift is the king of operations
 

6yearwonder

New Member
Update. I've now been informed that the tissue viability clinic is no longer longer running and won't be returning. So the specialist I've been having is no longer going to see me. I was told to return to my doctor or surgeon.

I feel so abandoned by it all. It must be around 8months or so post op#2. It's improved a lot but I still have a bit of scar protruding and there is still a small wound. It still discharges each day and regularly bleeds.

What the hell can I do? Does the discharge mean there are still issues underneath it? Do I need more surgery?:
I know it’s really difficult at the moment I’m feeling truly lost and at the end of the road with it but hopefully things will start returning to normal with the nhs and such. I know surgery is rubbish and no one wants to go through it all again but the best thing is to get your nurse to swab your wound to see if discharge is infection. If yes get yourself a referral to a specialist and keep seeing your normal nurse so they can keep an eye on it while you wait. If it’s not then it might just be keeping the wound clean and experimenting with things like the cream which I’ve heard good things about and pico which can sometimes work. As your 8 months post op with healing issues your not done with as far as tissue viability is concerned so I would go straight back to your gp and tell them you need to still be under their care and if they don’t listen tell your surgeon. If neither agree find yourself a new gp and surgeon because that’s not good enough. Keep going because already you have come so far.
 
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