Anxieties

Discussion in 'Pilonidal Discussions - UK Forum' started by Typo56, Nov 1, 2014.

  1. Typo56

    Typo56 New Member

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    Good news and bad news.

    The good (if it can be called that) is that wide excision is not recommended for me as the problem area is relatively small, coupled with my other health problems that mean I would have difficulties healing up from so large a wound. I'm told my situation would be best helped by the Bascom pit picking operation, it being far less invasive and with a high success rate. The only worry on my part is that they prefer doing it under local anaesthetic which there's no way I could deal with, but other than that it sounds good.

    The bad is that I can't afford private treatment and the quickest I could be seen on the NHS is 5 months after they receive a referral which has to be argued about with my GP (and not get lost in the admin system in Portsmouth which I'm told happens quite a lot). Could it get worse in the meantime? I'm also told they wouldn't be able to do the pit picking op within 3 weeks of an I&D. I'm already having to deal with increasing pain and discharge, so am bracing myself for another hospital trip in the new year. Supposing I do get to see a surgeon outside of the PCT, that won't be until the middle of the year. With my healing difficulties, it could be the majority of the year lost to this disease which has cost me my only income source. It's a grim place to be right now, everyone looking forward to 2015 and me writing it off before it's even begun.
     
  2. Johnathan Irons

    Johnathan Irons Very Helpful

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    You should look into getting a loan if you want this sorted now. Pit picking has such a short recovery - you're very lucky to be in the situation where you can avail of this procedure.

    Otherwise go down the NHS route and constantly contact them to update you.

    Its hard to say what your pilonidal will be like in a few months. If you try hair removal, disinfect the area and bathing to keep it at bay.
     
  3. lyn2014

    lyn2014 New Member

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    Hey, how are you getting on?? I have my appointment with my cleft lift surgeon on the 30th.

    I don't want to seem negative but does anyone know of anyone where the cleft lift hasn't worked?

    Keeping my fingers and totes crossed that this surgeon will give me this op.

    Does anyone know healing times or anything?

    My back, sides and shoulders are all killing me because I have to sit funny all the time!!!

    P.S I've been on antibiotics 11 times since September. Absolutely ridiculous that no one seems to know what to do with me!!! Keep everything crossed that this surgeon on the 30th gives me this op!!!

    Hope you're ok typo and hope you guys had a lovely xmas :) x
     
  4. Typo56

    Typo56 New Member

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    I'm being referred on the NHS. It's a very long wait, but not being able to afford private I'm just glad that I can have something that isn't excision. There's always room for error (admin, ops, infection, argh) but I just hope everything goes smoothly. My GP was strangely fine with it. I did point out that I found some NICE guidelines that recommend pit-picking as the first surgical treatment for initial smaller abscesses, also GMC guidelines that if the suitable treatment is not known by the surgeon you're referred to they're supposed to be able to find out who does and refer you to them! There are a surprising number of rights for NHS patients that no one tells you about.

    Hi lyn. There probably are cases where ops don't work out, but the CL has much better results than things like excision. Let's think positive :) I've heard the main part of surface healing can be as little as 2 weeks, which is amazing compared to some of the more drastic ops.

    I know about the aches and pains! Having to sit all folded up or leaning to one side then the other... Enough to make you feel seasick! Argh, that many?! How do you cope? My GP keeps offering them because I have pain even though I'm told it's not currently infected. It's shocking they put you on so many.

    Hope you're OK. It's not too long til the 30th!
     
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  5. lyn2014

    lyn2014 New Member

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    Are you going for the cleft lift? I looked at my bum cheeks today and noticed that I don't have a gap at the top? Is yours like this? I'm not sure if it's just the way mine is shaped now because of previous surgeries!

    I'm sick of antibiotics but I'm doing all I can to stop a major flare up that can ruin my chances of the cleft lift.

    How have you been getting on? Any progress?
     
  6. Typo56

    Typo56 New Member

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    While trying to sort out other health problems, I found out that Portsmouth lost my referral (I'm told it happens a lot) and had to be reminded of it, adding an extra month on to my waiting time! Not best pleased.

    The cyst has been growing steadily, until 2 days ago when it came up really big, really fast. The pain, urgh, I thought I was in for another A&E trip in the week (at my local you don't go at the weekend unless you're near death as they don't operate... or care). Luckily (unluckily?) the infection came out via the I&D scar which had only just healed up fully last month. Still a huge mass there, but the can't-stand-the-touch-of-clothes pain is gone. I'm hoping that Epsom salts and gauze will be enough to keep this under control rather than running to the GPs and being given more antibiotics. Feeling run down and exhausted from being unable to sleep the last few days.

    Post I&D, after finishing the packing, I got 2 months problem-free. Now worrying that this pain-rupture-illness cycle will be the norm every few weeks.
     
  7. lyn2014

    lyn2014 New Member

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    I'm so sorry to hear your suffering. I think after you have your surgery at Portsmouth that this will be it for you!

    Get yourself I. A bath with Epsom salts, you will notice a huge difference in 24 hours. It's really worth the £8 a tub! I swear by them for flare ups!

    I saw my surgeon, it turns out the surgery I had in August was a mini cleft lift and I will be getting a revised cleft lift after my mri scan. Not actually sure what any of that means but I'm sure I'll find out!!

    Hope you're keeping well aside from the cyst! X
     
  8. Typo56

    Typo56 New Member

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    Gosh lynn, I hope you have found out what's going on! One surgery is bad enough.

    Every 2 weeks without fail the cyst has returned. My poor nurse is very confused; she deems the wound well healed and in no further need of dressing on a Friday, then I come running back Monday morning begging for help because it came up and burst Sunday night. It's now threatening to come back 1 1/2 weeks after the last one. Makes no difference if it's Epsom salt-soaked or completely dry and covered in dressings for the whole time. I feel really rather grim, although I'm getting used to feeling like I'm just about to come down with flu. Really worried this will cause problems for surgery as they can't operate when it's infected. I have a date and informed them of the infection but I've been given no advice on what I can do. It's a bit of a long journey to then just get turned away on the day. Also told it's under general rather than local, which is scary but being conscious would be far worse.
     
  9. Johnathan Irons

    Johnathan Irons Very Helpful

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    Hi Typo,

    I don't think its ideal to have an infection before/during surgery but it can be done.

    I went into my cleft lift surgery with no visible infection. But after I woke up I was told I had an abscess deeper under the skin. Just made the recovery a little harder but its definitely manageable :)

    When are you scheduled?
     
  10. Typo56

    Typo56 New Member

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    Hi Johnathen

    End of this week. The infection's gone down a bit, so hopefully that will be ok. I suppose it'd have to be really bad on the surface to be turned away.

    I'm really worried though, as the NHS staff are so difficult to get hold of and I haven't been given any info on my operation beyond the "turn up on time" and "don't eat for x hours". Getting through on the enquiry line just leads to being told that they can't tell me anything without asking the consultant who isn't (and never seems to be) there and that they will call me. Been waiting a week for answers. I really need to know things as I've got quite a long journey there and need to make arrangements before it's too late. It should be this stressful to get answers :|
     
  11. lyn2014

    lyn2014 New Member

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    My cyst was like that 2! Here one minute and away a couple of days later. I was discharged from the nurse on the tuesday and was back in with my wound re opening and infected on the Friday, it's awful!

    I'm currently mid flare up, mri scan showed the cyst under my skin which has now moved to the top of my skin and not draining by itself.

    They don't like to operate if you feel flu like but they can do it. My cyst is currently infected and I will be having surgery whilst it is like this. I need to, it's exhausting being in pain all the time. I'm a big misery guts today!!

    anyway,8 hope your cyst has calmed down for you and you get the answers you are looking for!

    X
     
  12. Johnathan Irons

    Johnathan Irons Very Helpful

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    Yes, let us know how you get on!
    Good luck!!!!
     
  13. Typo56

    Typo56 New Member

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    Thanks for the support :)

    The Bascom pit picking is like an I&D+. The experience is comparible, only thankfully without the wound packing. The actual proceedure at the hospital was extremely unpleasant though, and the first week of drainage is utterly awful as the "dressings" given are just jumbo sanitary towels (Not sure what I'm going to do come time of month, as the towels have to be very high up. Wishing I didn't have to worry about that). There are stitches involved, but they come out after a week. I felt like I had flu for that first week, only without the stuffy nose. Hot & cold, shaking, loss of appetite, weakness, lethargy... Just wanted to lie in bed but it was too painful to lie down!

    The wound is now healing up, although there's still a fair amount of discharge and bruising. There's also a familiar nagging pain beginning, as well as a lump starting to form to the side of the abcess wound much in the same way there was post I&D. It was not present at first, but came up as the wound started healing. So as before, it could be scar tissue, but it could also be the abcess returning. That's a worry I can't do anything about until either I can ask someone or in about 2 months time it flares up fully. I should see Miss Senapati for a follow up, though I'm not sure when.

    Also utterly exhausted from not being able to sleep comfortably (rolling onto the wound in your sleep is very unpleasant) and also just... tiredness. My GP nurse told me to take it easy for 3 weeks post-op as in some people the body can stay in shock for quite some time even with a minor op. Really getting me down.
     
  14. Typo56

    Typo56 New Member

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    So, an update. Saw Miss Senapati for 2 follow-up appointments and was discharged as the healing was going well.

    The abscess returned in November. I got treated quickly with antibiotics, but it never really went away and I was left with a small lump to the side of my scar. My GP (a different one from the last flare up) said it was just scarring, but my I&D/pit-picking scar had gone down to nothing over about 7 months post op (I know this because I was very pleased!). I was referred back to Portsmouth and it was left at that. When the pain started again this week my GP said there was nothing wrong and no point in antibiotics as there was no 'collection' (although I could feel there was), and to just sit (haha) and wait for Portsmouth to be in touch. Then today I spent several hours in A&E after being seen by a different GP and have another I&D to look forward to. Dreading it tbh, I honestly thought I'd never need to go through it again what with the high success rate from pit-picking and my apparently straightforward PS.

    I'm not sure what this means for future treatment. I'm afraid of going through the infection>bursting>healing cycle all over again, as I honestly can't tolerate antibiotics well. I lost so much weight on the last lot and haven't really recovered. I don't want to go down the wide excision route that my local hospital advocates if there's anything I can do about it. I hope it doesn't take too long to hear from Portsmouth :(
     
  15. Tonster

    Tonster Very Helpful

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    I would be looking forward to a wide excision if I were you Typo and trying to encourage it, I was ready for them to cut my entire back end off if that would help. I had an incision and drainage and infection returned in another sinus within 2 weeks. Wanted antibiotics but GP referred back to emergency. They admitted me and did a wide excision to remove the whole area (biggest they've seen :)) deep cut with no pain.. Assume nerves were cut. I had agreed to whatever operation they thought necessary as they are professionals put your trust in them rather than challenging them every step of the way. Since they decided on the incision they were really disappointed on the result and rushed me through to fix up what they blamed themselves for and did he the wide excision.

    Recovery is ok.. Just daily packing... The surgeon had tried a 'delayed closure' technique leaving me in hospital for a week on IV antibiotics before stitching it up. Then two weeks with the stitches... He ended up needing to open part of the wound... Then packing... Another 3 weeks he opened it again to avoid some undermining. So look into Delayed Closure.

    So basically a big open wound made into a much smaller open wound within 4-6 weeks. Very little pain following surgery and packings.

    There is that much flesh taken I can't imagine that anything will come back.

    I dealt with mine dressing it myself and getting on with life for 15 years... Until the surgery no matter how painful or inconvenient was going to be better than the monthly excruciating pain and drainage relief.

    Ps I don't know if it's a fad or coincidence but I'm right into probiotics at the moment. To combat effects of antibiotics on bowel and stomach, but continuing them following the surgery, 3 months later the rest of my acne and HS is in remission too. I wonder if they might help you with all your issues... Make sure to buy good ones... They should be sold from a fridge in the pharmacy.

    I'm also testing out using chlorhexidine (specifically) wash in the shower to avoid flare-ups. Also with oral antibiotics I tried them all over the years with dermatologists etc.. The one that nails that infection for me is 'clindamycin'.
     
    Last edited: Jan 15, 2016
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