Anxieties

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

  1. Typo56

    Typo56 New Member

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    How to begin...

    Basics: Mid 20s, female. Apart from PS, I have ongoing long term stomach problems which have caused me to be very underweight, anxiety, depression and severe emetophoboia (amongst a great list that also includes needles, doctors, blood, pus, open wounds... generally all things medical freak me out).

    Story (Long ver.): I noticed a lump on my tailbone probably about January 2014, though I have the feeling it's been around longer. It started causing me problems when due to both a bad back and acid reflux, I was instructed to sleep on my back propped up. It was uncomfortable, so while seeing my GP I asked about it. He felt it, shrugged, and told me it was a cyst (you know, a mass of fatty tissue) and it was nothing to worry about. I was a bit annoyed as it meant it was permanent, but otherwise I was reassured.

    Fast forward 9 months and on a bus journey I sat down hard on the seat, smacking my tailbone as I had so many times before. The pain was ridiculous. I intended to ask a GP when I next saw them and considered paying crazy amounts for physiotherapy as I assumed it was referred pain from my poor spine. But then on day 3 of pain, I felt that lump while rubbing my back and decided to Google it. I had all the symptoms of PS except drainage, so that couldn't be it... Except about 30 minutes later it was draining a lot. Sadly it picked a Friday afternoon when my GPs had no on the day appointments and sent me to my "local" (over a mile away) walk in centre even though I'd been barely able to get to the GPs! Thankfully I got a lift and was seen very quickly. I assumed it would just be a quick clean up and instructions to see my GP. Then I was handed a letter and told to go to A&E NOW. Now being Friday evening, after 6, and A&E being 2 miles of commuter traffic away.

    So, 3 and a half hours in A&E. I was seen once early on to give blood samples and left with a socking great tube in my arm that left my right side covered in blood from a bit of over-enthusiastic inserting (don't get me wrong, the nurses were amazing and very supportive). I finally saw someone and was told that now it was too late as the surgeon went home at 6 and I'd have to stay overnight to have... something done. Not told what. In so much of a state I almost didn't care. Spent a miserable sleepless night on a ward, asked the same questions by so many people both that night and in the morning and then met the weekend surgery team. They examined me, and after all the horrible prep I'd endured, told me that I'd been left so long the cyst had drained so much they wouldn't operate after all and I'd have to go in for an elective procedure. It took a further 6 hours of being starved while everyone else on the ward ate breakfast and lunch (they made a mistake and had me listed as nil by mouth even after my op was cancelled) before being discharged with a few packets of antibiotics. I was turfed out by the terse ward nurse, dizzy and not quite able to to walk straight (but then again I hadn't eaten in 16 hours).

    The nightmare wasn't over though. I got 4 days into Flucloxacillin and Metronidazole, and I was out of my mind with pain, nausea, breathlessness, exhaustion that kept me in bed all day, and to top it off I dropped almost 5kg. Turns out I have issues with penicillin. My GP swapped the Fluclox for Clarithromycin. This gave me a terrifyingly violent reaction, so I couldn't take that either. This was not a happy place, but at least once that week was over that would be it until surgery.

    Of course not. The cyst grew back in less than a month and started draining a little but not visibly infected. I ended up back on Metronidazole as it was assumed I'd tolerated it better and the GP assumed it would be best to take some after the drainage. This time I got 5 and a bit days in before the pain was so bad I was almost taken back to A&E by my parents. Despite eating, I'd lost all the weight I'd struggled to put back on. There are honestly days of the last week I can't remember I was so delirious from the antibiotics. I hallucinated flies and cars coming at me. A GP told me to stop taking the antibiotics as there was no sign of infection despite the drainage that kept happening.

    So here I am, desperately hoping I'll be seen at hospital soon ("a few weeks" waiting list) though I have no idea what it is they're going to do to me. I can't wait around or ask for referrals elsewhere as I'm at my wits end trying to deal with the pain. The antibiotics terrify me, and I know I can't put myself through them again without being a risk to myself. I'm doing my best to keep the PS area clean and dry, washing with salt water twice a day to try and prevent any more infections and making sure not to sleep or sit leaning on the horrible lump that refused to go down either from draining or the pills. I'm scared of the surgery, but I need it to happen so desperately. See-sawing between pain in my back and endless nausea/stabbing stomach pain/days lost to utter medication-induced exhaustion... This isn't any kind of life. I feel like I'm losing my mind with worry.

    TL: DR: Recurring cyst, serious pain, severe reactions to all antibiotics tried, praying no more infections, waiting for surgery, hate being alive.

    Questions: Does drainage=infected/requires antibiotics? Is there anything that can be done to reduce the risk of infection? Should I be concerned that the only surgeon available to me in what is (hopefully) an acceptable timescale is a general colo-rectal specialist? I can't afford anything other than NHS. How do you deal with all these horrid things?

    Finally: I'm sorry to write so much. I feel I have nowhere to turn to to find these things out, and so much misery has already come of this humiliating condition. I'm seeing a GP next Friday (the earliest they could do when I booked on... Wednesday? Or Thursday? I've lost too many days to antibiotics). I don't know if there's anything specific I should ask about or that I need to do...
     
  2. lyn2014

    lyn2014 New Member

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    I'm just about to sign off for tonight as I've hardly slept the last few nights (sorry) but I will reply to your msg tomorrow with all the answers you are looking for.

    Surgery is daunting but please don't be worried or scared, it's the best thing for this awful thing!!!

    Hope you get a good nights sleep

    P.s Epsom salts are a wonderful thing for pa. I swear by them!
     
  3. Typo56

    Typo56 New Member

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    Hi lyn. That's fine, I completely understand. Lack of sleep is awful, and I've been suffering with it since the last lot of bad antibiotics wore off. If you can help me when you have time I'd be very grateful to know a bit more about all this. Sadly the different GPs I've seen aren't very consistent in their advice, and the members of the surgeon's team I've met haven't told me anything other than the name of the problem and that I'll have an as yet undefined surgical procedure eventually.
    I'll certainly take a look into the Epsom salts, but I do find it difficult to sit down in a bath what with my bad back, knees and now backside!
     
  4. lyn2014

    lyn2014 New Member

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    Hi there

    How are you feeling? Epsom salts have loads of healing properties so may help your other aches and pains or at least slightly improve your situation. I would lie in the bath on my side to try and take the pressure off, I even borrowed my sons baby bath sponge insert to stop it hurting my hips!

    I honestly don't understand why the hospital didn't operate on you when you were already in, been started, drip thing all set up and clearly in pain and feeling anxious!

    Have you had a referral to a colorectal surgeon? These types of surgeons are the best for this type of issue. I can totally understand your anxiety about this, I was the same too with my first one! It freaked me out so bad, the Dr gave me diazepam :-S not needed it since mind you :)

    So have you had this before? Has it started draining? If it's draining, it's infected BUT that should alleviate the pressure you are feeling there. The good news is, that your infection has somewhere to go if it's fraining. You can go to the chemist and buy a sachet of Inadine, some gauze, some saline water and some dressings. Clean your wound with the saline on some gauze and dry it with the gauze. Cut the Inadine to size (it will stain your fingers) and pop it over the abcess and cover with a dressing. Inadine is an antiseptic type thing that will help to draw everything out or you could push your gp for a prescription of aquacel. It's usually used for packing open wounds but you could place a small piece of it over the wound and cover with a dressing. Aquacel has silver in it and will pull everything out and aid with healing.

    I swear by Epsom salts!! I have recently moved house and don't have a bath but I dip my bum in a huuuuge bucket with hot/warm water with Epsom salts and I currently take tumeric capsules which have helped me over the last couple of weeks! Mine flares up and goes back down again when I start it all of that. Keeping it clean and dry is really really important and really helps prevent anything getting worse. Washing your hair can affect it too. Shampoo down my crack always results in a flare up. I have to lean over and flip my hair over my head. Best thing to do when you have a pa.

    Have you ever heard of a cleft lift? I'm on a waiting list for this procedure and hoping to have it done in the new year :) there's a surgeon hall of fame on the website and surgeons in red have performed the cleft lift. That's how I found the guy I've been reffered to. A colorectal surgeon is the person to be referred too, but if you wanted a cleft lift then you should look/ask the hospital if anyone has done one. You can be reffered anywhere to any surgeon you like. There is a pilonidal centre in Portsmouth if you are willing to travel unless it's nearby. It's nhs so it's just the waiting list that would take the longest part! Are you on any other medication? Could it be that that is interacting with the antibiotics and causing the side effects or is it an allergic reaction??

    The usual surgeries done are open or closed wound surgery. I've had both and both were fine. Yes I was sore and uncomfortable those first couple of days but it was nothing that co codamol couldn't sort out and I'm allergic to NSAIDs so I was limited on pain relief that wouldn't knock me out with a toddler to take care of!

    How are you finding sleeping? You can lie on your stomach with pillows under your hips for comfort or lie on your side with a pillow under your bum with you sort of in the recovery position if that makes sense?

    Sorry for the novel, but if you have any other questions, please feel free to ask me!

    X
     
  5. Typo56

    Typo56 New Member

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    Hi lyn.

    I'm still um... uncomfortable. Sitting is bad, lying down actually worse but only because of having to keep weight off my tailbone. Trying not to go into full-blown panic over the prospect of more pills, as they scare me more than surgery.

    They took my in for emergency I&D, but as they'd left me lying on my back with it draining all night there wasn't anything much left in to drain. Apparently the removal can only be done as a routine day surgery regardless of pain and/or distress and has a waiting list of "a few weeks". It took a month between A&E and seeing the consultant to be booked in for surgery, so I'm not sure what that really means.

    Yes, I've seen a consultant and been booked in for whatever removal procedure they feel like doing. Sadly they couldn't give me any details at all, not even on what might be done. Yikes, diazepam's not the friendliest of stuff! They considered giving me that in A&E, but realised I'd be even more freaked out by being given medication than if I wasn't.

    This only started happening this year. I was told it was nothing by a GP, but I it has drained a bit before the A&E diagnosis. I'm acne prone on my back and the PS is quite high up so I didn't think much of it (thankfully whatever infection that was didn't trouble the rest of me else I don't know what would have happened). Thank you for the advice, so far I've not been able to do anything about it or had it dressed properly. Knowing things like this would definitely help in future. Another question though: if it's draining, does that mean it's antibiotic time? One GP thought definitely yes, another and the local nurse said only if the site looked inflamed/temperature/radiating pain. I'm pretty desperate to stay off the pills, especially when I can never finish a course (I've never felt so irresponsible in my life, even when the GP tells me to stop taking them).

    I'll have to try the salts somehow. I've had to wash my hair separately for years, and am already am extra careful about shampoo and body wash (allergies galore!), but maybe I'll take a look into finding something even milder just in case.

    I have thanks to this site. I don't think I have many options at the moment, having been scheduled for the surgery before I've found all this out, needing to go through with it asap, and being left pretty much housebound by the pa as sitting on a bus or car seat is agony. Unfortunately a journey to Portsmouth is a bit of a stretch even if I wasn't in pain. I've seen the surgeon I've been sent to has treated these things before, but it's not his specialist subject and I don't know his method. Hopefully he's not too big on the "cut wide, cut deep" mantra I keep reading about! Whatever happens, I just need this thing gone and can just live in hope that it stays gone afterwards.
    I'm on two pills for GERD/gastritis treatment, but have been assured that the only drug I must avoid is Erithromycin. I've always had problems with penicillin based ones (something that runs in the family), but they were at such low doses it was more of an annoyance than debilitating so the doctors just shrugged and kept prescribing them. The high dose ones are like little poison pills making me worse with each dose! It could be an allergy, but the GPs treat me like it's all in my head. I'm told that next time they'll try my on Augmentin, but I've seen that's amoxcillin based. Honestly I'm terrified.

    Goodness, how did you manage? I'm sworn of NSAIDs because of my stomach and co-codemol knocks me out, so I hope paracetamol still works. I know I'll be scared whatever happens, but fingers crossed.

    I agree with you from earlier, the hip bruising is a nightmare. Yet to find the right combination of pillows to ease it for sleeping! Lying on my front is off limits (GERD, lower back collapse... I feel like a walking medical dictionary at the moment!) but I'll try out the side recovery position you suggest.

    Don't be, I know I write too much in forums. Thank you for taking the time to write everything out for me, it feels like a lifeline to actually know some things about coping. The antibiotics and surgery aftercare are what really worry me, but I'll just have to see how it goes and try not to freak out too much this week.

    You are a very kind person, thank you for helping this nervous newbie!
     
  6. lyn2014

    lyn2014 New Member

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    Did you bump your tailbone or tailbone area earlier this year? I would say if its draining, that you would need antibiotics. Augmentin are a good shout. I've had them before, the tablets are quite big but I took them in halfs so I could swallow them easier!

    I my first operation on paracetamol, I was uncomfortable but I coped ok. I really only took the stinger co codamol this time because I had a toddler to look after and knew he would want to do more active things and I couldn't lie around as much.

    You've taken all the right steps in dealing with it. On the morning of your surgery, ask your surgeon questions like what procedure am I having, how many of these surgeries have you done, what is my recurrence rate, when do I need my dressing changed, will you organise the community nurse or do I have to do that myself?

    To be honest,- surgeon that digs deep and wide means he will be taking away any infection plus a bit extra so it hasn't tracked any further and gives you a lesser chance of recurrence. What size would you say your lump was?

    I was absolutely fine coping with recovery and a toddler on co codamol, what is gerd? NSAIDs give me gastritis! It was actually brutal. I was so bad with it, the emergancy Dr thought I was in labour! Never taking anything like that again!!!

    It's so much easier said than done but honestly do not worry. I would bring up at the gp how much pain you are in, some discomfort with a cyst/access is normal but you sound like you're in serious pain so I would be asking the gp for something a bit stronger, if you knocks you out a bit until your op, that must be better than suffering!

    Xx
     
  7. Typo56

    Typo56 New Member

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    I have an oddly curved spine, so I've bumped my tailbone constantly (public transport with their hard seats and sudden movements being to worst offenders). It got a proper smack two days before the A&E incident, so I figured that drove the cyst to go from just awkward to whatever level of bad it's reached now. Eek, not what I wanted to hear but it can't be helped. I'm not in a good way for taking antibiotics every 2-3 weeks, so I'm hoping I can keep it stable until the surgery happens.

    Thank you, those are definitely useful questions to try and remember! And reassuring I suppose, scary but reassuring. The lump changes even without draining, but at the moment it's probably about 3.5cm across and not as um... full? as it has been since I've been keeping the weight off it.

    It's Gastroesophageal reflux disease. I'm told the drugs for it are only really effective for 12 hours, so to be protected during the day means allowing it at night. I'm supposed to sleep sitting up to help with that, but that's not really possible at the moment. Yikes, even over the counter drugs can be nasty. It's frustrating when things like ibuprofen used to be really effective, but having to stay away from them to avoid, well, what you describe. I couldn't imagine dealing with this at its worst and looking after someone so young (and presumably very, very active!).

    I honestly rather have the pain plus some reassurance it'll be over soon. Sometimes I think I'd rather die than take another antibiotic or strong painkiller. It's like being trapped in your head while your body suffers all the side effects, disconnected from it but also really horribly aware. Living with the memory of it feels as unbearable as living through it. While I told my GP about it bluntly, I cry without meaning to when I remember the 9 hours of Clarithromycin-induced horror. I'm pretty weak at dealing with things like this. Stupid I know. Sorry. Maybe there's something else they could suggest. I'll just have to wait and see. Fingers crossed the hospital will get in touch soon.
     
  8. lyn2014

    lyn2014 New Member

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    Hi there

    So sorry, my internet shut off but that's me up and running again!

    The good news is that your abscess doesn't sound too big, and the fact that it's draining on its own is a good thing - the stuff has somewhere to go. If you can get to the chemist, buy a packet of Inadine and place that on it with a mepore dressing. Clean first, cut the Inadine to size and pop a dressing on over it and leave it for 2 days.

    I'm so sorry t hear you suffering with this, physically and emotionally. Have you told your gp bow your feeling? I'm not a Dr or anything but it sounds like you have ptsd with this pilonidal issue. Could you ask your Dr for diazepam? Nothing major but 2mg would be enough to take the edge off. Do you feel anxious? Do you feel like the hair on the back of your neck is standing up? You are NOT weak! Not at all!!! The diazep would take the edge off those feelings for you to take some paracetamol and go for a nap to let your body recover.

    Oh God, gerd sounds awful. I had to sleep sitting up with the gastritis. The first lot of tablets they gave me never worked and the peptac made me sick! Conditions of the stomach and oesophagus are horrific! I would love to take ibuprofen but I don't want a reaction like last time! Mind you, it was naproxen I took but they're in NSAIDs family. Never again. Awful things, all these years and never knew I was allergic! I used to take ibuprofen years ago and thought it was normal to have a sore tummy but the pain from naproxen is indescribable.

    My son had only just turned 2 wen I took that reaction to the naproxen and was nearly 3 when I had my op there. They're so active at this age!
     
  9. Typo56

    Typo56 New Member

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    Hi lyn, that's fine, things happen! I really appreciate your advice.

    It's not draining, it's just gotten smaller. Perhaps it was inflammation? It's happened since I've stopped lying on my back at night, which means serious lack of sleep from the leg and back pain, but if it keeps this thing down I'll just have to stick at it. Sitting on a soft chair or car seat is absolute misery still though. I'm going to try and find out when the hospital might see me. I'm not sure how long my joints can take this punishment, but it's a darn load better than antibiotics.

    I would tell my gp, but I only sort of have one. The surgery re-arranged my appointment recently so it was with a locum who was rather unsympathetic (they've treated me once for an infected cut and actually recoiled with an "urgh!" and told me to see a beautician for my skin, so I'm not all that sure they would have been able to help with the whole backside problem anyway). Doctors have tried to persuade me to take sedatives and antidepressants of all descriptions, but my most recent GP (who actually takes the time to talk to me) decided I would probably be more distressed to be forcing myself to take them than if I didn't! Sorry, my health is a bit of a tangle. Pills are scary, and recent events haven't convinced me otherwise. As long as I can go without the antibiotics I'm hoping I won't need to worry about sedatives, at least for now.

    The worst thing is not knowing it'll be bad until it happens then just having to hope it's not too bad or that someone can help you! It's a shame there's no test for these sorts of things. Everyone says ibuprofen/naproxen can just cause a bit of a stomach pain, but what's normal? A hot water bottle feels a lot safer if it's stomach or back ache these days!
     
  10. Typo56

    Typo56 New Member

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    I think I spoke to soon about it going down. A few hours after my time of month started (wtf body, haven't had one for over 6 months and you chose to start again now?!) the abscess had doubled in size. 24 hours later and it's still getting bigger. I found out the hospital had made a mess of my referral, telling me it'd be urgent and I'd be seen in a few weeks. Turns out they'd put me in as non-urgent and it would actually be a few months! Managed to see a GP this morning who said they'd try and get me moved up the waiting list because of the constant every-3-weeks re-infection, but knowing now that the surgeon only works 2 afternoons a month for the NHS it still could be a long wait. I don't really have the funds for private treatment, and even if I could get them together I'd need to get to see the GP again which is an impossible task in itself.

    I've also been handed a prescription for Augmentin, which I said I wouldn't take and that I thought I'd be a danger to myself if I did, but the GP said they had other patients waiting and shooed my out. I can't take more antibiotics, not after the last two times. I keep being told penicillin would be bad for me because of previous reactions, but this one IS penicillin so... I just don't know. It's not bleeding or hot, so maybe if I'm careful with myself for a few more days I won't need to take them. I can't put myself through that again. I feel like I'm losing my mind.
     
  11. Typo56

    Typo56 New Member

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    Another update. Just back from hospital following semi-emergency I&D (semi because they had no beds on Monday, left me in pain until Tues afternoon!) The surgery went fine, and some heavy dose painkillers in recovery made it barely noticeable. Had to stay in a full day because of the anesthetic/painkiller combo let me barely coherent (the ward was full of very sick people screaming all night, and I don't recommend hospital food... and nor do the staff, who whip it out from under your nose before you've even had the chance to pick up a fork!). Everything going well enough until packing the next day. Felt like I screamed the ward down. I'd only been given 2 paracetamol 2 hours prior to the dressing change. I was offered codien, but know from past experience that all it does is make me drowsy and have hallucinations while still being in pain. They gave me one after tthe dressing change to try and help, but the pain didn't subside for a good 3-4 hours. Local nurses can't see me every day, so my notes now say the dressings should be done every 24-48 hours though I worry that's more for their own convenience. I've got 3 days worth of tramadol which I'm hoarding until the next dressing change. They also had to swap from mepore to something else, as the mepore just kept falling off! Not exactly filled with confidence. Before surgery I was told it'd take 15 minutes and I'd be healed up in 2 weeks. Post surgery, and though I'm told the abcess was very simple to treat, I was out for 2 hours and it'll now take 6 weeks to heal. Can't wash, can't sleep, can't sit, can't eat... Not sure how I'll cope tbh. Praying that there won't be any need for further antibiotics or physical intervention in this part of the process :/
     
  12. Typo56

    Typo56 New Member

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    Almost healed up now it's been almost 3 weeks since surgery. I had to stop the tramadol after a few days as it was making me really quite ill (possible seratonin syndrome, lovely). For the most part just had to bite my tongue during dressings, although my local walk in centre could give me gas and air (GP surgery doesn't have it). At 2 weeks post I&D I started sitting on chairs again, however a few days later I noticed a lump beneath the dressing. I think there are 2 areas now, both small but quite sore. The nurse who packed the wound suggested it could be scar tissue. I don't know what to think. Each flare up happened 3/4 weeks apart, roughly at the same time as my period. I'm afraid, especially now it's coming up to 3 weeks and with Christmas coming up and it having turned quite cold. If I need any help from the GPs or hospital... I don't rate my chances at this time of year. If I did get through, I'd probably just be sent away with more useless antibiotics and painkillers.

    Today I'm meeting with a surgeon who has me down for excision (and possibly primary closure). This I am not so keen on, but do I really have any choice? I can't afford private, nor can I afford to travel to Portsmouth for treatment. Since the flare up leading to constant antibiotics with bad reactions, rushing to A&E and post-I&D recovery, I haven't really been able to earn a great deal. It's probably just a paranoid feeling, but being underweight (antibiotics and the I&D certainly haven't helped with that) I worry that there's not that much or me that they can cut out without making things worse, like leaving a pit of scar tissue. Can scarring get re-infected? But then again I could be told not to bother with surgery unless it gets really bad again, which is also unacceptable. How can I get on with my life with this threat hovering over me? Really scared, but I guess these are all things to pester the surgeon about...
     
  13. Johnathan Irons

    Johnathan Irons Very Helpful

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    Hi, I feel for you - I hope you're doing okay. The amount of antibiotics they're giving you is dangerous. Not only are you having reactions from them but eventually the bacteria can become resistant to them. Make sure you tell each doctor/surgeon what course, and how many, antibiotics you've been on since this started.

    I need to be quite blunt with you here. You have two options:
    1.) You can be moved up the NHS waiting list and get a surgeon, who's probably inexperienced, for pilonidal. He will perform open excision/closed excision. Both have around 60%/70% success rates..... Probably lower in your case because it seems to be more advanced. If it does come back, you're back to where you started. There's a few people on this forum who have had around 7+ of these open/closed surgeries for this condition. Which quite frankly is inhumane.
    2.) You go private and get this sorted. I read your previous posts - I understand you can't afford it. But you're at a crossroads here where you can get it for free with the NHS and it possibly reoccurring or pay privately and have the best possible chance at recovery.

    The Spire - Portsmouth have a fixed rate (£2281 - not including consultation). You can take out a loan and pay for it that way. I'm saying this because my pilonidal started when I was young but I ignored it for around 16 years - until this year. I came to the same crossroad as you except I don't live in England. I had the option of getting a free wide excision or paying for a loan, flying to Portsmouth, getting a cleft lift and giving myself the best possible chance at getting rid of this disease.
    Because I left it for so many years the sinus tract grew under my skin which left me with a 14cm incision - imagine how much skin/tissue they would have removed if I had opted for the open excision?

    I'm now exactly a week post cleft lift op and for the first time in I don't know how long - I feel great. Please consider it, don't let this disease consume your life.
     
  14. Typo56

    Typo56 New Member

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    Hi Johnathan, thanks for the reply. I hope all is going well for you post surgery. Healing up can be a worrying time, but fingers crossed for you!

    Doctors are far too keen to throw antibiotics at people! I am now refusing them for this problem unless something changes, like a post op infection or another round of blood poisoning (though of course I'm hoping it will never come to either of these!) . There's no point treating a closed infection with these drugs that do absolutely nothing.

    You're right. My GP tells me it's very common for people to need multiple excisions before they finally get rid of PD, which sounds utterly ridiculous. We're constantly told the NHS is losing money, and I'm not surprised in the slightest considering they use the cheapest drugs until (or even though) they're ineffective or put people in for multiple surgeries when a better treatment could prevent it ever coming to that. I don't think mine is that advanced (or at least I do trust the I&D surgeon's opinion that while it was bad it could be far worse) but regardless getting it treated now is a priority.

    A loan's not an option for my circumstances but I should be able to afford a second opinion at least. NHS Consultant #1 said no pits (which is stupid considering the discharge, bleeding and general discomfort), so no surgery required. NHS Consultant #2 said multiple pits, must have surgery. My GP said I'm going to have to have surgery for it sometime in my life, though it's odd that 2 consultants can't see the same thing! The NHS have messed me around so much I feel I've lost what little faith I had in them (and the things I heard in hospital will haunt me for a very long time). I may still have to have their surgery but I want to know for certain it's necessary, is in fact what is best for me, and to be told this by someone who knows about PD. I'm a little stuck with the whole referral process though, so if anyone knows how to go about getting a private appointment I'd be very grateful. Do you need to be referred by a GP? Mine said it's unnecessary unless you need proof for insurance purposes.


    On a positive note, I'm told I only need one more dressing check up. I'm told I have a big, scar-pit but luckily the surgeon cut the abscess very high up. As long as it can't spawn another abscess, I couldn't care less cosmetically! There's definitely a hard mass beneath the wound. It feels different from the old abscess, like it's numb beneath the skin. It doesn't hurt thankfully, it's more like it was at the beginning of the year before my problems began. However the pitted area feels like a mass of scabs to sit on! So is this scar tissue or an oddly numb abscess? I wish I knew if this was normal or not, but no nurse, doctor or hospital consultant seems to know.

    Another aside, the meeting with the surgeon was a lie. My PCT surgeons don't do clinics, nor do they discuss treatment any other time than on the day which tbh is shocking as my hospital gets you to sign consent forms before checking in to day surgery (no form - no entry). I met another consultant who couldn't tell me anything about the excision process, who admitted himself that our appointment was pointless and that actually it shouldn't have been made for me. The NHS really needs to get their admin stuff together. I refuse to consent to a procedure that has yet to be discussed, let alone decided upon. I am certainly not allowing primary closure if I can help it.
     
  15. Johnathan Irons

    Johnathan Irons Very Helpful

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    The pits are very clear. If you have a loved one, get them to check or if you can angle yourself in a mirror. Very small, but noticeable, pin holes in the cleft. I find that odd that the 2 doctors couldn't have the same answer. Very worrying.

    I'm not sure about the hard surface you're feeling only a doctor with experience in pilonidal will have a good idea what it is but even then they can't be sure unless they open up. It could be scar tissue or another one forming - keep an eye on it.

    Miss Senapati does both private and public surgeries. Maybe if you were to book a private consultation and then asked to be put on the public waiting list? She seems to be the most experienced person in the UK on pilonidal. You can't contact her directly but you can contact her secretary (Mrs Pat Silvester). If you go onto 'The Spire - Portsmouth Hospital' website and search 'Miss Senapati' all the contact details will be there. Her secretary will explain both routes you can take but obviously the waiting list for the NHS is extremely long.

    And yes, your GP is talking through his hole. You do need a referral letter before seeing the consultation - regardless of insurance or not.

    Primary closure is a closed procedure. I think you mean 'open/wide excision with secondary healing'?

    My recovery is going very good.... Well, it seems like it is. I won't know for sure until my first check up on Monday.
     
  16. Typo56

    Typo56 New Member

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    I wondered if it was only really visible during a flare up, seeing as when I was told multiple I was in the middle of one. I would feel more concerned, but I had little faith in either of the general outpatient consultants to begin with.

    That sounds like the best route for me. I will try to get through to them during the week and work out from afterwards what I should do regarding private fees vs NHS. Thanks for the pointers! I've never felt I had to go private before. I'll also bother my GP for the letter, he said it'd be easy enough to do if I passed on the name of the surgeon. Fingers crossed.

    Ah, it's more that if I end up being forced into being cut up by the NHS, I refuse the primary closure part which I've been told is the most likely scenario in my case. Stitches might sound better in terms of healing and lack of packing, but the post op infection risk is so much worse and healing problems seem to be very common especially regarding the drainage part at the base of the wound. Packing from I&D was an utterly hellish form of torture, only just preferable to weeks on antibiotics with all their side effects. I don't know how well informed a decision it is, but unless someone can give me hope otherwise I am honestly too afraid of having midline stitches!

    Maybe no news is good news, when it comes to lack of symptoms. I hope it goes well for you.
     
  17. Johnathan Irons

    Johnathan Irons Very Helpful

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    No once pits have formed - they stay there until removed.

    I think you're a bit confused - primary closure is with stitches. But the ONLY closed procedure you should go for is the cleft lift. There is closed excision but that has terrible results. If you look at my thread I compare a week into a I&D to a week into a cleft lift. I haven't gotten any drainage yet and it all depends on the person but it is much better than any other option available.
     
  18. Typo56

    Typo56 New Member

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    Yes, it's impossible for them to come and go, but I've been told something quite interesting (for lack of a better word). My sinus openings are more like lines than the usual circular pit. I had a final check up with the nurse post I&D today and was told that while the wound has healed up nicely, the top of the cleft area has come up red and sore looking (it has been bothering me for some time, but with a dressing over it there wasn't much that could be done). On closer inspection there are at least 2 linear pits which are now beginning to ooze. Urgh. The lump I could feel that started at 2 weeks post op has gotten quite a bit bigger, so putting these two together I'd guess it's reinfected. Curious that the pits are only visible during a flare up though. That would explain why getting diagnosis has been such a literal pain in the bum! I'm quite afraid that I'll end up having more antibiotics forced on me, or another I&D. At least I know now to ask for the strongest painkillers they can give me before wound packing.

    My "fact sheet" says the wide excision operation cuts out the damaged tissue, then it's left it open or stitched with "primary closure" hence me using that term. Yes, the only info I have is a photocopied fact sheet. So going with your advice, I have an appointment to see Miss Senapati for my second opinion in two weeks time. My GP is not best pleased, he told me there was no point getting another opinion on the NHS as it would be the same (although the same as which opinion I don't know) and tried to put me off going private. He's now refusing to check the wound even though the nurse asked as he thinks it would "complicate matters". I'm quite upset by suddenly being treated offhand, but I should be used to it by now.

    Not relishing the though of the drive to Portsmouth with this lovely new abscess. Nor having to sit through Christmas (maybe I should stand through it instead!) Of course just as I make this appointment, my local hospital says they can do surgery next week. I had to respectfully decline until after my private second opinion, to which I got a bit of a telling off. But the way I see it is the NHS has no right to bully me into a procedure they won't even discuss beforehand, nor do they have the right to tell me I must not go private or else. To my knowledge tehy aren't allowed to do that. Also the thought of spending time in hospital at this understaffed time of year is really frightening (I know they'd want to keep me in due to my weight and blood pressure - they always do).
     
  19. Johnathan Irons

    Johnathan Irons Very Helpful

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    You need to remove them from the equation. That sounds awful. They're trying to prevent you paying private? My GP did the same. I demanded a referral letter, if he didnt, I would have reported him.
    Primary closure is with stitches. Or closed first time. Do a bit of searching on this disease from academic websites where you can find detailed and accurate information.

    I'm so glad you're seeing Miss Senapati, she is lovely. She is very experienced and will be able to give you accurate answers. Don't be worried about the drive, I had to get a plane. It's not that bad - bring a very soft cushion. I found they're better than those expensive tush/coccyx cushions.

    The other surgeons won't entertain the cleft lift because they're not bothered or not skilled enough. It probably costs the taxpayer more money with a wide excision as the wound needs to be packed daily. The packing they use can be quite expensive.

    Anyway, let me know how the consultation goes. I had my cleft lift 2 weeks ago and I'm pretty much healed now.
     
  20. Typo56

    Typo56 New Member

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    I'm pretty sure there's a right to get a second opinion regardless of provider. GPs might know more about medicine and health, but I'm coming to think they don't always know best. Not that I do either, but I'd like the chance to make an informed decision.

    I'll try not to worry too much! Thanks for the tip, I haven't even been able to find one of those special cushions anyway. It'd cost a fair bit too for all the painkillers/sedatives I'd need to get through something like that. I hope that one day none of us have to go through that sort of thing.

    Healing in 2 weeks? Wow. That's faster than I've heard was possible! Very hopeful :)
     

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