Please help! Newly diagnosed and considering the Karydakis procedure.

Discussion in 'Pilonidal Discussions' started by newdx, Oct 16, 2011.

  1. newdx

    newdx New Member

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    Hello,

    I'm newly diagnosed and I'd really appreciate some advice. I was so glad to find this site- there's really not much information from the patient's perspective out there.
    OK, it says to give as much information as possible, so here it goes:
    I'm 21 years old and I had an acutely inflamed pilonidal abscess 1-2cm off the mid-line on the left, about 3cm down from the start of my cleft. It was a fairly scary thing- it developed rapidly (I had no idea I had a pilonidal sinus), within only a week, and was really painful and red (overlying cellulitis). I had surgery in which the abscess was lanced, drained (no heat curettage, my surgeon said, just mechanically scraping everything away) and left open to heal by second intention. The wound was ~4cm deep and ~1.5cm across. The nurses and doctors said they could see my muscle. I had to have it packed pretty much every day for 10 days; it was leaking a lot of greenish fluid but the wound itself, they said, was clean with no signs of infection. One good thing, I guess, is that all the nurses and doctors said I heal really fast- they stopped packing my wound 2 weeks post-op. I'm 2.5 weeks post-op now and doing well.

    I've been back to see my surgeon and the stats he gave me (data from the Royal Australasian College of Surgeons) are pretty much what I've read online: 40% recurrence after the incision and drainage I had; only 5-15% recurrence after excision and repair with re-constructive flap surgery. The operation he does is the Karydakis procedure (I've read a lot about modified Karydakis and Bascom here, I'll have to ask him for more details next week) and he said it should take 3-4 weeks post-op to heal, and it'll be a closed wound. He described it as flattening the cleft and moving the scar to the side. He's made it clear it's an optional procedure for me to have, but that there is a high recurrence rate, usually a few years after the operation and that the sinus is likely to be enlarging as time goes on (at the moment it seems I have just the one tract).

    I'm a student and I spend a /lot/ of time sitting and studying so I'm worried about recurrence- 40% is pretty high. I'm also going into the final (and incredibly tough) two years of my degree and can't afford to have to get another incision/drainage during that time. I have uni holidays coming up and so I have enough healing time to do the operation. For the incision and drainage, I was under general anaesthetic and there were no complications, so the general anaesthetic part doesn't worry me too much.

    So sorry this was so long! Thanks for persevering :) I've been reading some of the posts here and the number of people who've had recurrences and the difficulty they've faced has made this all more real than just a number in a surgeon's booklet.

    I was hoping for some advice on what to do- should I wait and see if it recurs (the information booklet itself says that this Karydakis surgery is for "patients with recurrent, complicated pilonidal disease") or go ahead and take care of it before it has the chance to?
    This is also totally a vain thing, but the flattening of the cleft has me worried, too. How much different will it look? From the side, is there a significant difference?
    This sounds stupid even to me, but will sitting down be uncomfortable due to decreased padding? or nerve damage? There was some source that said patients can have nerve pain in the area after excision and numbness and all sorts of things. Has anyone experienced this?
    Thanks so much for reading (and extra thanks to anyone who replies!).

    Cheers,
    newdx
     
  2. Hound

    Hound Very Helpful

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    Hi and welcome.

    First off remember that 40 recurrence means 60% of people never have another problem. This site is full of people who have lots of issues, chronic recurrent sinus. Now it is true that surgery is best done early rather than late. I had mine 15 years before having surgery to fix it amd it was still a small incision but some people find their condition deteriorates very quickly, needing a larger surgery.

    Unfortunately with this disease you place your bet and roll the dice. There is no way to know whether it will come back, but I for one would not recommend surgery to anybody who just started to suffer. Surgery is for people who have regular recurrence and a hefty impact on their quality of life. I knew when it was time to get it fixed, you will too. You have a ticking bomb inside you that may or may not go off sometime. Your life is not in danger, the surgery is elective. If it keeps coming back you need to think about how you would cope abroad on holiday or during a family event. At this stage you aren't in a position to say you know it will keep coming back.

    The earlier you have the surgery the smaller the tract will be and the less it will reshape your bum. You cant tell mine is done unless I bend over and spread my cheeks! But some people with bigger incisions have more flattening. Either way it is hard to tell wi your clothing on. Imagine taking clay and filling in your valley area, so it is less deep, more like a peach.

    I have some numbness but not any that I would notice if I wasn't feeling the wound. It is a little tender for a few months as it settles, but I am back to normal life. It is a great surgery, if you decide it is time to get surgery.
     
  3. worriedmum2

    worriedmum2 New Member

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    Hi Newdx,

    Looks like you are an Aussie ! I'm looking for a surgeon in Australia, preferably Brisbane, with experience in the Karydakis procedure. Can you (or anyone else) give any suggestions ? My daughter has already had one failed surgery and after frequent painful flare ups recently is in desperate need of help.

    Any advice would be greatly appreciated.
     
  4. fearful

    fearful Very Helpful

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    Hello and welcome to the boards

    I would wait and see how tou get on before you have surgery. A have read I n a few places on the net that some people only ever need a lancing or that a lancing makes it dormant for a good few years and also lessens the intensity of the flare ups. I would see how you get on before having surgery. It might not be as bad but it may be, youl still have surgery as a option to fall back on.
    But most off all listen to you body, if you feel surgery is best for you, go for it
    If not, I would advice to keep the area squeaky clean and dry, and also look into hair removal, maybe laser if you can
     
  5. worriedmum2

    worriedmum2 New Member

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    Hi

    thankyou for your friendly helpful reply ! Actually the pain was so bad yesterday(and even a second course of antibiotics was having no impact) so a doctor did lance the cyst.
    As you say, last time he did this it did seem to subdue it for a few years. However there were still minor flare ups and in recent months it has been back with a vengeance, so doctors have been saying surgery is the best option at this point.

    I see that you have had cleft lift surgery.. was it yourfirst surgery ? hope that it will prove to be successful !

    This website is amazing have been learning so much reading here in the past few days.
     
  6. newdx

    newdx New Member

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    Thanks for replying and sharing your stories, Hound and fearful! You've said what a lot of people have told me, and I'm starting to pay attention. I was heavily focussed on the surgical cure, just making sure this goes away, ever since I was diagnosed. I'll have to take a step back and think a bit harder now. On the other hand, thanks, Hound, for telling me about your procedure. The way you describe the end results takes a bit of the scare factor out- basically that it doesn't completely flatten your bum (I know, it's vain, but...). I'm glad to hear the numbness isn't significant for you.

    Hi worriedmum2, sorry to hear about your daughter's problems. I don't know of anyone there, sorry. I'd say go to your GP and see if you can get a referral for a surgeon they know does this procedure and with whom their patients have had a good experiences with (that's what I did). Go see a couple of GPs for referrals to surgeons, too- skill and approaches vary, so the more opinions the better. It depends on your situation, too- if you've got/are willing to use private health care for this. Otherwise, you can present to the ED (I'd suggest a big, tertiary centre; you can also be treated as a private patient in a public hospital) and be seen there, but expect a wait. Good luck!
     
  7. fearful

    fearful Very Helpful

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    Worriedmum2 - Cleft lift was my first surgery, and iit was a lot easier then I thought! My mini fla3e ups were more uncomortable then the surgery. Wasn't in too much pain, nothing a few painkillers couldn't control and if it was to fail I would do it again no problem. How old is ur daughter? If she is having a lot of flare ups and having to have lancing I would look into surgery. I'm 23 year old female and its not somethinnyone! It does knock ur confidence and personally has changed me quite a lot. It is a depressing thing to have. I understand how ur daughter and you must be feeling, all I would say is find a good surgeon that can preform the karydakis/cleft lift/ pit picking etc done and put all this behind you, lifes too short to be dealing and worrying about this day in day out!

    Newdx - do look into other options if you can and if you really did want to have surgery maybe look into pit picking? And sorry didn't answer your question about the numbness and scar. Mine is a bit numb, but saying that I am only 4 weeks post op and slowly I am getting a bit more feeling back day by day. My cleft was flat for about 2 weeks post op and recently v noticed swelling has gone down and I have a cleft but only standing if I slightly bend it is flat. Also midline is slightly wonky(lol) but tbh I don't mind it is better then flare ups and a cyst, I'm proud of my cleft haha. Also with clothing on you cannot tell a diffrence atall! Looks absoloutly normal!
     
  8. newdx

    newdx New Member

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    Hello everyone,

    I've been back to see my surgeon a couple of times since my last post. I ran through all the different procedures with him and got his opinion on why they are/aren't good and why he will/won't perform them. It was quite a thorough list, thanks to this site! He was very patient with me, so I'm quite happy.
    Fearful, I asked about pit picking and my surgeon's opinion is that it's not effective because it doesn't address the underlying pathology of the disease. There was quite a bit more he said about it (more technical detail), but that's all I can remember right now and I was satisfied with his explanation at the time ^^ Thanks for telling me about the numbness. I was a bit freaked out when I read somewhere the surgery goes all the way to the sacral fascia! I thought the potential for nerve damage would be really high. I don't really mind the idea of not being able to feel the previously painful area :p

    I tried to get a second surgical opinion in the meantime, but was unable to find a surgeon to see me within my required time-frame. I talked to a lot of GPs instead. They all said it was personal preference as to whether or not I get the surgery. Most said "wait and see" would be what they'd go for, but the chronicity of this disease isn't appealing to me. I get what Hound was saying about knowing when it's time, but I don't have the same mentality. The idea of having to double-think overseas travel and so on sounds like letting this disease have far more control over my life than I'd like. I'm not afraid of surgery and I don't want to deal with flare ups, whether they're bad or manageable, and have the abscess recur. I'd just have to get it lanced and drained, wait till it healed, wait another 6 weeks post healing and then go ahead with a surgery I could've done from the get-go.

    My own family was greatly against having surgery at first; it turns out there was some miscommunication- when I said that after the Karydakis procedure, there'd be a ~5-10% chance of recurrence, they misheard and thought that my untreated pilonidal has a ~5-10% chance of recurrence overall, not the ~40% I'd said earlier ^^. After we cleared that up, and I talked them through the pathology of the disease and the way the surgery would be done, they were very pro-surgery. I guess we're a bunch of "fix it and be done with it" people.

    Basically, I've decided to go ahead with the Karydakis procedure. My main reasons were wanting to have the lowest possible chance of recurrence after my initial episode, wanting a smaller and more cosmetic surgical outcome (wrt scar and appearance), a deep dislike of the idea of future flare ups, and the fact that I currently have the best environment to go ahead with it- I'm on holidays, I have my family to support me, I have an experienced surgeon with whom I'm very happy and a great GP/nursing team. All these things point to me deciding to have the surgery, rather than adopting the "wait and see" strategy.

    I've booked it, and am about a week away from it. I'll be doing plenty of driving and going out and sleeping not on my stomach till then, as I know that being stuck at home is what awaits me for ~2 good weeks post-surgery.

    I'm not sure if anyone cares, but I'll keep writing updates here (it helps me achieve a bit of clarity).
    Cheers! :)
     
  9. worriedmum2

    worriedmum2 New Member

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    Hi

    well I'm back here again ! it has been a while but my daughter, now 24, is getting tired of living with this problem. While trying to finish university she just couldn't find time for surgery (aaaaand was also very fearful after her first failed surgery). However she is feeling that it is a debilitating problem which is negatively impacting her life (eg when its regularly too painful to sit and watch a movie).

    Wondering how a couple of years later your surgery worked out newdx and fearful ?

    Once again great to have this forum and website to turn to.

    Many thanks and best wishes to everyone
     
  10. newdx

    newdx New Member

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    Hi Worriedmum2,

    I'm actually not the best person to base your decision on; turns out, I'm the bad-luck outlier. I had a modified Karydakis done, recovered from it and needed to have a revision to the scar done to deal with pain (2012). That all went well (small operation, 10 days healing) and it felt fine. The area itself looks fine in profile and hasn't affected my clothing/swimsuit choices at all.

    Unfortunately, in September of this year I had another abscess develop, below and not associated with my Karydakis scar. Turns out I am just one of those people prone to getting these (despite being female, not hairy and not overweight). I had it incised and drained. I healed up fine from that, too (the joys of being young) and have no residual pain issues with the scar area.

    I have a new surgeon now (my first surgeon retired) and he's got the same mindset that I have- wait and see. I'm unlikely to have another abscess develop (then again, I was unlikely to have a recurrence after the Karydakis, too). This surgeon prefers a rhomboid flap surgery to deal with recurrent disease. It makes the derriere look pretty Frankenstein-like. Karydakis was nice and subtle and the 'gold standard'. This rhomboid flap is a far more radical surgery taking far more tissue out.

    I won't be doing it unless I have more abscesses form. I did the Karydakis with the mindset of getting this problem sorted, for good. It made sense for me at the time, and it makes sense for a lot of people. As a young person with good social support and the time to heal, having the procedure and lowering my risk of recurrence from 40% to 5-10% made sense. The procedure also came with the bonus of being cosmetically acceptable. Even looking back, I still think it was the most logical thing to do. I thought I was getting rid of it for good. Turns out, I'm the unlucky 5-10%. The next curative procedure is an even larger operation. I won't be doing it unless I absolutely have to.

    Even with my complicated experience, I understand that I am the outlier and the evidence still suggests the modified Karydakis procedure is the best way to go for this problem. So I would have to say I still recommend it (and hey, I didn't have a recurrence in the Karydakis area).

    You mentioned your daughter's first surgery failed. Which procedure was it?

    I hope I haven't scared you off too much!

    Cheers,
    Newdx
     
  11. Larry

    Larry New Member

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    My son's karydakis has all but healed after the wound broke down in three places. Thanks to the wound care nurse she has worked miracles. The scar isn't visable and there is no change of buttock shape. The wound acre nurse who has a PHD recommends using a betadine swab once a day on the buttock crack as a preventive measure. These swabs can be purchased in tiny packets and kept in purse/wallet.
     
  12. Melbourne_Mum

    Melbourne_Mum New Member

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    Hi Newdx
    So sorry to hear about your issues. My daughter will be having the modified Karydakis next week in Melbourne having had a similar story to yours. We are hopeful that it will be a once only experience. Gosh, you have had bad luck. We had never heard of a pilonidal cyst before so we're shocked to hear how common it is and how awful the treatment is. Hope you haven't had many flare ups since. I agree that the modified Karydakis seems the most logical way so that's what we're doing.
     

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