My son's cleft lift 7/31/12

Discussion in 'Pilonidal Discussions' started by LILLY, Jul 28, 2012.

  1. monster696

    monster696 New Member

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    Hiya ladies
    gosh havnt been on here for a while but life is back to normal. Lisa was discharged on oct 28 and the scar looked amazing.
    I cant express how grateful I am to all the support I have had from everyone on here. It was a horrendous journey but we got there phew !!
     
  2. ROB6ERT

    ROB6ERT Very Helpful

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    I HAVE KNOWN ABOUT MONKEY BUTT POWDER FOR YEARS AND TRIED IT 4 OR 5 YEARS AGO, MY CONCERN WITH IT IS THAT IT WILL ABSORB SOME SWEAT BUT IT VERY QUICKLY TURNS INTO A WET CAKED UP THING AND I QUITE USING IT BECAUSE I WAS CONCERNED ABOUT IT CLOGGING UP PORES AND CAUSING A PROBLEM. I TRYED THE HAIR REMOVAL CREAMS ALSO, MANY DIFFERENT BRANDS FOR SENSITIVE SKIN, IT DID IRRATATE MY SKIN ALOT BUT I KEPT USING IT ANYWAY AND IT HAS CAUSED ME ALOT OF PROBLEMS WITH MY SKIN THAT I AM STILL DEALING WITH MANY YEARS DOWN THE ROAD, I THINK THAT I DAMAGED MY SKIN BEYOND REPAIR. I DID HAVE HAIRS THAT WERE GROWING BACK INTO MY SKIN AND A DR ADVISED ME TO GET LASER HAIR REMOVEL, AND THAT IS THE BEST THINK THAT I COULD HAVE DONE, I AM VERY HAPPY WITH THE RESULTS. I SWEAT ALOT ALSO AND LIVE IN FL., I JUST SHOWER 2 TIMES A DAY AND I DO NOT USE ANY POWDERS OR OINTMENTS ANY MORE
     
  3. Kay C

    Kay C Helpful

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    Yay glad to hear!

    Everyone's opinions vary and they have different situations- do what you feel is the best.

    One of the problems with wound healing in the cleft is there's too much moisture trapped back there, causing a buildup of bacteria & therefore slowing healing. From my perspective, if throwing on some powder can make things a little drier/less habitable for bacteria, i'll take it.
     
  4. LILLY

    LILLY Very Helpful

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    Roz I have been meaning to respond. That really is great news about Lisa. You both had a long haul with the recovery and I am hoping this is a thing of the past for both of you!

    On to sweat talk. Here's what's funny-much of my son's sweating problem has vanished. At the time his pilonidal showed up he had just started sweating like crazy. It was the first time his gym clothes would come home damp almost wet. That was when he asked to be put on prescription deodorant. He was 15 at the time. I'm guessing a surge of hormones really had an impact. At the time I just thought it was going to be part of his adult life ongoing. I never thought of it as a temporary situation. He's 17+ now and brings home dry gym clothes and has stopped using the prescription deodorant. I realize this isn't the case for everyone because those posting are well beyond adolescence, but it may give hope to the moms with adolescent boys having the sweat problem.

    On to powder talk. I still think it's a good idea. I was mainly interested in it for when he was working out. He did try it once and he said it was good but he didn't feel like he needed it now. I worried about caking too- my thoughts were a thin layer before a workout would be best and showering after the workout of course. I guess the amount you sweat would also have an impact on the powder's performance. I don't have a whole lot of insight personally since he didn't end up needing to use it. I do appreciate everybody's input though.:)
     
  5. Liberty

    Liberty New Member

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    Hi Lilly and everyone, it has been 18months since my son's cleft lift surgery and (touch wood) all is very well. For the first few months after the surgery I removed hair from the area with hair removal cream but he has been very resistant to continuing so for the last 8 months we haven't done anything. I completely understand his reluctance. It's not the most comfortable experience for an 18 year to have his mum removing hair from his bum! So I haven't pushed it much cos I've heard some doctors think it's unnecessary in any case. Does anyone have any advice or experience about this? How is your son Lilly? Thanks, Joanne
     
  6. LILLY

    LILLY Very Helpful

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    Hi Joanne!

    So, we are also just over 18 months out and still doing well(fingers crossed)!

    As far as hair removal I believe each person has to decide for themselves. There are arguments for and against. For those whose doctor suggests it, well, it isn't all that easy to keep up with. For those whose doctor has said it's not needed, I have seen a few go on to do it anyway because of evidence of ingrown hairs. I don't think there is a clear cut answer on this one.

    For us we did the removal in the beginning. We used a little trimmer. We tried the sensitive version of the cream once but even that was too harsh for him so we went back to the trimmer. I can't say we did it reliably for more than a few months. Now, just last week, I heard the trimmer running and it turned out he trimmed it himself because it was a bit irritated. Yes, some panic set it! What it seemed to be was that he had been on his bmx bike doing tricks for the first time in awhile and it probably got rubbed in ways it hadn't for some time. I've decided that we just have to play it by ear. I'm not forcing it on him.

    My son is also 18 now and we are getting ready for prom and graduation. Time has really flown by. I am trying to let go of my fear of pilonidal for him, and let him live his life. I guess that's what this stage of life is all about-letting them go out on their own-but boy it's hard!
     
  7. Liberty

    Liberty New Member

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    Thanks Lilly. It is a subject without a definitive answer isn't it? Good to hear your son is also doing well - touch wood, fingers crossed etc :). I totally know what you mean about letting go of our boys turning into independent young men. It has gone so quickly and part of the letting go includes trying not to be so afraid about all that can go wrong. It is hard as you say- so hard- but so necessary for their wellbeing. I guess we just make a choice and hope for the best - like most parenting decisions. Take good care and thanks again. This forum has been my saviour.
     
  8. LILLY

    LILLY Very Helpful

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    Two years.

    It's been two years since my son's cleft lift. It almost feels like all of this happened in someone else's life-and that is what I'm most thankful for today. I'm thankful that I found this forum, and Dr. Rosengart, and that this surgery allowed my son to get on with his life.

    I almost skipped posting today because I don't have much to add, but I know that people searching this forum now and for years to come will be wondering how all of these cleft lifts have held up through time. It's been two years and my son is well, and he isn't alone. There have been many who have come before and after us who have reported successful cleft lifts.

    To anyone new to this forum- if you are considering surgery please look into cleft lift. That is really the best advice I can give. It may be the quickest and easiest way to put your pilonidal issues behind you.

    To all of you I have spoken to over the years I hope you and/or your children are all well!
     
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  9. Linda2

    Linda2 Very Helpful

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    Hi Lilly - it is not so long for us yet, but things are good here too. My son is now a lawyer, having thought he was going to have to leave law because of his problems. He works really hard, sitting, driving and flying.
    I am almost scared to say this in case something goes wrong - I never talk of a cure. But one thing for sure - if it was not for the cleft lift, he would not be where he is today.
    Long may it continue for both our boys.
    Mega finger crossing.
    Linda
    x
     
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  10. Liberty

    Liberty New Member

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    Wonderful news here too! It's been 16 months since my son's cleft lift and all is well. Cannot find the words to express my gratitude to this forum and to our surgeon, Dr LP Cheah. We were being sent down the 'excision' path by our Doctor until I found out about the cleft lift here. Now that Doc knows about this procedure and has already recommended it to two other boys (that I know of). So so soooo grateful ❤️.
     
  11. LILLY

    LILLY Very Helpful

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    Ladies I'm so glad you checked in. I was hoping people would but I know everyone is busy and for some it is a memory they don't much want to relive!

    Linda, I am right with you on the fear to proclaim victory. I don't consider myself very superstitious but I guess that's just what it is-I have a fear of tempting fate on this one. I wouldn't dare post on healed and outta here. Crazy I know. Good for you that your son has found his path and completed school. Mine isn't sure yet but wants to have a career anywhere other than an office. It's a work in progress.:)

    Joanne, so happy to hear your wonderful news also. I think it's pretty amazing that your primary doctor is now passing on the news of cleft lift based on your son's experience. That is BIG. That's what it takes- lots of word of mouth- and we're getting there!
     
  12. Momof4

    Momof4 Helpful

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    Hi, I don't know if or when you will see this but my daughter is 9 & has just been diagnosed. She is scheduled for open wound on 9/24. After reading all your posts & realizing that Dr Rosengart was driving distance to us. I called this morning. Terry had me email him our story. I heard back from him right away. He told me not to worry & he would get back to me in greater detail this afternoon. I am nervously waiting to hear from him & see if this would be an option for us. Terry's one concern was that my daughter is so young & would be at a regular hospital not a Chikdrens. My husband is nervous in general. 24 hours ago we were set on what we had been told to do by our lead surgeon at Buffalo Children's Hospital. Now I have all the sudden questioned this. My husband said he is willing to at least travel to meet the new surgeon. Terry told us Dr. Rosengart can't see us until the middle of October.

    Anyways. Thank you for such a detailed summary of your son. If he had been 9 when this happened would you still have made the same choice?
     
  13. LILLY

    LILLY Very Helpful

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    Momof4 I'm so glad you are here and that you are looking into cleft lift over open excision. I know you are nervous and questioning but it's going to be ok. I have faith in Dr. Rosengart's judgement. If my son were 9 and Dr. Rosengart suggested a cleft lift at a different facility I would follow his suggestion. If Dr. Rosengart will do the surgery for your daughter I would say take the offer. He is truly exceptional. I will check back to hear what he says.:hug:
     
    Last edited: Aug 26, 2014
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  14. Jojo55

    Jojo55 Helpful

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    Lilly thanks so much for your updates ! And so glad it went so well for your son . M son is 19 and has type 1 diabetes and is having his first flare and is on a antibiotic right now and we are seeing a surgeon Tuesday . I have also found a plastic surgeon 3 hours a way that has done the cleft lift for ver 10 years .
    My son has never had lancing or surgery , he has a cyst that is quarter size red but feels hard around the red spot about the size of half dollar above his crack also has 3 or 4 pin size holes in the crack at top . I am thinking the cleft lift would be the thing to do first off , would you suggest the same thing ?
    Also do doctors do ultrasounds to see how big are if they have tunneled ?
    Thanks so much for your post they have been very helpful and has helped me decide which way to go for him
     
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  15. Johnathan Irons

    Johnathan Irons Very Helpful

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    Cleft lift is the best option in my opinion. Reading other's threads on here it seems to be the most popular as well.
    The most reliable way to see if it has tunnelled is when the surgeon performs the surgery. An experienced pilonidal surgeon will know what to look for. I've read that some surgeons use a dye on the tract to see if it has tunnelled.
    Prepare for you cleft lift consultation - go in with a list of questions about your sons condition. It wouldn't be a bad idea to ask the surgeon about the previous cleft surgeries he has performed. You will be able to gauge how experienced he is.
     
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  16. LILLY

    LILLY Very Helpful

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    Hi Jojo. Yes, I would always suggest pit picking or cleft lift over excision in all circumstances. Doctors can order imaging to determine the extent of the disease below the surface. Most do not order it and just address the issues as they see them during surgery. My son's first surgeon (not his cleft lift surgeon) had him do an MRI with contrast because he wasn't sure if his post closed excision wound was opening up because there was further disease left behind or if it was just an issue of non healing. That would determine if he needed more surgery or wound care. That was when we learned that he had a very large deep pocket of fluid. An open excision is what two different surgeons wanted to do- with the wound deep almost to the bone. That's when we went in search of cleft lift.
     
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  17. Robert Eden

    Robert Eden Very Helpful

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    Yes, cleft lift is the best option, and is the most popular HERE and with docs who have taken the time to learn it.

    Unfortunately, most surgeons have not taken the time to learn the procedure so just do excisions and let their patients suffer with the after-care, long recovery, etc. That's the most common procedure. :( Sad, yes.. but that's why we're here, to make sure people know about alternatives.
     
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  18. Jojo55

    Jojo55 Helpful

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    Thank you all so much ! And that will be what we do ! Although he is worried about not having a butt crack ! He said the pictures he has seen where the people just have a butt crack at the bottom looks weird , I said well it is what it is what do we need a butt crack for anyway ?
    Also he has 3 small holes in his butt crack at the top so those would be gotten also correct ? Did y'all have those ? And are they sinus tracks ? And does it look abnormal / weird after it is healed ?
    He also has a sit down job that he is scared he will lose if he has to be out more then two weeks
     
  19. Frustrated!

    Frustrated! Helpful

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    @Jojo55, I would be happy to send photos of my sons healed cleft-lift. He too was worried about appearance, but is relieved that it isn't as "weird" as he had imagine.
     
  20. Jojo55

    Jojo55 Helpful

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    Please do do you need my email ?
     

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