Cleft lift 5 years later

Discussion in 'I'm Healed and OUTTA HERE!' started by Imprimis, Sep 27, 2017.

  1. Imprimis

    Imprimis Helpful

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    Hi,

    I had my cleft lift surgery with Dr Lambert in McKinney, Texas, 5 years ago. I'd been living with an open wound for months from my failed second pilonidal excision surgery when I decided to make an appointment with Dr Lambert based on a recommendation from this forum.

    That surgery changed my life. I'd been dealing with pilonidal cysts since high school and had gone through two surgeries, open wound packing, so much stress and discomfort and embarrassment. This stupid disease made me depressed, made me gain weight, and ruined my sex life.

    It took a while for me to heal because there was a lot of scar tissue. I still sit on a coccyx cushion at my desk and for long car trips, because some of the lowest scar tissue isn't very stretchy. But I can ride my bike and do any physical activity without worrying about the cyst coming back or the wound to open up. I highly recommend it for anyone dealing with this issue.
     
  2. Luke Wade

    Luke Wade Helpful

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    Did your cleft lift ever split at any point? if so what did you do to help it heal.. my cleft lift split 1 cm today, surgery was 7 days ago
     
  3. Imprimis

    Imprimis Helpful

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    Mine never split after the cleft lift surgery was complete. I would recommend making an appointment with your surgeon so they can take a look.
     
  4. Susan Stanford

    Susan Stanford Helpful

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    check out Dr. Sternberg's website, expert on pilonidal disease, www.pilonidalsurgery.com. He explains that it is fairly common for the cleft lift to slightly split near the anal region but it is not a problem and should still heal well. My son's did split slight, about 1 cm, but it still healed well. Always good to have your own surgeon check it out too.
     
  5. Luke Wade

    Luke Wade Helpful

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    Dreading more surgery after only just having surgery, like.. what was the point of that? Very disheartened :(
     
  6. Susan Stanford

    Susan Stanford Helpful

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    This is from Dr. Sternberg's website under "Pilonidal Surgery FAQ":
    What is the likelihood of a complication?
    • Around 10-15% of patients may have some minor incisional separation near the anal end of the wound. This is generally not a problem and should not delay recovery.

     
  7. Susan Stanford

    Susan Stanford Helpful

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    My son's incision separated in a couple of places ~1 cm and it did not affect his recovery.
     
  8. Luke Wade

    Luke Wade Helpful

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    How long until he was fully healed Susan? And how long has he been healed for..

    I just feel like I'm never gona be without this. I'm doing everything I can. I'm keeping it as clean as I can too but I feel a nervous wreck about getting an infection. Also I was operated on by the best surgeon for cleft lift in Europe
     
  9. Luke Wade

    Luke Wade Helpful

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    Imprimis, you did say this on another post tho..

    "It's been three weeks that the bottom of my wound has been split,after a cleft lift five and a half weeks ago, and it shows no signs of healing."

    Conflicting with what you're telling me in this thread, confused.

    I'm in the same boat is all (2 weeks post op)
     
  10. Susan Stanford

    Susan Stanford Helpful

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    Luke, has your surgeon seen your wound? We live over 2000 miles away from my son's surgeon but I was able to send him pictures and ask questions for any concerns that I had. That was huge in helping me not be overwhelmed with fear. I needed to hear about every other day for the first 2 weeks that my son's wound looked normal. I understand your fear.
     
  11. Susan Stanford

    Susan Stanford Helpful

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    Luke,
    It has been one month and I know that sounds foolishly optimistic but I am sure that he is healed for several reasons. I am confident because I have been his primary caregiver for the 6 1/2 years that he has suffered from pilonidal disease which includes wound care for 4 prior excision surgeries. I am all too familiar with failed surgeries. We used professional wound care centers to help heal his surgical wounds after the 3rd and 4th surgeries. And they trained me in caring for his wounds on the days that he was not at the center. After my son's 4th surgery he gave up of ever being healed, but I refused to give up. I would not give up on my son's healing. I began researching and searching everything that I could find on pilonidal cysts - which is how I learned that it is not a cyst but an abscess and the more accurate description is pilonidal disease. That is when I found the cleft lift procedure and the research that proves its success. The late Dr. John Bascom developed this procedure and kept very accurate records of his patients and was able to follow up with many for up to 15 years. The results were clear that his cleft lift procedure was able to heal them all, though there is a very small percentage who had to have a second minor additional repair - very minor.
    I had suspected, and feared, that the continual wound healing problems for my son was because the second surgeon had removed so much deep tissue and that proved true. Bascom and Sternberg's research shows that removing the deep tissue creates dead space where infection thrives. The cleft lift is able to repair the problems created from wide excision surgeries. I have read Dr. Bascom's articles and research, Dr. Sternberg's surgical text and informative website, research by Dr. Steven Immerman, read the details of the cleft surgery and even watched Dr. Bascom perform one that is on youtube. I have actually read and re-read their articles and research. I am convinced that it is the correct procedure for pilonidal disease and their results with patients over 20 years proves it. Dr. Sternberg has performed the cleft lift on ~1500 patients and only 4 had to have a second very minor additional surgery. All of the cleft lifts, including those 4, have healed completely. The problem with the excision surgeries, and some others, is that there is a wrong view of what causes the disease therefore there is a wrong procedure to correct it. I know what my son has looked like post-surgery after 4 failed surgeries and it is miraculous seeing the healing take place this time. Please be encouraged. 7 days out and you are probably sore and tired. Do you have a drain in? Don't try to do too much. Listen to your body. Your body has been through surgery and it will take time to recover, you need rest. One of Dr. Sternberg's suggestions was to roll a single piece of gauze and put it between your butt checks. The incision side of my son's butt check got red and sore. That is the one area where the checks touch that the incision doesn't get quite enough air. That corrected the problem. Forgive me for writing so much and for giving you suggestions of what to do but I feel very motherly toward those who are suffering. You will heal.
     
    Luke Wade found this helpful.
  12. Luke Wade

    Luke Wade Helpful

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    Thank you so much Susan, your message is really encouraging, possibly the most encouraging thing I've heard since this all began. No one really seems to understand how agonising it is mentally, it keeps me up at night some nights "will this ever be resolved?" (This is my 8th year since my 1st surgery 'open excision'). It's been pretty demoralising at times with the wound healing and then breaking down every month/couple months. I had so much faith in the cleft lift and even though so many have said on the forum the bottom does tend to take longer to heal I feel pretty devastated.. but then again - I am a bit of a pessimist (which I blame on Pilinodal). I'm seeing her in 2 weeks - I'm dreading she will say it requires more surgery !
     
    Last edited: Oct 11, 2017
  13. Luke Wade

    Luke Wade Helpful

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    Drain came out on 4th day.
    It's now day 13 I've started attempting doing the gauze cigar technique today but I am not sure if I've got it in the right spot. I'm willing to try anything. I might add that the surgeon that performed this is the leading surgeon for PD in Europe.
     
  14. Susan Stanford

    Susan Stanford Helpful

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    Luke, I truly do understand your heartache. And I am so happy to hear that my words have provided encouragement. I have not experienced the physical pain but I have experienced the anguish and emotional pain. I did not realize how much fear and pain I was carrying for my son until this last surgery, it just stirred it all up from the other failed surgeries. I would text my son's surgeon a picture and ask him if the wound looked all right every other day. He probably thought it was a casual question but I was on the edge of falling into overwhelming fear, worry, and panic. The surgeon would always text back pretty quickly telling me the wound looked normal. He kept telling me that my son would heal. One day (in a phone call) he said, "Susan, trust me. I have done this before." He said it with patience and kindness. The reality that he had performed this procedure 1500 times with success finally stuck. And I went back and re-read the studies of our surgeon, Bascom, Immerman, and the textbook of our surgeon and became convinced as well. You will heal too. I'm so glad to know that you had an experienced cleft lift surgeon. But don't hesitate to call her and tell her your concerns you may just need to hear her say it - as I did.
    I think that the "gauze cigar" just provided a little space between my son's buttocks for the wound to get air and absorbed some moisture. Rest and eat well but don't feel that if you do one wrong thing you won't heal. My son and I both felt paralyzed by that fear from past surgeries. I am a proponent of nutrition and I do think that additional protein, Vitamin C, and zinc will speed healing - and a good multivitamin.
     
  15. Susan Stanford

    Susan Stanford Helpful

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    Luke,
    How are you? I've been thinking about you, just wanted you to know:)
     
  16. Luke Wade

    Luke Wade Helpful

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    Hi Susan, thanks for your messages and for thinking of me. You truely are a star.

    I saw the nurse today and she said it's healed substantially to the point it can't be packed!? I honestly could of cried out of relief. Let's just hope this is the home stretch - but yes I'm in a great mood.
     
  17. Susan Stanford

    Susan Stanford Helpful

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    So glad to hear! Good, good news:))
     
  18. COhelp

    COhelp New Member

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    Luke, is your wound still doing ok? I hope so!
     
  19. Luke Wade

    Luke Wade Helpful

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    Slight gazed area on the suture near bottom still, hopeful it will heal soon tho. I'm going to try dry it out
     
  20. COhelp

    COhelp New Member

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    Okay good, glad it hadn't gotten any bigger. So hard healing those lower areas.
     

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