My son's cleft lift 7/31/12

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

  1. LILLY

    LILLY Very Helpful

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    Just some holiday wishes.

    I wanted to do an update to include our appointment but I am hopelessly behind on holiday prep. So- I just want to take a moment to say that I hope you all are able to have some holiday fun despite where you are in the pilonidal journey. Don't let the nightmare that is pilonidal crush your spirit!

    Merry Christmas / Happy Holidays pilo family!
     
  2. LILLY

    LILLY Very Helpful

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    5 months post op

    During this month we traveled to Pittsburgh for our follow up with Dr. Rosengart. He took a look at the incision site and said it is exactly the way he would want it to look. So that was great news. He said he still likes the idea of permanent hair removal. He also said though that even if we didn't keep up with hair removal he doesn't think we'll have a problem because his new cleft is as good as it gets as far as avoiding recurrence. I am just so thankful for Dr. Rosengart still that I want to give him a big hug every time I see him but I always contain myself. He told us to keep up what we are doing and continue to keep it clean and dry. At this point we are not doing anything special with the incision site, except that we never buy harsh or drying soaps. I know some have asked what we had done to keep the incision clean and avoid infection after surgery so I'll give a little summary.

    HOW WE CLEANED INCISION SITE

    We used Dove shower gel that is for sensitive skin after both closed excisions and the cleft lift. He would put a little on his hand and then lather it up and gently clean the incision with his hand. Don't cake the soap right on the incision-lather in your hand first. We did not use scrunchies or washcloths both because they might be too rough and because they can hold bacteria. Rinse thoroughly but don't sandblast the area. Always pat dry. Do your best to dry the area completely. I have read of others using a blow dryer on a low setting to dry the area, but we have never done that, and I don't think it's probably the best idea. We never used harsh cleansers that could dry or damage the skin either. For the majority of the time he washed once a day. Toward the end of the cleft lift healing when he was more active and still having some drainage we had him wash twice daily. That was more just because I felt like the area was "stale" by the end of the night-if that makes sense. It would just be obviously sweaty and seemed reddened by the end of the night so we would have him do a quick rinse off. I think common sense will tell you if you need that second wash. He never had an infection with any of his surgeries, but of course there are no guarantees against infection no matter how clean you keep it. Again I'm no expert this is just what we did and had success with.

    I guess that's really it for now. Just want to wish everyone a happy and pilo free new year!
     
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  3. Jaredsmom

    Jaredsmom Very Helpful

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    Lilly, I am so sorry I've missed your pre surgery posts!!! You and I have lived parallel lives in regards to pilonidals. Even down to going to the same surgeon!!!! My son had his surgery with Dr. Rosengart also. What a fantastic man, in spirit and in medical skill!!! An all around fantastic human being!! Jared's anniversary of his cleft lift is next month....he will be 5 years post cleft lift......and still pilo free!!

    I wish I could have been here for you pre surgery, because I know how scary it is....and the terrible worries that plague a mom......knowing you had dr. Rosengart looking after your son, I could have told you not to worry one single bit!!! Your son was in exemplary hands!!!

    Hugs to you, and congratulations to you and your son!!!:hug:
     
  4. LILLY

    LILLY Very Helpful

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    Thanks Jaredsmom and congratulations to you and your son on being pilo free for 5 years. I said this on your thread but I wanted to say it here too. I don't want you to feel bad for stepping away from the forum. You have given more than anyone could have expected you to and your words are spread throughout the archives. Your influence lives on.

    OK. I've wanted to say for awhile that I see many people come here and they are trying to find a way to differentiate themselves from us(or our loved ones) who have had several surgeries. They want to believe that we had severe cases and theirs are mild. Though I wish I could tell them that was the case it just isn't. I truly wish I could tell them they are exempt from complications because they have a small cyst. I don't know what picture people have in their minds of how this starts for people. I guess they imagine my son limping into the ER with a throbbing grapefruit sized protrusion hanging from his body and screaming in agony. That is not how it happened at all. He had a small bump at the top of his butt cheek. It looked like a boil, nothing else, no huge lump, no pits or sinuses. He probably would have ignored it if it hadn't been sore and had some drainage.

    When a highly respected surgeon was confident he should have closed excision I accepted that. As you can see my story is exactly the same in the beginning as everyone else's. I also thought if he was highly respected and confident that meant he was right. What I learned -and it was a big lesson-is someone can be confident AND wrong. These two things are not mutually exclusive.

    People want to believe that having one excision surgery can't hurt anything. I wish I could tell you that was true also. I've heard many say "I'll give it a go for my first time out-any surgery is better than no surgery at all." This is also false. Having no surgery at all CAN be better than excision in some cases. I say if you are in pain and have no other option to relieve it other than excision- you will have to take it. If you have one excision surgery and are cured with no recurrence that is wonderful. If something is missed you have just created a mess of trouble for yourself. Each surgery no matter how minor creates scar tissue. It also seems that each unsuccessful surgery drives the disease deeper toward the sacrum and lower toward the anus, making all subsequent surgeries more difficult. My son had two minor closed excisions but it seemed like after each his disease picked up speed. He suddenly had several draining rather large sinuses. It was like each surgery not only didn't cure him it had an adverse effect and escalated the progression of the disease. This is why I always say to people please read all you can. It is important to know all the facts before the first cut.

    Please understand I am not trying to scare you or really even influence you. I am telling you my story and it is the story of many. I am just like you only farther along in the journey. If anyone would have told me that that tiny butt bump would have led to all of this I would have thought they were crazy. It can start small and look very benign and turn into a nightmare of bills and surgeries. You each need to make up your own minds on how to manage your condition. I hope you will take extreme care with your decisions.
     
  5. UnluckyOne

    UnluckyOne Very Helpful

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    All the love in my heart goes out to you and your son, Lilly. I am seriously in awe that you have stuck around here for so long with only the intention to help people. You help me just as much as you help the others on the forum because you motivate me to come back on here every day. I know that I'm not alone on here.. Fighting against the doubt and the defensiveness on here is difficult. Sometimes I feel like since so many others think they don't need my help, maybe they don't.. So many times, I have wanted to walk away. I have wanted to move on from this disease and everything it did to me, especially because I am healed and able to do that. I think about how you've strived to help people on here, and I am reminded that that is a mission I have been given as well.
    Much love your way and just keep your head up. You and your son have gotten through this. It is not your job to help others, but you have opted to do so anyway. You have a golden heart. Don't let anyone dull the shine of it.
     
  6. LILLY

    LILLY Very Helpful

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    UnluckyOne I believe that we and our predecessors have saved many people pain and aggravation by continuing to talk about pit picking and cleft lift. This is not a fun topic to have to think about everyday and I think that breaks from the forum are warranted and even healthy, for all of us. Sometimes our input will have an effect and sometimes it won't. I don't want to see people live what we have lived, but in the end it is going to have to be their choice. It isn't easy seeing people go through it, but I think we are doing all we can.
     
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  7. Robert18

    Robert18 New Member

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    Hi lilly i just got a cleft lift about 3 weeks ago and it seems that your son had the same problem as me. My doctor had removed the JP drain about a week and a half ago and told me to pack it lightly till it heals. I went to go see him on monday and he said everything looked great and should be closed within in a week. My only concern is now it seems as though there a sticky like substance thats draining mostly from the top and a tiny bit from the bottom. Was wandering if you had any input on this thanks.
     
  8. LILLY

    LILLY Very Helpful

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    Hi Robert. First- congratulations on your cleft lift. I will say that sometimes things that seemed odd to me turned out to be completely normal. My son's drainage was mostly pinky clear and watery. He did have one part of his incision that had an opening that had to heal over and this area did produce a sticky fibrin(slightly yellowish) substance that would be visible on gauze. I think if you aren't seeing or smelling signs of infection then you don't have to worry. Our surgeon communicated with us through email. Do you have that option for when things like this come up?
     
  9. LILLY

    LILLY Very Helpful

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    6+ months post cleft lift
    1+ year into pilonidal journey

    I am a little late on a 6 month update. I don't plan on updating monthly after this unless there is something to report-probably once or twice a year- or if I have random ramblings I want to put down in writing. The truth is I don't have much to report with this update and to me that in itself is wonderful news! Other than discussions about this forum pilonidal is not part of our daily lives. My son continues on with his life with not much thought to all that went on last year. He is busy taking risks in extreme sports and I am busy holding my breath that he won't come home with broken bones.

    I wanted to say more in this update about what I have learned overall in this journey now that we are a year in. There seems to be certain questions that come up very often so I wanted to address those here where I do all of my other ramblings. I have searched these forums extensively since the start of this and I know others years from now will still be doing the same. So here are my opinions on some of the questions asked.

    1. I think I have a pilonidal issue what do I do?
    First, don't panic and try not to obsess. Many people become frantic when they start reading these forums.
    If you have found these forums at the beginning of your journey you are ahead of the game. Go to your regular doctor for a
    diagnosis.

    2. My doctor diagnosed a pilonidal and gave antibiotic will it work?
    Most people report that an antibiotic does very little but it may buy you some time to figure out your next step.
    Taking many antibiotics over an extended amount of time can cause problems but one course is not risky.

    3. What is my next step?
    Likely your regular doctor will have given you names of surgeons in your area and suggested you make an appointment for a
    consultation. Most random surgeons will not be up on the latest treatment for pilonidal conditions. The surgeons who know
    most about pilonidal issues are cleft lift surgeons. This does not mean you immediately need a cleft lift. A consultation with
    a cleft lift surgeon will give you all the information you need to move forward.

    4. Can I wait to get treatment?
    People seem to have pilonidal present in many different ways. If you are someone who has a huge lump and extreme pain that
    comes on quickly you will probably need to go to the ER for an immediate lancing. If you have an initial presentation that
    comes on more slowly you will have more time to figure things out. There have been people who have dealt with flare ups
    for many years and when they finally went for surgery their disease had very little progression. On the flipside there are others
    who sought immediate treatment to find that in a very short time their disease had progressed quite a bit. You will not know
    what category you fall into so delaying treatment may be a risk.

    5. Can I have it just once without it coming back?
    Yes. The reason I know this is it happened to my mother. She had one huge flare up in her youth. She had a lancing and never
    had another issue. So yes you can end up one and done. For this reason I probably would not go on to have surgery after one
    uncomplicated lancing. If that heals fully I would gather my information and wait. However, it seems from what I have read
    that most people who go on to have a second flare continue to have flare ups at varying intervals until they have surgery.

    6. What do I do if I am ready for a permanent solution(surgery)?
    The first thing you should do is check the list of surgeons provided on this websites home page under-finding a surgeon.
    This is a list put out by the site's administator and will tell you state by state surgeons who perform the latest techniques.
    These techniques are called the Bascom techniques and include pit picking and cleft lift. These surgeries are minimally
    invasive and give you the best chance of full recovery without recurrence. (The surgeons hall of fame is a good resource
    for personal testimonials but should not be confused with the official listing).


    Ok I think that's all of my ramblings for now. Again these are my own opinions based on my experience and all of the reading I have done.:)

    Robert18 if you read this please check in with an update. :)
     
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  10. Liberty

    Liberty New Member

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    Hi LILLY and everyone, there are no words to express my gratitude for the existence of this site and all of the wonderful people who post here. I am in Australia. My 16 year old son has been in excruciating pain from January this year until last week when he had a modified Karydakis procedure done by Dr LP Cheah. If it hadn't been for this site, we wouldn't have known about this procedure or who performed It in Melbourne. We were actually booked in to see another surgeon but cancelled at the last minute and got a referral for Dr Cheah. Lilly, you are not wrong about the emotional toll on parents as well as the children. I have been so distressed to see my boy in pain and unable to do all the things a teenage boy should be doing- including the rebellious stuff!! Puts it all in perspective doesn't it?

    Anyway, his pain is far less now but there is some light pink bleeding that the doctor thinks might be a gap in the wound- possibly from too much sitting too early. There was no drain inserted. We are seeing the doctor tomorrow. He has been fantastic. I keep in email contact with him and he even responds in the middle of the night. Very grateful to have found him.

    I am now concerned that he may not be ready to go to school in about 16 days- he's on holidays. We'll see how his healing goes. We really don't want to compromise the healing process.

    Thank you again...I can't believe so many people are suffering with this horrible disease. Wishing us all a speedy recovery.

    Warmest regards,

    Joanne
     
  11. LILLY

    LILLY Very Helpful

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    Joanne everything about your story sounds familiar. Too many of us have been through it. It is horrible that we have to fight so hard to find the right treatment! I'm so glad you were able to find a surgeon in Australia.

    I'm thinking what you are seeing from the wound is probably normal drainage. My son had similar and it did open the wound a bit to push the drainage out. After it stopped draining the wound closed and all was well. I think 16 more days will be enough time to be ready for school. After the first week the healing happens faster.

    Please check back tomorrow after your appointment, and try not to worry. :)
     
  12. Liberty

    Liberty New Member

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    Thanks Lilly. I was thinking the same thing about the fluid. Since he didn't put a drain in I imagine that the fluid has to find a way out. I hope it's that simple. Although, nothing seems that simple with this disease does it? It's fantastic however to her good news stories like your son's. What a huge relief it must be for you all. Gives us hope too.

    It is so important to get the message out about cleft lifts. Our GP had no idea that this procedure existed and was very wary of surgery because he knows how invasive the open excision surgery is. When I told him about the modified Karydakis, he looked so pleased! He asked for the contact details of the surgeon because another patient of his was about to undergo the open excision surgery. I hope we have saved someone from the trauma of that procedure. Again, it's all thanks to this site (which I also gave to the GP to pass on). I will check in again tomorrow after the doctor's appointment.
    Thanks again, Joanne x
     
  13. monster696

    monster696 New Member

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    Hi joanne. Im roz and live in the UK
    Lilly is brilliant and helped me so much when my daughter who is 20 was going through the same thing. I havnt posted on here for a while as fingers crossed we are at the end of all this
    My daughter had her 3rd op back in september, a cleft lift, and she had a small split where we think some internal stitches hadnt healed. And as a 4th op was arranged she basically said blow it and started riding her horse running and started going to the gym. Obv being more aware than normal but the split healed and we hav an appt in 2 wks with surgeon so hoping fingers crossed that all is still good.
    As a mum i have never experienced anything like this and it has been the most awful time so i totally understand where u r coming from. The worry is so over whelming isnt it ?
    Anyway fingers crossed for your son and im sure lilly will beable to give u more info or help than i can
    Roz x
     
  14. monster696

    monster696 New Member

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    Hi joanne. Im roz and live in the UK
    Lilly is brilliant and helped me so much when my daughter who is 20 was going through the same thing. I havnt posted on here for a while as fingers crossed we are at the end of all this
    My daughter had her 3rd op back in september, a cleft lift, and she had a small split where we think some internal stitches hadnt healed. And as a 4th op was arranged she basically said blow it and started riding her horse running and started going to the gym. Obv being more aware than normal but the split healed and we hav an appt in 2 wks with surgeon so hoping fingers crossed that all is still good.
    As a mum i have never experienced anything like this and it has been the most awful time so i totally understand where u r coming from. The worry is so over whelming isnt it ?
    Anyway fingers crossed for your son and im sure lilly will beable to give u more info or help than i can
    Roz x
     
  15. Liberty

    Liberty New Member

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    Hi Roz, thank you for your message. It is so generous of you and Lilly and others to help those of us now going through it when your children are healed. I've been touched so much by people's generosity that I've been in tears all day! (Although admittedly it doesn't take too much for me to cry these days!!). Yes, the worry is overwhelming. They are vulnerable enough at this tender age and to have such an isolating disease breaks my heart for them. On the other hand, i see a resilience in them too. Good on your daughter for taking matters into her own hands. How brave was she?!

    Thank goodness it's all behind you now ( no pun intended) and we can look forward to the same outcome.

    I want to keep posting as well so that I can help others along. Knowledge from direct experience is very powerful.

    Warmest wishes and thank you,

    Jo x
     
  16. Liberty

    Liberty New Member

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    Hi Lilly and Roz and all, my son's doctor said that some people have no drainage and some have heaps. Alexi's somewhere in the middle. I was concerned because we weren't prepared for the possibility ( no drain was inserted). The fluid is coming from a tiny hole next to the stitches. Doc's pretty happy with the healing so far. I just have to pluck some hair away from the wound. That will be the next challenge- to keep it hair free. How are you all going with that? Laser? Shaving? I saw a blog by Dr Bascom who thought it was unnecessary. Any thoughts?
    Very relieved at today's news though.

    I'll check in with his progress in a few days or when there's something to report.

    Cheers, J x
     
  17. LILLY

    LILLY Very Helpful

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    Joanne that is good news. I figured that's all it was. I know there isn't too much talk about drainage but since I documented my son's issues with it many have contacted me about the same issue. Some have big spurts and others a slow leak. We dealt with a slow leak that kept things tender for a bit- but nothing to worry about.

    There are different views on hair removal. Our surgeon is in favor of it. It's true that Dr. Bascom does not feel it necessary. We have followed our surgeon's instruction. We have considerd laser but aren't ready to commit to it yet. The resident expert here on laser is ROB6ERT so if you have questions on that I would direct you to him. He is very helpful and willing to answer questions. So far we have only used an electric shaver and I have to admit we are not good with keeping up with it. You will see once your son is healed everybody in the family moves on and it's hard to even remember all the nightmares that took place. You don't think about it everyday and shaving and such get a bit forgotten about.

    Roz, I have not forgotten about Lisa and all you went through. I just keep hoping to show up one day and read that she is deemed healed and no further surgery is needed. Will keep my fingers crossed for you to get the good news!

    Ladies take care and keep in touch.:)
     
  18. LILLY

    LILLY Very Helpful

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    1 year later

    Here we are one year out from cleft lift. Throughout this journey I have tried to structure this thread as more of a general reference than just a diary of every action I took and thought I had during the process. I have always tried to include all that I had read previous to surgery and all I have gathered since. In keeping with that thought this post is no different. The actual update on my son is short and sweet-he is doing well. He is doing all the things he loves with no complaints. Yesterday, I asked him what if anything he wanted to say about his recovery at this point. He said the only thing he doesn't like is sitting on a hard floor for a long time because the area gets sore-then he ran out the door on his way to an Orioles game! Life goes on.

    There are always many questions floating around the forum about cleft lift surgery, surgeons, and recovery. The first thing that has become painfully obvious to me in the months since I updated this thread is that there are surgeries being performed under the name of cleft lift that are far different than the surgery we have come to know. To me there is a vast difference between superficial variations and outcome altering variations. I think it is naive to think that surgeons will not have their own superficial preferences for the surgery. It is also naive to think that it is impossible that some of these preferences might actually be more effective. If I am given a lasagna recipe from the original creator of lasagna and I add a little garlic to it, to suit my preference, I don't consider the recipe bastardized. My feeling is the same with cleft lift surgery-to a point. There are superficial differences that I have come across through my reading about different surgeons performing the cleft lift-all have produced positive outcomes.

    Drain-I have heard of different types of drains being used and leaving them in from 1 to 10 days.

    Closure- I have heard of the use of stitches that needed to be taken out, dissolving stitches, glue, staples and tape and several combinations of these.

    Aftercare instructions-I have heard of a variety of different types of bandages, tape and gauze being used-different showering instructions-different activity levels permitted. People have been told anywhere from- they need to sit right away to- they can sit but don't need to right away to -don't sit for 1-7 days.

    All of these stories ended with a successful cleft lift. When you need to be cautious (or run) is if a surgeon explains something that varies GREATLY from what you know to be true, ie. long hospital stay, no sitting for 4-6 weeks, anything involving a muscle flap and the like. Get the picture?

    As always these are my own opinions based on what I have read.:)

    I think that's it for now. I have more to say about picking a surgeon, and recovery times but it's time to make dinner (lasagna)!

    Oh and the moms I have talked to please stop by and update. I would love to hear how your children are-Diana, Roz, Joanne?:)
     
  19. Liberty

    Liberty New Member

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    Hi Lilly, lovely to hear from you. I was just thinking a couple of days ago that I would check in and give an update. I'm so happy your son is doing well. Knowing how stressful this whole thing is, I really feel for anyone having to deal with it both mothers and their children. Well my son's cleft lift was done in March of this year and so far all is well. Normality has returned! It was uncomfortable to sit properly for about 8 weeks but that's all gone now. He was very concerned about 'deformity' but you can barely notice that anything's been done. My only concern now is hair management. Dr LP Cheah (who has been generous, caring and so knowledgable) insists that we need to remove the hair from that area regularly. I've heard other doctors say that this is unnecessary...this is still confusing me. We have used a hair removal cream a few times but the hair grows back so quickly. We explored laser hair removal but my son doesn't want that. So we're plodding along hoping it never comes back and removing hair every now and then. The other thing of a preventative nature that our doctor suggested was to place a small amount of gauze in the cleft every day to avoid sweat building up and softening the skin which would encourage the hair to grow inward. My son does that every day- it doesn't bother him. Just part of the daily routine. Any thoughts about hair removal anyone?

    Lilly, your comments about the small diversions are spot on. If the surgeon is accomplished he/she can make judgement calls that might deviate slightly for the benefit of the individual patient. I too would like to hear how others are faring.

    Can i say that without this forum I don't know what we would've done. I can't thank you all enough and I often think of you Mums across the world and send you and your children my warmest wishes. Love, Joanne x
     
  20. Liberty

    Liberty New Member

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    Oh! And our doctor didn't put in a drain but the wound did drain of its own accord and then healed really well.
     

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