My son's cleft lift 7/31/12

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

  1. di3431

    di3431 New Member

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    Thanks for the updates Lilly! Your posts are very helpful. How are you getting the skin to heal further below the tailbone? I am struggling with that, my son is a big sweater as well, we put gauze in everyday since it's still draining, and the top that gets air and stays dry is nearly healed, it's below that looks like an infection waiting. The sports part helps as well...that is exactly what are doctor said. I am going to let him skate next week, 3 weeks post op, but it will be a slow skate.
     
  2. LILLY

    LILLY Very Helpful

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    With the cleft lift we don't really have any part of the wound that is hidden in the crack anymore, but I do remember what that was like. When my son was trying to recover from closed excision he had to change the gauze in the crack several times throughout the day. It is very difficult to keep the crack clean and dry which is what you need to heal. I would just have him wash the area with mild soap twice a day and make sure the area is completely dry before putting the gauze in. Some people have even gone to the extent of using a hair dryer on low to make sure the area is dry, but we have never done that. I hope your son's transition back into school and sports goes smoothly!
     
  3. di3431

    di3431 New Member

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    Hi Lilly! Sorry my responses are slow, between work, school and trying to get this thing under control, I am falling behind. When your son had the closed excision, did he have drainage? My son's drainage isn't stopping. I would say it has slowed down, but not stopped and it doesn't smell anymore, which is good. He got his stitches out last week and the DR said it all looked well. I am curious to know how you guys figured out the first closed excision wasn't a success? The DR feels my son's surgery was a success, but to what extent, cause the cyst is gone? My son will skate for the first time tonight, and he isn't in any pain and the incision isn't splitting at all, besides the drainage, you couldn't even ever tell he had this? Is that how yours was? As I mentioned before, we were really rushed into this surgery because the hospital and 3 DR's misdiagnosed him, I feel awful that he has gone through this, when we should've just started with the cleft surgery. I appreciate you sharing your story and helping me through this!
    Diana
     
  4. LILLY

    LILLY Very Helpful

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    Diana I know how you feel. No matter what we do for our kids we always wonder if we could have done it better. It's hard to watch our kids go through this but you didn't do anything wrong. The majority of surgeons have never heard of cleft lift so it is not surprising that none of us had either. You may still end up with a positive result. Not everyone has further complications. It's not time to worry yet. If the incision doesn't heal or heals and then pops open that's when you need to look at what's going on. You won't know this for some time yet. I would hesitate to declare victory until the wound is closed solidly for several months.

    For now, I would just follow the surgeon's instructions and keep it as clean and dry as possible and wait. If the surgeon isn't worried about the drainage I wouldn't be either, at least at this point. You are still very early in the process so let's hold out hope that you turn out to be one of the lucky ones.
     
  5. LILLY

    LILLY Very Helpful

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    1 month post op

    I thought I'd do a little month in review for this update. There are definitely stages to the recovery. I went back to look again at other recovery logs and I think his is pretty typical. Some things came along quicker than I expected and some took a bit longer. Ok so here we go.

    week 1
    The first week is a lot of laying on your side. There is some experimental sitting(if your surgeon permits) but nothing too substantial. Walking is possible right from the start but gets more comfortable after day 3 or 4. This week is mostly about resting and taking care of basic needs. Toward the end of the week you may be up to seeing some visitors but you won't be up for too much activity. Pain is manageable with medication.

    week 2
    By now pain is pretty much gone and there isn't need for pain meds. There is still more sitting but not to the extent that I expected. The numbness is wearing off which actually happened quicker than I expected. Right around day 10 seems like a good estimate of when driving feels ok. Ok but not great and probably wouldn't be too comfortable for long drives. By the middle or end of week 2 seemed like work would be ok but only if there wasn't a lot of sitting or heavy lifting.

    week 3
    Things really start to come together. Sitting is easier and by the end of the week school or a desk job would be possible. Still maybe not 100% but for most probably manageable. At this point heavy lifting probably isn't the best idea. A longer drive is possible.

    week 4
    For us week 4 allowed for light workouts and weight lifting. That may be different for others. As he is sitting all day long in school now when he comes home he still prefers to keep the weight off the area for a break. At this point most will have a completely healed incision. For us a small area is still healing. There is no drainage but we are using gauze to keep the area dry. This is to help the last bit heal especially because he sweats a good bit. Our surgeons has noticed from pictures that some sutures are being extruded and that may be holding us up a bit but should work itself out.

    I want to say that each person will have a slightly different experience. You may be able to push yourself faster in some of these areas but I think this timeline is pretty realistic. We had some drainage early on but no bleeding. This may vary for others. What I do want to say it that my son is happy and that is the biggest thing. The surgery and recovery have not been a traumatic experience in the least. He asked me if he was going to have to worry about pilonidal the rest of his life. What I told him is there are no guarantees but that the cleft lift is our best shot to be rid of it for good. I truly believe that and I absolutey recommend it.
     
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  6. LILLY

    LILLY Very Helpful

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    6 weeks post op

    I feel like this post should be called stitches and glitches. It seems like a theme recently for a few different people. I'm not complaining because I realize how big of a gaping hole he would have had- still now after 6 weeks- had we gone the other route.

    So around the 3 to 4 week mark our surgeon was able to see in pictures that the sutures were being extruded. I am using his exact words just to be correct. At that time I didn't see it. I believed him I just didn't know what I was looking for exactly. Then another week or so goes by and UnluckyOne posted about finding her undissolved stitch I think a month and 20 days post op. She explained that it was hard plastic which she thought was weird and so did I. A few more days went by and I looked at my son's incision and it looked like something was stuck to it. I tugged on it which I know is dumb only to find it was the same hard plastic type stitch. So I just left it go and it laid back down. Over the past few days it has been coming out on it's own. It's pretty weird. He doesn't have any pain and isn't bothered by it at all so that's a good thing. Tonight we are going to clean up the area-do some hair removal-and take pictures to send off to the surgeon. We will also find out more about how much he can do in the way of exercise and weight lifting at this point. I will check back in when I know more.
     
  7. UnluckyOne

    UnluckyOne Very Helpful

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    Wow!
    Well, I'm glad I did end up posting about it and letting y'all know. Mine was also forcing itself out which my surgeon explained was normal as it is a foreign object. I think this is one of those things that will happen with a lot of these surgeries- but I also think they're minor obstacles in the road to recovery. I overcame the stitch problem and am fully healed now so I know you're son will be too in just a matter of time! :) Tell him I said good job for getting through all of this and definitely update on the progress.
     
  8. LILLY

    LILLY Very Helpful

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    7 weeks post op

    Ok so where we left off was at 6 weeks getting ready to send pictures to Dr. Rosengart. At that point we were not concerned that there were any problems we were just keeping in touch and making sure we were doing all we should be doing. There was still an area that needed to heal. It was a raised area that was sort of pink and about the size of a pumpkin seed. So when we set up to take the pictures the stitch made another appearance. The first time it was connected at both ends and it felt like hard plastic. This time it was sticking straight out about an inch and only connected on one side and looked more shriveled. I told my husband-don't pull it! Well, men don't listen. He pulled it and it was mostly dissolved and it just broke off. We sent the pictures to our surgeon and he said it looked really good and we thought so too.

    At 6 weeks he was also cleared for all activities, as long as the activity did not cause pain. So he has been testing the water and so far he has had no problem. He is participating fully in gym glass. Yay!

    Once that stitch came out the healing of the last bit really took off so much so that we may actually be done? We stopped using gauze a few days ago and to be honest I haven't looked at it since then. I need to look at it and see where we are and I will update again. Things have been so normal that we have been forgetting to check-just as I have been forgetting to do this update. That's the goal isn't it? Living life not thinking about pilonidal disease!
     
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  9. monster696

    monster696 New Member

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    Awww that is/amazing Lilly. Actually think my daughter is reading this on her laptop as I'm posting.so pleased for your son too
     
  10. LILLY

    LILLY Very Helpful

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    2 months post op

    So I have to report that his incision is all healed and has been since just under 7 weeks. I think, as with most pilo sufferers, we have come to fear claiming any type of victory over this thing. I am not particularly superstitious but it still scares me to say we're done. I said it after the very first closed excision "healed" and 3 days later we were back in the surgeons office with holes in the incision. I know this is different and I believe in it and I am trying to embrace where we are without fear. It's funny as I am re-reading this it sounds so dramatic. It also sounds like someone who has been through an emotional trauma-and really I guess if I'm honest I have been. We spent the first half of this year with him in and out of surgery and at times I thought we would never see the end. I've said it dozens of times and I'm sure I will say it dozens more but I am so thankful for this site. Thank you Sasha for creating it and for all the members who have supported us along the way. It was here that I learned about cleft lift and found Dr. Rosengart and I will always be grateful for that.

    I'm sticking around so this is not with the intention of saying good-bye, it's just with the intention of saying once more- THANKS!
     
  11. monster696

    monster696 New Member

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    Lilly, I am so so pleased for your son, and of course you. This is such fantastic news to wake up to on a Monday morning.
    I don't think people realise that for us mums too it is a horrid time, of course its not the same as the kids going through it, but as parents stressful non the less watching your kid suffer and struggle through such a misunderstood disease.
    Please hang around as the advice of people who have been through this too is invaluable to us who are going through it, or those who are about to.
    Please send my and Lisa's best wishes to you and your son/family
    X
     
  12. di3431

    di3431 New Member

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    Hi Lilly...that is great news for your family. I am excited that you can finally put this past you! Thank you for sharing your story!
     
  13. LILLY

    LILLY Very Helpful

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    3 months post op

    Each time I do these updates I forget to talk about pictures. I thought from the beginning that we would post pictures along this journey. My son said "go ahead post the pictures and my name-I don't mind". It was my husband that didn't go along with the idea. Since our son is just 16 he felt that it wasn't the best idea to post the pictures even for medical purposes. So, that's what is going on with that at least for now.

    So, at this point it is business as usual. He is involved in all of his normal activities, and picking up some new ones. He has always been into skateboarding and recently had quite a spill but everything held. He is just starting out with BMX and I will be holding my breath. We are not doing anything special with the incision area except for hair removal. The incision doesn't seem to bother him but he still will sit off to the side from time to time. Other than that there isn't much to tell.

    Roz and Lisa -I hope things are moving along for you. :)

    Diana- I don't know if you check back here anymore but I have been wondering how things worked out for your son. Please post if you see this. :)
     
  14. di3431

    di3431 New Member

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    Hi Lilly, thanks for checking in! Between work, school and hockey being in full swing, it's hard to always comment. We are communicating with Dr. Rosengart weekly. My son's cyst isn't infected, but he has these huge holes from all the tissue being removed with the closed incision. To anyone else reading this, I wouldn't even try this method if your cyst was infected and tracking. Dr. Rosengart (who is absolutely wonderful) has agreed that the holes are so deep that they probably won't heal. At this point, we have to try and get through the school year and hockey season. Dr. Rosengart and I discussed timelines and after talking to my son, we are going to try and wait. It's draining/bleeding every day and we just gauze it up and he deals with it. He does have anxiety in school about it leaking through on his pants, and that was very difficult in the beginning and even some days now. Unfortunately with waiting till school is out, it will be another summer gone for him, since this started last summer, but it is what it is and we have both learned to deal with it a little better. I do need to go back through and read your detailed notes though about each week, thank you so much for making them available to us and for mentioning Dr. Rosengart. Between you and Dr. Rosengart, I can't thank you enough.
     
  15. ROB6ERT

    ROB6ERT Very Helpful

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    AM GLAD THAT YOU WILL CONTINUE TO POST
    I AM IN THE PROCESS OF GETTING LASER HAIR REMOVAL RIGHT NOW, I TRIED THE SHAVING,REMOVAL CREAMS AND TRIMERS AND FOUND THAT MY SKIN BECAME IRRATED AND THE THOUGHT OF HAVING TO DO THAT THE REST OF MY LIFE WAS TOO MUCH.LASERS ALSO CLOSE UP THE HAIR FOLLICLES TOO AFTER THE HAIR IS DISTROYED WHICH MEANS LESS CHANCE OF PROBLEMS WITH PD DOWN THE ROAD. I DECIDED TO DO THE LASERS AFTER A SURGEON FOUND A HAIR GROWING OUT OF 1 FOLLICLE BACK INTO MY SKIN, IT HAD GROWN IN ABOUT 1/2 INCH,WHICH HE REMOVED AND RECOMMENDED I GET LASERED.I HAVE HAD 2 TREATMENTS AND HAD NO PROBLEMS
    GLAD TO HEAR THAT YOUR SON IS DOING SO GOOD,I HOPE THAT MORE PEOPLE WILL GET THE CLEFT LIFT AFTER READING YOUR STORY.
    I HAVE HAD 2 OPEN SURGERIES 30 YEARS APART, THE LAST ONE WAS 4 YEARS AGO,EVEN THOU I HEALED GOOD BOTH TIMES THE HEALING PROCESS TAKES SOO LONG. IF I EVER HAVE TO GO THRU THIS AGAIN IT WILL BE A CLEFT LIFT.ALSO THE MORE PEOPLE THAT GET IT DONE THE MORE SURGEONS WILL BE WILLING TO LEARN THIS PROCEDURE BECAUSE THEY DONT WANT TO LOOSE THE BUSSINESS,THAN IT WILL BE EASIER FOR US TO FIND DRS, WHO KNOWS ONE DAY IT JUST MIGHT BE THE STANDARD TREATMENT
     
  16. monster696

    monster696 New Member

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    Hiya lilly. Glad all OK with u and also u came out of hurricane sandy unscathed. We are going back to see the surgeon this coming Monday. I THINK the top bit of the split looks less deep but still not sure about the bottom bit. Hopefully it will just be a case a waiting another couple of weeks. Lisa has given up just sitting around and is getting out more but like she says no partying just yet. But staying around home was making her very touchy so maybe feeling happier in herself will speed things up. I so hope so.
     
  17. LILLY

    LILLY Very Helpful

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    Oh Diana I guess much has happened since we last talked. I was figuring things went well and you continued on with your life, but it looks like that didn't happen. So when the stitches came out the wound was not healed? In any case I'm glad you decided to seek out help from Dr. Rosengart because he really is wonderful. I can understand wanting to wait until summer because it never seems like a good time to miss a few weeks of school. I hope you can hold it off. Let us know how it goes.

    ROB6ERT I have also been keeping up with your story. At this point we haven't decided whether or not to do permanent hair removal but if we do I may have questions for you. I don't blame you for not wanting to go through another open surgery. I hope that you don't need further surgery at all but I'm glad that cleft lift is available to you if need be. I think it's important to keep talking about cleft lift until it is the standard practice. We just need to keep making noise!

    Roz I will be interested to hear what your surgeon says Monday. We also went through ups and downs and I'm hoping things straighten out for you also. I think it's a great idea for Lisa to get out and do things. She knows not to overdue so she should get out there and enjoy being young because it passes too quickly.
     
  18. LILLY

    LILLY Very Helpful

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    4 months post op

    I'm happy to say we are at 4 months and still doing well. He is in weight lifting class five days a week and has had no problem. In the past month I can say he has probably played every sport and has fallen in every different way and everything is still intact. The same can't be said for my older son who actually broke his wrist skateboarding, but I guess that's just boys.

    We have continued trying to keep the area shaved but it isn't easy. The more time that goes by the less he wants to be messed with and we still haven't decided on the best method yet. I'll continue to update on that when we get a better handle on it.

    He does somtimes say the incision gets a bit itchy but I think that is pretty normal. I believe that it is mostly when he sweats. I keep those cottonelle wipes in the bathroom and told him to clean the area with those when it's itchy. This seems to help. We never use anything harsh on the area.

    One thing that was a little weird was a small bump formed on top of the incision and then fell off. It was the texture of a mole but it was kind of pinky flesh colored. I don't quite know what it was but it doesn't seem to have caused any problems. I will ask at our final follow up visit which is December 10th.

    There are new people coming to the forum every day and I want to encourage you all to learn all you can before you go into any surgery. There are many people here trying to help and we are all open to your questions. :)
     
  19. leist22

    leist22 New Member

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    LILLY,

    Glad to know that your son is doing well. I'm almost 4 months post op as well and everything is going great. I too have itching and minor irritation in the area every now and then. I called Dr. Bascom about this and he said that he has had patients develop minor dermatitis in the area, but nothing serious. He also told me not to wash/clean the area too much as that rids the body of natural oils intended to keep that area moist and clean.

    My entire life has changed since I had the cleft lift. I had 2 failed surgeries and had to rearrange my entire life to deal with the constant pain and drainage from the second surgery. My case with pilonidal disease was so bad that cleft lift surgeons recommended on this website told me that I only had a 50-50 chance of healing and that I may have to live with chronic pain and drainage forever.

    If someone who is reading this thinks that normal closed/open excision will work for them, please reconsider and find a surgeon who knows cleft lift and pit picking methods. I once thought that I would not be one of those people who has healing problems as the chances seemed low, but they are not. In my case, having 2 closed excision surgeries made my disease a lot worse, so much worse that even experienced cleft lift surgeons told me I probably wouldn't heal. even from a cleft lift. But I was lucky and found a great doctor.

    Do your research!!!

    Good luck LILLY!
     
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  20. LILLY

    LILLY Very Helpful

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    leist22 it's so good to see you around here again! Since we went through this at the same time I often wonder how things are for you. I'm so glad to hear that you are living a normal life, and fully recovered. We were both at such a critical point over the summer and the memory of those stressful decisions is still fresh in my mind. It feels good to be where we are now and I continue to hold out hope for a completely pilo free future for us all.

    I had wanted to update with more detail about how we have cleaned the incision site during and after recovery but I have had a wicked cold and my head is fuzzy. I will do that soon, because it seems to be a topic of interest lately. For now I wanted to correct what I said before about the wipes. I told my son to use those wipes if he felt itchy. He never said another word about it so I assumed he used them and it took care of it. Wrong. He went in to use the wipes-they were dried out-so he forgot about it and went on his merry way. He never did use them. So, I don't know if they will or will not help with itching. I asked him why he never said anything about it and he said it really hasn't been itchy at all. Now I know I need to follow up better. It is very hard to get information from teenage boys!

    Oh and I should mention that our follow up appointment was changed from Dec. 10th to Dec. 17th. If I don't update before that I will after the appointment. Take care all!
     

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