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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    Day 9 post op
    My husband and I were a little concerned. More than half of the incision looked kind of raw and moist. The drainage was continuing and we could see where it was coming from holes in the incision. We emailed pictures to our surgeon and he was quick to respond. He said everything looked good and that all of this was still normal healing. This is good news of course but it is still hard not to worry about your kid. This was really only the second time we took a picture of the incision. The jury is still out on posting pictures. So far really all there has been to see was a lot of marker lines, tape residue, swelling and some bruising. It's nothing I have been scared by but to me it looks like his surgery may have been a bit more extensive than some I've seen. I guess that is important to say also that even within the same type of surgery there will be variables. The extent of your disease, your previous surgeries, and the depth of your cleft will have an effect on appearance and healing.

    Day 10 post op
    Today it actually seems like there is a bit of slowing in the drainage. He is getting kind of tired of having the dressing changed even though it only entails a strip of tape across a piece of gauze. This does confirm for me what I expected which is recovery from an open excision would have been a rough road. Other than that he is moving around normally and sitting probably 50% of the time. He is off pain meds and is seeing friends regularly. If he had a job I would say he could go back to it by now as long as it didn't involve sitting for long periods. He has still not started driving but I think it's from fear leftover from his closed excision surgery. After that it took him 2 weeks. I feel like I'm leaving something out but there isn't too much more to say at this point.
     
  2. leist22

    leist22 New Member

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    LILLY,

    I hope things are going well with your son. My surgery went well. I have some stitches that will come out next week. I am experiencing some drainage still since I had two drainage tubes removed last week. Dr. Bascom has me apply providone iodine three times a day and also keep a piece of gauze between my cheeks down low to allow oxygen to get to the site. All in all, things are going very well. My first bowl movement was excruciatingly painful but the pain has since tapered to a lower level each time.

    Leist22
     
  3. LILLY

    LILLY Very Helpful

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    Hi Leist.

    I'm so glad things are going well. My son is doing well also but the drainage has lasted longer than I expected. I guess you had a good bit at least to start with 2 tubes. For us there is also a hole that opened up right in the center of the incision that is draining and of course that feels frightening. Dr. Rosengart was not alarmed by the pictures and I'm trying not to be also. We are also using gauze down low between the cheeks and now gauze taped across the opening that is draining. There aren't any stitches that need to be taken out. We were using betadine swabs once a day for a few days but not anymore. Ducolax has really helped with the bowel movements. He takes one each night before bed. If you are cleared for it that might help.

    Good to hear from you!
     
  4. LILLY

    LILLY Very Helpful

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    Day 11 post op
    First day driving, and a stick shift even. I think this was a big turning point -now he feels ready to do anything. He is already asking about skate boarding. I will be reining him in for a few more weeks until he is cleared for all activities. Everything is feeling pretty normal now. He is sitting more normal and for longer periods. He does need to change positions to get comfortable after awhile but I would say he is sitting normal about 80% of the time, and I have even seen him laying on his back a few times. He is up and out of the house more often too.

    Day 12 post op
    At this point the drainage is slowing a little each day. The incision is looking much more stable if that makes sense. The bottom which was where it looked that it would be the most difficult is holding together very well. The slight opening in the middle of the incision is still where the drainage is coming from but it is starting to want to cover over. I just want to be clear that this surgery leaves you with no open wound whatsoever for people who may be hearing about cleft lift for the first time. There is no packing, no bleeding, and really no pain to speak of. We are using one 4x4 piece of gauze held on by a piece of tape at the top of the "crack" changed 3 times a day. We have found that Johnson and Johnson hurt free tape works really well. It peels off easily without any pain or tape residue. It's not tape that will hold if you have a thicker dressing or are sweating a lot but it has worked great for what we need. I figure I will post on a day to day basis for as long as there is something to tell and then more on a weekly or monthly basis as need be. :)
     
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  5. leist22

    leist22 New Member

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    Did your son having any pain at all post op? I assume so since you had another round of pain meds prescribed at day 6. I'm currently at day 6 post op, and while I don't feel pain most of the day, I do have pain during a bowel movement and after taking walks. I have taken a few long walks (greater than 3 miles) and at night I have sore/tender pain. During a BM however the pain is more severe, it's not a deep pain, but a pain at the surface like someone is pinching me really really hard. It may have to do with the stitches. Dr. Bascom put 2 stitches in down low, he took one out today and will take the other out tomorrow or Wednesday.
     
  6. LILLY

    LILLY Very Helpful

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    I would say nearly all of his pain was gone by day 6. Of the new prescription he only ever took one or two pills total, but then again he was not walking for 3 miles. I would actually be surprised if you weren't sore after such a walk. Others that have gone before us have said that even months down the line they can get some irritation of the scar with exercise. I asked about a pinching sensation and he said no he never had that. The difference may just be the type of stitches. Do you have any type of pinching when you sit on a chair? Also, while I have you here has Dr. Bascom talked to you about keeping the area free of hair long term? Dr. Rosengart told my son to keep the area free of hair until he was 30.
     
  7. leist22

    leist22 New Member

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    There is a small tugging/pulling feeling when I sit down. It's actually a lot better today, I'm pretty sure it's the stitches. My stitches were taken out today. Dr. Bascom said he did not advocate removal of hair because laser/shaving does not get rid of the hair follicle.

    How long was your son on antibiotics post surgery?

    Dr. Bascom did not initially put me on antibiotics but ended up prescribing me some for 2 days. Now, I'm having significant drainage from where the drain was which is leading us to believe that there might be some bacteria in the reservoir left by the big cyst that was taken out. I've been prescribed more antibiotics to fight the bacteria and am having to stay in Oregon a little bit longer.
     
  8. LILLY

    LILLY Very Helpful

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    That's interesting that they differ on hair removal.

    Ok, antibiotics. He was not prescribed any antibiotics at all. There was one night that he ran a fever and Dr. Rosengart was concerned but it passed after a few hours without any problems.

    I'm glad to hear you are more comfortable now that the stitches are out, but sorry to hear you can't go home yet. We have been dealing with some drainage issues too but I guess not to the extent that you are experiencing. I hope things turn around soon.

    Keep in touch.
     
  9. LILLY

    LILLY Very Helpful

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    Day 13 post op
    The progress continues steadily. He is driving often and seems to have no problem. Each day is easier than the last. He is sitting with no trouble but still sometimes chooses to sit to the side with his weight on his hip.

    Day 14 post op
    Now 2 weeks out I can see where people can be finished healing at this point. I'm glad we still have a week and a day before school starts though because I feel like we need it. The drainage keeps things more tender so the extra week, I'm hoping, will give things a chance to dry out more and toughen up. I'm not sure if everyone continues to drain after their tube is taken out but it seems like, from what I've read at least, for some it does happen. The top third of the incision is completely mended, dry, and the scar is hardly noticable. The middle third is still draining but less than before. The skin there is thick healthy skin that fits together perfectly and seems like it will mend nicely. The bottom third is where there are some areas that new skin actually has had to grow over because the scar tissue left from previous surgeries did not stretch to cover the way normal skin would. This area is closed but by the thinnest sheet of new skin. So he is still in the healing process, but doing well, and we are trying to be optimistic as always.
     
  10. UnluckyOne

    UnluckyOne Very Helpful

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    Lilly
    I am very glad to hear that he is still making progress and not too far from being finished up with all of this. I never really mentioned it on my post I don't think, but I only continued to drain a little bit after the JP drain was removed, but it could be a good thing. During one of my follow-ups (my more recent ones, not one of the first ones), my surgeon said it seemed that I had built up some fluid under the scar (which scared the heck out of me!) and I'm not sure what he did but it felt like maybe he stabbed the scar a little bit and pushed the drainage out. I never had any problems with drainage after that so it wasn't a very big deal, but I still believe it could have had he not caught it. I guess the body will take its time and do what it needs to do.
    Your son has all my best wishes for dealing with the drainage and healing up!
     
  11. di3431

    di3431 New Member

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    Lilly, how old is your son? Did I see 16, mine is 14 and on day9 post surgery. I am beginning to wonder why we had this surgery, nothing has changed, it's still draining and smells and he is on antibiotics to avoid an infection. He starts school in 5 days and I am sick with worry. Can you tell me more about your situation and what you have done since surgery? Which hospital did you go to, I saw you are from pittsburgh, we are from Ohio. This is my sons first surgery and he was misdiagnosed for the last 3 months and when they finally figured it out, they immediately scheduled surgery for the next day. I am so frustrated and any advice you can give would help since I am so new to this whole world. Thank you.
     
  12. LILLY

    LILLY Very Helpful

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    UnluckyOne I am so glad you weighed in on this. It seems that drainage after cleft lift is a hot topic right now. I don't really remember too many people talking about it before his surgery so I guess it's not always an issue. I have read recently that some others did have what you had- a sort of needle draining procedure. I hope you are completely healed and enjoying life. We really do appreciate your well wishes. When my son has questions he asks for you by name- and I just think you are a little angel!
     
  13. LILLY

    LILLY Very Helpful

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    Hi di3431. My son is 16 and had surgery with Dr. Rosengart at UPMC in Pittsburgh. We are from Maryland but Dr. Rosengart came highly recommended. Cleft lift is my son's third surgery this year. The first two were closed excision that never got to the root of the problem. I have been reading your posts and I can feel your sense of urgency. We have not had any smell involved with his drainage. I have learned that there are two distinct smells (if it smells at all) when it comes to healing a wound -a normal unpleasant smell, or a putrid smell that indicates infection. If it is truly putrid I would expect that the antibiotics will turn that around. My son's drainage has never been at a rate that is not manageable and each day it is getting better. I can't say we have really done anything other than just dress the wound, keep it clean, and wait. I wish I had some trick to share but really I don't. You can read through my posts and see that day 9 was rough for us also but things began to turn around from there. What has your surgeon told you as far as limiting his activities and returning to school?
     
  14. di3431

    di3431 New Member

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    Thanks for the response Lilly! How come you guys needed 3 surgeries and how did you know they didn't get to the root of the problem? The dr isn't saying much yet. He said the incision looked good, that it didn't look infected and he would see us in a week to take out the stitches. It's very clear our dr performs these surgeries often, every time we see him he mentions another, but I don't get the purpose of the surgery if it's draining and still smells.
     
  15. LILLY

    LILLY Very Helpful

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    There are a number of different types of surgery for pilonidal disease-some more effective than others. I guess the first thing I should ask is did your surgeon call your son's surgery a cleft lift specifically? If he did not you may be dealing with a whole different animal. Most surgeons do excision. My son's first was very conservative and showed no tracts. When the wound opened back up after it healed the surgeon went in just to clean it up and close it again and that's when he saw tracts and said he got all of those. After weeks more with stitches the wound still wouldn't hold closed and an MRI showed a large cyst deep near the sacrum. What was offered then was an open excision which we turned down in favor of cleft lift. The point of any of these surgeries is to recover with no drainage, no infection, sealed incision. Each surgery has a different recovery rate. None of them are an instant cure. Your surgeon should have given you some projections on healing time. What did he say about that?
     
  16. di3431

    di3431 New Member

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    It was a closed surgery and they only found 1 tract going down the midline. The problem was it was infected for nearly 3 months before they found the problem, so he was so suppose to clear that out. So that is different than a cleft lift, right? He said that it should stop draining before the stitches come out and cause he is a hockey player he should be back playing in a few weeks. He doesn't seem to be in much pain at all, maybe sometimes when he sits straight up, but he wasn't in pain before the surgery either. We go Tuesday to get the stitches out, can you help with me some questions to help push the dr along please?
     
  17. LILLY

    LILLY Very Helpful

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    Cleft lift shallows the top of the butt crack and is one type of closed surgery. There is much information about it on this website but I expect your son had closed excision. It will be important going forward that your doctor clarify for you what surgery was done. As far as questions, well, if everything is on track at the appointment the way he has said with no drainage and the wound is closed then I would just ask him to be specific about what activities your son is cleared for and when. If things are not on track I would ask him to be specific about what his plan is to address the issue and what you need to do to manage the situation at home. As far as pushing him along I don't think there is anything really to push him on. He is addressing the possibility of infection and really other than wound care there isn't much to do at this point but wait to heal. You are in the very beginning of this journey. I do hope that it comes to a swift end for you and your son. You need to be prepared though for the possibility that there may be some glitches in the healing process, but you will get through it.
     
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  18. LILLY

    LILLY Very Helpful

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    Days 15, 16, 17, 18 post op

    I thought I'd do a little mini update. On day 15 he went to see a movie for the first time since surgery. That was the first time he had been in a situation where there weren't too many options for sitting positions. He said it was somewhat uncomfortable, but for some reason more so at the top of the incision which is completely healed and looks perfect. Maybe it was just the stretching of sitting straight for so long. After that he did take tylenol which was the first time in awhile he had taken anything for pain. Other than that he hasn't had any pain or even much discomfort at all.

    As for the incision- it is really coming along. The drainage is nearly non-existent. I am actually wondering if I shouldn't stop using any gauze at all. It seemed like the gauze almost wanted to stick to the wound and maybe like it is actually a hindrance to healing at this point. The middle section is very close to be being closed up. The bottom area which actually had to grow some skin to cover over the area looks a bit like a science project. It is about the size of a nickel. The top portion has what I am guessing is granulation as it looks like a glob of dried jelly, and this is new. I am hoping this is not over granulation. The area under that is still in the sticky yellow phase which again I'm guessing is a fibrin substance. Granted guessing is not the best way to go about medical care and we are planning to email Dr. Rosengart just to make sure we are on track and what if any dressing we should be doing.
     
  19. LILLY

    LILLY Very Helpful

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    Days 19, 20, 21 post op

    First, we did contact Dr. Rosengart and sent him pictures. He said the granulation looks good and that everything he sees tells him the wound will heal just fine. That is always reassuring. I will say granulating tissue looks pretty strange. When it first showed up it was screamin red and looked like it erupted through the incision. It had dimension and height to it which made me worry that we would have an issue with over granulation. It actually seems to have receded and is paler in color. The area is filling in and closing up. I am using a piece of rolled up gauze still to keep the area dry of sweat. This kid is a champion sweater!

    Tomorrow is the first day of school. We are hoping for the best as he spends a long day in a hard school chair. I'll check back in to report how he does. Wish us luck!
     
  20. LILLY

    LILLY Very Helpful

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    3 weeks - first day of school

    The first day of school went well. It was better than I expected. He says he was able to sit through the whole school day without any problem and didn't need any pain medication. That's one hurdle cleared. Next hurdle gym/weightlifting class. That's always a big question for pilo sufferers post surgery. How much exercise and how soon? We had hoped that maybe he would end up with gym in the second half of the year only so we would have some time to ease into things. Well it turns out he has gym/weightlifting 5 days a week all year long. This is a dream come true for him. If he could have gym class 8 hours a day he would. For that reason I don't want to try to change his schedule in any way but hope the teachers will work with us on modified workouts. This is all to begin tomorrow so he has been texting me from school today (which is of course not allowed) pushing me to find out if he gets to participate. I again emailed Dr. Rosengart, who I must say has the patience of a saint, and he gave me direction as to what was allowed. At this point he should not be doing any type of squats or anything that would overly stretch the area. Other than that he can participate but maybe avoid any rigorous activity (I'm paraphrasing) and he needs to listen to what his body is telling him. He will be very happy to hear this as he is chomping at the bit to get started!
     
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