DD going for surgery in a few weeks then starting freshman year!

Discussion in 'Pilonidal Discussions' started by Anonymouse1, Jul 14, 2013.

  1. Anonymouse1

    Anonymouse1 Helpful

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    I am an anxious mom of a 18 yr old DD. She is scheduled to have surgery in two weeks ( just 3 weeks prior to heading to college). The doctor's office said a 2 week recovery with up to 3 month healing (probably going to do an open wound). I did talk with the nurses at school who said not to worry and that they do dressing changes and manage open wounds for pilonidal disease frequently. She has classes on three days of the week and so can study on her stomach and stay off her tush. Should I be concerned? We can't really do this surgery any other time as our insurance is about to get a lot worse! Did anyone go back to school this soon? I know the post op care sheet says you can return to work after 2 weeks, so it should be ok, right?
     
  2. Anonymouse1

    Anonymouse1 Helpful

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    As an addendum, after reading the forums, I've found a couple of surgeons in town who perform cleft lifts. Should I seek a second opinion from one of these docs before proceeding with the open wound surgery? I guess that even if they can't perform the surgery before school starts, maybe we could get this done at Christmas break. My other question is that my DD is on antibiotics now following an "unroofing" which was done a week ago and got infected (she was not put on antibiotics at the time). Since a pilonidal cyst seems to be an infected abscess why wouldn't a surgeon want to operate on my DD's cyst, which is what he told us at the pre-op appointment? He said that with pus being present he wouldn't operate until it was "clean". Still feeling a bit confused by our visit! Our surgeon is a general surgeon, not a specialist in pilonidal disease.
     
  3. Robert Eden

    Robert Eden Very Helpful

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    Yes, I recommend going to the cleft lift doc for a second opinion.

    I can understand the surgeon wanting to wait until there isn't an active infection, but with Pilonidal, I think there's always some active infection... Maybe that doc doesn't have that much experience with them?


    Robert
     
  4. Anonymouse1

    Anonymouse1 Helpful

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    I feel like I'm on the right path at last! Called the local surgeon that performs cleft lifts (on your list) who fortunately for us is 15 minutes away:cheer: He had a cancellation for next week so I'm taking DD for a consultation. I can't tell you how many sleepless nights I've had fretting over this, truly this is making me sick - headache every day, obsessing!! I'm so glad I found this organization before we went for the open wound surgery!!!
     
  5. LILLY

    LILLY Very Helpful

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    You are not the only one who has lost sleep over the thought of sending a child into open excision. I was there! I was right where you are. I had the surgery scheduled but looked for other options. I found a surgeon to do the cleft lift and everything changed. You are not wrong to fear the recovery from open wound surgery. The last thing a new college student needs is being away from home with an open wound seeping and bleeding and needing packing changes and fearing infection. You are doing the right thing. My son is nearly a year post cleft lift and I have documented his story on the forum. We are so thankful for this forum and the cleft lift. Please keep in touch and let us know what you find out at your consultation.
     
  6. patchy91

    patchy91 New Member

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    I can't tell you which surgery to have because I haven't done enough research (although I will say this- I had an open excision that they packed to close from the bottom-up, and it has been a year and half and my wound is STILL open) but as someone who had the surgery during college I can tell you this- DON'T DO IT right before school starts. I left a few days early for spring break so I spent a week and a half flat on my stomach, but from March to May I was absolutely miserable. Yes, college classes are shorter than high school and are not every day, but it was agony for the first month or so. I had a 2-hr lecture and my professor happened to be the nurse in the health center, so luckily she knew what was going on and would let me stand during class or sit on the floor so I could kneel instead, but in other classes it was torture. I would definitely wait until Christmas break and have it done at the beginning so she has several weeks at home to recover.
     
  7. Robert Eden

    Robert Eden Very Helpful

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    Sorry what you had to go through patchy! Luckily for many folks (especially first-timers) recovery from a cleft lift can be trivial. I never had much pain... laid down a little during the first few days, but I was able to sit in the car or at my desk almost immediately.

    I'm not sure how common it is, but that's how it was for me. The open wound from my lancing was more painful and work-stopping than the cleft lift.

    Robert
     
  8. Connie777

    Connie777 Helpful

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    My son is in the same spot. Our local colorectal "specialist" had never heard of the Cleft Lift or Bascom's procedure. We have an appointment on Monday in Miami (2.5 hours away!) to have a second opinion done by a doc there who does the Cleft Lift. My son starts college on Aug 19th and I hope to have the surgery done and him well on the way to recovery by then, but not sure timing will work out This is my son's first infection, but I wonder, if this procedure is as good as it seems to be, why do so few surgeons know about it? It seems like the answer to a prayer! Why haven't surgeons jumped on this as a better treatment? Even though his infection seems pretty small and this is his first problem, I don't understand why a doc would do anything else but resolve the problem, first time! Why should we be expected to go through an extremely long, painful recovery with higher risk of reinfection when a permanent, less invasive option is available? Makes no sense to me. Does anyone know why so few surgeons perform the Cleft Lift?
     
  9. LILLY

    LILLY Very Helpful

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    Connie my husband and I had the same thoughts. I imagine most people have the same thoughts when they first hear about cleft lift. It does sound too good to be true. If we had gone through with the open excision for my son it would have been very deep and very wide. The recovery would have been extensive. The cleft lift sounded like an answer to our prayers but we were skeptical too. It feels like you are out on a limb when no one around has heard of it. I don't know if anyone can answer why cleft lift and pit picking aren't taught as the standard. It doesn't make much sense. Those who do the procedures have had to go out of their way to learn about them. I am just thankful that there are surgeons who are taking the extra step and looking for better options for their patients. I'm glad to hear you are exploring all your options but the truth is some people do not end up needing any sugery at all. Some do have just one flare up and never have the problem again. I just feel like that fact has to be stated in any conversation about any surgery.
     
  10. Connie777

    Connie777 Helpful

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    Thank you so much for your reply! I feel like I'm all alone here (until I found this site!), just trying to do what's best for my son! I know surgery isn't always needed, but what I seem to find is that the recurrence rate is over 50%, and I know neither my son nor I ever want to have to go through this again! His physical makeup seems to favor this condition, very deep cleft and very hairy! I just want to make it all go away, but it seems that the only way to be fairly confident of that is to do this surgery. We have consult on Monday and we'll see what the doc says. If he wants to wait and see, well I suppose that's what we will do. I'd rather just get it done and over so my son can get on with his life!

    I've been looking at all the "conventional" literature and it seems this procedure is not mentioned at all, even on the site for the American Society of Colon and Rectal Surgeons! They say the "flap" procedure is very complex and only for the most difficult cases. I don't understand this at all! My sister is an MD and looked on professional (member-only) websites and said it seems to be more common in Europe and Australia.

    Just seems odd to me.
     
  11. LILLY

    LILLY Very Helpful

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    That's funny because it seems like members in Europe and Australia have had more difficulty finding surgeons to do cleft lift.

    I understand wanting to have surgery to be done with all of this. I just have to add that because my mother had only one flare up ever. Let us know what you find out at your consultation.
     
  12. Connie777

    Connie777 Helpful

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    I will! Thanks so much for the support!
     
  13. Sonspilon

    Sonspilon Helpful

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    This site is the best! My son is only 14 and we were told to go to a pediatric surgeon who took a quick glance at him and immediately scheduled him for some kind of flap surgery. Even talking to other doctors they said it doesnt matter who you go to they all know how to do the surgery. Right. So I did tons of research and found a doctor, an hour away that does the cleft and even has written papers on it. He said that we should wait because my sons pilo is so extensive. We have been using hydrofera blue and it looks like he's healing a bit. We booked his surgery for a week before school but I think this forum is making me think to change it to xmas break since that is longer.
    Thanks all! Good luck Connie!
     
  14. Connie777

    Connie777 Helpful

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    Good luck to you to, Sonspilon! Let me know how it goes! Your son's case sounds way worse than my son's! I'm so sorry you both are having to go through this! You're lucky to have a good surgeon so close! I've read recovery time from Cleft Lift is quite short, but if he can wait until Xmas break, that might be easier all around. We were thinking along those lines too, but I worry that it will reoccur before then and we'll be back to battling it. I am "wicking" his wound every day, and hoping it heals quickly! It's super scary for me, and he is totally embarrassed by it all. I'm curious to see what you decide to do. In what city is your surgeon?
     
  15. Robert Eden

    Robert Eden Very Helpful

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    I wish I knew the answer... my guess is that surgeons are very conservative and stick with what they know. In addition, here in the U.S. trying something new can cause legal and financial issues if it doesn't go well..... to the doc it's all risk, no reward (they don't suffer through recovery/recurrence).

    I know my doc was considering conducting some studies on the procedure.

    Robert
     
  16. Sonspilon

    Sonspilon Helpful

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    Connie, we live in NJ but our doctor is in Long Island. Sounds close but NY traffic is horrendous!
    What's "wicking"? I feel so bad for my son, every day I have to shove the blue sponge in his wound. He just started getting a round cyst like thing above his cheek that is leaking stuff. Ugh!
     
  17. Connie777

    Connie777 Helpful

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    Wicking is when I have to insert a 1/4" wide strip of gauze through the opening and into the entire length of the sinus tunnels, leaving a "tail" of wick outside the wound opening, in order to facilitate proper drainage of the tunnels. Wick must be removed every day and a new wick inserted. Sounds similar, though not as bad as what you are doing with the blue sponge. I'm not familiar with that technique, but I think my son's tunnels are smaller than your son's. Sounds very difficult for you both, physically AND emotionally! (Glad I don't have to deal with the NTC traffic, but Miami's is bad too -- not like NYC but still not fun! We will have to drive about 3 hours to doctor's. Hope it's worth the trip!)
     
  18. Linda2

    Linda2 Very Helpful

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    This is a really interesting discussion. I am over here in England, and it seems to me that more and more surgeons are doing the Bascom procedures even on the National Health Service. I know there are not many advertised on the Hall of Fame here, but I have heard of cleft lifts and pit picking being done all over the place in England, and even in Scotland and Wales. It would be a real pity if it is not spreading in the US - the country of origin. HOWEVER, I also know that some surgeons over here talk about 'flap surgery' and seem to think they can just do their own version of a cleft lift and it will be fine.
    As to why more surgeons don't use it - I believe there is a lot of misconception about cost etc. The head of our colorectal service locally (a real dig deep and wide man) told me that he had looked at introducing cleft lifts but could not afford to have patients in hospital for the 5 days the drain was in!!!!!! He was very surprised to hear that my son was discharged with the drain still in and returned to hospital on day 5 for removal.
    I guess Robert is also right - surgeons will stick to what they know, and at the end of the day, they are not the ones dealing with wound problems. Digging out is very quick and relatively easy - so I suppose it is going to be a while before they are all convinced.
    Good luck to all.
    Linda
     
  19. Connie777

    Connie777 Helpful

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    First opinion we got was from a traditional surgeon, who said this is what is ALWAYS done, and his experience is that it is very effective, with slow but sure healing and a low rate of recurrence. This may very well be true, since I'm sure we only hear the horror stories, since those with successful result drop out of the discussion and go on with their lives. BUT what I don't understand is that if this procedure is superior in every way, which it seems to be, why wouldn't the surgeon want what's best? Why wouldn't the surgeon want the smallest amount of tissue removal, the shortest recovery time, and the lowest recurrence rate? I suppose everyone here is right, that it's the old "this is what I've always done" philosophy, but I find that pretty sad. As has been said, the surgeon isn't the one who has to deal with the pain of a long recovery, nor is he the mom who has to watch her child suffer through not only the surgery but a very slow and very painful recovery process! Aren't doctors supposed to relieve suffering???

    Anyway, it seems I've hijacked the thread (Sorry to the OP!) and the original question was, after cleft lift, how soon can a PD sufferer realistically expect to be able to return to school? My son will be starting his freshman year of college on Aug 19th. Would it be possible to have the surgery in early August and expect to start on time without too much difficulty? People out there with experience, should we wait and have procedure done at Xmas, with the risk that a flare-up could occur before then? We don't EVER want to go through this again!
     
  20. Anonymouse1

    Anonymouse1 Helpful

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    Hijack away Connie! The more the subject is discussed the more reassured I feel! I really want the doctor to OK the cleft lift when we go to see him next week. DD has been dealing with this for two years and although initially we could deal with flare ups with an antibiotic, now the flare ups occur as soon as she stops taking them! She has three pits and a sinus that continuously drains. It would be wonderful to send her off to college disease free and not dealing with worrying about taping on gauze pads or leaking through clothes!! Start date for her is August 29th so we have a little wiggle room as long as the surgeon has time in his schedule - that's one of the glitches in my plan that I see. That and him saying DD is not a good candidate which I read somewhere on the boards yesterday and wished I hadn't because that got me worrying again :eek:
    Connie, if all goes to plan, you and I may be sharing our adventure together!
     

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