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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    Good luck with your phone call Connie! It's so frustrating because I know you and your son are ready for this to be over. Such a rotten disease. My DD said yesterday that her concern is that the surgeon will find infection under the lancing and will want to wait. Her comment was "since this thing is ALWAYS infected, when will be a good time for surgery?!" I understand how frustrating this is for our kids - they have to try and have a normal teenage life with a draining sinus.
     
  2. Connie777

    Connie777 Helpful

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    Yeah, that's the real problem! It all totally stinks for us, but it's a whole lot worse for them! We all just want to help our children just get over this and move on with their lives!

    I will call Dr. Bascom's office this morning (given that it is 3 hours earlier there!) I will report what he says. Question is, how do I get my doctor to listen if Dt. B says it's ok to operate with open draining wound?
     
  3. Linda2

    Linda2 Very Helpful

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    I think it does sound as though he knows what he is doing - but if you check with Tom Bascom you will be certain that you are covering all possibilities. I am sure surgeons would rather wait until infections have cleared, but I think you need to know what happens if it does not clear. When my son had his cleft lift done, the surgeon said that it had been pretty icky in there, with a lot of infection in the sinus - but it did not seem to matter (fingers crossed!!!!). But anyway, don't be discouraged - you are doing absolutely the right thing for your son. I went the full round of surgeons and we always discussed what one had said - in fact I took all the letters with me - none of them seemed to mind that we had spoken/seen other surgeons. At the end of the day, you don't want to get to the 6th and find that he cannot have the surgery. That would be really hard.
    Let us know how you get on
    Linda
     
  4. Connie777

    Connie777 Helpful

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    I will!

    Thanks so much to all of you! You're the BEST!
     
  5. LILLY

    LILLY Very Helpful

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    Connie I'm with you. I just wanted to say that. I always discuss what happens on the forum with my husband. Last night we talked about this tread. We both had the same feelings as Linda. We don't want you to be turned away on the 6th. My husband said don't push, so I didn't. We both went to bed hoping that you would get up this morning and decide to call. Will wait to hear what you find out.:)
     
  6. Connie777

    Connie777 Helpful

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    Hi again! I spoke to Michelle, Dr. Bascom's surgical coordinator. What a kind and helpful person she is! She said they receive calls from all over the country every day! She said Dr. Bascom is happy to discuss this condition with anyone! They send out an email which we fill out and return with details of the history of the disease and photos, and anything else pertinent to the case. Then Dr. Bascom reviews the history and photos and schedules a time for a phone consultation! At that time, they said he can discuss how to request that the surgery proceed even if the wound is still open and draining. So now I'm waiting for the email, but I plan to call my surgeons nurse to discuss this, and perhaps they will reconsider without me having to disturb Dr. Bascom!

    But the best news is that, after only 2 applications of this BFI powder, the wound looks MUCH better, and has dried up! It's still open, but is only draining a very small amount! I'm so pleased! The home health nurse came today for a check-up and even she was surprised by how good it looks!

    So things are looking good! Michelle did say that just today they saw a patient from Florida who had trouble finding a surgeon locally, so flew in for the procedure there! I suppose, worst case scenario, we can take a little vacation to Oregon! I hear it's really gorgeous there!
     
  7. Linda2

    Linda2 Very Helpful

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    Well done Connie - fingers crossed!!!
    Linda
     
  8. LILLY

    LILLY Very Helpful

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    Good for you! Moms get things done!
     
  9. Connie777

    Connie777 Helpful

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    OK, so I talked to my surgeon's coordinator and she said (not in these words) every doctor has their own style and way of doing things and this surgeon will NOT operate if there is an infected wound. No discussion. So, ok, I guess we're going to hope everything is healed by the 5th. If surgery is cancelled, I guess we'll have to weigh our options. Harumph.

    Guess there's really no point in answering Dr. Bascom's email until we see how it goes on the 5th. I'll hold that option open, and if need be, we'll shop around for another surgeon!

    A mom's gotta do what a mom's gotta do!
     
  10. LILLY

    LILLY Very Helpful

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    An open wound is not always an infected wound. I'm not understanding why they don't see the difference.
     
  11. Connie777

    Connie777 Helpful

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    He did say the drainage was "foul smelling", but it's not so much that I ever noticed it. Drainage is much less today, as I said, so I'm hoping that in two weeks' time, it will be healed and dry and all my worry will be for nothing!

    I did ask if we could bump things up, but was told there were no openings before our scheduled time, so we'll just have to wait and be patient. Patience is not my strong suit.

    I'll be very interested to see how the others do with their appointments tomorrow! Crossing fingers for all to go well for them!
     
  12. LILLY

    LILLY Very Helpful

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    In any case you do have options. I will offer up my surgeon also with no hesitation-Dr. Rosengart Pittsburgh Pa. His practice is 60% pilonidal and he has done hundreds of cleft lifts. He will also speak to you on the phone and I don't believe the process is as official as Dr. Bascom's office. Just an option. I don't think it would be as beautiful of a vacation as Oregon (no offense to Pittsburgh) but the medical care is top notch, and the distance would be shorter.

    For now I'll hold out hope all goes well for your "local" surgery to go through.
     
  13. Connie777

    Connie777 Helpful

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    Thanks Lilly! I might just give your doctor's office a call and ask a few questions! Can never have too much information!
     
  14. Sonspilon

    Sonspilon Helpful

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    Connie, where are you located?
     
  15. Connie777

    Connie777 Helpful

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    Cape Coral, Florida, just west of Ft. Myers.

    We are on the southwest coast, about 100 miles south of Tampa, 30 miles north of Naples.
     
  16. Razzyirt

    Razzyirt Very Helpful

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    Hi Connie! I agree with you, Dr. Bascom's and all his staff are wonderful! I spoke with both Michelle and Dr. Bascom at length before I ended up flying to San Fran to get my cleft lift from Dr. Sternberg (as I said previously, I would have had mine done by Dr. Bascom but he was on sabbatical for 4 months and I couldn't wait). I would say it is definitely worth the trip though! Dr. Bascom, Dr. Sternberg or Dr. Rosengart are all supposed to be excellent! And I am sure there are others. Good luck and keep us posted!

    As an aside, I have also heard of the cleft lift being performed on open, draining wounds. Mine was actually open, draining and actively infected when I had my cleft lift. There was an inordinate amount of gunk in there from what I was told!
     
  17. Connie777

    Connie777 Helpful

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    Thanks for the information, Razzyirt!

    I plan to see what happens on Aug 5th. If the surgeon feels he can't do the surgery, I will start shopping for another surgeon. I might have to travel to Pittsburg, San Fran, or Oregon.

    In the end, I will do what I have to do to get the best treatment for my son.
     
  18. Anonymouse1

    Anonymouse1 Helpful

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    Hello again everyone. Here's the scoop on our consultation with the colo-rectal surgeon today. Firstly, he is a very knowledgeable guy with a fantastic bedside manner - basically the complete opposite of our general surgeon! My plan was to sit and listen to what he had to say without prompting to see how well-versed he was in all things pilonidal. He started right off the bat by referring to it as pilonidal disease and gave a long a detailed explanation to DD about the forces involved with sitting and standing and suction basically pulling in hairs and other junk and how the natal cleft is an anaerobic environment which is why this disease is hard to resolve. He then proceeded to tell us that there are as many ways to approach treatment as there are surgeons out there, and most of them not good! He then listened carefully to DD as she explained her history and her fears about going to college with an open wound. Only then did he take a look at her posterior! On a side note, colo-rectal docs have the best designed beds for looking at your tush while keeping the patient comfortable! He said the lancing looked good and there was no infection present. He pulled out a bunch more hair from the pits without even trying :eek:.
    He then said she was a good candidate for the cleft lift - which he explained was a surgery that stayed off the mid-line, kept most of the tissue intact and flattened out the cleft allowing for optimal healing Good man! A passive drain is placed during surgery - the way he explained the drain sounds exactly like Razzy's.
    He pointed out that the cleft lift is still surgery, and although it has good results, it is still a surgery that he optimally would like to give patients (especially active, college-bound students) a good 3 weeks to recover from. He said that as with anything there is a small chance of complication from healing. He said that he would like DD to find a good colo-rectal doctor in her new college town so that should there be an issue (no matter how small) that she was prepared and had somewhere to go where they understand the disease. Right now we are waiting for a surgical date. Our doctor performs cleft lifts with his colleague as an assistant (and vice versa for the other doctor's patients). They have to co-ordinate their schedules. He said we left him with a bit of a time crunch for scheduling, but he understood our need to get this out of the way before college starts and understood that we had been misinformed about the gravity of open wound healing by the general surgeon. He'll do his best to get us on the schedule but if it doesn't work out that we can do this over Christmas break.
    So that is where we are right now. DD felt a lot better after meeting this doctor and so did I. He and his colleague learned about the Bascom cleft lift several years ago at a colo-rectal conference in Florida. Between them both they've performed a lot of cleft lifts with good results.
     
  19. Connie777

    Connie777 Helpful

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    That's wonderful, Anonymouse1! I think you had a better, more confindence-inspiring experience than I did! I am so happy you found an excellent surgeon in whom you can have confidence! Sounds like he is a great choice for you.

    I hope he can fit your daughter in so she can get treated with time to recover before college.

    Keep us posted with updates as they become available!

    You must feel terribly relieved right about now!

    Great news!
     
  20. Anonymouse1

    Anonymouse1 Helpful

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    Thanks Connie! I'll update as we get a date and then as DD goes through surgery.
    I hope your son's wound is looking good today.
     

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