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

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

  1. Connie777

    Connie777 Very Helpful

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    Anonymouse, why did the doc say your daughter was not a good candidate? Sounds like she is the exact candidate this surgery is intended to help! I wonder if you shouldn't seek a second opinion? I am so sorry you have to go through the suffering both of you are obviusly going through! I had no idea so many people suffered this way!

    If it makes you feel better, my son's doctor (soon to be doctor? -- actually his nurse -- as we haven't had consult yet. First appointment is for Monday. This will be our second opinion.) says surgery takes about an hour, 4 hours later he can go home, with drains in place. Return 2-3 days later for drain removal and check on wound. Return 7-10 days after that for final follow-up. He says after drains are removed, no creams, no bandages, no drainage, just keep it clean and dry (dry with blow dryer after showering.) He said he could return to more-or-less normal activity within a few days of surgery! Actually said early-on, they want them to sit on the wound, as it pushes fluid accumulations out so flap adheres better. So sounds like 2 weeks, start to finish! If school doesn't start until the 29th, you have plenty of time!

    Can anyone out there who's had this done verify this?
     
  2. LILLY

    LILLY Very Helpful

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    Cleft lift does provide a quicker recovery but I believe that the surgery does require more skill on the surgeon's part. It is a precise operation. They need to know exactly where to cut for the right outcome. Not all surgeons will end up being comfortable with it. It does slightly change the look of the butt crack and the best results come from skilled hands.

    As for recovery time that does differ a bit. If there is one small area at the top of the butt that recovery will go quickly. The lower in the cleft, the number of cysts, the number of pits/sinus/tracts, and the amount of scar tissue from previous surgeries and lancings all play a part in how extensive the recovery is. I would not suggest leaving less than two weeks for recovery. Most normal activity will feel ok by then. For some it will remain tender for another week or so. I really should bring my son's thread back up because I can't even remember myself just how things went day to day.

    Not many are turned down for cleft lift so this should not be a concern for you.
     
  3. Sonspilon

    Sonspilon Helpful

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    Connie and Anonymouse1, I too am debating about the best time my son should have his surgery. He is starting high school on September 9th and right now is scheduled for the cleft lift on September 3rd. I am really thinking this is not enough time and I certainly don't want him to miss his first days of H.S. The other option would be xmas break on 12/23 (his birthday) and then he will not have to go back to school until January 2nd.
    I really hope we get some feedback as to how long, realistically, it takes to go back to work/school.
     
  4. LILLY

    LILLY Very Helpful

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  5. Linda2

    Linda2 Very Helpful

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    Hi, my son had a cleft lift and I would say 3 weeks is very realistic in terms of returning to school/work. BUT I personally would not be happy to have been too far from the surgeon until after 4 or 5 weeks, as like every surgery, things can be complicated or infections can set in. I would go for the longer option to be sure. Take note of Lilly - so much depends on where the problem is and how big it is. The lower in the cleft, the greater likely hood of some minor complications. But for sure, your best option by a mile!
     
  6. Connie777

    Connie777 Very Helpful

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    I am NOT happy that the only surgeon I can find to do the cleft lift is so far away! I worry a lot about complications or problems. But my local alternative is excision with open healing, and I just don't want to go that route. So all I can do is hope all goes well. I am discouraged that there are not surgeons closer.

    I live in Cape Coral, FL, just outside of Ft. Myers. Anyone know of a surgeon closer than Miami?
     
  7. Anonymouse1

    Anonymouse1 Helpful

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    Connie, the doctor hasn't seen DD yet. I wrote that I was concerned he might not approve her for surgery because I read on the forum that this happened to someone. Our appointment isn't until Wednesday of next week.
     
  8. Connie777

    Connie777 Very Helpful

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    Anonymouse1, I can't help but think your DD is the exact patient this procedure was designed to help! Please get back to us on Wednesday after your appointment to let us know! I'm certain he will agree this is the answer you've been looking for!
     
  9. Razzyirt

    Razzyirt Very Helpful

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    Hi All;

    I'm jumping in a bit late to this thread...but I thought I would address the concern regarding being a distance from a cleft lift surgeon. It is possible to be "far away" from the surgeon and still have a successful cleft lift...and believe me, it is completely and totally worth it!

    If you would like a personal experience regarding traveling for a cleft lift, and day to day recovery from what an extensive cleft lift surgery is, please see my previous posting (and I should post again on it here...as I am almost 6 months out!). I traveled internationally for mine (it was about a 6 hour flight, then there were the airport wait times, car travel, etc....just the hotel to the airport on the way home was an hour drive). I also had a severe case of pilonidal disease and had an abscess the size of my fist, going down to my tailbone, removed...and I'm left with just shy of a 9" scar. All told, the recovery was not nearly as bad as I had pictured in my head (and if I had gone with open wound, I have no doubt I would still be healing by now!)

    I returned to work just before 3 weeks. The first little bit was rough, but it got better and better each day. Driving took the longest for me (I don't think I could drive for about 5 weeks...just the bucket seat put too much pressure on the area).

    If you have any questions about my experience...I'm happy to answer them!
     
  10. Connie777

    Connie777 Very Helpful

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    Fascinating, Razzyirt! Where did you fly from/to? How long did you stay in the city where the surgery was performed? How is it doing now?
     
  11. Razzyirt

    Razzyirt Very Helpful

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    Hi Connie!

    I flew from mid-Alberta, Canada to San Francisco, CA. The surgeon I went and saw was Dr. Sternberg. He is one of the pioneers in the cleft lift and worked directly/trained with Dr. Bascom (I did contact Dr. Bascom directly, but he was on sabbatical). It was definitely well worth the cost/flight (I paid for everything entirely out of pocket). There are no cleft lift surgeons in Canada, and my only option given was an open wound excision. The surgeons here assured me it would be a minor procedure etc. etc...but it turns out the disease was extensive below the surface. There would have been no way of telling until they got in there. Dr. Sternberg was even surprised at how bad the disease was as my first presentation.

    Anyway...I flew into San Fran on Monday evening because I had my consultation with Dr. Sternberg bright and early Tuesday morning. The surgery was Wednesday afternoon. All in all, it was about an hour and a half, I stayed for around 3-4 hours and then went back to the hotel. I had the drain removed the following Friday (not the immediate one, but the next one). Dr. Sternberg assured me I could return home 4-5 days after the procedure and remove the drain at home, but I opted to stay the entire time and wait until the drain was out (just to make sure I didn't have any complications). I flew home the Saturday after I had the drain removed (so I stayed about a week and a half total).

    As for how I'm doing now, it's been about 5.5 months and I'm doing great! It was the best decision I could have made when it comes to pilonidal. Worth every penny, every amount of anxiety, you name it. I have been bike riding, can drive, sit on hard floors, do squats and pretty much anything else I can think about. I do get the occasional twinge and aches, but it is starting to feel pretty much normal. The nerves are coming back, the scar is stretching out nicely and the numbness is subsiding.

    If you have any other questions, just let me know!
     
  12. Connie777

    Connie777 Very Helpful

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    Thanks for all the information, Razzyirt! If I could ask a few more questions? (OK, more than a few!)

    You said this was your first episode of Pilonidal abscess? What did the original abscess involve? Large hole? Lots of sinus tunnels? How did you treat those? How long did it take you to heal from it? Were you completely healed when you flew to San Fran? Do you mind telling me approx how much the entire surgical portion of your trip cost? You don't have to say if you'd rather not.

    I admire your courage! It must have been quite difficult to travel all that way to have a procedure like this! How did you find out about the cleft lift procedure? How were you able to contact Dr. Bascom? Did you feel his office was helpful to you? Did they refer you to Dt. Sternberg? I assume Dt. Sternberg's office arranged for the process to be expidited because you had traveled. How long did you have to wait to get an appointment?

    I've read quite a bit from your doctor's website. I'd love to have him do my son's procedure, but I'm sure it's not possible for us.

    Sorry to bombard you with so many questions! Thanks for all your information!
     
  13. Connie777

    Connie777 Very Helpful

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    I read somewhere on this site that some docs call the excision with closure a cleft lift, even some listed on the surgeons page on this site! This scared me a great deal! So I called my doc's office, just to be certain. His nurse reassured me, telling me that my doc trained directly with Dr. Bascom! I feel much better now! She did say he got his training in 2012, and they are keeping count -- they have done 12 so far. That's not really that many, but she did say ALL have had successful outcomes. Wait, that would mean that WE would be the dreaded number 13! Uh-oh! If I were superstitious, I might be worried! (Said as I bite my nails slightly! Hahaha!)
     
  14. Razzyirt

    Razzyirt Very Helpful

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    Don't worry...pester away with any questions you have! I am happy to help.

    Let me try to make this coherent though, lol! Ok...short summary of my pilonidal journey (believe me, it felt like a horrifically drawn out process to me!). I never had any issues, not even a twinge in my tailbone or funny feeling until after I had a serious car accident in November 2012. I ran into a car making a left hand turn that didn't see me (still...blah!). I ended up with pretty bad damage from my neck all the way down to my tailbone. At first they thought I had broken a bone somewhere and that was what all the pain was. It became excruciating but it looked completely normal from the outside. I couldn't even walk. I was popping T3's like they were candy. Then about 2 days after the pain started my whole sacrum and tailbone area swelled up and the abscess finally surfaced. It was fairly large, right at the top of my butt crack, about 1.5 inches across. I went into my GP, who told me to go to the ER and get it lanced and drained properly.

    Long story short, I did that (it was horrific) and it actually never healed. I had a home care nurse coming every second day to change the packing (she could put a lot in that little sucker!). It hurt like hell, every single time. It was agony. I had to take 2 percocets just to get through it. I spent from the end of November to January doped up on drugs, trying to get this thing to heal. I was referred to a wound care centre, who also couldn't get it to heal. By mid-January, I was fed up and the tissue had actually started to break down around the wound. This entire time I was waiting to actually go see the surgeon here in Canada...as the wound care centre was trying to limp me along to get to the point where they would "cut away all the bad stuff". Mine was weird though, from what I have read on here...as I had several pockets they could feel, that kept filling with pus and they had to drain every day. All of this added up to me deciding there was no way in hell I was doing the open wound excision...if a small incision from the lancing was this awful, there was no way they were making it bigger!

    I learned about the cleft lift from this website actually. And I went through my GP to try to find a surgeon in Canada that would do it. No one does. So, I picked up the phone and just started calling surgeons from the "surgeon hall of fame" list on this website. I started with the States closest to me and worked my way out. I wasn't having too much luck (either they didn't do the cleft lift, or they didn't take international patients) so I decided if I was going to do this, I may as well go to the best...so I phoned Dr. Bascom. His office, and himself, are just amazing! His office walked me through everything (how it works to go to the US for surgery, what it costs, how I pay, what the recovery is like etc.) and Dr. Bascom phoned me several times and talked with me for several hours to go through all my options and what he thought was best (and this was after he knew that I wouldn't actually be able to have the surgery from him). I spoke with him about Dr. Sternberg, and he said I would be in good hands. The rest is sort of history :)

    As for surgical costs....I'm happy to spell them out (and I have several times, everyone wants to know, lol!).

    Surgeon's Fee: $5800
    Anesthesiologist Fee: $800
    Surgical Suite: $4300 (I can't quite remember this one off the top of my head...but it was around there)

    Every penny was worth it. Dr. Sternberg is amazing, the anesthesiologist I had was the best I've ever had and the surgical suite was incredible. I can't speak highly enough about the experience I had. I have to admit...they sure do treat you nice when you're paying for it!

    And Dr. Sternberg's office was great. I harassed them a lot (I was really nervous about the whole thing!) and they kept walking me through everything, before and after the surgery. After I had contacted the office, I had my surgery booked for 3.5 weeks later. It all happened fairly quickly. Which, looking back on it, it was a good thing...as my wound wouldn't have lasted much longer (they were putting silver nitrate on it weekly and the tissue was dying).

    I'm thinking that answered most of your questions :) If I missed anything, let me know. And don't worry about asking questions...you should have seen me before my surgery, I was bombarding everyone on this site and anyone who would talk to me :p
     
  15. Razzyirt

    Razzyirt Very Helpful

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    Hmm...my second little post didn't seem to work (just watch, it'll post twice somehow!) but I was going to say that my surgery was February 13, 2013...and it made me hesitate a little too! lol, at least it was a Wednesday and not a Friday :p
     
  16. Sonspilon

    Sonspilon Helpful

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    Razzyirt, thank you for all your great info.
    One question, what do you mean by your "wound would not have lasted much longer"?
    My son's tract seems to be getting longer and longer and you can see how it attaches to the sinus. I'm just afraid the whole thing is going to open up and instead of it just being open on his "crack" it's going to start opening on his back too.
     
  17. Connie777

    Connie777 Very Helpful

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    Thanks for the very informative reply! I feel fairly confident this is the right thing for my son. Now all I have to do is stay calm until Monday! I will definitely post after the appointment to report my outcome! Thanks so much to everyone here! You all have been so very helpful and supportive!
     
  18. Connie777

    Connie777 Very Helpful

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    Sonspilon, please don't forget to post Wednesday after your appointment and let us know how it went!

    We can be cleft-lift-buddies, go through it together!
     
  19. Anonymouse1

    Anonymouse1 Helpful

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    Razzyirt, your posts about surgery and recovery are what had me researching and finding a doctor to get a second opinion for DD. So thank you for baring all and sharing your story :)
    Connie and Sonspilon, I'll let you know how our consultation goes on Wednesday. It looks as though next week is going to be busy for a lot of us! Good luck everyone. :hug:
     
  20. Connie777

    Connie777 Very Helpful

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    Oops! I meant you Anonymouse1! Sorry! I'm so confused!
     

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