Razzyirt's Cleft Lift - An International Experience

Discussion in 'Pilonidal Discussions' started by Razzyirt, Jan 30, 2013.

  1. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Post Op Day 8....

    What a difference a day can make....today was a pretty good day! I have now switched from Percocet to Tylenol #3 and the pain has been fairly well controlled. I am much less nauseous and foggy than when I was taking the percs. I also think they contribute to my jitteriness, so it's nice to be off those.

    There hasn't been a lot of drainage today. And there has been more of the thick, whitish drainage. I honestly do think its normal, but the surgeon is going to check it out tomorrow.

    I have had a significant amount of healing. And a hard ridge of tissue has formed where the suture line is. I was warned this would most likely happen, and is a good sign, as it is called a healing ridge. I am having some issues with the drain and it is now significantly uncomfortable. Hubby has to put in quite a bit of work to the daily rolling now to get the drainage out.

    It has healed up to the point where it will not allow a lot of the fluid out anymore. The rolling is still really uncomfortable. And I am looking forward to the drain coming out tomorrow. Scared crapless about it....but also can't wait for it to be gone!

    I find the best way to push the fluid out now is to work on sitting for periods of time. I'm still using my tush Cush (as I said, just not ready to give that one up yet!) but I am sitting more frequently in the desk chair in the hotel. I am thinking that sitting will be a lot more comfortable once the drain is out.

    Lastly, I am starting to go a bit stir crazy living out of a hotel room. I am finally feeling well enough that I'm looking forward to going home. I am nervous about returning home as well though, as I will be a long way from anyone who knows abut PA. And I worry that something will happen and I'll be a long way from the surgeon.....again, the joys of traveling for major surgery...
     
  2. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Post Op Day 9....sans drain!

    What a huge relief to finally have the drain out! I was really nervous in the surgeon's office...but to be honest, I didn't even realize that he had pulled it out. It was actually sort of funny, as I was lying on the table, starting to hyperventilate and trying to prepare myself for the drain to come out...asked Dr. Sternberg when he was going to do it, and found out it was already over! :p

    He figures it will be about 10 days or so before the wounds from the drain heal up. I asked about when I can start doing things like squatting and bending, and he said to give that another week. At the end of 3 weeks post surgery, he said I can start exercising again and doing other physical activity. And by 1 month post surgery I can try riding a bike or horse if I want to!

    Now, I still feel that's a bit optimistic. But I have found that Dr. Sternberg is a firm believer of getting right back out there and trying activities. He believes that you should start sitting from day 1 and constantly be out there and active. I can definitely say his positive attitude is infectious, and I have pushed myself harder than I ever thought I would this close to surgery. To be honest, I think it helped.

    I'm a nervous nelly (nooo...never gave anyone that impression eh? :)) and I found it helpful to have someone tell me to get out there and push myself back to normal. That I wasn't going to break. And yes, I've had pains and aches....but, so far so good, and I am doing pretty good (still a worrier....but, one day I'm hoping I'll worry a little less!)

    I am to take antibiotics for the full 2 weeks post surgery, and continue the routine of showering after every BM. The drainage that I am having is all perfectly normal, and no sign of infection thus far (keep your fingers crossed!) I am to call the office in 2 weeks to give an update on my progress, and then send in pictures and an email to do a formal follow up in 1 month. If anything comes up in between, I am free to call or email.

    Also, I asked about the little scare I had with the build up of fluid last Wednesday...he said that that can happen, and is nothing to worry about. So, in the grand scheme of things, just one more learning experience :p

    After the appointment, I had some shooting and stinging pains in my bum cheek, where the drain was. But it felt a heck of a lot better! We went for a walk to the Bay and saw the Ferry Building (the first tourist-y things we have actually done on this trip!) In total, it was a solid 2 hours of walking around. By the time we got back I had some pretty good aches, but it was nice to at least have seen some sights.

    Tomorrow will be another milestone adventure, as I have a good 3 hour flight. We'll see how that much sitting goes (but, on the plus side, once I handle that it means I can go see a movie no problem :p)
     
  3. Robert Eden

    Robert Eden Very Helpful

    Joined:
    Jul 10, 2012
    Messages:
    777
    Helpfuls Received:
    105
    Location (Country):
    Texas (USA)
    Congrats Razzy! Sorry you didn't get to play tourist more...but I'm sure you want to go sleep in your own bed!
     
  4. Jaredsmom

    Jaredsmom Very Helpful

    Joined:
    Sep 10, 2007
    Messages:
    1,967
    Helpfuls Received:
    46
    Location (Country):
    USA..Pennsylvania
    Hooray for you, Razzy!! I've been following your updates with rapt attention!!! Your daily blog like updates are going to be soooo helpful to those cleft lifters who come after you. Your posts show the ups and down, the joys, the worries, the fear, the hope.....all of which are a part of Pilos and of cleft lift. Because I tend to paint a picture that is all butterflies and roses, for two reasons..... one because Jared's pilo disease was not very severe yet because we caught it early and had it fixed right away...with cleft lift. So his surgery time was much much shorter than expected, and easier...hence the pain was minimal. Secondly is because it was 5 years ago and time tends to fade those memories of the scares, the worries and the fears. Which is why your posts are so important....

    They are a day to day accounting of your cleft lift journey. They are priceless to you when you look back on this all years from now....and to those cleft lift patients in the future.

    Hugs and happy healing!!!:hug:
     
  5. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Robert and Jaredsmom, thanks for the support! This,forum has been a great sounding board for me in this whole process!

    Post Op Day 10.....earlier morning

    I was going to put a small update as my flight is in the later afternoon and I probably won't get the chance to post until tomorrow.

    Hubs and I went out for supper last night and I sat for 1.5 hours! I'm not going to sugar coat it though, sitting HURTS! I know others have had no issues with sitting...but I get sharp, intense pains on and off. And the pains can be so bad, they take my breathe away. Now...I don't want to freak anyone out, keep in mind I also have significant lower back and sacrum damage from the car accident. It can be hard for me to distinguish which pain comes from what sometimes!

    Also, the wounds from the drain are super tender and sore right now. They are about 1-1.5 cm in diameter and 0.5 cm deep, and there are two. Those are the most tender spots right now on the surface. The incision is still fairly numb all the way along, and I still have a very firm ridge of tissue.

    Today was the first morning where I woke up and didn't have to reach directly for the painkillers. Which was huge for me! That's not to say it isn't sore...but the soreness is manageable. I went and sat through breakfast before I had to take anything. So, major steps ahead! I'm trying really cutting back on the Tylenol #3 today (I was taking 6-8/day) as I am starting to get constipated (in spite of still taking the stool softener). And believe me, the constipation does not make things feel good down there! So, my goal is to cut that in half (although, I will take 2 before the airplane....again, sitting it still really, really painful!)

    I am hoping to wean off any of the narcotic stuff within the next few days and just take the Motrin for a bit more after that (they wanted the Motrin for sure because of the anti-inflammatory part).

    My only other thought...I've had zero drainage since the drain came out. It's a little disconcerting, as it was draining right up to the moment they removed the drain. And then, poof, nothing! Makes me wonder where all that fluid is now just magically going (ok, add that to the worry list :p)
     
  6. Robert Eden

    Robert Eden Very Helpful

    Joined:
    Jul 10, 2012
    Messages:
    777
    Helpfuls Received:
    105
    Location (Country):
    Texas (USA)
    Hope you're having a safe trip. Don't surprised or scared if you get a small hole and start self draining from time to time. I did that off an on for a few months. If the fluid needs to go somewhere, it will. Your body can probably absorb small amounts itself.

    Robert
     
  7. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Day 11 Post Op....

    What an intense past few days. So much has happened. The flight was horrific. Out of the entire experience, I think that yesterday was pretty much the worst of it (even more so than the surgical day....ironically).

    Our flight left in the evening, and I didn't get home until 1am. We had a car pick us up from the hotel to go to the airport and it was very painful. I still really struggle with cars. I find it really hard to get in and out of cars. And then I just can't get comfortable. I think it's just the positioning of the car, how you're sitting more tipped back. By the time we made it to the airport I was severely uncomfortable. And we checked in at the international desk...and found out that we were supposed to go to the domestic desk (I still don't get this at all...since we were flying internationally...)

    Of course, the domestic desk was in a completely different area and a longggg walk away. By the time we made it there, I was starting to get tired. Then we did all the security stuff and I hobbled my way around. Finally, we got to the terminal and found a place to have a bite to eat. At this point I took 2 tylenol #3's and a bunch of anti-nausea medication to hopefully hold me through the flight.

    Now, I hate flying. I truly and honestly do. For many reasons...one of which is the being crammed into a tiny tin can :p Of course my seat was in the very last row of the plane, so I had to siddle my way all the way down. And, since I find sitting to still be quite painful...the sitting in the cramped little seat for close to 4 hours was a real challenge. Add to that the fact that I got horrifically motion sick (pain killers and planes...not a good combo for me...) and it took me a full 1.5 hours of deep breathing and fighting trying to throw up before it got a bit better. We also had a bunch of turbulence and a nasty landing. I was glad to be back on the ground!

    Once I was off the plane, I was in so much pain I had a difficult time walking. And of course it's a longgg walk to get through customs, get your luggage and get out of the airport. My dad picked hubby and I up and took us home. First thing I did was take 2 more tylenol #3's! Then I collapsed into bed.

    I have to admit, I slept like a log....the only thing I have a vague recollection of (of all things to happen) is I guess my cats were very happy to have me home. And my big goober of a tom cat decided to come visit in the middle of the night, and I woke up to him standing right on my cleft lift area, meowing away! So, that was a painful experience, but I fell back asleep pretty quick after pushing him off :)

    It is wonderful to be back home, but there is one downside I have found so far. There is a lot more pressure to push yourself as everyone wants to see you and do things, and life wants to take over. So, I'm pretty exhausted after today from visiting with family (to assure them that I'm alright and still kicking!)

    Tomorrow morning I have a follow up appointment with the wound centre, to have them assess how the incision is doing (they want to follow me until they are sure I'm healed up, then I'll be discharged). And my exciting news is that I found a temporary position that starts next Monday! So, I'm nervous as heck...as I haven't worked since the end of November, when this whole thing started. I am really hoping that I will be up to it by Monday.

    So, short summary....exhausted, quite sore...but doing a lot more than I have been doing.
     
  8. Robert Eden

    Robert Eden Very Helpful

    Joined:
    Jul 10, 2012
    Messages:
    777
    Helpfuls Received:
    105
    Location (Country):
    Texas (USA)
    hugs!
     
  9. nonstop

    nonstop New Member

    Joined:
    Feb 14, 2013
    Messages:
    13
    Helpfuls Received:
    0
    Congrats razzy, hope that the ordeal will be over soon!!!
     
  10. Jaredsmom

    Jaredsmom Very Helpful

    Joined:
    Sep 10, 2007
    Messages:
    1,967
    Helpfuls Received:
    46
    Location (Country):
    USA..Pennsylvania
    WOW.....what an ordeal!! What a tough cookie you are!!

    Jared endured a 3 hour Greyhound bus trip 3 days after his cleft lift....but as his surgery wasn't as extensive as some, or for whatever reason, he didn't really mind it....of course we paid for two seats for him so he could lie down the whole trip home. He did take a Percocet for the trip, so that may have helped also....

    I'll bet you are glad THAT experience of flying home is behind you! Sounded horrific. Now....you can rest, decompress and heal in the comfort of your own home....with help from your goober of a tom cat!!!:)
     
  11. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Hi all *waves* Thanks again for the support...we're already at Day 12 Post Op! I can't believe it...

    This morning I had my appointment with the wound care centre (the LAST one :)). The SWAT nurse had never seen a cleft lift before, and she was just amazed. She admitted to me that she was a bit skeptical about how well it would work, but now that she has seen it, she is flabbergasted that we don't have this procedure here in Canada. She told me that I don't have to come back, as there just aren't any wounds that need healing *does a happy dance*

    My drain wound is the only open area left now, and it is down to 0.5cm across and 0.3cm deep (they measured it today). So I just have to keep it clean and let it close up. As far as everyone can tell, the entire incision has already healed up. They just gave me a dressing to put over top the drain area so that gauze doesn't stick to it and slow the healing down.

    I spent today moving around and trying out different things. I went up and down the stairs a few times (first time doing stairs...the normal way! Novel concept :p), I sat at the kitchen table, and then I went for a walk with hubby and our puppy (who came home today from the pet sitter).

    I actually stopped taking the Motrin today. I just didn't feel like I needed it anymore. I am taking one Tylenol #3 every 4-6 hours now, mainly just to keep the twinges in check. I could tough it out without it at this point I think, but I'm more comfortable taking it.

    I still have pain. Mainly if I touch it at all (or something pushes into it), or if I try to move too aggressively. And by the end of the day I am sore. It is getting better day by day. The bane of my existence right now is the steri-strips. They still haven't fallen off...and I think they are welded to my skin. Dr. Sternberg said to remove them this Wednesday if they hadn't fallen off. I don't think there's much hope of them going anywhere...they've hardly loosened. So, I'm nervous about having to pull them off. Logically, I know that pulling them off doesn't mean the wound is going to magically all open up...but yah, all those irrational fears :p Anyone have any good tips for getting these suckers off?

    Lastly, some of the skin glue is starting to come off, and it kind of looks like flaking skin around the incision site. I'm glad I read others experiences with the glue coming off, so I wasn't worried when I saw that!

    Overall, I think things are going fairly well...just keep going day by day!
     
  12. Robert Eden

    Robert Eden Very Helpful

    Joined:
    Jul 10, 2012
    Messages:
    777
    Helpfuls Received:
    105
    Location (Country):
    Texas (USA)
    I'd suggest you show the doctor who did your open excision and maybe he/she will see there's a better way... but in reality, they probably don't care. :(
     
  13. LILLY

    LILLY Very Helpful

    Joined:
    May 17, 2012
    Messages:
    1,116
    Helpfuls Received:
    186
    Location (Country):
    Maryland, US
    Glad to hear you made it home safe and already have some work lined up! Sounds like you're on your way!
     
  14. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Post Op (Unlucky) Day 13...

    Today has not gone well. And I am now experiencing my first complications. Blah.

    Last night I was really uncomfortable. No matter how I tried to lie, I just could not get the pain to settle down. I was sort of in a half asleep haze, and I tried lying on my back, rolled over...felt this intense, sharp pain...and then ironically fell fast asleep (go figure!)

    Woke up in the morning drenched in bloody discharge (and I mean DRENCHED!) This wasn't a couple drops...I soaked through the gauze, my pj's and all my bedding. Fun, fun. I actually didn't really freak out (which is highly unusual for me...). And I calmly changed everything and put new gauze over everything. It all looks just fine. But I was definitely having more pain. I figured I must have just had a build up of fluid that had to get out and at least it was over now...

    At least, I thought that until I soaked through my pj's for the second time (this time awake and very much aware of the fact). And this has repeated all day. It has been steadily draining for the past 6 hours. I have to change the gauze every 15-30 minutes, as it is soaked through.

    So, I of course phoned Dr. Sternberg, who said this was a common complication (see...here's me, working on not panicking :p). Although, he didn't like the fact that it is still draining (typically, it has the "burst" style drainage like I had overnight and then stops). All of this means I have to return to my arch nemesis...the evil rolling!

    Hubby has to roll the flap 3 times a day again for the next 3 days. I also have to take another 2 weeks of antibiotics (this puts me at a high risk of infection now) and the draining should stop by no later than Friday. If it continues to drain this heavily by Friday, I have to call the office again.

    And, throughout all of this....I have been working on breathing and calmly changing my gauze. It's a double whammy, as hubby went back to work starting yesterday, so I have been dealing with this all alone (I miss my helper...where all I had to do was lie there and concentrate on breathing...). And of course I have to wait for him to get home to roll the darn thing to hopefully get some of the drainage to slow down...

    I'm fighting all the panicky thoughts, and the thoughts of bad things happening and being no where near the surgeon....
     
  15. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Day 14 Post Op...

    Two weeks out! Hard to believe how fast time is passing...

    Still leaking, but it has slowed down. I have the most fluid come out in the morning. So, at breakfast I sat for 2 hours to push out as much as I possibly could. I also went for a nice walk this morning with little pain. And I made it more of a challenge by walking a different path and going through some of the snow. I also did more stairs and moving around. Then I went for another walk in the evening.

    The bane of my existence today was taking off all the "steri-strips". Or what I thought were steri-strips...turns out it was a combination of that and large pieces of tape...welded on to my skin. It was a very un-fun experience. And I'm now covered in glue residue. Of course this typically loosens and falls off for most people...over the span of two weeks mine decided to weld itself like superglue. But, they're off now! And the incision looks pretty good!

    So, still sore, still leaking away...but I only took 2 T3's today for the pain...every day is better and better :)
     
  16. Jaredsmom

    Jaredsmom Very Helpful

    Joined:
    Sep 10, 2007
    Messages:
    1,967
    Helpfuls Received:
    46
    Location (Country):
    USA..Pennsylvania
    Geez, Razzy, these ups and downs are making me dizzy!!:p

    SOOOO glad to hear that the day 13 scare isn't anything major!! You had me worried there for a moment!!! Like your surgeon, Dr. Rosengart also pushed Jared to be active as soon as possible..... He had Jared sitting for short periods of time within 24 hours post op.... and encouraged him to get out and walk around Pittsburgh the day after surgery. I am supposing that the theory behind being active ASAP is so that as the wound heals and becomes scar tissue, you want it, the scar tissue, to be flexibile and resilient....able to stretch, flex and withstand the stresses and friction a butt scar MUST learn to withstand. Being active and sitting as soon as you can helps with this....it may be stressful and sometimes uncomfortable, but in the end, it pays dividends. I remember how terrified Jared was to sit that first time after his surgery, which was only like 11 hours later.... but it was what our surgeon encouraged.....and while it was only for 5 minutes, it was a milestone.

    So....stay active. You will be glad you did in the end.....

    And keep those updates coming.....they are so well written, interesting, entertaining (love your witty and funny additions), and chock full of information of what to expect post cleft lift.
     
  17. LILLY

    LILLY Very Helpful

    Joined:
    May 17, 2012
    Messages:
    1,116
    Helpfuls Received:
    186
    Location (Country):
    Maryland, US
    Jaredsmom I think it is interesting that Dr. Rosengart had such different instructions for our sons post op. My son was told to do what felt comfortable. I specifically asked him if we needed to try to push it with training the area to stretch and he said no. I guess it just shows that even with the same surgeon and the same type of surgery the instructions for aftercare will vary.

    Razzy when my son had his surgery I couldn't find much talk about drainage post op. For awhile I thought he was the only one. It turns out many contacted me both on the forum and through private message that looking back they had had drainage issues also. Some had it over months and some in spurts so you are not alone in that. For one reason or another it wasn't talked about much but it does seem to be pretty common.
     
  18. Jaredsmom

    Jaredsmom Very Helpful

    Joined:
    Sep 10, 2007
    Messages:
    1,967
    Helpfuls Received:
    46
    Location (Country):
    USA..Pennsylvania
    Perhaps you misunderstood. He did not tell Jared to push himself beyond endurance or to where he felt uncomfortable. He DID tell him to get up and start moving about asap, and also to practice sitting for short periods of time as soon as possible. He told him to start being active slowly. But sooner rather than later. I do believe that ANY doctor would say the same thing after a cleft lift unless there were extenuating circumstances. I.E. health problems that would forestall being active.

    One reason I hesitate to post ANYTHING....one can get tired of people misunderstanding what you are saying. Sigh. SO NO....he did not tell Jared to run a marathon or go mountain biking the first day ;post op. He DID tell him to practice sitting as soon as possible, and to take short walks....also as soon as he felt possible.

    Like I said, likely what ANY surgeon would say to a cleft lift patient without extenuating health issues. ALso, if you read my post with utmost attention, you will notice I said " I am supposing that the theory behind being active ASAP is so that as the wound heals and becomes scar tissue, you want it, the scar tissue, to be flexibile and resilient....able to stretch, flex and withstand the stresses and friction a butt scar MUST learn to withstand.". The key words being I AM SUPPOSING.... never said rosengart said do this or that to loosen up the scar. Just what I SUPPOSED. He could also just encourage activity as these young people need to get out and live life, not sit around one more day because of this disease. Who knows. But.... he did encourage activity. Not beyond endurance. But his parting words to Jared were to "get out and enjoy your summer".
     
  19. LILLY

    LILLY Very Helpful

    Joined:
    May 17, 2012
    Messages:
    1,116
    Helpfuls Received:
    186
    Location (Country):
    Maryland, US
    Jaredsmom apparently I have offended you and that was not my intention.
     
  20. Razzyirt

    Razzyirt Very Helpful

    Joined:
    Dec 2, 2012
    Messages:
    345
    Helpfuls Received:
    49
    Day 15 Post Op...

    I know that overall I am doing quite well...but I have to admit that I'm impatient. I just wish this whole thing was over and I was back to normal.

    Still leaking away, but it has slowed significantly. I tend to have quite a bit of drainage overnight, and then it sort of dries up during the day. I had quite a bit of pain today though. I think this is in large part due to the fact that this is the first day that the incision itself has been uncovered and exposed. Any movement would rub my clothes up against the incision and the sensation would drive me up the wall!

    I have also noticed a lot of stinging, sharp pains with movement. It doesn't happen if I'm careful and move slowly...but if I try to, say stretch my leg up to step up on something, I get this really sharp, stinging sensation along the incision. It feels quite superficial, and I think it's the scar tissue (my best guess at least) but it really hurts. I do still have some deeper pains, but those have been steadily getting better. I still need to take some pain pills, but it's fairly minimal. And I've only been having to take the pain killers in the evening, as it's by the later evening that I'm sore to the point that I want to take something for comfort. But, I guess I also have to keep in mind that I'm doing a lot more than I was before (today I went out to a doctor's appointment, the pet store, grocery shopping, for 2 walks, sat for about 3 hours total...)

    I've also been running into a few issues, related to the cleft lift, but not directly. The antibiotics have been breeding a nasty yeast issue (as I'm sure many of us are familiar with) and all the painkillers left me with a nasty fissure from getting constipated (I somehow managed to overcome the stool softeners...sigh!)

    So, 2 more weeks of antibiotics left (and I'm chugging yogurt and doing a chewable probiotic...) and now that I've been cutting back on the pain pills, the constipation has resolved (but, alas, I have to give it time for the fissure itself to heal up...)

    Bah, some day's it feels like I'm writing a saga :p
     

Share This Page