Razzyirt's Cleft Lift - An International Experience

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

  1. Razzyirt

    Razzyirt Very Helpful

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    Well...I'm back :p

    I said I would update this puppy if/when anything came up...and it hasn't even been that long! As of right now, I'm not exactly sure what is going on, or if it's something to worry about...but, here goes:

    Starting yesterday I noticed that the area was feeling a bit puffy and tight. And today, it is even more noticeable. At the top few inches of the incision, there is noticeable swelling and the skin is now red. It hurts, but it's really not too bad. And hubs gently poked all around the area and it was just numb in the actual swollen area.

    It's not majorly swollen, but you can definitely tell. I'm keeping an eye of the redness. But so far, localized. So....fluid buildup? Infection brewing? Those are my best guesses.

    Sent an email to Dr. Sternberg. But here is the definite downside of traveling a great distance for surgery! If it worsens, I will go see my family doc to see what she says. And I guess worse case scenario (if I start feeling sick or severe infection stuff) I'll head to the ER....

    Keep your fingers crossed this is only something minor! And I can return to my hiatus from posting :)
     
  2. Robert Eden

    Robert Eden Very Helpful

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    I seem to remember you planned for local after care if needed right?

    Feel better, it's probably nothing serious.
     
  3. Razzyirt

    Razzyirt Very Helpful

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    According to the surgeon, I'm a worry wart *laughs*

    It is still swollen, but it's the same. From what I can tell it's related more to work than anything (lots of moving and sitting). He figures it's some loose fluid moving around, but has no concerns and says to keep going as I am. So, that's what I shall do!

    It still hurts like hell by the time I get home from work...but I am putting in longggg days at a very stressful job. And I have an hour and a half commute, each way....which doesn't help. But, I am driving again. Which has helped a lot, it's great to have my independence back. Overall, baby steps. I have to keep reminding myself that I'm only 5 weeks post surgery :)
     
  4. Jaredsmom

    Jaredsmom Very Helpful

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    So, what 's wrong with being a worry wart? It's good to be cautious and careful.....:)

    Sounds like you are doing great.....that's a LONG commute!! the fact that you can do that so early post op is incredible!
     
  5. Razzyirt

    Razzyirt Very Helpful

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    2 Month Update....

    Hard to believe it's already been 2 months since I had my cleft lift! Progress has been slow, but steady. Every day, things do get a little easier. My drain wound, which was about the size of a quarter and 3mm deep, has FINALLY healed. Even though I was sure that open wound excision would have been a nightmare for me, now I have proof!

    I have no idea why I'm so slow...I have been taking a daily multi (with all the necessary levels for wound healing) and eating a balanced diet with plenty of protein (I have a lot of experience with diet and wound healing actually....it's part of my daily job). But, slow and steady I guess is better than never healing!

    The scar is still tender, partially numb and bright red in color. I get a lot of random zings and pulling feelings etc. But, I have been doing well. I don't need the coccyx cushion at all anymore. I'm driving again. I can sit on any chair now. Depending on the chair though, I may not be able to sit for long :)

    I am also able to squat down without any pain. I haven't started exercising again yet though. I have been hiking and taking long walks, and doing a bit of light jogging. But I haven't lifted weights or anything yet. Part of that is due to my back and other issues though. I am still steadily doing physio as well. I still can't take direct pressure on the area from the physiotherapist, but now she can at least manipulate it a bit without me trying to roll of the table.

    Still a lot of nerve-y stuff, and it can be hard to tell what is the surgery and what is the car accident (although I'm pretty sure the entire numb left leg would be car accident :p)

    As an aside, from the descriptions that others have given about their cleft lifts...I think I may have had the "max" cleft lift. I didn't just have a few inches at the top of my bum lifted....he shallowed out basically from my anus all the way up. A good 5-6 inches I would say (the scar I have is at least 8" long). I have to admit, I do think it looks a little strange. It's not fused together or anything like that, it just looks...different. I've been a bit self conscious about it (I mean, no one sees it but me and hubby) but hubby has assured me it's still the sexiest bottom he's ever seen *laughs*

    So, the long and short of it...many strides have been made but I'm still on my journey. By the end of the work week, I hurt. And I have to lie down and take pressure off my tailbone to give it a rest. But I'm doing most things again, and I'm very happy with my progress. Yes, it has been slower than others on this forum, but I want to give anyone considering the cleft lift all the information involved. You may not bounce right back. And you may not be at work within a few days. And you may be taking pain pills for awhile (it hasn't been a cake walk, it hurt and still hurts at times). But, I don't regret my decision. And I'm glad I took the matter into my own hands and flew to the US and had it done. And I strongly recommend to everyone with this disease to see a cleft lift surgeon and get the facts!
     
  6. Robert Eden

    Robert Eden Very Helpful

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    How's it going trying to get Canada to reimburse you since they don't offer it?
     
  7. Razzyirt

    Razzyirt Very Helpful

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    Robert....that has gone abysmally! I found out today that I have been officially denied any coverage.

    And if anyone is familiar with Alberta news...you may know of the story where a politician was reimbursed for all her expenses to travel to the Mayo Clinic to get a second opinion that her cancer was gone. They paid for all the treatment, the travel, her hotel, in room movies, expensive food and drinks etc. Meanwhile...I had the choice of a barbaric and outdated procedure that would have incapacitated me or traveling out of country for a procedure where I was back on my feet within 24 hours, back to work within a few weeks and didn't need home care or the SWAT nurse and wound care centre anymore (after months of both of those!)

    It frustrates the hell out of me!!!!!!!!!!!!! If they wanted proof that the open wound procedure would have been debilitating...just look at the fact that my drain wound is STILL healing. After 10 weeks, a wound 3mm deep is still healing on me! I KNEW that I was not a candidate for the open wound procedure. And the fact that Dr. Sternberg had to remove an abscess that went all the way down to my tailbone should have said something...

    Bah Humbug...I could rant on and on...but, I'm getting to the point where I want to call the media and call attention to this ridiculous situation....
     
  8. Razzyirt

    Razzyirt Very Helpful

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    3 month update....

    Things have been going really well! The progress has been slow but steady. It has been a long haul for me, and I find it hard to believe that it has now been 7 months since my car accident and this whole thing began.

    Still in physio, which is wearing thin I must admit. Besides the physio for the back, the whole physio thing has been really beneficial for my pilo and cleft lift scar. She has worked on having me stretch out all the scar tissue, and also manipulate the flap area so that there are no adhesions. I still get a few zings here and there, but it has gotten a ton better. As I type this, I'm sitting crossed legged on the couch with no issues.

    I would recommend to everyone with a cleft lift (and maybe even open or closed excisions) to work on steadily stretching out the scar tissue, because it really helps! And also, have someone (or yourself) gently massage the area regularly. At first I could hardly stand it, it felt so weird...but my hubby worked at massaging the whole flap area and moving the skin around. It was tender and sore, but it did get a lot better. And I found after starting this the zinging and nerve stuff started to calm down.

    I am also slowly working on getting back into activities. I can now ride a bike for 5 whole minutes! :p That is one activity that still hurts like hell though. I do miss biking, but I'm thinking about looking for a different bike seat. I have also tried some gentle squats with a low weight, and a few other light weight lifting things. It tends to hurt my back way more than the scar stuff though.

    I can sit on hard chairs and the floor now, but still not for too long. And I do still get sore...but I'm a million times better than I was. I've had no drainage since the first month, no more swelling or redness, and the scar and drain wound have finally closed up. The scar looks pretty ugly right now, it's a bright red, raised and about 4mm wide. Dr. Sternberg has assured me that this will fade in a few months. To be honest, it's not bothering me anymore. My hubby is the only one to see it, and he still tells me all the time how attractive my backside is :)

    So, I am still very happy with my decision to travel for the cleft lift. I think I'm becoming the poster gal for pro-cleft lift! I know there have been posts about some of the complications with the recovery...but, when I see all the posts with the horrific complications of open and closed excisions, I still don't understand why anyone WOULDN'T chose the cleft lift! Every surgery has risks, but you have to pick the one with the best chance of success!

    I will continue to post throughout my recovery and if anything significant happens. Onwards and upwards!
     
    Kay C found this helpful.
  9. Jaredsmom

    Jaredsmom Very Helpful

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    I hate to say "I told you so".....but.....I told you so!!!!:p Seriously, sometimes surgeons forget to mention it or don't think it's important or works...but it does!!! Gradually teaching the cleft lift scar to stretch and flex is going to help you immensely in the end.
     
  10. Razzyirt

    Razzyirt Very Helpful

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    6 month update....

    So, it has been quite the crazy past 6 months. There have been ups and downs, but it has been really great to read other's posts saying that my little "cleft lift log" has helped! (can we say warm fuzzies everyone! :) )

    As for my cleft lift...there are now days where I forget about the whole thing. I sit, slouched over in a chair or doing squats and lunges without even a twinge. I know I've mentioned it on other posts...but so far, the only activity that I have found that I can't do is sit ups. I don't know if that will come with time but it's not the biggest loss really if it doesn't. So far, everything else I have tried has been ok (although some of it took a bit of breaking in before it didn't hurt!)

    I am still diligently going to physio and the PT will still stretch out the scar tissue on occasion while working on all the rest of the still sorta messed up muscles and stuff. I do get aching sometimes (I swear I will now be able to predict when bad weather is coming *laughs*).

    So, all in all, 6 months out and no regrets. I know it was the right decision for me. I will still loudly (and sometimes super annoyingly) try to convince people to have a cleft lift rather than an open or closed excision....but it is truly because I believe it is the best decision, and I hate to hear about people suffering (I'm a bit of a softie!)

    As a side note, I have not yet had anymore drainage...although it can feel a little damp sometimes (I think it may be a bit of nerve-y stuff more than anything though...). If I do have anymore spectacular water bursts I will make sure to post about them!
     
  11. Zsteele11

    Zsteele11 New Member

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    Razzyirt thank you for posting your update and this helpful post. I had a cleft lift exactly two weeks ago and your story has been a great help and source of comfort. Especially regarding the drainage! It scared me to death when it first happened but I feel so much more relaxed about it now!

    It is so good to hear that you are pretty much back to normal, I look forward to that day myself!
     
  12. Razzyirt

    Razzyirt Very Helpful

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    Howdy! I agree with you about the drainage scaring you half to death....the first drainage I had was just after going to the bathroom...I actually still had the drain in, but it got a bit plugged, and there was almost a "popping" sensation when I stood up and the next thing I know there's bloody discharge all over the floor. Literally scared me half to death! I went racing (ok, so it was more of a careful walk, lol) out of the bathroom into our hotel room in full panic mode, to which my hubby said everything looked fine and I should really work on relaxing :) Husbands, what can you do without them!...as a side note, he's the one that deduced it was just a bit of a clog in the drain and got everything working again. I honestly couldn't have done any of this without him!

    I had quite a few more draining and other "spectacular" events after that. To be honest, the worry does start to fade over time but I will say I'm still a bit paranoid. I still worry that somehow, something can still go wrong (or heaven forbid, it comes back) and it's been 6 months since! So, it does get easier. I would say that by about week 3 post surgery, your life does start to slowly come back together (kind of painfully at first though) and it does only go up after that :) Good luck with your recovery!
     
  13. Zsteele11

    Zsteele11 New Member

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    Well I am a worrier at heart and hubby said it wasn't the pilonidal that would kill me but the former! I am actually in no pain at all, just can feel a slight stretching when I sit or do a rather strenuous movement. The discharge is also slowing down dramatically.

    I know it was six months ago but I do hope you will keep posting to let us know about life after a cleft lift!
     
  14. kittygirl

    kittygirl Very Helpful

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    three weeks since cleft surgery today here, it's good to read about someone else's experiences with this, makes me feel a lot better.....

    anyhoo, I'm at the twingey, still draining a little bit and itchy stage.....
     
  15. Kay C

    Kay C Helpful

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    Yay Razzy! I just popped in to say "hi!" I'm glad you're doing well & getting to the point where you can "forget about it" :)
     
  16. ROB6ERT

    ROB6ERT Very Helpful

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    I HAVE FOLLOWED YOUR STORY TOO ITS GOOD TO GET SUCH DETAILED ACCOUNTS THIS FAR OUT
     
  17. Razzyirt

    Razzyirt Very Helpful

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    One Whole Year Post Cleft Lift....

    So, it's hard to believe it's been a year. I've been on and off the forums, I've read a lot of stories...and heard a lot of heart ache. This disease takes it's toll on the best of us.

    I have good days, and I have bad days. I'm still in physiotherapy. Disclaimer: since I had my pilonidal disease start concurrently with my car accident, it can be hard to distinguish which is from the pilonidal and cleft lift and which is from the car accident.

    I know that physical appearance is a huge concern of a lot of posters on this forum. So, I will point out how mine has been altered. I know there have been posters on this site that have said their appearance wasn't altered much. Mine was. I have a close to 9" scar, and I have no butt crack left. It is literally flat. A very tiny, maybe a few millimeter dent, that's it. And this is pretty much right down to the anus. It's almost entirely flat.

    It looks no different under clothes, and I honestly don't notice often. Every once in awhile I'll catch sight of it coming out of the shower or something and it will be a bit of a start...but, I don't ever stare at my butt, so it really doesn't cross my mind. According to hubby, it's just as gorgeous as ever *laughs*

    I also still have a tight type of feeling on occasion, and I can feel pulling from the scar area. This can happen when doing something like a deep squat for example. I also haven't tried doing sit ups since, but I did come up with a compromise. I lie on the couch and do crunches and reverse sit ups. The cushioning helps.

    I also have nerve-y stuff going on. I get random zinging type sensations, what feels like warm, wet type feelings (it's never actually wet). I also get a lot of muscle cramping in the area. I find it too sensitive to touch the area, and if any pressure gets put on it, it hurts.

    I have had no issues with the scar opening, or any other drainage. I can sit on any surface, for pretty much any length of time (though it does get a bit achy sometimes).

    I still firmly believe that the cleft lift is the best option available. I never would have survived an open wound excision. I know that for a fact. And given how extensive my disease was...it was worth every penny to travel. Of course, I would have much preferred to never go through this in the first place!

    It's still one step at a time. And I want to give people a realistic review of what the cleft lift can be like. I also want to point out that there is a good chance you won't be healed up and back to work overnight. My surgery hurt, and recovery was slow. I also had it re-open, had drainage, and things weren't healed up for a good 3 months I would say.

    It should say a lot though, that even after all that, I still recommend it (compared to the open wound I was left with from my lancing, that never even healed....it was a cake walk! I still remember the packing and shudder!)

    So, one year out and things are still evolving. The scar tissue is still healing and shifting and doing it's thing. It'll be this way for a long time, as it typically takes a good 2 years for the tissue underneath to heal completely. So, I'm trying to be patient.

    Hopefully, I've helped at least one person out there...and I am happy to answer questions if people have them. Good luck everyone, and keep taking it one day at a time!
     
    Kay C found this helpful.
  18. Jaredsmom

    Jaredsmom Very Helpful

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    Hi, Razzy!! Been a year already? WOW....time flies. I'm sorry to hear that complete recovery is taking so long for you, but glad you are so upbeat and looking forward to living your life pilo free.

    Its good for others to read your blog as well as my story of Jared's experience with cleft lift. Because they are so different. It gives people a view of what to expect realistically....probably somewhere in between yours and Jared's. Jared's progression of pilonidal disease was mild because it was caught so early....within 6 months of his first cyst eruption. And the fact that he had no other surgeries prior to cleft lift also helped his post op recovery go so easily. And of course, no other injuries or illnesses.

    keep the updates coming, Razzy!!:hug:
     
  19. Razzyirt

    Razzyirt Very Helpful

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    lol, I read my post again this morning...and according to my hubby I'm over exaggerating my physical transformation a bit! (and I guess he's the one that would know the best :D)

    When I look at it, it's always from an angle (you know, trying to look over my shoulder to stare at my butt...) So, it looks a lot more shallow and flat to me. But, according to hubby it doesn't look a whole lot different, except for about 4" at the top is flat. I know that's more extensive than most though (as my pilonidal was HUGE!)

    I am not trying to scare anyone, or say that I've been deformed or anything, and I realize that my post may have come across a bit that way *laughs* Honestly, it really isn't all that different. The scar is still quite noticeable though, but I know that will go down with time. It's not nearly as red as it was though (and I do scar pretty aggressively, just my skin type I guess!)

    And I also think a lot of the muscle pain is due to the car accident, and not the pilonidal itself. I did have some damage to my spine (from my neck to my tailbone, in 3 areas)...so, at physio, one of the screwed up areas is right where the scar tissue is. And she digs into there pretty aggressively....so I think that's also part of my aversion to having the area touched! Just the fact that she can actually push and manipulate the area so much though, with no issues to the scar etc. should point out the value of the cleft lift though!

    It's been a bit tricky for me of course, as I can't honestly say what it would have been like to have the pilonidal separate from the car accident, as I'll never know. So, I would say it's definitely accurate to say that most will not be quite this aggressive! But, if I can reassure people, that even in the rough, one of the worst case scenarios, things recover this well....well, I hope that helps put some mind at ease!

    And, to all butt sufferers out there, keep on dancing :wigglebum: (ok, so I just love this emoticon too much....)
     
  20. girl123

    girl123 New Member

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    Boy are you right about that razzy! Doctors don't give a rip and our health care system is SO slow! You're doing awesome. believe me I am a wreck just making a decision. Tears the whole nine yards. If you don't mind me asking how long have you suffered with PA?
     

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