Razzyirt's Cleft Lift - An International Experience

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

  1. Kay C

    Kay C Helpful

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    *hugs* Glad to see you're home! You quite certainly have had some ups and downs! But hopefully you'll have lots of ups from this point on :)Your "saga days" are useful! I think it'd be terribly inaccurate to document your recovery as "perfectly fine" and lack of detail wouldn't be very helpful to others.

    I can't really relate since i'm sans cleft lift at the moment, but I wonder if those pains/stinging along your incision are a product of nerves regrowing? I could be wrong but, as Jaredsmom said you might experience some numbness -- so maybe that's your body's version of the same thing.
     
  2. Razzyirt

    Razzyirt Very Helpful

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    Hi Kay, thanks for the thoughts!

    Day 16 Post Op...

    I sent a follow up to Dr. Sternberg regarding the drainage, and I am to continue doing what I'm doing (except I can stop the rolling again, yay!). I also asked him about the stinging pains and he said those are normal and go away over time.

    I must say, I actually have a significant amount of numbness. The entire area feels like a foreign object. I don't even know how to describe how weird it feels. It still doesn't feel like it's my bum attached to me! I do get a lot of random zinging pains, which I am sure are nerves doing their thing.

    I had a few monumental moments today:

    1) I sat, cross legged, on the couch. No cushion. First time in many months! I only lasted about 5 minutes...but it was amazing. And felt so normal.

    2) I went for an hour long walk, with hills, walking my pooch. Again, haven't done this in many months...and I walked pretty much at a normal pace. And this is one of the first times I've actually walked my dog (he's 100+lbs) and was ok with him pulling me around a bit.

    3) I sat in the car (with cushion this time) and went on a 15 minute car trip with no pain. It almost felt comfortable.

    So, slowly but surely we're getting there! I should point out that I returned to taking 2 regular strength Motrin, 3 times a day. I figure I may as well avoid the discomfort to begin with. And with this level of pain control, I really don't get a lot of pain throughout my activities.
     
  3. Razzyirt

    Razzyirt Very Helpful

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    Day 17 Post Op...

    Today was a great day! I went for 2 long walks, on rough terrain, with hills and everything. Man, am I ever out of shape! Close to 4 months of doing nothing will do that to you...

    I also went and ran some errands and then I turned into the cleaning demon. I was washing cupboards and walls, steam cleaned the couch, you name it! Moral of the story is, I was bending, getting down on the ground and standing back up, moving around...all without even really thinking about it. I still "squat" down by more bending my knees forward, rather than squatting fully, but hey, don't have to be too picky :p

    One caveat to all of this, I still can't drive. I know that many have returned to driving without any problems, usually not too long after the cleft lift, but I am not one of them. The bumping motion of the car, as well as the need to constantly shift your weight back and forth causes me quite a bit of discomfort still. I have to brace myself to take the weight off my tailbone after about 15 minutes. All of this adds up to me not being a good candidate for driving just yet. It has improved though, as I can now sit in the car fairly comfortably and get in and out of it without much pain (both of these things were huge challenges only a week ago).

    My drain wound is also pretty much unchanged. I think all the drainage I've had has slowed the healing down. It's not a large wound though, as I said before. I'm hoping that once the drainage slows down and stops that it will heal up without any issues. Although, I still don't know where all the fluid is going to go after this. How long did other people have it drain for?

    Other practicalities, all I have had to do to keep everything clean is take a shower as normal. Right now I am using antibacterial soap, just until everything is closed. After I've showered I then lie on my stomach for awhile until everything has air dried, and this way the wound gets plenty of air. Then I put in a thick pad of loose gauze over the drain wound to catch the fluid.

    The pains have been fairly minimal but I am still taking 2 regular Motrin, three times a day. Each day really is getting better and better, and I'm trying different things. It is still not normal by any means, but it is coming back bit by bit. If anyone has any questions, let me know, I'm happy to help if I can!
     
  4. Razzyirt

    Razzyirt Very Helpful

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    Day 18 Post Op...

    We got over a foot of snow today! So I have been busy! I am not back to normal by any means yet...but I did help hubby a bit with shoveling the driveway and sidewalk (nothing too crazy!). I did find that I started to get a bit sore after awhile, so I stopped. But at least I made myself useful! I also went on a walk with my puppy and waded through knee high snow, which was quite the butt workout! I can feel my bum muscles getting tired pretty quick, but it still amazes me that I'm doing these sorts of activities.

    I have had the weird stinging pains along the incision again today (they were pretty much absent yesterday). The draining from the drain wound has also completely stopped again. A part of me wonders if the increase in pain is actually from fluid not getting out? I guess I'll see in another few days if I have yet another extravaganza of fluid bursting out...

    I actually find that the pain itself decreases the more active I get (who knew?). If I get up and move around and stretch everything out I feel much better. Still not able to really sit yet. I am practicing sitting on my couch (sans cushion) for periods of 5-10 minutes, but it is still painful. I can sit with my tush cushion for hours though.

    Tomorrow will be my first day of work in months. A bit nervous! I am slotted to work a full day, no breaks or modifications. So, we'll see how this goes!
     
  5. Razzyirt

    Razzyirt Very Helpful

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    Day 19 Post Op....

    Exhausted. Really sore. Going to bed.
     
  6. Razzyirt

    Razzyirt Very Helpful

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    Day 20 Post Op....

    The days are rough since returning to work, I'm not going to lie. By the end of the day I'm so uncomfortable that I can't wait to go home. And today I had a day of sitting, for some training, and it was excruciating. I got up as much as I could...but by the time I got home all I could do was take more Motrin and lie on my stomach.

    I'm trying to remain positive. And I'm really trying to take it day by day. I need this job...and we really need the money. I've been without any income for months (no job, combined with the insurance company still refusing to pay any short term disability...one broke me!) This whole disease has been life shattering. I'm working at picking up the pieces....but it will be many long months. One thing that makes me really sad is we had a down payment saved up to buy our dream home this spring ...and now there is nothing left (the time off and all the surgical expenses). We worked so hard for that....

    But, on a more positive note, I applied to the province to try to get reimbursed for some of the medical expenses. I'm arguing that they should cover it as no surgeon in Canada does the cleft lift and it is a far superior procedure. That, and with my medical history, I have proven I'm a horrendous healer so odds were good I would not have recovered from the open excision. I just found out my application has met all the requirements for consideration and will now go in front of the board for deliberation next month. Keep your fingers crossed!

    More practical stuff....the drainage has slowed up again. I did have one incident where I had a small hole open up at the bottom of the incision and a bunch of drainage came out. Then it stopped, as quickly as it started and I've had nothing from there since.

    I tape a clean piece of gauze over the drain wound in the morning before I go to work, and then I put a panty liner in my underwear. So far, this has been more than enough to catch the little bit of drainage I've had. I'm waiting to see if I'll have another big drainage moment after it had practically stopped again...

    I am still using my tush cushion at work and in the car. And I do no sitting, at all, in the evenings. Basically....I really, really hurt right now....I am really hoping this gets easier soon. Although I remember how much I hurt even a week ago, and this is better (that and I am putting in 10 hour days, with lots of sitting and activity). Onwards and upwards....
     
  7. UnluckyOne

    UnluckyOne Very Helpful

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    I'm glad that aside from a few minor mishaps, everything has worked out fine! I trooped it out and was back to work 3 days post-op (not happily, though). Luckily it didn't include much uncomfortable sitting and I was able to pace myself back into things. Not everyone is the same, but I also want to tell you that A LOT of this is about mind over matter. You need to put all the past, all the troubles, all the problems you've endured, everything this disease has done to you and your life, behind you! Don't keep saying "I hope things get easier... I hope things get better..." because it's more than just a waiting and hoping game. You need to strengthen your mind and your will to get through this.
    I had my lift over the summer so although I returned to work very fast with long hours and 5-6 days a week, it's totally different than if you're sitting for long periods. I will not deny that even now, after 9 months, I still get uncomfortable when sitting for a while. At church, during class, etc. Last night, I was sitting on a hardwood floor during bible study and worship (for 2 hours) and the discomfort just built up until I was so relieved that I could stand up that I could probably cry.
    It's something you have to tough out. The area, after what it's been through, will never be back to 100% comfort or feeling.
    I still have numbness like you talked about and you probably will too.. but that part does get much better! I used to believe if someone touched my butt anywhere near the scar, I wouldn't even know it. Now, I definitely could, but it just feels a lot more faint. It's harder for my mind to recognize exactly where my body is experiencing sensation from. Not bad at all, though.
    The tinges of pain go away. I thought they never would because mine lasted a few months (and yes, they are the nerve endings re-attaching after being severed during surgery) but they've completely gone away for me by now. I haven't had any of those in a few months.

    Anyway, please don't misconstrue what I'm saying. I am, not at all, trying to say that you're being too sensitive or hysterical, because you're not.. You've gone through a lot and I can understand because I was right where you are, but I promise you it gets better. You need to trust and believe that rather than hoping and crossing your fingers with hesitance. You will lose sight of the remainder of the tunnel ahead of you and want to stop walking.. but if you stop walking, you'll never see the light at the end of it.

    Good luck, Razzy. I really hope you can get a handle on everything that's going on and you can get yourself fully healed and happy again in no time :)
     
  8. Razzyirt

    Razzyirt Very Helpful

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    Day 21 Post Op...

    Unluckyone, thank you for the post! And I don't mean to give anyone the impression that I'm depressed...far from it actually. I'm totally amazed by how well the recovery has been going. What I want to do is post my day to day ups and downs (probably for about a month or so, and then periodically as things change) feelings, thoughts, triumphs, struggles, complications, practical things etc. to give someone an idea of what recovery from cleft lift can be like. I'm trying to not sugar coat it. It's surgery. I had a 7 inch incision. I hurt, very badly. And I struggled. But I've also made incredible gains. Some days I focus more on the gains, sometimes more on the failures. But, to me, that's life. It isn't all rosy, but it ain't all that bad either! :)

    On that note, the 3 week mark was another one of the good days! It's almost like my body finally re-adjusted to going back to work. I wasn't as tired today, and the pain was a lot more manageable. I was also on my feet and moving more today, which helped. It's the sitting that still isn't as comfortable, if I have to do it for extended time frames. I'm also thinking that I will be up to driving again within the next few days (I'm looking forward to being a free adult again :p) (Also, keep in mind, for those who don't know...I have multiple, chronic, life long medical conditions (despite being young!) so this isn't just about pilonidal. The pilonidal complicates things...so a major issue with driving is not just pain management (I have pain from many conditions, so when they all add up it can be a lot) but also fatigue). Many of you out there dealing with pilonidal will only being dealing with pilonidal (which is plenty!), so you won't have these additional complications.

    I have had zero drainage today. And, as I pointed out above, I am doing a full days work. Soon I will add driving all over the city to my days. I think things are going pretty well! I have had a few more of the stinging pains, and some really weird sensations. It feels like the whole area is wet, and waves of moist, warmth and then I think "oh no, I must have burst again!" and go check, and I'm completely dry. I finally figured out it's weird nerve sensations (reminds me of some of the stuff I've had post car accident). But it was quite funny feeling at first, and of course I worried that I would be soaking through my pants any minute!

    As a side note, I ran into a small issue that I didn't even think of. I have several pairs of dress pants for work that are the same style, just different colors and embellishments, but they all have this tighter band at the top of the pant. I never even thought about it, until this morning when I went to put a pair on, and the band sits right on the top portion of the cleft lift area. For some reason, this is the most tender point for me, and this band just drove me crazy when I tried to bend over (somehow it put pressure, just in the right spot, to give me a zing of pain). So, I ended up having to over halve my wardrobe for now :) So, for others out there, it really does help to take into account the comfort of your clothes, as this can make a big difference in your comfort level throughout the day.

    I have sent my first set of pics to the surgeon for follow up, and am waiting to hear back on how things are going. As far as hubby and I can tell though, everything looks great!
     
  9. Razzyirt

    Razzyirt Very Helpful

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    Day 22 Post Op...

    Th stinging pains are back with avengence today for some reason. But I had quite the milestone again today! I sat in a chair with NO cushion! And I sat for like 2 hours with only minor discomfort. This is totally awesome for me, as I'm looking forward to not having to walk around with the cushion forever :p

    As I was saying though, it's hurting more today. I'm wondering if there is once again a bit of a fluid build up and I'm going to have another mini "pop" sometime. It's so hard to tell. I'm not sure if I'm one of the "lucky" ones, or if others have pain this long....but I will say, 3 weeks out and it's still noticeably painful.

    I wouldn't trade it for my I&D wound though! This is still a huge improvement. And I'm doing wayyyy more than I was able to do a few weeks ago.

    I still have the drain wound (mine didn't heal up in the estimated 10 days...). But it is healing....slowly. And it all looks good still. We'll see if anymore pops happen....
     
  10. Ouch89

    Ouch89 New Member

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    Razzy, I haven't read all of your experience (only some) but I wish you a speedy and PERMANENT recovery!
     
  11. Razzyirt

    Razzyirt Very Helpful

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    Day 23 Post Op...

    Thank you Ouch! I concur, I wish everyone on this forum and speedy and permanent recovery!

    I've had a lot of time to ponder pilonidal and the options out there (as I am sure most of you have done) and I just want to point out that the cleft lift is not some "miracle". I do believe it is the best option (when the conservative methods fail, or like me, you end up skipping all the beginner stuff and go straight to the worst case scenario). But I don't want to mislead anyone and make it sound easy. I know others have posted about their speedy recoveries....but, I don't want everyone to think that you can return to your normal life in just a few days, or that everything is magically normal right after the procedure.

    I've had a lot of pain, and I've had bumps in the road. I also have a 7 inch scar. It hasn't been the easiest road...but, I whole heartedly say that I firmly believe it the best surgical option out there. And, for those of you who are lucky (and yes, it can happen) and you recovery very quickly after cleft lift, that's awesome! I just want to give some words of encouragement to those who are a bit slower (like me) and struggle with recovering from the surgery....it is worth it, you will get your life back, you just need to give it some patience and time (as hard as that is!)

    Now...I am still taking some painkillers to manage my pain. I have tried going without, and it becomes too painful (ie: I can't sleep or I stop moving as much). I'd rather take a bit to manage the pain, so that I keep moving and doing things, and get a good night's rest. We're not talking anything crazy though, I take 1 regular strength Motrin every 4 hours now. I started that today (down from 2 Motrin at a time). And so far, it's doing the trick. I still have pain, but it's manageable.

    Activities I can do (with mild-moderate, but manageable, pain): walk on any terrain for several hours, sit in certain chairs for about an hour, bend over, pick up things, do all my daily activities to take care of myself, work, clean up, walk my puppy (even with some pulling now :)), go up and down stairs etc.

    Activities I'm working towards, but haven't tried yet: Driving, going a whole day at work with no tush cushion

    Activities I can't do as of yet: biking, running, squats (as in exercise type) or any other motion where there is a high amount of pressure or stress on my tailbone area

    All in all, I'm ecstatic with my progress. Prior to my cleft lift, I had no life. Literally. I was bed ridden and taking percocet to manage my pain (I guess that's what happens when you have a fist sized abscess sitting on your tailbone...). Now, I'm a little over 3 weeks out...and I'd say I'm functioning at 80% of my life. I thought it would be months of recovery....not weeks.
     
  12. Razzyirt

    Razzyirt Very Helpful

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    Day 24 Post Op....

    The morning and the evening are the worst for pain. The morning cuz I'm stiff after sleeping (my guess) and the evening after all the moving around all day.

    I have had no drainage since last Monday. The drain wound has finally formed a pretty good scab over it and looks like it'll heal completely in no time. No "pops" as of yet. I haven't had any gauze over everything for the past 2 days, as I'm close to home for the weekend, so if it leaks I'll deal with it then.

    So far, so good!
     
  13. Razzyirt

    Razzyirt Very Helpful

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    Day 25 Post Op...

    I sat in the passenger seat of the car today, with no cushion. It was only a 15 minute drive or so, and I was sore as heck by the time we got home, but still a big improvement! No open areas are left, everything has scabbed over. No drainage. Everything looks really good! I can still get really sore, depending what I'm doing...but each day is better and better!
     
  14. Kay C

    Kay C Helpful

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    Congrats on your accomplishments & progress Razzy!
     
  15. Razzyirt

    Razzyirt Very Helpful

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    Thanks Kay! How goes the riding and getting back into the swing of life for you??

    Day 26 Post Op...

    I had a phone follow up with Dr. Sternberg today (I sent in pictures earlier). He says that everything looks and sounds great and I'm on the right track. He thinks that I'm pretty much in the clear now. I sure hope so, as I'm sooo happy with my progress and I never want to go back to where I was!

    Still have pain, but I can now go pretty good lengths of time with no Motrin (I've actually only taken one all day today). And I'm walking around work like a pro now :) I can also go to the shorter meetings without my seat cushion and be ok (which is sooo nice, cuz I am getting a bit tired of carrying it around).

    I'm still not ready to go hop on a bike or hop around like a maniac or anything, but I can tackle soft surfaces in a single bound :p
     
  16. Kay C

    Kay C Helpful

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    It's going pretty well! I've been stretching every day & started doing some jillian michaels workouts (with lunges!) & everything is holding. My wound is still there, but mom says it is filling in slowly but surely (actually relative to this whole experience it's filling in quickly :p) . I don't remember if I had posted this, but I had some pulling/discomfort higher up in my cleft and I've found that stretching has helped kept that at bay. That's really the only thing i'm concerned with at this point-- The wound itself doesn't bother me at all.

    It's funny because even though I'm cleared to ride/exercise I'm still sooooo cautious. After a year of babying your pilo it's really tough to go all out! But each time I ride I do more rigorous work & hopefully I'll be back to my full potential in a few weeks! I have my 1st riding lesson on thursday :)
     
  17. Razzyirt

    Razzyirt Very Helpful

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    That's great news Kay! I'm happy to hear it!

    Day 27 Post Op...

    Aother day of firsts....I sat in a hard chair, with no cushion, for 20 minutes! I was really uncomfortable, but there wasn't a lot of pain. More discomfort. I am also buzzing around work like I didn't have surgery just shy of 4 weeks ago :)

    I can't wait for more time to go by and for it all to begin to be a distant memory. I'm starting to see it....
     
  18. Razzyirt

    Razzyirt Very Helpful

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    Day 28 Post Op...

    The official 4 week post surgery mark ended with a bang. Literally.

    I was walking down the stairs with my arms full of stuff...when I took a misstep, slipped and fell smack on my behind. I saw stars. The pain was incredible. I don't think it even hurt that much post surgery.

    So, after I danced around, said some choice words, bit my lip etc...it calmed down a bit. I did take some Motrin though. It is now just super achy, and if I move too much the pain can be a bit nasty. But I went for a long walk after supper (I didn't want to stiffen up) and it was just a bit tender. So, I'll rest it a bit now and let it recover from my thumping :)

    I will say one thing though, no issues with the incision at all. After it got banged around pretty good, no splitting or open areas. Everything looks perfectly normal. The pain I had was more deeper feeling, from the sudden jerking. I'm still nervous that I somehow hurt something, but it really does look good. It just hurt. I'm keeping my fingers crossed that it will be better by tomorrow or the next day once again.

    Prior to this, everything was going superb. I was even starting to bounce around at work and there were many times throughout the day were my butt didn't even cross my mind (it didn't feel like anything, so I completely forgot about it).

    Moral of the story....don't fall down some stairs 4 weeks post op and you shouldn't have this issue :p
     
  19. ROB6ERT

    ROB6ERT Very Helpful

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    I KNOW THIS MIGHT SOUND CRAZY BUT I PUT AMBASOL ON MY SCAR WHEN IT HURTS AND IT WORKS GREAT AT NUMBING THE AREA. I BOUGHT SOME BECAUSE I HAD SOME SORE GUMS BUT ONE NIGHT MY SCAR(OPEN HEALING SURGERY) WAS BOTHERING ME ALOT SO I FIGURED IF YOU CAN PUT IT IN YOUR MOUTH WHY NOT YOUR ASS, I TESTED A SMALL AREA FIRST TO MAKE SURE IT WOULD NOT BURN OR BOTHER MY SKIN AND HAD NO PROBLEMS AT ALL. I HAVE USED IT SEVERAL TIMES IN THE PAST COUPLE OF MONTHS AND IT HAS WORKED GOOD FOR ME. IT TAKES A FEW MINUTES TO WORK BUT ONCE IT IS ABSORBED IT NUMBS WHERE EVER YOU PUT IT FOR ABOUT 3 OR 4 HOURS. THANKS FOR ALL OF YOUR POSTS
     
  20. Razzyirt

    Razzyirt Very Helpful

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    Thanks, I wouldn't have thought of that!

    So, I have reached one month post cleft lift. What a journey! I wouldn't even know where to begin to sum the whole thing up.

    Long story short, the cleft lift is worth it. And it was worth every penny I spent on it. Am I completely healed? No. Am I pain free? No. But I have my life back. It is going to take time for everything to settle down, to stretch the scar out and to get back to where I was before all of this happened. But, in the mean time I am working again, walking my dog, going out with friends. Doing all of the things I had given up.

    For those of you struggling with unhealing wounds, recurrent disease, or even if this is your first bout with pilonidal, I strongly encourage you to talk to an expert. Talk to a surgeon who knows about the cleft lift and can give you the most up to date, and minimally invasive or disruptive procedures out there. Don't blindly trust what a surgeon tells you just because they're a doctor. YOU are the one that has to live with this disease.

    I am going to end my daily posting for now. As I am back to work, once again in physiotherapy to work on the damage from the car accident, and my wounds from the cleft lift are almost completely gone (the drain wound will heal up shortly, it's gotten quite small) I've had no drainage for a week and a half now and I even managed to fall right smack on my bottom and nothing happened with the incision! I did get a bruise though :p. Dr. Sternberg did say that he gives me permission to stop falling on my butt at anytime, lol!

    Please, if you have any questions, I am happy to help. Just post them here, or message me. And I will still hang around the boards and answer whatever posts I can. I will also be back to update this thread periodically when/if things come up. I wish everyone a speedy, complication free recovery and a life pilonidal free!
     

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