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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    T-minus 2 weeks and counting!

    So much has happened, everything has turned into a whirl wind. I have my cleft lift officially booked!!!! February 13 it is! And I'm nervous as heck...

    I don't think it will be a moment too soon though, as I just had the delightful joy of a silver nitrate treatment this morning for hypergranulation in my I&D wound. I also have several large pockets they can feel...that really hurt with any pressure. So...I'm trying to hold on here.

    I wanted to post this, not only to give another personal experience with the cleft lift...but to also offer information for anyone else who is looking at traveling for this procedure (potentially out of the country). So here it is...I chose the cleft lift as my ONLY option, due to all the horror stories that I have heard about everything else available. I just can't do it. I know going through an open excision would mentally kill me (let alone physically...I'd never heal the thing).

    So, the start of my experience (Canadian resident traveling to San Francisco, CA for the cleft lift):

    Travel Distance to Surgeon: ~1500km (and crossing the border of course!)
    Flight Time: Going down it will be about 6-7 hours with layovers, I forked out extra to have a direct flight on the way back (after the surgery), so it will be about 2.5-3 hours

    Costs so far (all out of pocket of course - American $):
    Surgeon: $5800
    Anesthesiologist: $1500 estimate
    Surgical Centre: $6500 estimate
    Hotel: $2200
    Flights: $1400

    I still have to arrange for some mode of transportation (not sure if we'll rent a car, or do cabs or whatever), I have the expenses for pet care while we're away (2 cats and a dog), food and all other miscellaneous expenses that keep popping out of the wood work. Hubby is also taking 2 weeks off from work, so you can factor in the lost wages and what not.

    I'm hoping this gives anyone who is considering paying for this an idea of what all is involved. There is also quite a bit of arranging, back and forth discussions with the surgeon and surgical centre, and a lot of pre-medical stuff you have to arrange.

    I have also arranged to have the wound centre here see me when I arrive back home, to keep an eye on the healing process.

    As a side note, my family doctor still thinks I'm crazy, and does not understand why I would do this. She has given me a lot of pressure to see the local surgeon about the open excision and "find out the rationale for why we do it this way in Canada". As far as I can see....I don't see what rationale there could possibly be!

    I will keep this thread as up to date as I can as things get more underway and I really hope this information helps someone else out!
     
  2. Jaredsmom

    Jaredsmom Very Helpful

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    Oh razzy, you made me laugh with your " I don't see what rationale there could be"!!! You are SO right and I want to say kudos to you for not just "going with the flow" and listening to your surgeon as if he/she is speaking directly from the Almighty .....

    Seriously, God gave US minds too and intellect enough to make up our minds about things and not just believe what others tell us. And certainly not to do something just because that's the way it's always been done....

    Life is never stagnant, it is ever changing ...as is the great field of medical science. BUT there are always those, surgeons and patients, who are afraid to move forward and try the new advances....

    As you know, Jared has his cleft lift five years ago....at that time, cleft lift was still in it's infancy...there were NO LONG TERM statistics or long term firsthand accounts to go by.....it was quite literally a shot in the dark for us.....

    Like you I had to travel, there were follow up visits, travel expenses, and many many hotel stays.....Pittsburgh became like a second home to us. We went through a lot of fear of the unknown....however, what kept us moving forward was the fear of what WAS known...excision. I saw the pics, I heard the stories.....and the fear of what was known was greater than the fear of the unknown.

    5 years have passed, cleft lift is gaining acceptance. More people are choosing it, hopefully prompting more surgeons to learn how to do it. And now there ARE people to speak of the LONG TERM cure that is cleft lift.

    Bravo to you for being one of the trailblazers!! The more who choose it, the more others will follow.....and soon pilonidals and it's twin evil ...excision..... will no longer have the power to destroy young people's lives the way the have done through the decades.
     
  3. Razzyirt

    Razzyirt Very Helpful

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    I hate silver nitrate....

    According to my husband the whole area is nasty red, inflamed and raw looking. The nurse said she was only going to put a "tiny bit on" but hubs says that the entire area has been burnt off....and I went from very little, clearish drainage to fairly heavy bleeding again....

    My poor ass is killing me......
     
  4. Razzyirt

    Razzyirt Very Helpful

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    We are at T-minus 6 days and counting....I am now counting the minutes to this cleft lift.

    My wound is giving me all sorts of issues. It is now full of hypergranulation tissue. I've had it treated with silver nitrate several times to no avail. And the poor thing hurts like heck! I am just hoping and praying that the wound will be ok until the surgery next week....

    I'm terrified about the cleft lift, and worried that it will really hurt and have a brutal recovery or something....but I'm at the point where I just can't live like this!

    Now, all the practical stuff for this cleft lift journey:

    - I've booked flights, a hotel and a car
    - I've confirmed the consult visit with the surgeon and the surgery itself
    - I have talked on the phone with the surgeon, anesthesiologist and surgical centre
    - I paid in advance for the anesthesiologist to get a pretty good discount
    - I negotiated with the surgical centre a final price for my surgical stay
    - Hubby has finalized his vacation and will have 2 weeks of to help me out (and baby me of course :))
    - I had the surgeon give me the prescriptions he uses in advance and had my family doctor prescribe them for me here, and filled them
    - I have added US minutes and data to my cell, in case of emergencies
    - I have passports and all necessary travel documentation
    - I have emergency medical insurance and travel insurance, in case anything should happen (outside the realm of the surgery itself)
    - My family doctor also wrote a formal letter of referral to Dr. Sternberg, so that she can get more information on the cleft lift and stay in touch for all follow up
    - I have arranged for a dog sitter to take care of my puppy for 2 weeks, and my parents are taking my 2 cats
    - My parents are going to keep an eye on our place while we're gone and also restock our fridge for our return
    - We're gonna give the place a good cleaning and freshen it all up, so it's all set up and ready for me when I return

    I am going to stay in San Francisco for just shy of two weeks. This way I will have all my initial follow up with the surgeon, and also get the drain removed before I return home. The last few weeks have been pretty stressful, full of phone calls, appointments and a lot of planning and arranging. I'm sure I'm stressing out more than I have to....but I really am scared and stressed out about this. I wish it was over with already...
     
  5. Robert Eden

    Robert Eden Very Helpful

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    Good luck!

    I bet you'll feel great after a few days and go out to explore San Francisco!

    Robert
     
  6. Razzyirt

    Razzyirt Very Helpful

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    Thanks Robert! I sure hope so!

    I had my consult with the surgeon this morning after a completely uneventful trip into San Fran (other than thr fact that my butt was killing me by the end of the flight....) He confirmed that I have a severe case of pilonidal disease. Not only do I have the unhealing wound from the I&D, I also have numerous pits all down my cleft (who knew?) and I guess I also have some sort if "dimple" in my behind (I guess my cleft is actually miss-shaped which means you're more likely to develope PA).

    He then explained how he would reshape my cleft to make the entire thing more shallow and also get rid of the miss-shaped part. All of this would be done with IV sedation and a spinal block as an outpatient day procedure. I would have a 5 inch incision and the drain would be a passive drain (like a rubber band). I have a follow up appointment the day after the surgery to make sure everything is ok, and then another follow up for drain removal ~8 days post op and a check up, then I leave for home the next day.

    So....where does this leave me in all of this? The surgery is tomorrow and I am scared shitless (sorry for the language!). I'm so scared right now that I want to pack up and go home. Logically, I know I have to have this surgery. He found 4 abscesses alone today all tunneled together just by looking...and he figures there are more...

    But I'm terrified (to an unhealthy degree....) of all things medical and I just don't know how I'm going to get through this. I really wish I didn't have to do this.....
     
  7. Robert Eden

    Robert Eden Very Helpful

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    I still bet things go great and you'll laugh at your concern... I know I did. How did this doc compare to others you spoke to in Canada?

    Looking forward to tomorrow's report (if you feel up to it.... and you will!)

    Robert
     
  8. LILLY

    LILLY Very Helpful

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    I think being nervous is completely normal. Try to relax. I am pretty easy going but I did get nervous the day of my son's surgery. I remember when Dr. Rosengart was talking to us just before the surgery I felt the room begin to spin. I'm so glad I followed through. It sounds like you have an extreme case and you can be assured that this is the best course. An excision on you would be horrendous with all the issues you have said need to be addressed. You are doing the right thing.

    Good luck tomorrow -will keep you in my thoughts!
     
  9. Durango

    Durango Very Helpful

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    Try not to be scared. I know it's easier said then done and I was scared before all three of my surgeries. I had exactly the same experience with my cleft lift as you described; spinal block, 5 inch incision and a passive drain. I felt nothing and after I woke up I had to wait about 30 minutes to feel my legs again (that was a really weird felling). Once I could feel my legs I got up and got dressed on my own and walked out of the hospital with no pain not even on the car ride home. Good luck and try to relax
     
  10. Jaredsmom

    Jaredsmom Very Helpful

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    I was scared shitless also. I believe it's normal ..... I cried like a baby the day of my son's surgery. I was so sure he was going to die or something. Irrational fears...but try to tell that to someone when they are in the moment.... Dr. Rosengart was so surprised when he came to the waiting room to tell us the surgery was over and I was hyperventilating and had tears streaming down my face. He said , quite simply, there was no reason for me to have been so worried. In his words: "it's not THAT kind of surgery". :) Tomorrow when you wake up from the surgery, you begin the road back.....back to a NORMAL life!!! Hallelujah!!!
     
  11. Nutshell

    Nutshell New Member

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    Yaaaaaay! It's been a while since I've checked the forum but I am so happy and excited for you Razzy! I hope your surgery goes wonderful today and I'm sure you will be forever happy that you made arrangements for a cleft lift. ^_^
     
  12. leist22

    leist22 New Member

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    Just know that a lot of us have been through the same sort of experience and we all came out healed and happy. Keep us updated during your recovery! We are with you!!
     
  13. Razzyirt

    Razzyirt Very Helpful

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    Thanks for all the well wishes! I actually read them all before going into surgery, which was very helpful.

    So a quick sum up of today....Robert, you were right! So far, I'm doing pretty good! The surgeon was really behind and I ended going in over 2 hours later than I was told. Which was fun, but it did give me quite the chance to get nervous. The surgery centre was just amazing though....and so different than in Canada. I got to lie in a recliner with a heated blanket. And they gave me fuzzy socks to keep my feet warm.

    The nurse was great and I didn't even feel the IV. I talked with Dr. Sternberg prior to going in and he reassured me everything would go well and asked if I had any questions. Then the anesthesiologist came and this is where things changed a little...he went over my medical history and actually talked me out of the spinal! (Which was I sooooo nervous about). He talked me into having a general, ironically, because due to my history it was actually the safest bet.

    They also loaded me up with anti-nausea meds and I have a patch thingie behind my ear to wear for 3 days. And I have ondansetron for 4 days after surgery. The reason for all this, is I suffer from severe nausea daily and can throw up at the drop of a hat (I have a disease which means I am completely unable to swallow). So, I was worried about being sick after a general.

    So, I walked into the OR and the next things remember is waking up. I woke up lying on my back with very little pain. They gave me 2 shots of pain meds while there, and then an intramuscular injection for nausea (ironically, I think that was the most painful part of the day!). Dr. Sternberg visited twice during my recovery. I went back to the hotel about 3 hours after the surgery ended.

    As soon as I got back I took a Percocet and the ondansetron for nausea. I'm really glad I had so much nausea meds, what with the drive home and all. I also managed to sit with very little pain on the drive home.

    Right now, I am in a bit of pain. And I will take Motrin soon. I am on Motrin three times a day and Percocet prn. I'm very tired, and gonna go back to bed. But I'm holding my own so far,

    As a side note, there is a good amount of drainage so far...and I am to place gauze over the drain area to collect it. I made the mistake if going to the bathroom without taking the gauze out....long story short, I pugged the toilet, lol! But James it to take gauze and roll it up and use it like a rolling pin across the flap to push the fluid out, three times away.

    That's my story so far. I will post some more when I'm a bit more coherent. I'm still exhausted and really foggy. Thanks again for the well wishes! And I will keep everyone posted!

    Things that scare me about the upcoming days....is the pain going to increase a ton? How is the fluid rolling going to go, will there be lots of blood and will it hurt? And of course, the first time I go to the "bathroom" as I'm sure you get my drift....

    Tomorrow is my first post office visit!
     
  14. Robert Eden

    Robert Eden Very Helpful

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    Whoop!

    Remember, if the fluid wasn't draining it would build up pressure, and we all know how much that hurts!

    I think you'll find compared to what you were dealing with, the rolling and other pain will be trivial!

    Welcome to the cleft lift club!

    Robert
     
  15. leist22

    leist22 New Member

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    Razzy,

    Glad to hear everything went okay. Remember you are recovering from a surgery so don't try to do too much right away. After my surgery, I took walks around my hotel and to nearby cafes for the first week after surgery. In my case, I developed a minor skin infection around the drain site. I caught this because I noticed the discharge blood increased and became soupy, or watered down like. Be sure to report any changes in discharge to your doctor, as well as any unpleasant feeling such as dizziness or fever since these could be signs of infection. Most likely you are on an antibiotic now which will fight infection. In my case, the surgeon had to reopen the area where my drain tube was and install a rubber band drain which was left in for a few weeks. I ended up taking that out by myself after I had flown 2000 miles home. As far as going #2, my surgeon told me it wouldn't be painful at all...........but it hurt like hell. The reason for this, I believe, was that my pilonidal case was so low on the cleft and the dissolvable stitches he put in tugged on my skin as it expanded when I was going to the bathroom, causing the stinging pain. It was like I was being pinched very hard by a woman with long fingernails, but it wasn't a deep pain, it was only on the very outside of my skin, so I figured it wasn't a problem, and it wasn't. This pain was gone by the 4th or 5th #2. Glad you are doing well!

    Also, have fun at the post office tomorrow! :)
     
  16. Jaredsmom

    Jaredsmom Very Helpful

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    Hooray, Razzy!!!:cheer:

    Thank you so much for updating us. I know you probably aren't feeling your best right now, what with the anesthesia and all you've been through, and I appreciate the effort you took in coming online and updating us.

    I can't speak for everyone, but Jared was given a long lasting anesthetic injection during surgery, which lasts about three days. When that wore off.....he didn't even seem to notice. Sure, he had some pain, but it was manageable with over the counter pain meds....everyone differs, of course.....but you shouldn't be in horrible pain when the injection you were likely given wears off. Sure...there is some pain....and will be for some time.....but compared to excisions and the pain of flare ups, it's a piece of cake.

    Also, be aware that when the nerves start to regrow at some point, you WILL likely notice.:eek: Ok, it's not that bad. There may be a sudden onset weeks down the road of NEW pain. Not to worry....unless there is heat, redness or drainage at the site and/or a fever......because once the nerve tissue regenerates, they start doing their job which is to send pain signals to the brain. The pain shouldn't be constant, but intermittent....Jared had burning sensations and sharp stings off and on for 2 to 3 months....then they gradually faded away. Just wanted to warn you so you don't get worried if/when that happens. In your past life as a pilonidal sufferer, new pain was usually a sign of impending doom, but it isn't always so. After any pilo surgery, there is a period of new stings/stabs/burns that just signal regrowing nerve tissue.

    If you have a coccyx cushion, PLEASE use it. If you don't, PLEASE invest in one. They are a Godsend and can have you sitting normally within no time!!!!

    Happy healing, and keep those updates coming!!
     
  17. Razzyirt

    Razzyirt Very Helpful

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    Lol, I will enjoy the post office!

    But yes, I have my first post surgery office visit this afternoon I'm a bit nervous about it. The pain has definitely increased today. I took the Motrin and a Percocet this morning and I'm doing a bit better. I even had a decent breakfast.

    I did have a few things happen over night...it leaked through the gauze, my pjs, and the sheets in bed. Embarrassing when you're in a hotel....I'll have to clean it up somehow. But I'm able to get myself out of bed on my own and walk around a little.

    I am hoping it won't leak too much more through everything! And I do have a Cush cushion which I will have to try out in the car on the way to the surgeons. I also get to take my first shower since. Still nervous....but holding on...

    Thank you all for the great support. I'll keep updating as I go.
     
  18. Robert Eden

    Robert Eden Very Helpful

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    Put a maxipad in your underwear. Worked great for me when I was "leaking". Since you have a passive drain, you're going to have a lot more "loose" drainage than I had. A baby diaper should also work.. did you bring one with you? :)
     
  19. Razzyirt

    Razzyirt Very Helpful

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    Lol, I didn't bring a lot with me....of course! I was thinking so much about the surgery itself that I didn't think as much about the after part, lol.

    I did bring along some "super pads" they're called. It is the dressing I used for my I&D, which is working a lot better than the gauze so far. I just wish I had brought more....hopefully there will be enough for this trip. I guess I was just thinking they would have given you the stuff you needed afterwards....I might have to go find a pharmacy supply place and pick up some more stuff.

    How long should it drain like this do you think? I get the drain out not this Friday but next Friday. Guess I'll be working with the mess. I was gonna ask the surgeon today for a bunch more gauze. He just wants me to put it in loose, which can be annoying as it moves and then the drain comes uncovered and away it goes!

    But the pain is manageable and it's more just messy than anything. I'm just taking it easy and can't wait till the surgeons visit it over and I'll sleep some more. :)
     
  20. Robert Eden

    Robert Eden Very Helpful

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    I had an active drain for about 4-5 days, that drew the liquid into a bulb which I emptied. It never really caught most of the stuff and I was still leaking. I continued to leak off and on for a few months (an infection probably lengthened it). Switching to some old diapers and then maxi-pads worked much better than gauze (it's designed to hold liquids!). It's probably much cheaper than the surgical pads too. You shouldn't need a sterile surgical pad. I found the pad unattached to my butt hurt less too. (no tape pulling skin)
     

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