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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    Thanks for all the replies! I saw Dr. Sternberg for my day after follow up and says everything looks great!

    Sitting in the car wasn't even that bad. Sore and some stinging pains...but I did it. I used my tush cushion, but the doc advised me to stop using it as I don't need it anymore. I'm a bit nervous about that...as its sort of a safety blanket now. I'll work on slowly fading it out. He also said I can start pushing it a bit more. So we'll work on that as well.

    He showed hubby how to use the gauze as a rolling pin to get the fluid out and how to rotate the rubber band drain. That hurt and wasn't so pleasant but I guess it's a necessary evil.

    I am still in a good amount of pain. I am taking 400mg of Motrin three times a day and 1 Percocet about every 5-6 hours and that makes it ok. I am hoping I'll off everything in a few days. It really feels weird down there. And I still haven't gotten the courage up to really look at it. That's who I am though...I don't want to look or touch until I know it's all ok. I did take a shower today and cleaned it all up, which was nice. And it's super nice to not have the wound there anymore.

    Btw...Dr. Sternberg told me that he removed a huge abscess, even he was surprised at how much was in there. Something like 5 inches was the one, then all the tunnels and other pockets. Wow....
     
  2. Jaredsmom

    Jaredsmom Very Helpful

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    Razzy,

    I've been following your posts with rapt attention and I am very happy to hear you are doing well!!!

    Was curious about something though: what is a rubber band drain? I mean, how does it work? From what I read on another thread you replied to you said something about rolling the fluid out.... I am kind of confused. How does that work?

    Jared's drain was different.....it looked like a clear rubber hand grenade type thingy attached to a long, thin tube. We didn't need to do anything to it except empty it when the bulb/hand grenade part got full. Certainly it wasn't painful....well, until the doc removed it. Jared said the removal hurt a bit, but it was a quick over and done with sort of pain.
     
  3. Robert Eden

    Robert Eden Very Helpful

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    Jaredsmon, I was curious about this too so I did some searching yesterday.

    What we both had is called an "active" drain. The squeezed bulb (hand grenade) produces slight suction and acts as a receptacle for the fluid. I don't know how it worked for you, but my bulb didn't really get that much stuff in it, I also leaked quite a bit.

    The passive drain is a piece of something (rubber?) that goes through the wound and moves around a lot preventing it from closing up and providing an exit for fluid to drain. It may also "wick" the fluid. In many of the pictures I saw it wasn't a complete circle, but I'm sure there's no reason it can't be. The ones I saw were sutured in on one side. I guess with the "circle" that's not needed.

    Even though my bulb didn't have a lot of fluid in it, it certainly had more than gauze would contain! I bet that's why Razzy had so much "leakage". I'm really surprised the doc didn't suggest a diaper or maxipad since I can't see how this thing can work without one!

    The "rolling" is probably a way to remove fluid that doesn't fall out on it's own. We didn't do that, but I'm not sure how well it would have worked for us, since it would need to roll towards the open end of the tube.

    Anyway.. that's my guess.

    Robert
     
  4. Razzyirt

    Razzyirt Very Helpful

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    Hi *waves*

    Robert, you are right about the drains. The rubber band that I have is called a passive drain. It goes In a circle through the flap (so, half on top of the flap, and the rest is buried under the flap). Basically it just keep a hole in the flap open, so that the fluid can just leak out. And three times a day, hubby is to basically push on the flap and push as much excess fluid out of the hole as possible.

    An update on this morning....I leaked a ton of fluid out overnight. Cleaned all that up and put more gauze back there. I slept pretty good...but man alive is it ever soaked back there. The surgeon was insistent that all I place on it is the gauze and keep changing it as needed.

    I am also having the most pain I've had so far. I am really sore today....but I'm still trying to walk a little and gingerly sit a little. I can't wait until the leaking slows down though, as it is super annoying. I'm hoping that by the end of the next few days it'll slow down a bit....I'll keep posting!
     
  5. Durango

    Durango Very Helpful

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    I also had a passive drain. It was a bit different then yours because it was just one hole with a rubber tube sticking out.

    It has been almost a year since my cleft lift so I may not be accurate with the exact days, but I recall that the drainage was very heavy for about the first week. I was instructed to remove the drain on my own at 4 days post op I think. After that the drainage reduced dramatically. I used gauze which I taped around the drain hole and stuck a large max pad back there, which worked pretty well.

    Just a pointer so your not alarmed f it happens to you. About two or three weeks or so after my cleft lift I went to the bathroom and when I looked down there was a ton of drainage in the toilet. I was scared to death. The surgeon said the wound just opened a little to let the remaining built up drainage out and it was not a big deal. I was sceptically but he was right and the small hole quickly closed up and I never had any other issues.

    Congrats on your cleft lift and I hope you have a fast recovery.
     
  6. Razzyirt

    Razzyirt Very Helpful

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    Durango, thanks for the reply! I would have freaked out myself if I saw that happen. So I'll have to keep it in mind.

    Sooo....today has been a pretty rough day for me. The pain is pretty bad, and I've swollen up around the incision. It is still draining pretty good and hubs keeps pushing on it to help encourage the draining. I do not enjoy that part at all. I also tried turning over in bed, caught my knee and gave a good jerk on the stitches. Almost saw stars, it really, really hurt. And then I was all paranoid that I some how wrecked the whole thing....

    I did go for a short walk outside today. It's gorgeous here (and helps that home is covered in snow right now :)) we walked to this really fancy pastry store,picked out a few treats and walked back to the hotel. If that isn't a good incentive to get out and walk,I don't know what is! :p My goal is to be able to walk to some of the shops in Union Square. I'm slow and wobbly...but it's a start.

    I'm trying to be patient, and I still think I'm doing pretty good for it being the second day after surgery. I'm just super impatient and I can't wait till I'm fully healed. I'm also still nervous about going to the bathroom...as that happy occasion hasn't occurred yet. I'm taking the meds my doc gave (to help) and drinking tons of fluids and moving around as much as I can....any other advice on how to get things going again? (What a fun disease, eh? *laughs*)
     
  7. Robert Eden

    Robert Eden Very Helpful

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    I think moving around will help keep things "moving". Glad to hear you're continuing to do well.

    Robert
     
  8. sandman748

    sandman748 New Member

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    Razzy, thank you for sharing this experience with us. I know that if I have to get surgery for this, I'll be following in your footsteps and heading to the US.

    Without prying into your personal financial situation, can you comment on Dr. Sternbergs billing practices? Did they offer a payment plan of some sort, or were you forced to provide his office with all the money upfront via some other method?
     
  9. Razzyirt

    Razzyirt Very Helpful

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    Thanks for the reminder sandman! I was going to post the final medical costs that I had for the whole thing. At the top I had my estimates....but now that I've actually paid everything, here we go:

    Dr. Sternberg's surgical fee - $5800.00
    Surgical Centre final fee - $4500.00
    Anesthesiologist fee - $800.00

    This is all in American currency,obviously. So, you have to factor in the conversion factor. Also, I paid up front,in full, so they gave me some pretty big discounts. If you don't pay upfront, it could be at least double. I think they do have a payment plan, but don't quote me in that...

    San Fran is also a very expensive city. So,flights were $1400', the hotel is going to be $2300 (we had to get in early for the consult and then are staying for drain removal and leaving the next day). To help with some of the costs, we went to the supermarket and loaded up on good foods and have been eating them, rather than ordering in. Food will still probably be $1000 or so, and them there's all the misc fees (taxis, baggage fees for each flight, odd treat and trinket etc.).

    In order to do all this, I actually took a loan from my parents (thankfully, they were able to help!). And I set up an American currency bank account with cheques. And just wrote each provider a cheque. Please, feel free to ask any and all questions you have. I'm happy to help, and I want to help other people beat this horrible disease!

    Now...update....Day 3 post op:

    I shouldn't have been so worried (of course!) about going to the bathroom. Ended up having not even a twinge of pain. I would definitely recommend taking a stool softener though (the doc prescribed one). Made everything nice and easy.

    I am having stomach pain and cramping today but I think that's from all the pills. It's annoying and sore. I am also still in pain but its easily managed by the pain pills. If I try to go without taking the pills, I really start feeling it and have to take something. So, I'm not at the point where I could stop them.

    I'm working at sitting at the end of the bed. Very tender. And I'm gonna go for another walk this afternoon. Enjoy the beautiful weather.

    As for the cleft lift...so far, no regrets. It really hasn't been too bad. And from what I have heard about the other options....I say this is the way to go! And even though the area hurts, it's a different pain and I already feel a huge relief in the area from having the abscesses removed. I never realized how much pressure was down there. I guess I just got so used to it, I never thought it would get any better.

    I will continue updating regularly and everyone, feel free to badger me with whatever questions you have!
     
    Robert Eden and sandman748 found this helpful.
  10. Razzyirt

    Razzyirt Very Helpful

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    End of day 3....

    It still feels really weird down there. I don't know how to describe it, but the worst feeling part is definitely where the stitches go across the cleft. I've had a few bad moments...some panic, some convinced something's wrong moments. I'm trying to take it easy and still push a bit at the same time.

    I went for a 30 minute walk today. Very slow and hobbly. By the end everything was stinging pretty good. I almost made it to union square.....so my goal is to make it there by Monday. There are a few shops and places I want to go look at for fun.

    We are also going to go back to the supermarket to stock up again. Again, little nervous about getting in and out of the car and sitting. I am really struggling with sitting. I can perch very carefully on the end of the bed, but that is all so far. It's a combination of the cleft lift and all the damage from the car accident....but sitting is not coming fast for me!

    I keep telling myself that I'm not going to screw everything up or rip everything open if I keep moving around...but I'm a worrier, and I alternate between feeling like I'm pushing too much and the feeling like I'm not pushing enough!

    I'm just worried that something is going to go wrong I guess........
     
  11. Jaredsmom

    Jaredsmom Very Helpful

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    Razzy, I know the "i'm going to mess this up" feeling. everyone feels that way. You are making great strides ....I mean, you are ONLY two days post op>>> WOW.

    Want to warn you of something you MAY or MAY NOT experience....some do some don't.....but you should know about it so you don't freak out. You MAY experience numbness in and around the excision at some point. It's like....well, you cant feel a part of your butt. Don't freak out though. It's temporary. Jared had it and it kinda worried him.... not the numbness per se...just that he thought it meant something was wrong back there. It lasted for a few weeks and faded away....if it happens, don't worry about it.

    Also...remember you will likely experience stings and burns all of a sudden at some later point post op....weeks down the road....it is usually only nerve regrowth. and completely normal....it hangs around, off and on, for a few weeks though.

    If I think of anything else, i'll let you know....because it's nice to know what is and what is not normal......and the less worrying you do, the better you will heal. :)
     
  12. Razzyirt

    Razzyirt Very Helpful

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    Hi Jaredsmom!

    I think that's part of the reason I find it so weird feeling actually.....the entire area is pretty numb and just feels funny.

    Day 4 post op went abysmally.

    For some reason I have been really sick to my stomach. I think it's from all the meds. I've been super nauseous, dizzy, stomach hurting and throwing up. I haven't been able to keep the painkillers down, so as a result I've also been hurting pretty good. We also went out to the grocery store and I got sick in the car, it was very painful to sit, I got sick at the grocery store, sick on the ride home and then I was in so much pain from sitting by the time we got back....I ended up collapsing in bed and sleeping for several hours.

    As of right now, I only feel a little better. And I really hurt but don't want to get sick from any of the meds....I will post more when I feel a bit better....
     
  13. LILLY

    LILLY Very Helpful

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    Sorry you are having a bad day. I think you need to be sure to report these things to your surgeon. I realize you have other issues related to nausea but infection is always a big concern also and what you are experiencing should be reported.

    I wanted to respond to what you said about alternating between feeling like you are pushing too much and not pushing yourself enough. I'm not sure what your surgeon has told you but we were told not to push to the point of pain. This is not a situation where "no pain-no gain" applies. You shouldn't be trying to push it. You are so fresh out of surgery you should be easing your way back into things slowly and with care. It's not a race and you won't win a prize for fast recovery, so give yourself permission to recover at a comfortable pace. Don't beat yourself up if you need to slow down a bit.
     
  14. Razzyirt

    Razzyirt Very Helpful

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    Hi Lilly! Thanks!

    I should clarify yesterday....as it was totally a comedy of errors! I can honestly say that I doubt most people will have these issues :p

    I was having a really nasty flare up (I presume with all the stress etc.) and I was feeling really lousy. So I ended up not really eating anything all day. And I didn't realize, but the patch and the injection they gave me for nausea both wore off in 72 hours. So, double whammy, they both wore off at the same time. Then I really wanted to get out to the grocery store, so I took a Perocet so that my bum wouldn't hurt....and ended up unbelievably sick!

    I also couldn't understand why it hurt so bad to get in the car, as I had already done it a few times...although, now there is some swelling and bruising and it is pretty tender. But I did get a partial answer when we got back. Turns out, in everything...we forgot to put the dressing back on before we left! So, basically, my underwear was rubbing every time I moved, and also pushing on the drain. The drain is also super easy to catch on things without the dressing on top....once I replaced the dressing and got everything back where it should have been....felt much better!

    So, it really was one of those days.....now we are at early morning day 5 post op...

    My entire bottom feels tender. And I definitely feel like I'm a slow healer! It can be hard hearing all the stories of people seeming to recovery so quickly after cleft lift. I'm definitely not one of them! I can't really sit yet. I can't lie on my back. I can't walk normally, or for great lengths of time...and I still need all the painkillers. It is still hurting significantly. And as I said above, I have bruised up a bit now and there's a bit of swelling.

    But, the incision itself looks great! No redness, no warmth, it hasn't opened at all, anywhere. Still draining nicely. So, I don't think there is an infection brewing. I am also on antibiotics for 2 weeks and they gave me IV antibiotics before, during and after the surgery. But I will keep a look out for any signs of something brewing!

    So, day 5 so far. Still hurt. Nausea much improved and eating again (flare up seems to be settling). Will attempt a short walk again this afternoon to stretch my legs. Have decided I won't be driving anytime soon...
     
  15. Razzyirt

    Razzyirt Very Helpful

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    Day 5 post op....

    Today went a lot better than yesterday. I was no where near as nauseous and I'm back to eating well, which really helps. I am still taking the combination of Motrin and Percocet to manage the pain. I spent the morning taking it easy, watching some TV. In the afternoon I went out for a nice stroll. I felt pretty good and went for a fairly long walk. I made my goal! I went and looked at a few shops in Union Square. Admittedly...I probably pushed a bit again. I honestly don't mean to. And I felt really good during my walk, but I am tender and sore tonight, a few hours after the walk.

    I admit that I'm pretty frustrated. It's not the cleft lift per say, it's the fact that I've had a lot of surgery in the past few years. And I'm sick and tired of being in pain and recovering. And the cleft lift is the first major surgery I've had for the PA. And I had in my head somehow that it would be simple and I'd be back to normal right away. Of course that's completely unrealistic! So now, if only I could fast forward a few months :p

    I am still not really able to sit. I can walk, but it's slow and not a normal gate. I can move around alright, go to the washroom without any pain and take showers normally. I am still draining steadily, but it has slowed considerably since the first day (I'm no longer soaking through everything!). It is a little strange to be living out of a hotel. I would recommend locating a grocery store and stocking up.

    We have bought lots of fruit, sandwiches, cheese sticks, Greek yogurt etc. We have a hotel room with a mini fridge. It saves some money, but it also allows you to eat better. And I have Greek yogurt (higher protein) and a protein bar daily to get extra protein. I also made sure to get a protein bar that has all the vitamins and minerals so I get that as well. I'm doing my best to eat a balanced, high protein diet to aid in healing.

    I'm starting to get a little nervous about the flight back. It'll be 3.5 hours of sitting, at least. According to the surgeon, I could have flown back 4-5 days after surgery....but I don't think I could have done it this early. He also wants me to walk and sit as much as possible. He definitely pushes you to get back out there....
     
  16. Razzyirt

    Razzyirt Very Helpful

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    Day 6 post op.....

    I SAT IN A CHAIR! And it didn't hurt! Honestly, this is a huge mile stone for me :) :) :)

    I have not sat directly in a chair with no pain in almost 4 months. So, I still had my tush cushion and I didn't sit for very long...but, I consider it a big improvement!

    I also went for a pretty decent walk today as well. The improvements are small but it's been slow and steady.

    I am still regularly taking my pain meds to keep things manageable. And it does still hurt. The drain is starting to really bother me. And I still find the daily rolling to be quite uncomfortable. There are also a lot of weird and sometimes painful tugging, stinging and pulling sensations. I have some panicky moments where I worry that somehow I will pull the whole thing open.

    And the whole area still feels really strange and almost like its a foreign body part. Did anyone else go through this?
     
  17. sandman748

    sandman748 New Member

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    Glad to hear your progress Razzy. To most people the thought that sitting in a chair being a huge milestone may seem silly, but i fully understand. Yesterday was my first time sitting in a week. Did I ever miss sitting. I can't imagine 4 months.

    I'm sure that your feelings are normal. You are still recovering. Easier said than done but try to keep your mind off it. Our minds are powerful enough that if we believe something is wrong, we will start to feel wrong as well.
    I once spent an entire year convinced I had Lyme disease. All the neurological symptoms were there. Tingling, joint pains, etc... Specialist after Specialist couldn't find anything physically wrong. Turns out I let anxiety get the best of me, and once I learned what my own mind was doing to me, everything got better.

    Anyway..Stay positive. It sounds like things are getting better.
     
  18. nonstop

    nonstop New Member

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    Hey Razzy,

    Take it easy and hope you get well soon - as a Canadian, I also considered heading to the states to get a cleft lift done initially. Free healthcare and all is great, but it's rather pointless if you're going to have to wait 6 months just to get some arcane procedure done, haha. I did have a question though - wouldn't you have rather gone somewhere closer like Washington or Oregon or even New York?
     
  19. Razzyirt

    Razzyirt Very Helpful

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    Day 7 Post op....

    This day was a nightmare.

    Full of scary things.

    And panic attacks....

    Scare #1: I was tired, and we slept in late, and then completely forgot about doing the morning "rolling". So, we went for our usual daily walk. Btw, the walks themselves are becoming easier every day. Hubby took a look at the gauze after the walk and noticed a thick, white, stringy discharge that he thought looked like pus. So, of course I panic a little....there are no other signs of infection though (it's not red, swollen or anything). But I phoned Dr. Sternberg's office anyway, to ask about it....unfortunately it was near the end of the day so I haven't heard back from him. So, of course I worry about it all evening. Hubby did roll the area in the evening, and there was no further discharge. In fact, very little came out.

    Scare #2: For some reason, I was bloated and gassy today. And things were a bit slow. Not constipated...just, sluggish. So, it was a bit painful to go to the bathroom. Of course, I was already in a worried mood and then I was convinced that I was going to pull on something. So, I followed the usual routine. For the first 2 weeks post surgery, every time I have a BM, I have to take a shower after, blot the area with gauze and then take a hair dryer and dry the whole thing. It's kind of a pain...but I can see how it keeps everything super clean. So, I hop in the shower and I wet my hair. A pocket of water fell down my back onto my bottom...and I felt something pull away and tug. Almost like a piece of me falling off. I completely panic and call my husband to take a look. Turns out....the steri-strips have started to fall off! And some of them have partially come off and are flapping around! Figures....it was the weirdest sensation though. And throughout the entire shower I could feel them moving around and I really didn't like it!

    Scare #3: This was the scare that did it for me for the day! As the evening progressed, around about 11:30pm the wound was becoming really uncomfortable. By midnight I was gimping around, in pretty good discomfort. The drain area was aching every time I moved. I took a Percocet and kept trying to get comfortable. I don't know how to describe the feeling, it was just really sore...and I was all panicky (which I know, totally helps the situation!). So, I had to go to the bathroom (a pee, just so you know :p). I sat down on the toilet with some discomfort, and when I stood up...I was surprised to see a spot of bloody discharge on the floor. This had never happened before...even during the first few days. So, I'm washing my hands, turn around.....and see a big spot of bloody, thin discharge on the bathroom floor. And I completely and totally panic. I HATE blood. I really struggle with seeing my own (I had an incident in my life where I had a major blood vessel burst and I filled a garbage can full of blood before the ambulance arrived....ever since, the sight of blood just fills me with that subconscious sense of terror...can you tell I've had a number of not fun medical experiences in my life???? And why I'm struggling a bit more than most, psychologically, with this surgery??? :p)

    Hubby had to talk me down off the ceiling from this one....but, once I had calmed down, we think we figured out what happened. I think the drain got a little plugged up and some fluid built up under the flap. Hubby was saying that the hole where the drain comes out has shrunk quite a bit in size and is healing up quite nicely. Also, the drainage had slowed down and pretty much stopped from about 6:00pm on. So, somehow, however I sat down on the toilet must have unplugged it enough that the fluid all came draining out. It drained pretty quickly and stopped (no excess bleeding or anything). And it's actually now feeling a lot better, and the pain has decreased.

    So...those were my scares of the day! I'm not sure what it was about today....but I was in a really jittery, panicky mood. For all of you out there who panic and struggle with a fear of all the medical stuff, I could be your leader *laughs* This entire process has been hell for me...and will probably go down as one of the scariest things I have ever done (the whole traveling to a different country and having major surgery). Talk to me in a few weeks, when this is all over and I'm positive I won't regret it....right now though, I'm struggling.
     
  20. Razzyirt

    Razzyirt Very Helpful

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    Nonstop....in answer to your question of why I picked San Fran.

    Yes, there are surgeons listed on the website as doing the cleft lift that are closer. I actually originally chose Dr. Bascom in Oregon, and I would have gone to see him if he hadn't been on sabbatical until May. I considered waiting until May, and I may have even done so, if my wound hadn't started to deteriorate rapidly. As it was, I barely made it to the surgery date that I did have!

    So, I ended up choosing Dr. Sternberg for the simple reason that I wanted the best. I didn't want a surgeon who performs these a handful of times, or who has modified Bascom's technique. And I didn't want to have to worry about any of this. Frankly, I think it's a big enough job to recover from surgery, I don't think a patient should have to worry about the surgeon botching the damn thing!

    And I actually did phone at least a dozen different places in the States, I talked to a lot of different surgeons. And what I found was that even though they were listed on this site, they didn't actually do the cleft lift. And I met with a lot of rude places. And unhelpful places. And places I just got a bad vibe from....

    Finally, I ran across Dr. Sternbergs website about pilonidal disease. And it was very helpful. And I talked to Dr. Bascom on the phone (who was just amazing...he spent 45 mins talking to me, going through all my options, even though he didn't actually operate on me). And I asked Dr. Bascom about Dr. Sternberg. Turns out, Dr. Bascom actually worked with Dr. Sternberg and highly recommends him. More than that, Dr. Sternbergs office was great, put me right at ease and answered my zillions of questions. I spoke to Dr. Sternberg personally numerous times and they never made me feel rushed into a decision, or like I was a paranoid freak, lol.

    So, that clinched it for me. It may seem utterly paranoid to do so much work finding a surgeon....but believe me, I had a bad surgeon do a supposedly minor surgery on me years ago (and he wasn't even that bad...) and it ruined my life and I nearly died. I am still trying to recover from it to this day.

    So, all of this sums up why I picked San Fran (even though this has been ridiculously expensive!) and why I couldn't even think of letting them butcher my rear end with the open excision....believe me, it just isn't worth it. And when it comes to your health, you honestly do have to be your own advocate.
     

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