I'm excited to share that I'll be undergoing CLL with Dr. Rozbruch in NYC very soon (next two weeks). I will do my best to document my experience for others who are contemplating the surgery.
Vital stats: male, in excellent health, over 35. Non smoker/drinker/no drugs. Measured at 5'10" (178cm) or so in Dr. Rozbruch's office - though my Dr. and home measurements have me somewhere around 5'10.5' (179cm or thereabouts). Weigh 150 lbs. and plan to get to 145 lbs. by surgery time. My canals are wide enough for the 12.5" nails which will allow some limited mobility with crutches during lengthening.
I pre-qualified through psychological assessments and consult with Dr. Rozbruch. Consulted both Dr. Rozbruch and Dr. Paley, and while both are obviously excellent choices, ultimately felt more comfortable with Dr. Rozbruch's approach and the reputation of HSS as being a world class hospital.
Given the (slow but certain) disappearing stigma around this procedure, its increase, and clinical acceptance of height dysmorphia, I am hoping this will be a judgment free place to post and help others through my experience. I've been open about the procedure with my immediate family, close friends and significant other, who have all been encouraging. I won't engage in any back/forth around why I'm having the procedure done with my height being what it is. I've suffered from height dysmorphia for decades and Dr. Paley has an excellent write-up on his experience with a 5'11" patient. This is something I'm doing for ME, not for relationships, career, otherwise.
Will respond to most questions and do my best to keep a thorough journal. Will not post pics - x-rays all look the same.
Thanks, and wish me luck!!
Precise 2.2 CLL (femurs) with Dr. Rozbruch - February 2023
Quote from: informationispower on January 31, 2023, 10:24:50 PMCan I ask you why are you doing this? Not shaming but just curious as to why someone of an upper average height would pay so much and ensure ao much.
I wish you a safe and successful journey
I've had severe height dysmorphia since I was 15 years old. I weighted the pros and cons and decided it was worth it for me to no longer bear this mental burden. Really, that's it.
Page 6 of this document by Dr. Paley has a very good explanation with someone near my starting height.
https://paleyinstitute.org/wp-content/uploads/Cosmetic-Stature-Lengthening-FAQs.pdf
Quote from: stretched on January 31, 2023, 10:46:25 PMWhat made you decide to go with the tibias over femurs?
Best of luck, you got this
Both Dr. Paley and Dr. Rozbruch recommended femurs. My sincere apologies and thank you for catching this. I also edited the subject.
Both also had the same reasons. My tibias are proportionate, and my femurs are objectively and visibly short. I have a long torso and above average wingspan. Lengthening the femurs will actually bring me into proportion ratio-wise, and is safer, so it all made sense.
Quote from: EndGame on February 01, 2023, 12:15:18 AMWhat do you mean by "I pre-qualified through psychological assessments"? What is required to qualify?
I had to undertake a psychological assessment. It was very thorough and if I hadn't been approved by Dr. Westrich I would not have done the surgery with Dr. Rozbruch.
I'm not certain that Dr. Rozbruch doesn't believe in lengthening taller patients, or if he did, that thinking may have changed. I do know he requires a psychological eval, Dr. Paley no longer so. As I said, ultimately I think Dr. Rozbruch was the right choice for me - two excellent surgeons but felt more comfortable with Dr. Rozbruch and HSS.
By the way, really appreciate your well wishes, as well as everyone else's!!
Pre-op procedures:
This had to be the absolute most thorough hospital/Dr.'s visit I have ever had and it only increased my confidence that I'm doing this procedure with the right doctor at the right hospital.
You arrive on the 3rd floor, you check in and you're immediately sent to 6th to obtain Dr.'s clearance. Note: this is in HSS, but a separate part of the hospital from Dr. Rozbruch's practice. You first meet with a RN who will ask you every question imaginable about your health history, medicine you take, past surgeries, family health history and so on. Blood pressure, heart rate, oxygen, height (I measured 179 cm!!), weight. They even measured my neck circumference. They go over protocols for before/after surgery: what you can eat/drink, what to avoid, what supplements to take/stop, etc., even shower procedures. You get a special scrubber that you need to scrub your femurs (in my case) for 2 minutes each night before surgery. They print all this out for you.
Then a Dr. comes in, and asks even more detailed questions, and upon satisfactory answers she orders tests and sends you to get an EKG, blood work (which will inform what supplements/meds you will need), and COVID test. Note: COVID protocols are in place at HSS, everyone is wearing masks and everything is sanitized.
After the COVID test you're sent to Dr. Rozbruch's office across the street (still part of HSS), where you go in for the specialized x-rays. They take them from different angles. You then see staff who take before pictures from all angles and video of walking, gait, etc. Then a PA comes in to answer any other questions you have about procedure, logistics, and to ensure you have support. They tell you what you can expect day of surgery. You get brochures and paperwork on recovery, facilities, etc.
Everything is done on time and the process works like a finely tuned machine. Everyone is incredibly nice and supportive. Pro tip: doing the paperwork through the portal saves time, do that before you go to the pre-op appointment.
Obviously do not lie to doctors or hospital staff, it would not be in your best interest going into any type of surgery. I answered every question with full honesty. The pre-op visit actually eliminated a lot of anxiety and I'm going into the surgery with a great degree of confidence.
Day Zero, through operation
I'm officially a cyborg. The operation went off without a hitch.
Pain level: 3/10 - where 0 is no pain and 10 is the worst pain of your life.
There's a lot of really good information that's missing about what happens up to and during the procedure, especially with Dr. Rozbruch and HSS, so I will do my best to add.
3 days before the surgery, you get a call with your surgery time. You're supposed to arrive 2 hours early, check in, get a wrist band and are sent to the 4th floor. If you have someone accompanying you, they MUST either have been vaccinated or have a PCR test (not antigen) no later than 5 days prior. This hospital is incredibly serious about COVID. Everyone is masked, everyone sanitizes frequently, which is awesome. The hospital and facilities appear to be very clean.
I went to 4 where I changed into a gown and got a bag for my personal items. Valuables are checked in with security. You're advised to not bring too much that is checked in. You get an IV drip going, and lots of people come and ask you both medical as well as safety/security related questions. You get your legs shaved with surgical clippers, which I'm going to buy based on their sheer effectiveness, assuming I can find them. Then you get scrubbed/sanitized again. Everything is super thorough. No one wants to make a mistake. You even get a visit from a "spiritual helper" of some sort who is just there to pep you up, and you have the option of having a chaplain (or other faith based leader) if needed prior to and post surgery.
You're eventually seen by an anesthesiologist, then Dr. Rozbruch, who signs the areas operated on, your bracelet and talks to you about what's going to happen, when you can expect to be released, and answers questions. Dr. Rozbruch informed me that he would try the 12.5mm diameter nails, but had the 10.7 just in case the former did not fit. Thankfully they did!!
My surgery was a bit delayed because the OR was very busy. This is apparently normal, and I took it as a good sign that they weren't rushing people through like an assembly line. When I got wheeled into the OR, there was music playing and a ton of staff just for me. I saw two Nuvasive boxes, was transferred to the operating bed, and chatted with the nurses and staff a bit. Then the anesthesiologist came in, went over what we discussed, and began to administer the epidural (general anesthesia is a last resort option) and nerve block. You essentially feel nothing from the waist down and it's safer, and you sleep the entire time. I wondered if I would. I did, because shortly after that I remember nothing and woke up several hours later in the recovery room. I never even saw Dr. Rozbruch enter the OR lol.
Day Zero, recovery to now
Pain level: 3/10. I should add the pain is really stiffness - think of it as having gone really hard on leg day and you're sore AF a day later. If you're not moving, you're fine.
You wake up kind of not knowing where you are, then the fog starts to lift. As soon as you're awake nurses begin to check on you. The first thing they want to see is how far along the nerve block is. You don't leave the recovery room until the nerve block fully loses effect. This took at least a couple of hours. You're asked to wiggle your toes, push a pedal, "can you feel anything" while they touch your feet. Initially the answer is no. You know something is down there, but nothing happens. Then gradually, you begin to regain motion and feeling in your legs and feet.
You have pain management options post-anesthesia, from Tylenol to opioids. I opted very light on opioids but was warned I would need some before morning to manage the pain. You also get inflating cuffs put on your tibias that inflate/deflate every several seconds as additional help against blood clots. You can finally have water and eat!! I suggest asking for food because in a busy recovery room, they tend to forget - I ate very late. You start with Jell-O and work up to a sandwich, or at least that's what I wanted. You're given whatever meds you use for sleep but in lower doses, given the fact that you have anesthesia in your system and opioids. Once the nerve block is gone and they deem you ready to leave recovery, you're wheeled off to a private room, which is where I am currently.
After the operation, your belongings follow you. They bring you a little sanitation kit with toothbrush/toothpaste, etc. I asked about showering and they prefer you do not shower until you leave the hospital. Strong emphasis on prefer. You pee in a urinal container designed to collect in bed. Wasn't really a problem. They insist you do this before you go up to your room, and when I said I don't know if I can, they ultra-sounded my bladder and showed me it was nearly full.
Sleep: You're not going to sleep the first night. If you do, consider yourself beyond lucky. I'm in a state of zombie like tiredness, and I'm obviously blogging at 4:51 AM and not sleeping. The PA said it's very common on the first night and just sleep when you can. This is the part that sucks the most.
Thus far: the professionalism, demeanor and overall logistics/cleanliness/safety of HSS and the folks that work here has been outstanding. Everyone is incredibly nice. At this point I have no reason to believe that Dr. Rozbruch did anything other than an excellent job, as one would expect. My legs feel like they weigh a ton each but seem otherwise fine for post-op conditions. They're heavily bandaged, so I can't see the incisions yet.
People check in on you constantly. If you push the red "I need help" button, you get someone fairly fast. The only thing that's been slow has been the PA with the meds. At this point I expect to just pass out when my body finally collapses, so not really worried about it.
I had no anxiety up to the surgery, not even the night before. I had a TON of anxiety in the hospital. It becomes real very quickly. At this point, I am VERY VERY glad I did this. Even coming out of the OR, I feel like a giant stone that's been there for decades has been lifted off my mind, and I'm only starting. I also feel great about my decision regarding Dr. Rozbruch and HSS.
If I couldn't afford either Dr. Rozbruch or Dr. Paley, I would have worked a side gig, Uber, DoorDash, anything, and saved until I could. For those that would say they can't, I met a handicapped Uber driver a year ago who has a government job and drives for Uber in the evenings so he can pay off the 3 bedroom house he and his family live in. Interestingly what convinced me to only do this with these two surgeons were the horror stories on this forum. I wanted to/still want to avoid being a statistic at all possible costs.
(Gentle note: above on surgeon/cost choice is my opinion obviously. Everyone will make the choice that fits them best. I won't engage in debate about this, I just wish everyone luck no matter what, and do your best to avoid known surgeons/facilities with risk)
I'll do my best to write comprehensively so these posts are hopefully useful and productive to those considering the surgery. I don't know how much time I'll have to answer questions, but I'll do my best. Physical Therapy apparently starts making rounds in 3 hours or. God I hope I get some sleep before then.
Man it's not gonna be easy 
. Thanks a lot for your support, as well as everyone else!
Day One, in hospital
Pain level: 5/10 - 10/10
At about 7:30 AM, you start getting a throng of visitors. One of Dr. Rozbruch's fellows, acute pain MD, the MD that cleared me came to check in - everything from doctors to housekeeping to the TV people (seriously). Everyone is super attentive, but all I wanted to do was sleep.
The acute pain doctor said one thing that bears repeating. When the nerve block comes off, the pain block is the last to go, and you'll know it when that happens. It's absolutely true. I didn't take enough Oxy because I didn't feel like I needed it. BIG mistake. When the nerve block wears off, it's like jumping off (or up??) a cliff in terms of pain.
A lot of people, myself included, wonder how painful this gets. It's the most painful thing I've ever been through, flat out. You will hurt, badly, and it's part of the process. I could have done better if I managed to prevent, and had to catch up all day. The slightest movement will send pain through your body that is so intense you'll feel like passing out. I now chuckle at the folks that wonder how soon they can walk and weight bear, because one day in, I can't even move my legs without feeling like I've entered a VIP room in hell.
PT came in to assess. I clearly failed, I could not get off the side of the bed because I was screaming in pain. Again, this is on me, and results should be different today. The higher Oxy doses and muscle relaxer are controlling the pain nicely right now.
Dr. Rozbruch came in to visit and lit into me a little for not managing the pain. PT also left this device that just moves your leg up and down, that I did for two hours each leg yesterday. That wasn't enough and he wants me to do more. I started early this morning, it's actually great for mobility since I can't lift my leg up on my own yet.
Nuvasive rep is going to come teach me how to use the distraction machine today. I think I lengthen a little in the process but don't know how much, certainly nothing significant. That starts next week.
If all goes well, looking at discharge tomorrow. Finally slept last night - my body just gave out. Once I leave the hospital I think I'll sleep for a week.
Day two, in hospital
Pain level: 4/10
Switched meds and it's night/day difference. Was able to get off the bed and "walk" a few steps to the high chair. Just getting out of bed seemed like a massive accomplishment.
Another thing I've seen that really hasn't been addressed: "What exercises do you need to do prior to LL?". Dips. Lots and lots of dips. Totally serious. You will have to post up and scoot A LOT. Make sure your upper body is prepared. Also pull-ups. I'm lucky because I'm active and do both as part of my workout routine. I would legit be screwed otherwise, especially if I could not be able to use my arms and chest to support my bodyweight.
The new meds gave me the undesired effect of not being able to pee, so they used a catheter. Slept as well as you can sleep in a hospital that checks on you this regularly. Learned to use the traction device - it's super easy and I didn't feel a thing. You have to break up the distractions into 4 per day, and if you miss one you have to let Dr. Rozbruch know. Yesterday was .2 mm on each side, but only to learn. I start distracting in earnest next week.
Waiting for PT to arrive - hopefully I clear today and get to leave. I feel much more optimistic given my new meds. I went from "I can't even twitch a single muscle" to moving around the bed and getting to the side of the bed completely unassisted last night, and I can pick up my legs this morning, so I should be OK.
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