Quadrilateral lengthening - Dr. Paley & Robbins

Hello LL friends,

Just another case of limb lengthening here. I'm doing tibias + femurs at the Paley institutes. Dr. Robbins & Paley will perform on me. My tibia surgery already happened on the 01/18/2022. I've been super busy setting up the logistics for this journey. Therefore I wasn't able to post this diary earlier. I'll go back in the correct timeline to share with you guys what I've done to prepare for this. As also, any feedback/suggestion is much appreciated.

A little about me:
- Asian male, not married
- Age: 30 - 36
- Night height: 163cm, weight ~135 lbs

Background: I work in IT industry. Covid & working from home made this procedure an easy possibility.

Logistics: I reside in the west coast. I made a move to West Palm Beach (WPB) just for this journey. Yep you heard it right. I signed a 1-year lease for a 2d2ba apartment. My apartment is very close to their recommended extended hotels. I also work with 2 wheelchair taxi companies to assist with my commute. My reasoning for the move: I've spent hours reading previous patients' experiences, read the Paley's paper thoroughly, pretty much did my homework. I think the environmental support is also important for recovery. So I moved my whole life package here to ensure that. I had what I need every day to maintain an uplifting life: Sonos speakers, 55" TV, sofa, dining table, well setup living room, standup desk, work laptop + 2 monitors, etc you get the point.

Help: I was very very very lucky to have my older sister here with me. She flew here from Asia on a B2 visa and will be staying with me for about 3mo. She cooks plenty delicious food and is very caring - a great emotional support for me.

That's about it for intro. Let me know if I miss any info that could be useful for other LL patients or anyone wondering about this sophisticated adventure.

testing..

OK, here is the timeline of how my journey started.

Several years ago, I got to know about LL. At that point it was just a vague idea in my head and I wasn't sure I want to do it. I did a lot of readings about different doctors in the world. I concluded the top 3 in my researches: Dr Rozbruch NY, Shahab Mahboubian in CA, and the Paley Institutes.

End of summer 2021, I decided to have consultancy with Dr. R & Paley. I called both places to setup appt. The thing standing out with Paley's is that the process seemed well organized. They even sent potential patient a couple of research papers. Being an engineer myself, a process with thorough documentation stood out to me.

10/20/2021: I flew to NY to talk to Dr. R. My appt was at 1pm but I waited until 5pm to get to meet him. I was hungry and tired. I was glad to meet him in person and asked him the story about Sam (a pretty famous patient of R who did 8cm femur lengthening at the age of 25). Sam was recovering fine according to R. I think he is over 30yo now. Here I had my x-ray taken.

10/26/2021: Consultancy with Dr. Robbins at the Paley's institutes. I was given a tour of the area where all LL patients were being treated. I also got to talk to a guy who was lengthening his tibias. He did femurs a year before, and came back to do tibias. The institutes look nice and people seemed caring here. I felt that LL procedure has been engineered to be a mature program here. So I made the decision to go to Paley's.

--------------- IMPORTANT : STRETCHING PREPARATION FOR THE BIG SURGERY -------------------------

In my 1st consultant day with Dr. Robbins, he said I'm quite tight, that everybody's tight. He suggested me to do running stretches before surgery. I was doing it at least 30min every day from then until my surgery.

This is an example of my exercise: https://www.purewow.com/wellness/best-hamstring-stretches. But in each move, I pushed myself to the limit. At the end of the 2mo, I was able to perform these:
1. STANDING TOE TOUCH: my whole palm touched the ground and elbow almost touched the ground also. I.e. I can sniff my knee
6. SEATED HAMSTRING STRETCH: back straight, I can sniff my knee
8. SEATED WIDE-LEG HAMSTRING STRETCH: leaned a lot forward with my elbow touching the ground. I can sniff the floor.
10. LYING HAMSTRING STRETCH WITH BAND: leg on the ground is straight, raising leg formed a >90 degree angle with the other leg.

Just so you get the idea, just push more than the limit visualized in those pictures. My personal story, 2-3 weeks into stretching, my legs hurt a lot especially the hamstrings. I even developed drop-foot symptoms on my left leg, i.e. when I walk, the left foot drops more and even makes noticeable sound with my shoe lace. That went away later as it seemed the foot got used to the new looseness. 1+ mo into stretching, I got a feeling that I torn my left hamstring (like a sound you could hear/feel when you tear a piece of meat). This went together with a dark blue bruise at the back of my left thigh. Was a bit worried so I went to zoomcare to checkup, but it was OK. They advice me to go easy on myself (lol). Then fast forward 2mo into stretching, I was able to perform all those moves at ease. I could even hold each position for 45s instead of 30s. Then I knew that my hamstrings were much loosen.

01/10/2022 when I had pre-surgery talk with Dr. Robbins, he examined me and said that I'm very loose compared to other people.

I was scheduled to have tibias surgery on 01/11/2022 and femurs on 02/01/2022 (3 weeks apart)

12/27/2021: Me & my sister flew to WPB. We had to stay in a temp airbnb place for 2 weeks before our apartment is ready for move-in.

01/07/2022: Moved in the new apt, rushing to setup things.

01/10/2022: Pre-surgery administration & PCR covid test

01/11/2022: Came in for surgery at 6am to find out my covid test was positive. They called me few hours later asked that I need to be quarantined for 7 day. My tibias surgery would be delayed to 01/18/2022. But my femur's stay the same. So it's only 2 week apart now.

01/18/2022: Came in at 6am. They prepped me for a pretty long time. MAKE SURE you revise everything you read before signing. My 1st surgery is tibias, but somehow the prepped paper was saying femurs which is wrong. I spotted it & alerted the nurses, explaining to them how my procedure works: tibias first, then 2-3 weeks later femurs. The nurse who composed the paper was called in to print another paper for me to sign. Things are good then at this point. Just a bit of confusion, no big deal. They also drew my blood again because the one done a week ago was no longer valid (they said those are only valid for 72h)

The anesthesia doctor came in to give me a consent before pumping the drug. I remember saying goodbye to my sister around 9-10am. Then they rolled me to a room with lots of bright white lights when I lost consciousness soon after. When I woke up it's already 3-4pm. They let my sister come in seeing me, and I knew the surgery was done. They rolled me to my care room.

What is your lengthening goal?

I'm aiming for 4cm tibia & 5.5cm femur

Quote from: motoboarder on January 20, 2022, 10:58:23 PMI'm aiming for 4cm tibia & 5.5cm femur

Seems reasonable for quad lengthening. Good luck.

Wow you waited 4 hours to see Dr R? That's a long wait. I have heard even patients end up waiting for hours before meeting him during follow-ups. He is also extremely expensive and I don't know if it's worth paying the extra price.

I think you made a great choice going to Paley institute. It's very well organised.

Thanks Highest & yin. I'm discharged today. I'll post details of my 1st hospital stay when I get home.

Hey man, I was really shocked to see your diary. Don't know you are an exact copy of me or my diary. I am doing quadilateral, original surgery date was 11th and on that day of surgery I was told I had covid then they asked me to quarantine for a week, And on 17th I went for a pre-op then paley's management told the nurses that no need for a covid test for me again and just finish the pre-op testing formalities. I was given a tag on my right hand and the surgery was morning 8 AM on 18th. My tibia surgery was done by 1 PM in the afternoon and I was rolled over the patient resting room where my wife was waiting to see me. OMG!! pretty much the same date, same covid confusion and same surgery model. I also moved to WPB to have this surgery done and not staying in paley's recommended hotes.....LOL!!!!