Quadrilateral lengthening/correction with Stryde/Ex-Fix - Dr Assayag (Baltimore)

Sup I just got operated on yesterday.

Background:
33yro
5'10 height
6' wingspan
semi-severe genu varum (15 degrees)
beginning signs of arthritis (2/10 pain)
accumulating meniscus injuries starting in adolescence
already avoiding certain activities (running, hiking)
existing 10 degree bony knee contracture as well

Reasoning:
Looks like I need painful surgery at some point (knee replacement if I do nothing), why not get taller doing it? Granted, adding in lengthening seems to extend recovery time by a couple months.

Plan:
Correction/lengthening of tibia using external fixator (OrthEx, a TSF lookalike)
Shooting for slight overcorrection, presumably to compensate for femur deformity
Lengthening of femur using Stryde nail (11.5mm dia/301mm length/piriformis entry)
Two surgeries, one per leg 3 weeks apart (starting with right side tibia/femur)
Lengths per segment: 5cm/5.5cm

I started my journey in Florida back in July, when I visited Dr Paley. He said I had a tri-planar tibial deformity, along with a slight femur deformity (LDFA 93). He recommended external fixation, which no-one else had mentioned until then. This was to maximize correction accuracy - TSF-style allows you to check xrays and change course dynamically to achieve the optimal result. I hadn't realized this would get easily covered by insurance until this point, with everyone pointing out that my condition was kinda bad and ex-fix being one of the established treatment plans for it.

I had actually emailed a few places, including the ICLL in Baltimore. Paley's office responded first so I went there and got xrays and a consultation. ICLL responded a couple weeks later, with Dr Conway referring me to Dr Assayag. I emailed the xrays to ICLL and went to Baltimore later in July. Meanwhile I had asked the Paley Institute for a quote on what insurance would cover, and had trouble getting an answer from them. They seemed to prefer cash and his assistants were giving off some car dealership vibes. Meanwhile ICLL completed the insurance dance in just a week. I started moving forward with them.

Things moved along quickly there, with surgery dates getting scheduled etc. I had my right leg operated on 8/27 and am now at the Hackerman-Patz house, a really cheap almost-oncampus inn for orthopedic patients at the Sinai Hospital. Lots of Disney movies being played there as most of the patients are kids.

Xrays:
Frontal view with genu varum:
https://i.imgur.com/RVdUclw.jpg



Procurvatum deformity from side (technician trying in vain to straighten knee lol)
https://imgur.com/GakkpFJ


Treatment plans:
https://imgur.com/3IsfdTj

https://imgur.com/4SKalKF

Reserved

I've tried walking a little on the leg yesterday but there was pain from my front calf muscles that made it a bit uncomfortable. Weightbearing didn't feel bad, but moving did. Currently navigating by hopping around on good leg with walker. Resting pain level is 3/10.

What do you mean " right side first tibia/femur"

And why are you touching the Femurs or Lengthening cosmetically 10cm. Doesn't seem smart to me when you showing signs of arthritis at age 30

I have a nail and fixator in my right leg right now, and nothing in my left leg. Left leg will be later in Sept.

Why femurs?
a) I don't want to go thru this process again, it was now or never
b) the adjustable tibia frame can compensate for femur alignment issues. Presumably alignment issues are the source of people's worries about arthritis.
c) stryde femur is a walk in the park compared to external fixator. Most of my pain right now is from my tibia/fibula (the sutures for stryde do sting a tiny bit). Perhaps I am fortunate here but my experience is mirroring one of Paley's patients I met where there wasn't that much pain with Stryde.

Why lengthen at all is a very good question, it's because I've wanted to do this for years but hadn't had the motivation to go thru with all the pain/disability until my other issues came along. Yes it is inviting many complications but I would heavily regret going thru this painful procedure without also getting the lengthening I wanted.

I hope you do realize the pain when lengthening starts will be nearly unbearable like literal torture, for a quadrilateral Lengthening. I would go 2.5cm each and call it a day. 5 cm total gain. Get to 6'0.

Almost every quadrilateral diary I've read the person gave up very early, not even close to 10cm gain. Keep in mind these people considered themselves very hard workers and way above the pack. Yet they caved

You will be going thru literal hell, I highly recommend to be more conservative in your goals, and do much less than 10.5 cm brotha

Quote from: ghkid2019 on August 29, 2020, 03:02:01 PMI hope you do realize the pain when lengthening starts will be nearly unbearable like literal torture, for a quadrilateral Lengthening. I would go 2.5cm each and call it a day. 5 cm total gain. Get to 6'0.

Almost every quadrilateral diary I've read the person gave up very early, not even close to 10cm gain. Keep in mind these people considered themselves very hard workers and way above the pack. Yet they caved

You will be going thru literal hell, I highly recommend to be more conservative in your goals, and do much less than 10.5 cm brotha

i agree that itll be a big struggle, if anything the biggest focus should be on the tibs due to the fact that its external and its correcting deformity. having said that perhaps dores bowleged deformity is so bad that he requires correction both above and below the knee.
in theory if the quad lengthening does become too much, he could always stop lengthening the femurs and focus solely on the tibs, then down the line, he could always rebreak the femur anbd continue lengthening  like dr conway mentioned in her interview with big vic

Day 4 -
Sleep troubles continue, getting about 5hrs a day when including naps. Feeling some soreness on the femur side of things now, with the tibia pain subsiding a bit. Walked a few steps on the right leg today, leaning quite a bit on the walker. Found out that I can load it up with about 70lbs before some 7/10 pain occurs in the tibia. Trying to work thru my PT routine, it's been difficult to get the right leg to move at all, due to inflammation? I had been using a leg lifter these past few days but trying to graduate out of that. Rapidly improving though once I push hard enough. Sitting is getting easier now that the right leg is contributing.

Day 5 (8/31) -
Moving the operated on right leg is alot easier now. So much easier to get out of bed, I pretty much stand unaided and then go "oops I should grab the walker". Before I would have to laboriously haul the bum leg out and try not to drop it. Took lots of steps on walker (trying to put hops behind me), loaded up leg to 125lbs before getting nervous about standing on one leg. Still not confident enough to fully load the right leg, even though it was not painful in the morning. Some pain while loading in the femur appeared later in the day. Tibia pain seems mostly gone although there is muscle soreness in all parts of my leg.

Sutures now itch more than sting now. It's kinda annoying to try to scratch an itch and encounter a bandaid lol. Getting some burning in one or two pinsites especially when the skin is flexed.

Day 6 (9/1) -
Busy day today with femur distraction start (tibia is later), first shower, pinsite cleaning, and a PT appt. Got a late start to the day due to stomach troubles last night (I'm blaming a vegetable I ate). The ERC is password locked to 5 distractions per day so it looks like I can only fit 4 out of 5 them in if I do it once every 2 hours. Guess I'll get a head start on tomorrow's distractions after midnight. I have not been sleeping on a normal schedule and should have factored that in.

The distraction itself occasionally made a sort of clicky feeling (not a sound). Not sure if that is normal or not, are the clicks the normal rotation or something slipping? Vendor says it's the magnet winding up (the clicks do show up towards the latter half of the distraction).

This with the ERC v4. Interestingly I was offered the choice of a v1 as some people seem to prefer the old device. We'll see how this one performs in the xrays I suppose.

Muscles get stiff easily today. I also did a (relative) ton of walking around the hospital after my PT appt, around 1800 steps vs the usual 100-600 or so. 1800 made me feel like I had a hangover afterwards, so I might make it a goal to walk 1000 steps a day since 600 seemed pretty easy.