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
Quadrilateral lengthening/correction with Stryde/Ex-Fix - Dr Assayag (Baltimore)
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.
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.
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.
9/2 - Day 7 -
Wow even just 0.8mm of distraction is noticeable. My hamstring feels hot and a little tight when I try to touch my toes. I wandered around the house a bit with one crutch, but switched back to the walker again when I got tired. Lots of swelling in the lower leg today.
9/3 - Day 8 -
More insomnia, but I wised up and did a distraction at 3am. Swelling continues but I've been wrapping up whatever portion of calf is available. Not sure if elevation is doing much here, but wrapping seems pretty effective.
9/4 - Day 9 - 3.8mm so far -
Moving right leg getting even easier. Swelling reduced slightly. Weightbearing getting easier esp with the right leg being longer and more likely to take weight. Tested it with 140lbs this time, going to try to add standing on one leg to the PT routine as it seems ankle instability is the main thing holding me back.
Had the postop appointment early mostly to reassure me about the tapping sensation during distraction which nobody could explain. Dr Assayag measured as best he could given the small amount (3mm distraction so far) and it appears to be noticeably different from the images taken during the operation, so hopefully all is well. Nurse also changed my pinsite dressings (I usually do it daily) and removed the gauze from my sutures.
Twinges of 3/10 pain from the femur from time to time, esp when sitting with leg dangling. Tibia pain has died down to a continual 1/10, with burning from a couple pinsites here and there. Sutures itch.
I can feel the difference in hamstring tightness already when trying to touch my toes. I asked the PT about hamstring exercises which were missing from my first PT handout (those were basic ROM exercises with little stretching)
Trying to draft up an economical PT plan atm as my insurance only covers 20 visits. Figure I'll go there weekly and perhaps get a less expensive PT office trained on my regimen. The hospital PT is about 400 a visit whereas offsite it's more like 50. The routine is pretty simple it just requires another person to do the more effective stretches.
Quote from: xibin on September 04, 2020, 02:03:17 PMhackerman patz house
I did stay there briefly, now I am at a friend's house. It is indeed $15 a day for now (due to a donation), and is for any patients of Sinai Hospital which includes CLL. They did want to require a 24hr caregiver (this is designed for parents) at first but Dr Assayag talked them out of it. It was easy to get to the house alone (hospital staff will wheel you there), I hadn't tried the reverse. It's a short uphill walk but even that is a bit much for these early stages (I get tired pretty easily now). Also don't count on being able to walk those first few days with a bilateral operation, I am quite thankful for having a good leg available. I guess most people remain in the hospital for those days though.
Might seem obvious but there is no food there, it's kind of a spartan hotel (microwave, no stove, fullsize fridge, no plates). I stocked the place beforehand, but it seems you can take delivery.
Some neat xrays
Intraprocedure (during the nail insertion last week):
From the post-op:
One more note for hackerman-patz - it is a good idea to reserve it well in advance, I imagine it is in high demand especially during a normal summer break.
9/5 - Day 10 -
Thigh soreness when trying engage right leg. Fibula wire burning mildly. Reapplied magnet skin mark and double checked the fixator struts in preparation for tomorrow. Texted the doc about potential nerve issues - my foot feels asleep when I elevate it. Not a good sign for a quadrilateral lengthening as nerves are the main bottleneck. Doc said stretch and keep an eye on it.
Experimented with various sleeping postions, I like being curled up on either side now that the sutures aren't so bad. I stick a pillow between the legs so the fixator doesn't bruise my left leg. Haven't gotten my knee extension lock yet so I suppose I should enjoy this while I can. I also have an improvised dorsiflexion boot that I use at night (PT made it out of some heat-formed material and some velcro). Both devices attach to the fixator.
9/6 - Day 11 -
Tibia distraction starts today. Femur distraction reduced to 0.8mm per day. Looking at the adjustments, it seems today is more correction then lengthening as there's a whole 1mm on a certain strut and around 0.25mm on the other 5 struts.
3/10 tibia pain reappeared briefly, maybe because of distraction? But then later in the day I was single-crutching no problem, with 1/10 pain appearing after 100 steps or so. Later tried walking unaided, with a gait like I was hobbling around with a huge limp. Not much pain from femur today.
When I changed my pinsite dressings today I discovered an infection. Two of the halfpins had been discharging quite alot of yellow-red stuff all week, and the one near the knee that gives me discomfort had been turning green these past couple days. I started antibiotics and started wrapping that one separately. The second halfpin appears to be clearing up on its own. A big scab came off the fibula wire, exposing a long streak of redness. Hopefully that heals up.
Painkillers: typically I take 1000mg tylenol at night, none during the day, 500mg Naproxen twice a day.
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