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[dore]

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

[dore]

Reserved

[dore]

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.

[ghkid2019]

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

[ghkid2019]

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

[dore]

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.

[ghkid2019]

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

[Hagane]

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

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

[dore]

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.

[dore]

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.

[HeightGain]

Seems like you have a decent plan worked out. I have a similar issue to you but am slightly shorter and larger wingspan.

Would you consider 3.5/4cm? I think it would be more favourable to your proportions.

It's good to hear things are going well

[xibin]

Hi dore,
Are you staying at the hackerman patz house? Are cLL patients allowed to stay there? What's the daily rent? They say on their website that it's onlyy $15 an hour. Even though Assayag charges a bomb for this procedure ($95k; as much as Paley) staying at hackerman patz if only $15 a night would save some bucks for sure (90 days is just $1500 or there abouts). And no transportation charges to the hospital because it's right there.

[dore]

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.

hackerman 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.

[dore]

Some neat xrays

Intraprocedure (during the nail insertion last week):


From the post-op:

[Ghostfish]

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).

Hi dore

I really wish you the best of luck in your journey.
Just one thing that I really want to correct in your writing is this part "Stryde femur is a walk in the park compared to the external fixator."
Although it is true that strye femur is a lot easier or more tolerable than external, it is NOT a walk in the park.  It is not easy at all even for only femur stryde. In your case, you are having quadrilateral lengthening with femur stryde and even external for tibia.  That is a really hard and tough journey for anyone.  On top of that, you have some deformity problem and arthritis as well.
I think it would be wise for you to be more conservative for lengthening and to be more focused on correcting all those deformity issues.

Good luck!!

[dore]

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.

[ghkid2019]

Checking up on ya sore how's it going pain and everything and deformity correcting yet

[dore]

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.

[Hagane]

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.

hey dore is it ok for you to be taking naproxen? since its an NSAID?

[dore]

hey dore is it ok for you to be taking naproxen? since its an NSAID?

It was prescribed by the Dr. Plus my callouses seem fine in the xrays.

[ghkid2019]

If u use NSAID I wecommend use a heat pad for the tibia out it on the bone for some time need to keep it potato hot since u recoverin it is good

[dore]

9/12 - Day 17 (along with notes from other days) -
Yesterday was exhausting. Another post-op appointment and a pre-op COVID test. The test site was on the other side of the hospital and in retrospect I should've asked to be wheeled as what used to be a short 5 minute walk took me 25 mins. Unfortunately the fatigue doesn't really hit me til hours later so I just have keep this experience in mind for the future. Stitches were removed during this appt, yay no more itching. The sutures are still a little sore but I expect that to improve quickly.

On Thursday I found an offsite PT. It turns out she used to work at the hospital and was pretty knowledgeable about LL. I feel pretty lucky finding someone like that by just calling random places.

I haven't walked around unaided since those few steps I took on day 12. Some 2/10 pain continues to occur in the tibia when putting more than half my weight on my right leg, as well as an occasional popping sensation from the fibula fracture. I think I am subconsciously getting good at avoiding putting weight on the leg which is not what I want. I've decided the temporary LLD isn't helping at this point either (about 1cm distraction right now). Gonna try focusing on using that leg more and taking tylenol during the day. The doc says the fibula issue should go away with more distraction.

I'm figuring out tricks to adjusting the fixator. The struts have 13mm adjusters that "click" for every 0.25mm of adjustment. They also have 10mm locknuts. My trick is to keep the locknuts tight which makes the adjusters impossible to use by hand (or accidentally when sleeping), and use the leverage from a 13mm wrench to do the clicks. Saves so much time over loosening/retightening the locknut every time.

The pinsite burning died down quickly with the antibiotic regimen. I'm trying to figure out a dressing technique to prevent the infections in the future, it seems pressure on the skin is key especially near the joint where skin can bunch up.

I got some cramp-like discomfort in my quad muscles after one of the femur distractions. Tried to stretch it but the fixator is in the way of quad stretches for now. Also continuing to lose hamstring flexibility rapidly, touching the ground with that leg is now impossible and I even feel a bit of tightness just trying to straighten the leg while walking. I did figure out how to do deeper hamstring stretches using the leg lifter though. Sitting on hard surfaces continues to be uncomfortable.

More xrays:
Femur coming along

Wedge-like tibia distraction (the correction)

[ghkid2019]

So are u distracting 10cm still or did doc say no

[dore]

Doc is quite ok with this. I mean you have to remember they're not the ones experiencing the pain here lol. It also doesn't seem problematic in theory, the theory being max 2mm per day nerve stretch. It is effectively just 5cm otherwise. If problems occur he will slow/stop the distraction, like has happened with many others here.

[ghkid2019]

ok I hope it go well and hopefurry you get correction and new height den god bles

[dore]

Mild tibia pain continues to be my main bottleneck for weightbearing. Maybe things will change when I no longer have a good leg to stand on. Couple nights ago I got some 4/10 tibia pain when I rolled onto my left side in bed, but once the thigh cuff arrives I won't be doing that anyways. I get minor aches from the femur now. Sitting continues to be uncomfortable.

Got some flexibility numbers from my PT, listed at the bottom. Dramatic loss of flexibility just a couple weeks in. On 9/16 I finally started feeling some quad tightness (the fixator was covering up the loss of flexibility there).

9/17 - Day 22 -
Left leg surgery today. Remembered to shave my arms this time for those IVs, along with taking the stool softener last night in an attempt to avert the constipation. Discussed pausing the femur lengthening due to the hamstring tightness with the Doc.

Flexibility loss numbers, left vs right (basically before vs after since left is untouched):
hip extension (less is better for this one) - left: 5°, right: 15°
hip abduction - left: 40°, right: 38°
knee flexion (mostly fixator) - left: ? (arom was 140), right: 120°
hamstrings (less is better): left: 20°, right: 35°
ankle dorsiflexion: left: 12°, right: 8°

[ghkid2019]

How mucho distracted in CM so far sir

[ghkid2019]

Hello dore are you still aiming for 10cm or nah reality hit you

[ghkid2019]

Please dore I beg I'm your biggest fan I want to see you do quadrilaterals 10cm cuz u said it was so easy please dore please tell us update please you r my idol 💖
U said stryde Femurs is walk in the park plz let me know 10cm I believe u you say it walk in the park break leg is walk in the park

[las vegas baby]

I seen you give unsolicited advice to folks here when u havent got this done yourself! How bout you make a plan for urself first?

dore is with a reputed surgeon who knows what hes doing. He will be fine.

@dore ignore this guy.

[ghkid2019]

Ya I'm being a bit too mean wit the sarcasm and rudeness I just think expectations was a bit too high and I still dun agree with doctor approving quadrilaterals lengthening when early onset athritis leik I wud just fix deformity first then blah blah u know and stuff I do appreciate dore giving us ur experience that external fixators probably tough to deal wit and all Dem pinsite problems and stuff ik dore is prolly working hard rn and I hope he can acheieve at least 5cm legnthening or 2.5cm each set of legs so he can be 6'0 officially afterward. 6'2 I think he can do it but quadrilaterals at the same time r difficult asf but hopefully all is well

First priority fix the deformity correction which I am glad and confident it will turn out good for mister dore.

Lengthening I hope he can achieve at least 5cm and 10cm is great but I think will take the manliest of peoples

I dink duh physical therapy hard too wit the external muy dificil idk good lucko mode sicko mode