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
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.
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:
Quote from: dore on August 29, 2020, 02:09:00 PMc) 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!!
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.
Checking up on ya sore how's it going pain and everything and deformity correcting yet
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.
Quote from: dore on September 07, 2020, 01:08:38 AM9/5 - 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?
Quote from: wannabeidol on September 07, 2020, 01:33:45 AMhey 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.
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