Installing height- Programdude's Precice 2 Internal femurs with Dr. Paley

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Wanted to do my part for the community and share these. Note that the first one was where there was a decent discrepancy between left and right- Right before I lengthened the 2 MM in one go. Now I believe there is only a 3 MM discrepancy.

The one of just my left leg is from yesterday when they confirmed it is lengthening normally.

Btw it is interesting to note- they allowed(insisted) me to stand fully weight bearing for the x ray yesterday. When I resisted, as my greatest paranoia is the rod being damaged, the x ray operator told me nothing he does is without paleys consent, which means that the rods are certainly a decent bit stronger than they make them seem.

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Hi Programdude

Thank you very much for writing your diary and sharing this valuable information with us. I have a few questions regarding the additional costs of LL.
1. How much is accommodation at where you are staying?
2. How many hours per week do you pay for your helper?
3. How much is all the medication? (I know your insurance pays for it but I am simply looking for a ball park figure)
4. Are there any other additional costs?

I am just generally looking for a ballpark figure on how much ll actually costs. Thank you very much if you can take the time to answer my questions.

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Quote from: The View on August 08, 2014, 06:02:23 PMHi Programdude

Thank you very much for writing your diary and sharing this valuable information with us. I have a few questions regarding the additional costs of LL.
1. How much is accommodation at where you are staying?
2. How many hours per week do you pay for your helper?
3. How much is all the medication? (I know your insurance pays for it but I am simply looking for a ball park figure)
4. Are there any other additional costs?

I am just generally looking for a ballpark figure on how much ll actually costs. Thank you very much if you can take the time to answer my questions.
I am here to help and inform people to make smart decisions- This is really serious stuff even with the best surgeon and I do not recommend anyone approach it the way I did. You really should have a game plan.

1. I am staying at homewood suites by hilton- with a long term stay and Paleys rate it is a very reasonable 63 dollars a night. This includes a breakfast buffet which is actually pretty delicious and changes up a bit every day, and dinner mon-thurs which also tends to be pretty good. The fitness center is not great but has one machine useful for LL'ers where you can sit and pedal. The pool is also an incredible feature since it is the best way to exercise post op.
2. I don't have a helper- I fired them around the sixth day, rehired them shortly after for two days and fired them again due to theft of my food and general lack of professionalism. Most will need them a lot for the first two weeks- you will not be in great shape then.
3. Be prepared for this- Without insurance this is extremely expensive due to the blood thinners costs- if you are looking to achieve around 8 cm this will cost you 1500-2000 approximately. My insurance is excellent so fortunately each month my medication costs only around 40 usd- but they did NOT inform me of this prior so I suspect many are unaware of it.
4. Not really, yet- transportation here is excellent and if for some reason the Paley vans can't get you to an appointment the hotel will free of charge. This is highly individual though. Some people may find they need help and have to pay for it- which without insurance is expensive, other may feel the need to have access to a vehicle etc etc.

You would be foolish to not have at least 100k prepared for this, and really it is always wiser to have around twice that, for life after, as well as any possible additional expenses.

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Gonna try and keep this journal more journal-ly

August 9th- Slept well again thanks to my new/good friend valium. I am getting more and more used to waking up in misery. No confusion now, and I usually immediately stretch- attempt to find a good position to get back to sleep in- fail- get up to take a shower- relish how damn good the hot water feels(it feels amazing). And then go to breakfast buffet, come back and pass out for a little bit longer.

I had PT, though they messed up my time and I ended up having to sit around getting stiff for an hour. Session went well as they all have- I am told I am ahead of the curve.

I went out to eat with one of the girls I got to know pre op- Sushi buffet, which is always my favorite. However going in a walker is a frustrating experience since she had to get me everything- and a buffet that isn't hands on just isn't the same.

Watched some TV/she gave me a thorough massage after I did my last clicks. She wanted to sleep over but I told her I'd rather go it alone since sleeping is still weird for me.

I ended up finishing a book that day too which got me through the first days of this month and is actually, in my opinion, perfect for LL'ers to read. It is essentially about students who have the theory that near death experiences can lead to developing superhuman powers, and of course decide to test this theory out. Somehow reading about the severe pain these people were inflicting upon themselves to transform/rebuild themselves felt very relatable and distracted from my own discomfort.

August 10th -
Slept well like before, although my ankles randomly were killing me as I went to bed.

No PT today(which is always unfortunate). I am slightly concerned since I've heard the same sound when lengthening my left leg a few times, which I had originally thought meant it was working, but later realized that hadn't been the case of course.

I am all too eager to strike days off the calendar and find myself welcoming anything that proves to be even a remote distraction to make the hours tick faster- since I am basically just waiting for time to slip by right now. I suspect this month will be the hardest- once it is gone, knowing there is only one FULL month where I am still distracting will almost assuredly light a fire/hunger in me.

I believe I'll be swimming again today, and look forward to the exercise tiring me out/somewhat filling in for PT.

My feeling right now is not particularly happy, miserable, stressed, or pained. Mostly I feel empty. Sort of like a shell mostly at the mercy of things like time and potentially, the effectiveness of the lengthening device which I don't like.

Next X ray day will hopefully be a good one- as it will be towards the end of the month, and if all goes well, get me a visual that reminds me of what I am here for.

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Those girls probably feel good about themselves when they help you. Don't worry, just let them help you.
So you are having trouble sleeping at night because of muscle stiffnes? or any other reason?
Do you go to Physical therapy everyday in the hotel van?
About feeling empty, how about a project, like learning a new language.

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As far as the girls- Yes they feel good and are interested etc. But it just doesn't sit right with me. Its something very hard to explain to someone who hasn't experienced LL. You just don't feel like yourself and aren't really interested in things like sex etc. Plus I don't know how it would be having someone sleep over when I am having difficulties sleeping already.

Muscle stiffness and aches are the cause for terrible sleep. Its crazy how it all kicks up the moment I get into bed to sleep. I have been having better luck staying asleep for a chunk of time which is good- but lately actually falling asleep is tough.

Pt is 5 days a week in the van and has been fine so far. Actually more than fine- as I am "ahead of the curve" and feel great after(I wish I had PT right before bed). This is I think, one of the strongest reasons to go with Paley- The free transport to PT and great staff make that part a breeze.

The problem with a project, or anything really, is that I have a constant discomfort that keeps me from being able to focus. Originally I was excited to get out there, have time away from it all, read a few books, and watch a few movies. But I was only able to read one book and watch one movie in whats closing in on a month- let alone being able to learn a language. You just aren't all there while there is this dull ache all throughout you.

The others here with help seem in a better place- maybe the fact they are here with familiar faces, or just much closer to their goals than I are helping them. Although- During the day when I am out and moving around and conversing it probably seems like I'm having a breeze myself, so what I see from them may not be accurate. One girl did explicitly say she was having no problems sleeping and slept about nine hours regularly. Another recommended benadryl to help fall back asleep when you wake up(which does tend to be impossible the times I sleep four hours or so).

Something to take away from my diary so far is that LL will test/strain you in ways you hadn't expected. And its hardly something you can prepare for. Really, the biggest roller coaster ever.

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Quote from: programdude on August 11, 2014, 02:05:19 PMAs far as the girls- Yes they feel good and are interested etc. But it just doesn't sit right with me. Its something very hard to explain to someone who hasn't experienced LL. You just don't feel like yourself and aren't really interested in things like sex etc. Plus I don't know how it would be having someone sleep over when I am having difficulties sleeping already.

Muscle stiffness and aches are the cause for terrible sleep. Its crazy how it all kicks up the moment I get into bed to sleep. I have been having better luck staying asleep for a chunk of time which is good- but lately actually falling asleep is tough.

Pt is 5 days a week in the van and has been fine so far. Actually more than fine- as I am "ahead of the curve" and feel great after(I wish I had PT right before bed). This is I think, one of the strongest reasons to go with Paley- The free transport to PT and great staff make that part a breeze.

The problem with a project, or anything really, is that I have a constant discomfort that keeps me from being able to focus. Originally I was excited to get out there, have time away from it all, read a few books, and watch a few movies. But I was only able to read one book and watch one movie in whats closing in on a month- let alone being able to learn a language. You just aren't all there while there is this dull ache all throughout you.

The others here with help seem in a better place- maybe the fact they are here with familiar faces, or just much closer to their goals than I are helping them. Although- During the day when I am out and moving around and conversing it probably seems like I'm having a breeze myself, so what I see from them may not be accurate. One girl did explicitly say she was having no problems sleeping and slept about nine hours regularly. Another recommended benadryl to help fall back asleep when you wake up(which does tend to be impossible the times I sleep four hours or so).

Something to take away from my diary so far is that LL will test/strain you in ways you hadn't expected. And its hardly something you can prepare for. Really, the biggest roller coaster ever.
You should try going to sleep on your tummy. It is not as painful as sleeping on the back. I naturally go to sleep on my back but post op it is quite hard especially with the pain/stretch on the outer side of the thighs. If your sleeping gets worse then I'd suggest you get some sleeping tablets. I take it on some nights.
As for sex post op, this is the last thing on my mind and I think I have temporarily become asexual. I can't imagine one having sex while LL

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Yeah, asexual is the right term. I mean, I am still mildly interested, but the interactions I've had with girls since the operation have been much less exciting.

Lately its randomly been my ankles hurting, so lying on my stomach tends to do nothing unfortunately- plus I am just so not used to it.

If I knew of sleeping tablets that worked I'd use them in a heartbeat.

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Yeah sleeping tablets unfortunately haven't worked at all for me either. Best thing I've found is taking an Ultracet and it makes it easier to find a sleeping position that doesn't cause me to be uncomfortable.

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August 11- Good news and bad news. The bad news is- The pain begins. Really strange and out of nowhere, today my left IT band starting having serious pain- bad enough that I couldn't lie on that side(even though I could the prior night.). I did insist he still stretch them even though it hurt like crazy. My pulling movements are very strong- my weakness right now is keeping my knees extended which is frustrating since I spend every day with this on my mind, only to be told its not great(albeit not disastrous).

The sort of good news is I've lost 20 pounds and am now just below weight bearing limit- So I can actually stand if I want to/worry less when using the walker.

I am hoping this IT issue is just from something like pushing myself in the pool etc. and will go away/diminish.

But at the end of the day I can still walk/get through PT which is what matters, and will be trying to maintain staying off painkillers.

My sleep last night was around 4 hours so I may attempt to sleep shortly and hope I wake up in less pain.