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[programdude]

Didn't sleep well as usual last night, but once I'm actually tackling the day I feel fine. Pt went well as usual and I ended up lapsing into sleep when I got back to the hotel.

Ended up hanging out with that girl again now that I'm more capable and feeling more human and we went shopping, with me resolving to use my walker as much as possible starting today. I got new shorts since my swollen hips had my others not fitting and an overpriced foam roller for PT.

Also got some heating pads to see if they help with the sleep, and took a valium as per my PT's recommendation.

Will see how tonight goes, and more importantly the x rays tomorrow morning.

[programdude]

I do think the pads helped- I managed a solid 2 and a half or 3 hours of sleep, but awoke to the usual extreme discomfort. It is tolerable though and there is always the literal light at the end of the tunnel of morning, moving around, eating, being distracted by conversation/company(which really does help).

Weirdest thing is- I'm no longer really medicated but when I wake up its in a delirium, almost without fail- Which is not normal for me. Usually I think something is happening that isn't, like just now I woke and an entire scenario of people coming up to get me for PT played out in my mind and I was jostling around starting to get ready(more just jostling around but I'd convinced myself it was for the purpose of the latter), and it literally took around five or ten minutes to realize it was 2 30 am. Usually these bouts of confusion are shorter, and I think thats in part due to the fact my sleep tonight was deeper.

I'm not really complaining mind you, its just strange since its clearly correlated to the surgery- not just a change of scenery since the week I spent here pre op I slept like a baby and woke up totally normal.

So, I know although I seem like I've been a bit of a downer about things, I do usually compose them at night, when things don't seem so great. It does seem like things are getting better, I am certainly the most well rested from a single sleep than I have been in a long while. Also embracing the company was a good idea, it makes the days go faster and just talking to people. Spending a "normal" day out and about did seem to fix my troublesome bathroom issues too.

Its just a matter of hours until the big news about my left legs lengthening rate. I actually have a good feeling though since my left leg is certainly seemingly feeling stretched and having similar sensations as my right.

[G-Man]

So far so good besides "minor problems" keep it up bud!

[programdude]

Fantastic news- My legs are lengthening beautifully and the discrepancy from before is negligible at this point. Beyond this, I have been given pool approval which I took full advantage of right after PT, with my friend from Hong Kong who showed me the ropes.

I've talked to my LL friends and they report similar sleeping issues. Hopefully this improves at least somewhat however- this is really my main complaint at the moment- but as bad as it is then, during the day it is like a distant memory. At this current rate I will have reached my goal by mid october or so, assuming I decide to lengthen the full amount.

Let this be a cautionary tale to muscular LL'ers to always press down HARD when using the magnet.

Today was packed with exercise- going everywhere on the walker really takes it out of you- plus the time spent in the pool. Heck I may actually sleep semi properly tonight due to exhaustion, which would be more than welcome!

[Plzen]

Good to hear that you are doing great.
Did you go shopping with your walker, how was that trip, was it exhausting?
If you don't sleep good at night, can you take naps during the day, or you don't want to do that?
In the pool, do you just walk or do you swim?

[programdude]

Lots of good questions. I think a long shopping trip on the walker would by physically impossible- I walked from my room to the elevator, took it from 3 to 1, walked to the lobby, out front where my lady friend had brought her vehicle and got inside. We drove to the store and I got on one of those ridiculous scooter things for the actual shopping. After getting back I felt bold and told her just to park and I'd walk through the parking lot instead of being dropped off in front. That proved exhausting and more than I should have bit off for my first day using the walker seriously.

I do nap sometimes when truly exhausted but these are equally unfulfilling, although anything to chip away at time I consider a good thing. Its not the actual hour of day that makes sleeping difficult, just that sleeping in general is rough.

In the pool I do both, usually with a noodle because you will find balance to be surprisingly difficult to achieve. Kicking is much harder than I thought it would be but great exercise.

I had easily my best sleep last night, of around 4-5 hours and after breakfast, came back for several more. So it seems like exercise is gonna be the name of the game for me, which had been my original plan anyhow.

One new annoyance is my butt(or lack of it at this point) is starting to get sore from anything, even just lying down in bed.

Overall things are again, looking better. Hopefully the days start melting away now that I'm sleeping more. I googled trying to find an outcall PT since my insurance covers it, but had no success. Something like that would be phenomenal in terms of keeping me loose before bed/in general and passing the hours, especially on days like today where I have no PT at the center.

[Plzen]

You might want to google, Home health nursing company. Usually, home health nursing and physical therapy are all the same company and provide variety of services.

[programdude]

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.

[The View]

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.

[programdude]

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.

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.

[programdude]

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.

[Plzen]

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.

[programdude]

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.

[TRS]

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.

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

[programdude]

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.

[KiloKAHN]

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.

[programdude]

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.

[programdude]

August 12- Having talked to others and given myself a good look in the mirror I don't think I'm going the full 8 cm on femurs at this point. At first I thought it was crazy to come here and do anything less than the  absolute maximum after spending all that cash but a few factors have influenced me.
A. Now that I am beginning to see my elongated femurs, I think the full distraction may look ridiculous.
B. I talked to a few LL'ers at the end of their journey, who also cut things short- noting that they felt satisfied with where they were at and that more would ruin their proportions. One even mentioned a LL'er who recently left and regrets going 8 cm so much that he contacted Paley in regards to shortening.
C. As the rod expands it becomes weaker. Even a light girl here who did around 6 cm had a mild bend. By stopping earlier I minimize these chances.
D. Especially with the loss of so much weight I do want to re-enter normal life asap and get back to being some semblance of my normal self.

Depending on how this all plays out though I might be interested in tibias to even things out since I am not going the full distance- Although more likely I think I will just enjoy my life at my new height.

[programdude]

Today the IT band pain is even more intense- affecting walking, smaller motions, and making PT incredibly painful. However my minds responded to this in a very interesting way. Where before this experience was basically a million annoyances bundled into one- now I have something distinct to fight, which has me strangely motivated. Now rather than "I want to get out of here" I feel "I want to conquer this IT band".

Strange, I know, but this real pain snapped my head back into the game.

[TRS]

Today the IT band pain is even more intense- affecting walking, smaller motions, and making PT incredibly painful. However my minds responded to this in a very interesting way. Where before this experience was basically a million annoyances bundled into one- now I have something distinct to fight, which has me strangely motivated. Now rather than "I want to get out of here" I feel "I want to conquer this IT band".

Strange, I know, but this real pain snapped my head back into the game.

Oh yes! I know exactly how the pain feels! For me it was a sharp pain when I tried lifting my left leg up and prevented me from performing several movements. It started around day 6-7. Give it a few days and it should disappear.

[programdude]

Really? Thats good news. It seriously snapped me back to earth.

[programdude]

August 13th-
Hard day but still focused and progressing. IT  band is giving me hell but I insisted that we still stretch it good. I've gotten good at sort of going to a different place as they seriously stretch my body. I've got zero complaints about PT since bursts of pain aren't a big deal and really should be the last of anyones worries who's considering pursuing this(since you will quit day one).

I've been icing my IT band regularly and it does help- and I urge others who develop this issue to do so even though making ice packs can be a pain when you are alone.

I am somewhat adapting to not being able to sleep properly. For example last night I slept literally not at all- it was a bunch of awful confused tossing and turning. However even though I was a zombie when it was breakfast time I ate, showered to get loose and passed out till right before PT. Again- This is a very up and down experience but you do eventually start to settle into it, getting used to hellish nights of poor sleep and functioning off that and getting into the rhythm of lengthening, napping, eating, PT.

I've talked to a lot of lengtheners here and they keep assuring me things get better. If thats the case things will absolutely become tolerable since even with this incredible pain I am toughening up. I also met a new LL'er today that isn't at the hotels(rich dad, paid for operation and is renting an apartment) who is about a month ahead of me. He, like mostly everyone else reports sleeping issues, but says it does get better as well. Being the newest lengthener can be discouraging in a way, but if what everyone says is true then its also certainly very encouraging.

I tried crutches today, took me a bit to adjust but I actually do like them- the walker is freaking exhausting and the grips hurt so I am pretty keen to upgrade. Plus they said historically those who get on crutches do better overall.

Lastly due to the immense pain I may begin using painkillers before PT, since they basically told me theres no sense in being a hero if it has a chance of interfering there and I'm being responsible.

[Taller]

Do you know your wingspan and sitting height? How does the length of your femurs currently compare to the length of your torso? Can you even notice the 2CM difference, proportionally?

[Overdozer]

using painkillers before PT

That's definitely a good idea, should make things easier. What kind of painkillers do they offer btw?

Also, how much force it takes to straighten your legs right after waking up?

[programdude]

I actually don't know my numbers, somewhat intentionally, since I don't want to get caught up on them, just what I like the most in terms of feel and look. It is hard to say if I can notice it yet or if it is weight loss/posture.

They offer oxycodone. I try and sleep with legs as straight as possible, but either way it takes a mild bit of effort to fully extend them when I get up to walk. Sleeping really badly again tonight.

[Overdozer]

They offer oxycodone.

Holy moly, that's like heroin in pills! Can you send me some? Haha jk. I thought they'd give you something less potent like tramadol or NSAIDs. I'd be careful with oxy, it has a good potential of developing addiction. Though it really is FUN!

[programdude]

I have been staying away from them- I was only glued to them the first few days after discharge where pain was absurd. Honestly right now taking them seems to do little to nothing in 5 mg tabs.

[Plzen]

They offer oxycodone. I try and sleep with legs as straight as possible, but either way it takes a mild bit of effort to fully extend them when I get up to walk. Sleeping really badly again tonight.
[/quote]

You have to make efforts fully extend your legs at the knee area or hip?
I agree, it is wise to take as few oxycodone as possible.
Are you having pain at the ITB release site? Can you tell if ITB release surgery has helped (loose)?

[programdude]

August 14th-
I really don't know if the release helped or not, all I know is it outright hurts, moreso than being tight(which is actually more of a good sign- tightness can mean bent nails and complications). Good news is working with my PT and independently icing it has helped make significant progress. Day 1 of the issue it would have taken a team of people to hold me down on my left side, and just yesterday it was still impossible to lie on that side and pressing down would make me jolt. Today my PT was able to massage into it well and stretch it. Certainly feels good to conquer issues- or at least make progress. So in 3 days 10/10 pain(with pressure) to 2/10 with pressure. One of the many reasons competent PT are ESSENTIAL for this process. They were able to identify the issue day 1, stretch me properly and turn things around/instruct me on how to turn things around in a matter of 48 hours.

As far as straightening, they can be straight fine- But they are anal about wanting them CONSTANTLY locked out. This is one of the big advantages to losing the wheelchair and using the walker/crutches.

Today I bought crutches and will be using those as much as possible. They are priced VERY fairly for the extreme quality and I look forward to getting used to them. They certainly feel more mobile and unlike the walker don't BUTCHER your palms. Seriously the walker gets old fast- waiting for the elevator every day using that is such a pain.

Just about halfway through the month and think my next x rays are in a week so I'm feeling pretty good. Gonna go to a going away party downstairs for two of the LL'ers who are leaving, and hopefully tire myself out. I really don't want a repeat of last nights total lack of sleep.

[Plzen]

That is great that you get to use crutches soon. Hopefully you can go to more places with crutches.
I wonder what is Dr. Paley's reasoning to let you use crutches now instead of right after surgery. Is your bone more consolidated now, compared to right after surgery? Can the nail support more than 75lb now? I know you have lost some weight. But I am talking in general, not in your specific case.

[programdude]

August 15th-
In my case its just that I lost 20 pounds that lets me use the crutches now. In theory once you were with it you could pretty much immediately use them.

Got some ZZZquil which a LL'er who left today swore by, which will hopefully help save me at night. Speaking of that LL'er, his nail stopped working around 7 CM, which fortunately for him was his goal.