Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley

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Quote from: mediocre on June 22, 2014, 06:08:51 PMGreat update. Nice hearing your recovery is going well.

Just a hypothetical question and I know it's probably premature: If given the opportunity (time/finances/etc) to lengthen your tibia after you've completed the femur, will you do it? (knowing that you had a scary fat embolism)

I've been asked this question a lot since being here, and talked it over with my lengthener friends a lot.  I've come to the conclusion that it really just depends on how satisfied I am after my femur lengthening.  When I'm finally standing and functioning normally at 5' 9", then I'll be able to answer this question best.  But as I've told a few people, hitting almost 6' is my dream... 

Quote from: Dameon on June 22, 2014, 08:20:35 PMSorry to read about your rough start, glad things are getting better for you.  All the best for your recovery ahead. 

It's great hearing from you.

Quote from: Grow on June 26, 2014, 04:17:30 AMGlad to hear that you are doing well. I'd love to meet you and the other lengtheners but I am Muslim, wear a hijab and would find it difficult to organize a meeting. Maybe we can chat here?? I'm here to actually talk to the doctor about my child. But I would love to get my surgery scheduled too. The doctor recommended physical therapy in the pool for my child. Is this necessary while lengthening? Do you do it?

I was also hoping to go back home and do the lengthening away from here and come back and see the doctor every 2 weeks. Has anyone done this? Thank you and good luck!

I don't get it.  Why would being Muslim make it difficult to meet up?

But yes, ask away.  PT in the pool is great.  If your child can do it, and the doctor recommends it, then yes, you definitely want your child in the pool.

I'll answer your lengthening at home question in my update.


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My doctor scheduled another X-ray for last Monday, here it is:



I was at about 2.4 cm in this image.  Next x-ray is scheduled for July 9th.  Paley said my x-ray looked great, which made me happy.

Updates with me: I got sick with a stomach virus for 3 days and had diarrhea non-stop those 3 days.  I missed out on PT, could not lengthen/stretch 1 day, wasn't eating, and was admitted into the ER for IV saline.  These type of complications can happen to anyone and really set back your recovery.  Do yourself a favor during lengthening and be very wary not to get sick (stay hygienic!)

In regards to pain, I haven't taken a single painkiller for 5 days now!    It's bizarre, in my last update I was complaining about the chronic pain and just a week later, I'm in my "painless" lengthening stage.  I don't doubt the pain will come back as my legs are lengthened further.  Also, I definitely still have pain and very stiff legs at times, but the pain is a lot less unbearable (sometimes unnoticeable).

But the biggest update for me is that... I'm lengthening at home right now!!! 
 
The main reason behind my decision, is that I was lonely.  I underestimated completely how much the loneliness gets to you.  A few months ago in college I lived by myself, and thought "hey, I'm doing fine on my own!  This means I can do LL and not feel loneliness, right?"  WRONG!  In college, I saw friends everyday, I had clubs and bands that I was in, I went to parties, and most of all, I was a mobile human being!  While you're lengthening, you will make lots of friends with fellow lengtheners.  But for me at least, this didn't offset the loneliness I felt when coming back into an empty hotel room with nothing to do besides watch TV!

So I made the decision that I had to come home.  Having family around me is such a blessing.  My mom has been cooking me food, buying me fruits, keeping my diet healthy, and my dad is making sure I have something whenever I need it.  My home also has a pool, stationary bike, and I'm starting PT here this Monday.  I'm also walking around on crutches now, and have been scaling up and down the stairs easily.  I'll gladly answer anyone's 'lengthening at home' questions they have, and what I discover works/doesn't work.

I don't think anyone goes home when lengthening with Paley.  Everyone I talked to, who had been in the Paley LL scene for years, said they didn't know of anyone else who did it.  The PT I talked to at the Paley clinic said he worked there for 4 years and never saw someone lengthen at home.  It makes sense though, when you lengthen with Paley, you get almost everything.  The living, the PT, the care, the food, transportation.  But it wasn't enough for me when it came to have a support base, and lengthening by yourself is incredibly difficult.  I know many people can and have done it, but I don't recommend it.

As far as costs, I'm not saving anything by doing this.  It actually costs more, but this is because I'm a unique situation (Paley covered all the costs from the complications I had while in the hospital).  If you are planning on lengthening at home, make sure to let him know and see what you would save beforehand.  Preferably do this before you pay anything.

I also don't recommend anyone to leave before a month.  I stayed a full month before finally going home, and my flight back was incredibly easy.  That's because I'm stronger, and have better ROM and flexibility.  I sat in a regular plane seat without any additional leg room.  If you plan on traveling right after your surgery, I think you're going to have a very, very uncomfortable flight and general travel.  Airport staff was fantastic for handicap travel, and so accommodating.  Just make sure when reserving your flight that you call and ask for Curbside Assistance with your airline.

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Hey glad you are doing so good! Lengthening at home sounds way better, just don't know if it is as safe. What do you mean that the food is taken care of with Paley? Do they have someone bring you food everyday when you are in the hotel or something?

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Great update and it sounds like you're doing really well, Big D.  Reading about how mobile you are (especially with STAIRS - the bane of the Ilizarov patient's existence) makes me wish I could've afforded Paley.

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Quote from: shortkid on June 28, 2014, 07:45:15 PMHey glad you are doing so good! Lengthening at home sounds way better, just don't know if it is as safe. What do you mean that the food is taken care of with Paley? Do they have someone bring you food everyday when you are in the hotel or something?

I agree, it is not as safe.  Stairs, taking a shower, you have to be much more careful with your steps and where you place your crutch.  Also, I'm getting used to the crutches but if you're not careful you can easily lose your balance (since you're on two bad legs, not just one).  But the tradeoff is a no-brainer for me, since right now I'm living in sanctuary.

To clarify about the food, I meant the Homewood Suites provides breakfast and dinner buffets.  They actually do bring you the food (if you call the front desk and ask for it).  But it's nice to tip the person bringing you the food.

Quote from: Medium Drink Of Water on June 28, 2014, 07:51:22 PMGreat update and it sounds like you're doing really well, Big D.  Reading about how mobile you are (especially with STAIRS - the bane of the Ilizarov patient's existence) makes me wish I could've afforded Paley.

My advice to anyone who wants the amount of mobility and recovery I've had so far is 2 things: be well below the weight-bearing limit of 75 lbs per leg and also be very top-heavy (very strong upper body).  I'm only 125 lbs, my arms and chest are very strong and muscular but my legs are twigs, so I'm very strong and able to lift my body to get around.  I also have a lot less risk of damaging my nails, so it's really been a huge plus.

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Quote from: BilateralDamage on June 28, 2014, 08:18:01 PMI agree, it is not as safe.  Stairs, taking a shower, you have to be much more careful with your steps and where you place your crutch.  Also, I'm getting used to the crutches but if you're not careful you can easily lose your balance (since you're on two bad legs, not just one).  But the tradeoff is a no-brainer for me, since right now I'm living in sanctuary.

To clarify about the food, I meant the Homewood Suites provides breakfast and dinner buffets.  They actually do bring you the food (if you call the front desk and ask for it).  But it's nice to tip the person bringing you the food.

My advice to anyone who wants the amount of mobility and recovery I've had so far is 2 things: be well below the weight-bearing limit of 75 lbs per leg and also be very top-heavy (very strong upper body).  I'm only 125 lbs, my arms and chest are very strong and muscular but my legs are twigs, so I'm very strong and able to lift my body to get around.  I also have a lot less risk of damaging my nails, so it's really been a huge plus.

Are the buffets complimentary? Also how much does it cost to stay there a night? Thank you!

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Quote from: shortkid on June 28, 2014, 08:21:08 PMAre the buffets complimentary? Also how much does it cost to stay there a night? Thank you!

At the Homewood Suites, breakfast and dinner is complimentary.  Breakfast everyday of the week, dinner from Monday - Thursday.  With Paley, it costs $63 a night before taxes.


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I wanted to add this: for going up and down the stairs, if you feel nervous with using the crutches (which I still do sometimes), a good way of getting up and down is to just sit down on the steps and lift yourself up each step.  If you're going upstairs, lower yourself down as regularly with your walker, fold up your walker, and then lift your butt up each step.  If you're by yourself, pull the walker with you after you move up each step.  If you're going down stairs, you can do the same, but to lower yourself down at the top, it requires at least 2 different banisters or leverages to hold onto when going down.  If you have a banister, this makes it much easier to lower yourself and raise yourself up.

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Hi BD!
Great to hear that you are doing so well and at home! Being with family is so comforting.That's something I would like to do as well. I have kids and would not be able to get them out of school for the entire lengthening duration. Dr. Paley told me that PT is one of the most important aspects of this process. How are you managing this at home? Is you therapist familiar with LL and did you have to tell the therapist about your leg lengthening procedure? Keep us updated...Good luck!

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So are you not in FL at all anymore? If you are let me know, I'd be interesting in meeting since I'll probably be crazy after a couple weeks of isolation.

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Quote from: Grow on June 29, 2014, 12:32:40 AMHi BD!
Great to hear that you are doing so well and at home! Being with family is so comforting.That's something I would like to do as well. I have kids and would not be able to get them out of school for the entire lengthening duration. Dr. Paley told me that PT is one of the most important aspects of this process. How are you managing this at home? Is you therapist familiar with LL and did you have to tell the therapist about your leg lengthening procedure? Keep us updated...Good luck!

Just so I can understand, is your child doing this surgery for a deformity, and you're doing it for cosmetic?  If so, I really suggest against both of you getting the surgery at the same time, since it will be almost impossible for you to care for them.

PT is 100% the most important aspect to LL.  In the beginning, I didn't feel too much tightness, but now at 4 cm I feel the tightness more than ever.  My legs are becoming more difficult to get full extension, I feel my quad cramping while standing, light nerve pain in my right tibia, and I have a tight hip (fascia lata) that makes it difficult to close my legs when standing and is also causing my knees to bend slightly inwards.  I'll elaborate on all these problems and what's happened with PT in my update

Quote from: programdude on July 03, 2014, 11:33:08 PMSo are you not in FL at all anymore? If you are let me know, I'd be interesting in meeting since I'll probably be crazy after a couple weeks of isolation.

Don't worry, you'll have lengthener friends, but this is important- try to leave your room as much as you can!  Even when you're on a laptop, just take it out into the dining area where it's sunny and across from the pool.  There will be people around and it will just make you feel better.  My dark lonely room was probably the source of my depressed feelings while in Florida...


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Here's my x-ray from this Monday:



3.7 cm in the image.  Dr. Paley saw it, checked my flexibility, and gave me the the thumbs up.    Looks like lengthening at home hasn't given me any complications (but I won't get ahead of myself yet, I'm only at 4 cm now.. halfway there!)

I'm lengthening at home which means I need to fly back to Florida at least every 2 weeks to see Dr. Paley for our follow-up and have x-rays taken.  I did this roundtrip to Florida in one day. 

This time, flying was much more uncomfortable for me.  My flight each way was only 2 hours long and 30 minutes long, but my first flight was delayed on the tarmac for 2 hours, so I ended up spending the first flight sitting down for almost 5 hours.  During the flight, I started getting an annoying nerve pain in my right tibia, which doesn't hurt so much.  It feels more like a muscle soreness/pinching sensation that you need to stretch out.  Mid-flight, I took out my blanket that I use to stretch and did my tibia nerve stretches.  It relieved some pain, but I started experiencing a real worse pain, which is my hips.

From day 1 since surgery, I've had swollen hips which are very sensitive.  I can't sleep on my side because my hips experience too much pain from this.  I was told (by a PA) it would only last a week but 42 days later, I still have very bad hip pain when sitting down. At my follow-up, I talked to Paley about it and he pointed at my x-rays and explained, "you're very skinny.  Those screws are sticking out and pushing into your muscle, which is causing the swelling and pain.  A lot of people complain about this problem, but it will eventually go away."  The explanation sufficed for me, but it leads to another problem I'm having.

I have trouble closing my legs while standing and it almost feels like my hips tighten up and prevent me from closing them.  I also noticed my left foot was slightly turning inwards.  I mentioned this to Dr. Paley and he immediately said, "tight fascia lata.  It's the tendon located right in your hip that will cause this when it gets tight.  The solution for this is to do the OBER stretch."  I groaned.  The Ober stretch is the bane of my existence.  The reason why?  The Ober stretch requires you to lie on your side.  This induces HUGE amounts of pain because of the screws popping into my muscle and having the Physical therapist force more pressure down on this area while stretching me.  I almost can't do this stretch because of how painful it is, and it's probably why this area has been tightening up for me.  I explained why I'm having trouble doing it and Paley suggested soft pads, which I've tried, but haven't done much for me.  So mostly I have to suck it up, take some more pain meds before PT, and do the Ober stretches at least 3x everyday.

Paley was satisfied with my flexibility when he saw me, but I'm not happy with it, and there's a reason why- my PT has been lacking severely. 

When I moved back home from Florida, I already had plans to do PT with a place that obviously didn't have any experience with LL, but was good with fractures and other injuries.  It was also very cheap for 1 hour and 15-30 minutes, only $40 out of pocket.  What I didn't realize was that the PTs were too incompetent to use the videos my PTs from Paley's clinic provided me, and wanted to do the stretches the way they were familiar with.  They also didn't do 1-on-1 PT (which you NEED) and instead would give me the stretches to do by myself, and leave me while I did them.  Why the hell would I go to a place and pay them for   I can do at home!?  I only went to this place twice and never returned.

So after ditching this place, I continued to do PT on my own, but only self-stretches, and sometimes a family member would help me.  Stretching yourself, while I was taught on all the stretches to do, is difficult and not nearly as productive as having someone else stretch you.  The reason?  You don't want to inflict pain on yourself, so you go easy while stretching.  It's also difficult in some positions to push harder when you're in so much pain.  I spent the last week looking for someone, and finally found a PT for 1-on-1.  They understand that they need to do everything I say, and what my PTs in Florida say.  The biggest stretches we're focusing on are Ober, hamstring, quad, and the stretch for the sciatic nerve running down my tibia (which is pretty easy to do by myself as well).

Besides all the complaining I've done in this post, I have to say I'm happier than I've ever been during my lengthening. Being at home with my family has made LL so much better.  Not a day goes by where I'm not actively moving about and doing something, and talking to someone and keeping busy.  The days have passed by much quicker this way.  I'm a musician, and have already joined a new band to practice and gig with.  I'm swimming in my pool almost every day, playing with my pets in our yard, and I've already seen a few friends (I just told them I had a sporting accident and broke my leg, no one questioned it).  Also none of them noticed my height because I'm slightly hunched on crutches and also they're much taller than me, so they wouldn't even notice if I grew a few inches.

I'm on crutches now and they are the fastest and best way of getting about for me.  It's much quicker than using a walker.  But be careful- if you're on a slippery surface your crutch WILL slip.  Almost fell down after using my crutches on a wet floor.

Halfway there, I can almost see the finish line!  I'm pleased with my 4 cm so far.. and have already felt average while standing in a lot of places.  But I'm a bit greedy, and I want my 8 cm.    I'll probably even try my 3 inch lifts after consolidation just to experience what it's like at 6'.. 

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You go for it man! Glad you are feeling better about everything. Pity about the PT though, that is certainly one perk of staying in FL.