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[Taller]

Congratulations, BD! May the force be with you, and may you have the very best of luck!

[Sweatpants]

Hey BD,

Hope everything is fine and the surgery was piece of cake for you. You are making your dream come true, which is wonderful!!
Wish you best of luck and be strong 

[Medium Drink Of Water]

Looking forward to hearing how you're doing with your broken legs! 

[shortkid]

Hi I am considering going to Dr. Paley. How long do they want you to stay there after your operation? I am from Cali so I would have to fly back home. Also, how expensive is room and board? I believe you stay at a hotel or something after right? Also, they have physiotherapists specifically for limb lengthening right? thank you for answering my questions! Good luck

[Cooper]

Good Luck BD. Following your foot steps in a few days. At the moment driving towards WPB. Just passed North Carolina...see you soon.

[TRS]

Hey Big D! Hope you're doing well. Keep us updated.

[Cooper]

Hey BD any update? Hope things are going well. God bless you bro!

[BilateralDamage]

Hey everyone,

Sorry for not updating for the past week.  I had a very troubling LL journey so far, and it's been difficult for me to find the motivation to write an update.  Let me jump straight into it.

I had a successful surgery last Thursday, May 29th.  I remember the epidural feeling abnormally painful when being inserted, and I feel convinced that my herniated discs and this could have contributed to the massive problems I ended up having (but none of the doctors will confirm this of course).

On day 2, my caregiver was with me when she noticed my O2 (oxygen) stats started dropping.  First they went down to 91.  Then, they went down to 74.  This happened in a matter of minutes and floor staff quickly rushed into the room and threw a large oxygen mask over my face (50% concentration).  I was rushed down stairs to the CT scan to view my lungs and see why I wasn't breathing.

In the CT scan room, they had to transfer me to a different bed.  The pain, only the day after surgery and my legs were incredibly sore and sensitive, of being transferred to the bed was excruciating.  I screamed and cried out as I was lifted with my legs in the air and dropped onto the other bed.  I was then given an IV into my right arm that would feed Iodine into my system and I was pushed into CT scanner.  I was also given an injection of Benadryll because I have slight sheLL Forumish allergies and apparently their Iodine was sourced by sheLL Forumish.

In the CT scanner, I felt pressure build up and my IV exploded in my arm, blood splattering all over the place.  I screamed out again, and told them what happened.  They said not to worry and finished up the scan.  They pulled me out, muttering that the key was not properly turned when inserting my IV, so human error caused my IV to explode my blood all over my arm, sheets, robe, and bruised my right underarm beyond recognition.

I was transported then to a recovery room where I was heavily monitored by nurses and doctors for 5 hours straight.  The room was too bright, too loud and I couldn't manage any sleep.  I found out here that I had pneumonia, and my right lung was heavily clouded in the CT scan.

At this point, I was grateful to even be alive and I never freaked out.  It didn't once occur to me to tell my family.  I was given treatment plans by doctors and possible causes of my pneumonia.  They immediately ruled out fat embolism and said it was likely aspirations (Dr. Paley emailed me himself to tell me how worried he was and all the options were discussed, but fat embolism was ruled out with their tests).  Finally, I was moved to the ICU lower level.  Keep in mind, this is not the original floor I was placed on.  The floor and rooms for Paley patients, the one I paid for, is a beautifully quiet floor, very large rooms, private, and trained nurses in Orthopedic patients.  I was moved to the ICU, an extremely loud, busy, ugly floor, with tiny rooms and nurses not at all familiar with Paley patients.  There were nurses there for decades who told me I was their first Paley patient.

My stay on this floor was for a long time.  Too many bad things happened for me to care to recount.  One good thing that stands out to me was when Servando told me I would have to pay for my extended stay in the hospital.  This worried me of course, because he didn't know how much it would be and I had no idea how long I would have to stay in this s**t-hole.  I emailed Dr. Paley and expressed that I was worried about the costs.  Dr. Paley immediately emailed me back and told me not to worry about the costs, he would take care of them, and all he wanted was for me to recover.  He gave me a private meeting in my room a few days later, also confirming this while checking up on me.  Then the news was confirmed- I had gotten a fatty emboli in my lungs.  For those unaware, this is when your fat being reamed out of your femoral canals goes into your bloodstream which then travels up to your lungs.

Dr. Paley in this private meeting also confirms to me that I'm only his 2nd patient ever to have a severe case of fat embolism in the past 3 years, and that I'm the worst case he's ever had of it.  What an honor, huh?  We talk for a few more minutes and he leaves.  There's not much left to say in this meeting because my condition is improving and he's already done his job, the rest was up to me to heal.

I've been on breathing oxygen tubes until today, and I'm finally breathing on my own now.  I just finished my IV antibiotics for my lungs today, and will now switch to oral antibiotics.  I still am doing a breathing treatment, where I inhale medicated smoke for up to 7 minutes, about 5-7 times a day.  To do these treatments, I'm woken up for them and have to breathe in and out of the device.  This means I've never had a consistent nightly sleep in my past week here. 

My lengthening started day 3 and I'm currently at 5 mm now.  My physical therapy didn't start until day 5 because of my troubled breathing.  I'm behind in PT as a result, but I'm getting better.  Today I finally managed to use my walker all the way to the toilet and back to my bed, on day 8.  This may sound like nothing, but I didn't leave my bed until 4 days after surgery and this is a huge success for me personally.  (On day 7, taking my first (extremely large) s**t in a bedpan was one of the worst feelings of my life.. getting cleaned up afterwards by another person wasn't pleasant either). 

I also couldn't eat anything until day 5.  I would become nauseous and nothing was appetizing.  I acquired a ravenous appetite by day 6 and had my food portions doubled by talking to the dietitian.  She ordered larger meals for me plus 3x a day of Boost, a delicious chocolate drink, 360 calories each and tons of protein.  She wants me eating a lot more protein plus getting a lot of leafy greens for my recovery.

Things are on the upswing now and looking better.  I can't say I'm not bitter about the experience I've had, but it's in the past and it could have been worse.  I'm by no means bitter about the treatment and reception I've received from the hospital.  I had extremely watchful and good care on the ICU, and the nurses there were lovely.  I've built relationships with some of them that I intend on keeping outside of the hospital.  My caregiver was excellent and visited me on days she wasn't working for me (just to check on my health).  She bought food for me, trying to spur my appetite.  She cared for me like a mother would and affectionately, the mother I needed but didn't otherwise have with me.  The treatment was on point and my immune system was strong which is why I healed much quicker than people with pneumonia usually do.

I have no idea how I managed to keep the pneumonia and my very ill state away from my family (who have been talking to me daily) and from my work partners.   But I did, and it looks like tomorrow I will be discharged.  I'm worried about the discharge because I cannot transfer as well I would have liked to, but getting out of this hospital is my #1 priority.  I had the sunlight touch my face for the first time in 7 days today.  It was a beautiful feeling.

If you were to takeaway one thing from my post, it should be this: bad things can always go wrong with this surgery.  With Western doctors, the most experienced doctors, with excellent physical shape, great health, being young, paying lots of money.  It can always go wrong.  Prepare yourself for this, and always have someone with you in the beginning of your LL.


--


I will resume daily updates when I return to the Homewood Suites.  Signing out.

[Blackhawk]

Sounds like you had a pretty scary week.

Good to hear that you will be discharged soon.  Good luck BD!!

[mediocre]

Pretty close call. Glad you're out of it.

Imagine if this happened to a lower rate hospital outside U.S.

Fat embolism is pretty rare. I wonder if you have any suspicion what are the risks for its development. Did they give you any anticoagulant (as infusion)? Did they repeat your CT scan? Are they gonna repeat it?

I could only imagine how mixed feelings you had when you were very sick and still didn't tell anything about it to your folks.

Hopefully, all positive recovery from hereon.

[Sweatpants]

Hey BD,

I am really sorry to hear about what happened and what you've been through. I hope it will be the last complication on your journey and the rest with be smooth like butter. Be strong and stay positive and keep us all updated...

[KiloKAHN]

Wow, what a start to your lengthening. The whole incident highlights the very real risks of CLL. I'm glad you had a responsible team looking after you and that Dr Paley was compassionate enough to cover your hospital costs when you had to be moved. Here's hoping that the rest of your lengthening is much more free of complications from this point.

[Medium Drink Of Water]

Scary beginning to your LL journey and an important reminder to potential LLers that things can and do go wrong, even when you pay a lot of money and go to a world-renown surgeon like Paley.

[mediocre]

Hope everything's alright bro.

[Arche]

Hey Big D,

It seems like everything is stabilized from your note. It's a good thing that you're in great hands with Dr. Paley, he's probably the best we got. Good luck, and keep us updated with your condition. I'm sure you're distracting seamlessly already!

[BilateralDamage]

Thank you everyone for the well wishes!

Day 11

I arrived back at the hotel 2 days ago, and I'm making much better progress now.  I am walking as much on the walker as needed, going to the bathroom, grabbing drinks, heating up leftovers in my microwave.  Something I love is noticing that I could do something today that I couldn't do the day before.  It could be tiny but it will really help you see progress as time passes.  I've lengthened 7 mm so far, and my only concern right now is how behind in PT I am.  I should have started PT at Paley's Institute last Monday but instead I'm starting tomorrow (due to the complications I had).

My caretaker is with me for about 4 hours a day, and she's extremely helpful to have around.  From cooking food, passing me things when I'm in my bed, carrying objects (which is pretty much impossible when using a walker), arranging my things when I don't feel like standing.  Doing this surgery is a no without having someone with you for the first 11 days at least from my experience.  I'm sure I'll need someone until day 30.

Getting off and on the bed is a task, which I'll try my best to explain.  My legs are practically useless, and I cannot lift them in the air.  So to get off the bed, I have to slowly edge my feet to the side of the bed, where I'll then push my legs off and slowly lower them until my feet make contact with the floor.  I have poor ROM, and cannot bend my legs as much as I'd like, so I have to keep my legs bent about 70 degrees when hanging them off the bed.  Then I'll push off from the bed, my left hand on the bed and right hand on the walker until I'm standing.  Standing is easy for me because of my arm strength and light weight (I'm 10 lbs. under PRECICE weight bearing limitations).  To sit back down on the bed, from my walker, I slowly lower my rear onto the bed, left hand on the bed and right hand on the walker again.  Sitting down is difficult because I have to be mindful that my knees are at least 70 degrees with the floor. Here's an image that best shows knee ROM:



When my rear is on the bed, I straighten my legs out in front of me and use my arms to pull my entire body on the bed, and keep readjusting position with my arms.  My legs are useless, so there's no lifting them to adjust their position.  I have to "crawl" my feet to adjust the position of my legs.

I do have pain.  I have stretching pain when my legs are being lengthened, probably a 3 or 4, and I'm taking my pain meds every 4 hours to keep it in check.  I'm on oxycodone 10 mg.  Last night, I had excruciating pain from trying to sleep on my sides (wanted to see if it could be done!)  Had to take a pain killer after that.  I also noticed my hips are extremely swollen and protrusive, like I grew large hips from this surgery.  My PT and doctor's appt is tomorrow, so I'll try finding out if there's anything abnormal with this. 

As far as other life things, I've been working since the day after surgery from my laptop.  Work is good, but I did have to make a few phone calls a few days after surgery, when I was still on breathing tubes and my voice was shot, which was very difficult (especially while I was trying to hide this from my business partners.  My care giver monitored the EKGs hooked up to me during my calls to make sure they didn't start beeping).  And also, my family knows!!  A few days after I had pneumonia, I called my younger sister and let her know what was going on with me.  I knew she would be the most understanding in my family and she was very supportive, calling me everyday to check up on me.  Last night, my sister and I decided to tell my parents first (after my family was begging for me to fly out for a trip).  My mom started crying and I calmed her down, letting her know that I was OK my entire stay here (of course I didn't tell her about the pneumonia).  My parents are actually very supportive now and my dad is asking when he can do his surgery (he's 65, ha!)  My mother and sister are coming out this Thursday and are already well informed on what to expect (my walker, lack of mobility) so there's no surprises there.  I'm very happy how it went over, but I still have 2 more siblings to tell that won't take this news nearly as well.  Oh well, I'm satisfied with what I've got.

See ya after PT tomorrow!

[YellowSpike]

Big D, so sorry to hear about your scarey experience. I am glad that you seem to be doing much better!

Seeing what you went through with the cream of the crop (Dr. Paley) and not being phased much makes me feel like I'm finally 100% ready to do this. I only hope I get off Dr. Rozbruch's waitlist and do this in early July instead of early August!!

Best of luck, I'll be following your story as I'll be doing internal femurs too!

[Cooper]

Hey BigD,
Nice to finally see you. It was last week but have not mentioned here. You are doing pretty well now. Bit difficulty at the beginning but all that is over. I am sure pal you will do just fine. Keep up the good work, PT at the center and hotel, medicine and positive attitude. You will add 3 inches in 3 months time. You are growing as we speak and so am I.

Good to meet you bro. I am sure you it will get better here on.


Cooper

[mediocre]

Great update. I find your posts very educative and I'm sure it would continue during your recovery/lengthening/consolidation phase.

All the best.

[BilateralDamage]

Big D, so sorry to hear about your scarey experience. I am glad that you seem to be doing much better!

Seeing what you went through with the cream of the crop (Dr. Paley) and not being phased much makes me feel like I'm finally 100% ready to do this. I only hope I get off Dr. Rozbruch's waitlist and do this in early July instead of early August!!

Best of luck, I'll be following your story as I'll be doing internal femurs too!

Thank you YellowSpike!  You will fare just fine, as long as you have the time and support base, I totally advocate for you to do this surgery.

Hey BigD,
Nice to finally see you. It was last week but have not mentioned here. You are doing pretty well now. Bit difficulty at the beginning but all that is over. I am sure pal you will do just fine. Keep up the good work, PT at the center and hotel, medicine and positive attitude. You will add 3 inches in 3 months time. You are growing as we speak and so am I.

Good to meet you bro. I am sure you it will get better here on.


Cooper

Great meeting you too Cooper.  I can't wait for all the exciting road trips we'll have this summer! 

Great update. I find your posts very educative and I'm sure it would continue during your recovery/lengthening/consolidation phase.

All the best.

Cheers!  I like to update when I have something to say that could be useful to others.

--

Day 14

My lengthening journey is very stable now.  I reached 1 cm today and I should be 1/8th to my goal.  Next Monday, I have my followup with a PA to get x-rays done and see if I'm lengthening properly and if I need to speed up my lengthening.  I have a feeling they'll ask me to speed up to 5 lengthening sessions a day (1.25 mm/day) due to risk of pre-consolidation but we'll see.

My pain is about where it was in my last update (3-4) and I'm keeping it in check by taking oxycodone every 4 hours.  I do however now wake up from pain.  Last night, I woke up around 5 AM with about level 6 pain and I had to stand up and walk around to take my mind off the pain.  I couldn't take my pain killer unfortunately because I needed to take my pain killer 30-45 minutes before my PT session (which was at 8 AM).  If I would have taken it at 5 AM, then I would have had to wait until 9 AM to be able to take my second oxy, which would have been too late for PT.  The 4-hour rule probably isn't this strict, but I'm going to be on pain killers for a long time so I want to treat my liver as well as I can.
I believe this pain came a lot from the lengthening and lack of stretching before sleeping.  I do most of my stretching during the day because that is when my nurse is around, and you cannot do a lot of the important stretches by yourself.  For this reason, I'll probably ask my nurse to come for 1 short hour during the night before bedtime.  I also emailed Dr. Paley to see if I could get any medications for sleeping (like tramadol, which a lot of lengtheners use).  He hasn't responded yet so I'll update later with what he advises.

Stretching is the end all be all for LL.  I don't know how people could get through LL without a strict routine of stretching everyday.  The pain is unbearable if you don't stretch, your legs become stiff and difficult to move.  I love going to PT everyday, even though in some stretches I'm in unbearable pain.  I'm grateful that the PTs know what they're doing, and know how to avoid giving me pain when possible.  For example, during the quads stretch when my left leg is lifted in the air and my right knee is bent and pushed down, I get bad pain around my right knee.  This is burning pain right due to my ITB release, and located on the same area, and the PT knew to relieve that pain, that she had to pinch that site.  So while pinching the site, she managed to relieve that pain and still give me a good quads stretch.

PT for 1 hour a day at Paley's clinic is great, but it's not enough.  All of our PTs require us to do all our stretches at least 2 times a day on top of what we do at the clinic.  I currently stretch with my nurse after PT and then stretch by myself at night.  I don't recommend doing stretches without someone else because a lot of the important stretches require someone else present and also we don't like to inflict pain on ourselves, so we go easy on ourselves while stretching.  For this reason, I'm probably going to get another PT through my insurance and try to milk as many sessions as I can.  Stretching is so important, this cannot be stressed enough.  Also, my physical therapist allowed my nurse to video record her doing all the stretches on me, this way I can show my new physical therapist when I eventually hire them.  I have all the videos backed up and ready to be shown.  I'm also going to record any new stretches I come across.  I'll eventually upload these to my YT channel for you guys to look at, once I'm not lazy enough to edit and blur my face out of them.  Disclaimer: lots of crying children in the background of these vids (and maybe some whimpering from me.  )

I've encountered a new pain in my knee, which doesn't feel related to muscle stretching pain.  This one feels like nerve stretching pain, which I'm worried about.  It's a sharp burn that happens for a few seconds at random.  It's not enough to bother me, but it does bring concern.  Another lengthener I've been speaking with (and his mother who is a wonderful woman) had nerve decompression surgery done on his knees after having extremely bad nerve pain in his knees.  This is a scary thought, going back in for additional surgery.  It has set him back a lot, and it sounds like he's in more pain than usual, but he's still pushing through with his mother, who is also a PT (lucky him!)  She has offered to give me PT with her son, to motivate him, but I haven't taken her up on her offer yet.

My duck-ass is visible, and my butt is entirely gone.  These 2 I'm not very worried about because I'll eventually lose the duck-ass and regain my muscles, and they're only temporary faults.

In other news, my days have gotten so much better overall.  Yesterday, I was finally given the OK to take a shower (actually, the doctor said "Please BD, for everyone's sake, take a shower!"  ).  I took a sitting shower for the first time and it went well, and I took another today.  It's quite easy, you just have to lower yourself from the walker onto the seat, leave your walker in the shower (make sure to hang a towel from the walker as well) and once you're done washing yourself with the detachable shower head, you dry yourself off with the towel and raise yourself back onto the walker.  On top of finally getting to wash myself, I can finally ride in cars!  This is monumental for me because now I'm not limited to where I can go.   I went and got a haircut today at a barbershop named fittingly for me right now, called "Shorty's" .  To get into a car, I used my walker to walk out to the car, open the passenger door, push the seat all the way back, lower my rear into the seat, lift my left leg into the car (sometimes using my hands to assist my leg if it's too difficult to raise it that high), and then lifting my right leg into the car.  My nurse then folds up the walker and puts it in the back.  The guy who works the front desk, his name is Josh (I love him btw, he's such a fun guy to talk to.  He's also a CNA if you ever need a nurse and are staying at this hotel) saw me walking out to the car and made the most surprised facial expression and said "you really can walk that good right now!?"  This boosted my confidence because Josh has seen a lot of people on walkers!

Also, my mother and my sister are coming out to see me tomorrow and stay until Sunday.  I'm so excited to see them.  They have been the most supportive of me so far, and I'm looking forward to us going out and really enjoying Florida.  I also managed to cancel all the business trips I had this summer by claiming a medical injury and no one batted an eye.  Set sails for smooth lengthening!  I am actually considering potentially lengthening at home.  This would reduce costs significantly and might make my life easier with having someone around (and not having to hire a nurse to do everything).  I haven't decided yet but I know my family won't be against it, and would be glad to have me home.  My only concern is the proximity to Paley if anything goes wrong.  So far I've been able to stroll into his clinic and talk to a PA whenever I had a question about something.  But then again, Paley is highly responsive to emails, and I can always fly out if anything is amiss.  It's an idea, but I probably won't make that decision until I spend at least another week here.

Til next time!

[KiloKAHN]

Awesome news,  BD. I was never a fan of stretching before but I see this is why they tell yoi to stretch a lot before surgery. Do you know if the stretches they have you do are the same ones that those in extrrnals would do? Or are there some stretches you can do that would not be possible with externals?

Nice thay you get to see your family. It would probably be good for your mood to be at home. But it would likely be safer for you not to go back until you've stopped lengthenng and are starting to consolidate.

[Grow]

Hi BD! How are you doing these days? I have been following your journey from the start since I'm keen to do this surgery w/ Paley. Currently I'm in WPB to find out more. How the initial rough patch is now behind you. I wish you well.

[BilateralDamage]

Do you know if the stretches they have you do are the same ones that those in extrrnals would do? Or are there some stretches you can do that would not be possible with externals?

I'm not too sure about that, but my guess would be yes.  If I had external frames on my thighs though, it would make all the stretches much more difficult and awkward, but still do-able.

Hi BD! How are you doing these days? I have been following your journey from the start since I'm keen to do this surgery w/ Paley. Currently I'm in WPB to find out more. How the initial rough patch is now behind you. I wish you well.

Incoming update.   Btw, if you want to meet me or any of the other lengtheners, just shoot me a PM and come over to the Homewood Suites!


--

Day 22

My recovery is coming along great.  I use my walker to get around everywhere, my PT is impressed with my flexibility and ROM is about 135 degrees, and most of all I'm lengthening properly and my callus is forming strongly.  I had my follow-up this past Monday and after looking at my x-ray, Dr. Paley was worried about my callus forming too quickly.  He did not advise me to speed up my lengthening, but he prescribed me to take another x-ray and follow-up this coming Monday (which is unusual, because our x-rays are supposed to be spaced out every 2 weeks).  I'm glad I have strong callus formation but pre-consolidation is definitely a worry.

Here's my x-ray from this past Monday:



1.7 cm that day, which means I'm probably around 2.2 cm now (almost an inch taller!  )  I was also really excited after seeing my x-ray, the nail looks like it fits perfectly with little risk of fracture on the shaft (sometimes, when too much of the canal is reamed out, the femur become very thin).

I'm finally driving, which has been such a big satisfaction for me.  Being able to go anywhere I want makes lengthening way more fun!  I'm also entirely independent now and have no one with me for assistance.  It's a bit difficult sometimes, so I'm thinking about hiring a caregiver for some days (but I haven't needed to lately).  Big reasons why I would want a caregiver right now: in the morning, I'm so stiff and in pain that I sometimes don't want to leave the bed.  If I had the caregiver to get me breakfast, that would make things a lot easier (instead of me walking to the breakfast buffet and serving myself [which btw, is very difficult when your hands are focused on using the walker!]).  I'd also need a caregiver for washing my clothes, going shopping for groceries, and cooking (sometimes).

Despite everything sounding like it's going great, I'd say my current mood is unhappy.  It's not to say I regret anything (I'm pinching myself with happiness everyday knowing that I'm growing!)  But my mood is directly affected by the chronic pain and lack of sleep I'm getting.  For anyone who thinks they have a high pain threshold, I promise you that this pain is like nothing you will be prepared for.  I thought I would be able to handle the pain, but chronic pain is very difficult to handle.  Muscle tightness, soreness, and pangs of random pain are the usual pains I'm experiencing, especially at night when I'm trying to sleep.  Also, I feel pain right after lengthening, so I don't look forward to my 4 daily lengthening sessions now.

Pain management is probably the most important aspect to lengthening, right next to stretching.  I'm currently taking 10 mg of Oxycodone every 6 hours (which usually wears off by hour 4) which then requires me to take acetominophen.  I tried Valium last night for muscle spasms, and I don't think it did much.

But besides the pain, I'm grateful to have my lengthening going so well.  3 weeks passed quickly, only 2 more months to go (well, of lengthening.  Then I'm probably looking at another 2-3 months before I can fully bear weight).

[mediocre]

Great 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)

[Muse]

Sorry to read about your rough start, glad things are getting better for you.  All the best for your recovery ahead. 

[Grow]

Incoming update.   Btw, if you want to meet me or any of the other lengtheners, just shoot me a PM and come over to the Homewood Suites!


--

Glad 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!

[BilateralDamage]

Great 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... 

Sorry 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.

Glad 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.


--


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.

[shortkid]

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?

[Medium Drink Of Water]

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.

[BilateralDamage]

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?

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.

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.

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.

[shortkid]

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.

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!