Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: OGfivesevener on June 15, 2019, 05:27:57 AM
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Hey everyone, I had my consult at Dr. Paley's not too long ago. I am booked for July. I'm back and forth about an actual diary but I'd still like to update here and there with hopefully helpful info. As well as another positive or negative experience.
Consult ($500 EOS Scan/Labs & $750 Consult Fee - NOT included in $97,500 surgery fee):
Some do plan the consult and surgery date in one trip for logistics, but doing it ahead of time let's you wrap your head around planning things better.
EOS scan and blood drawn a few hours before my consult. Usually the scan/blood work is done a day prior and following consult is in the morning.
A nurse checks my blood pressure (normal) and my height in late afternoon (168cm. Dangit. I was getting around 5'7.2 in the mornings)
The coordinator and PA spoke to me first at length and I got a feel for how things are at the institute.
Dr. Paley is a busy guy. He was able to drop in for 5-10 minutes to meet me and discuss plans.
Dr. Robins was last to drop in, Dr. Paley's protege you can say. Nice impressions from both and Dr. Robins felt forthcoming with everything.
They checked my Vitamin D levels and it was quite low. It was something to mention but no one made a fuss over it. They just want things lined up for the best outcome any way they can. So we're going to have me start on Vitamin D 10,000 IUs daily. No other supplements were suggested.
They go over the EOS scan. I'm the normal 80% tibia to femur. Dr. Paley has me get on the table and checks my leg tightness with different movements.
I should be good for the middle diameter nail, possibly the largest. And my weight is fine for the support.
I get a tour of the PT room close by and say my goodbyes.
My Impressions:
They are a busy, experienced operation. You may find when you reach out to them it takes longer for a response versus other Dr offices. They have a lot going on. It was late afternoon and I saw several other kids and parents around. A few other adults. Just one guy remaining in the PT room as they were closing. The coordinator said if the consult was in the morning as it usually is I could have seen more CLL patients and asked to meet some.
With variation in how each patient deals with the process. The best way they could describe the usual process is that it's difficult but tolerable. And she mentioned a patient saying she thought it would have been more difficult. Basically it helped with my comfort level more.
Not knowing what type of person I am, the PA mentioned she usually likes patients to tell at least 1 person about going through the process. Im deciding not to tell anyone until after. I rather not deal with family worrying. But since it can be a mentally trying time in the beginning, it's good to have someone to talk to.
I feel like with reading all the diaries on this forum, I already had good knowledge of everything that was gone over.
I am staying at one of their recommended extended stays with wheelchair shuttle service for the first month. I tried looking into other lodging options and then factoring in the Uber rides to and from, and possibly having to coordinate Wheelchair transport. It didn't seem to make sense given PT is 5 times a week. So it's basically going to be $100-$120 a day for lodging. $3000 a month. Priceline and Ebates will help a bit.
They highly recommend having someone the first few weeks so I'm hiring a caregiver for 2 weeks and go from there. I'm still looking for sources where I get to pick the caregiver and have come up with Care.com so far. The only issue is safety as you kind of have to vet the candidates yourself. But it's still going to be better than something like Craigslist. They let you order a background check.
Oh, I forgot, about the lengthening goals. So, basically 5cm, basically everyone can get there no problem. They say it's good that I don't have a set goal of cm I feel strongly about. Everyone will be different and they have to assess things 1 cm at a time. They'll let you know if all is good for the next cm or not. I am leaning towards 6-7cm, probably landing on 6.5cm. But, I will just see how things go.
At this point, I'm just as concerned about what to tell my family and friends after, as the actual surgery itself. Honesty? Neck surgery? Scoliosis surgery? Bow legs? Who knows.
Anway, that's it for now. I'll update with anything that might be helpful closer to and after the surgery day. I stay pretty busy so can't really be bothered with posting Xrays and all that proving I'm a real patient. Don't think Dr. Paley needs any fake reviews anyway, right?
Cheers everyone.
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Paley August '19 here. Sent you a PM.
Just had my consultation and had a very similar experience. Best of luck on your journey! Hopefully we can connect this summer for support.
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I'm looking forward to reading your diary, OGfivesevener!
Re: what to tell people -- "Leg surgery" works well enough for people who ask what happened but you don't want to get into the details. I personally haven't told more than 2 very close friends the actual truth. You can always embellish the truth a little bit (e.g., maybe one leg is shorter than the other and it's beginning to cause you hip problems?) but it's really up to you and what you're comfortable telling people.
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I'm looking forward to reading your diary, OGfivesevener!
Re: what to tell people -- "Leg surgery" works well enough for people who ask what happened but you don't want to get into the details. I personally haven't told more than 2 very close friends the actual truth. You can always embellish the truth a little bit (e.g., maybe one leg is shorter than the other and it's beginning to cause you hip problems?) but it's really up to you and what you're comfortable telling people.
Yea, on the one hand we could just treat it like no big deal and normalize it. Many surely will freak out though. "Leg and spine issues, don't want to get into it."
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Congrats bro! I see you ended up choosing Paley, when's the surgery scheduled for? mine is Aug 8, Dr. Mahoubian
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Congrats bro! I see you ended up choosing Paley, when's the surgery scheduled for? mine is Aug 8, Dr. Mahoubian
Hey mine will be mid July. Congrats to you also.
For those going with Paley July-September, I might be open to sharing lodging. Maybe, not sure lol.
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Former/current Paley patients,
I am currently searching for a caregiver for the first 2 weeks. Is it the case that during the 3-4 days at the hospital the nurses and staff will be available enough to where I don't really need a caregiver with me?
Should I just book for when I get discharged and onward for 2 weeks?
I'm going through care.com for searching individual providers. Do you have other suggestions that worked well for you?
Thanks so much!
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Hi OG
You don't need a caregiver during time at the hospital. Nurses over there are quite good. You just need a caregiver from the discharge and 2 weeks or so. Caregivers don't really do much for you but you need them at the beginning. You can ask hospital or Paley institute about caregivers.
Good luck!
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Hi OG
You don't need a caregiver during time at the hospital. Nurses over there are quite good. You just need a caregiver from the discharge and 2 weeks or so. Caregivers don't really do much for you but you need them at the beginning. You can ask hospital or Paley institute about caregivers.
Good luck!
Cool, much appreciated Ghost.
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Well, we are nearly there. I should be responding next week from the hospital. If not, something is up.
Just putting it out there haha.
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Well, we are nearly there. I should be responding next week from the hospital. If not, something is up.
Just putting it out there haha.
We'll be keeping tabs on you next week waiting for a response haha. Hope to see you in WPB in a couple of months. Best of luck to you man.
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Hey very random but, can any recent Paley patients let me know if the post surgery rooms have usb outlets? Forgot to pack the plug adapter and it’s just a hassle acquiring one without a car. Thanks!
edit: nvm
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Currently in the hospital. No complications as far as I know. I’ll try to only share useful details.
Read about the issue with urinating post op. I had no issues. They bring you into the hospital beds 1-2 hours before surgery. Soon as you get into the door you should be asked if you need to pee. Go regardless if you feel the urge or not. It may help with the post op issues.
If you’re 100% sure you’re going through with surgery. Might be better to not read all the consent forms and all things running through your head right before surgery. Just sign the damn things.
Waking up after surgery was such a relief. You will be disoriented and kids might be crying left and right. Like a damn war zone. Nurse is asking you how you feel like it’s an urgency to move you along to your final room. I’m like give me a second to register how I’m feeling.
Your private room is nice. Door stays close and it never gets that noisy.
I didn’t have a catheter in when coming to. They emptied my bladder out and removed prior.
On surgery day I just rested. Didnt eat till late in the day. I had slight nausea and let them give me something for that first. Waited till I was fine then ate.
So they’re not walking you to the toilet to pee. You get the angled bottle container to pee into. Spread paper towels under your wee wee so you catch any leakage. You’ll get the hang of it and all is good.
Okay so everyone has been great but there are differences in how all the nurses go about things. This is important. Know the meds they give you and what time they were given. I’m on toradol and oxy. Toradol isn’t a narcotic. I feel both help very similarly for pain. Although I need two oxy to have an effect. Toradol is every 6 hours and oxy is every 4. Make note of the times you take them. It should be staggered. Not at the same time. Just take it on schedule instead of waiting for that pain to increase. The issue was one night nurse wouldn’t just come and check on me every few hours like the day nurses. Most nurses come and check and ask about pain so I just relied on that. Keep up with the time you last took a med and set an alarm to wake yourself up if no one’s come to offer meds.
You’re basically getting interrupted 24/7 from nurses checking vitals, then taking blood, then the main nurse for pain.
Pain meds take effect 30 minutes roughly after administration. Once you’ve learned about the PT stretches. That period after the 30 minutes is great time to do stretches. Feels great after doing stretches when pain meds have kicked in rather than keeping your legs in one place all day.
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Your Journey has began OGFiveSevener. You're courageous and your mind is in full gear. Congratulations.
Best of luck to you and I'll be following your journal and chiming in from time-to-time. Feel free to reach out to me if you have any CLL questions or feedback you would like to bounce off of someone who has gone through the experience.
All the Best,
IFS
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Your Journey has began OGFiveSevener. You're courageous and your mind is in full gear. Congratulations.
Thanks IFS! Excited to get to where you’re at soon. Cheers my man.
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WooHoooo!! cheers to you my brother! You've done it haha the beginning of the journey, Let's goo!
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OG congrats on a successful start to the journey brother! Sounds like you are on top of pain management - thanks for the tips. Rooting for you and will be joining you very soon.
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So no one told me until later in next the day after surgery by the PT. You can move your legs around. Left right rotating slightly left and right etc. for whatever reason I was under the impression legs are so fragile I shouldn’t move. If you have help they can do that. Or if your pain meds are dialed in. The compression pads on your legs can feel restrictive so you can take a break from those also. Just have them back on when you stop moving your legs around much.
Dial the pain meds in and do the stretches 3 times a day while in the hospital. The walker was quite easy day 2 post op. So they transitioned me to crutches at the end of therapy. That was all new to me and I was tired after making a full circle around the floor with walker. Some visualization and I think I can get that down.
In fact they’re discussing not ordering any more wheelchairs for stryde patients now based on all experiences.
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Do you mind telling us your age (approximately) and your job situation? Are you employed, self-employed, and how will you manage the work break that comes with the surgery, both financially and logistically?
Cheers.
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Still not in front of a laptop yet but getting discharged today. 3 days post op and I walked around my floor on crutches after pain meds kicked in. Taking walker home just in case as well. Just hope pain is well controlled by myself after discharge.
I’m in my 30s. The work questions and all I don’t feel are important to help. Everyone will have their own situation.
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Still not in front of a laptop yet but getting discharged today. 3 days post op and I walked around my floor on crutches after pain meds kicked in. Taking walker home just in case as well. Just hope pain is well controlled by myself after discharge.
I’m in my 30s. The work questions and all I don’t feel are important to help. Everyone will have their own situation.
just curious how is your gait on crutches? just curious about the weight bearing capabilities of the stryde nail
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^ mirinheight, your question is answered in this FAQ from the Paley institute:
http://paleyinstitute.org/wp-content/uploads/Cosmetic-Stature-Lengthening-FAQs15.pdf
The STRYDE is made from Stainless Steel,which is stiffer and stronger. The mechanical testing of the STRYDE show that its bending strength to failure (yield strength) is approximately 1.5 times that of P2.2 and that its fatigue strength is nearly two times that of P2.2. (e.g. with the 11.5 nail the fatigue load for the 10.7 P2.2 nails is 118lbs vs. 244 for the 11.5mm STD; the fatigue strength for the 12.5mm nail is 146lbs for P2.2 vs. 320lbs for the 13mm STD nail)
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Everyone. It’s been nothing but excitement around 2 days post surgery. I’ve got so much to say. Be back soon to write a novel. I’ve been walking around straight posture with crutches since 3 days post surgery at discharge. Back soon!
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Everyone. It’s been nothing but excitement around 2 days post surgery. I’ve got so much to say. Be back soon to write a novel. I’ve been walking around straight posture with crutches since 3 days post surgery at discharge. Back soon!
Looking forward to OG5S!
Wow, crutches and standing after only a few days? You're doing incredibly well so far! All the best!
IFS
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Amazing news OG! Great to hear of your progress and looking forward to your updates as well - cheers!
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Good stuff bro! you're doing great, good mind set too keep it up!
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freakin' exhausting past few days! haha. but excitement trumps it. I ended up doing this solo - no caregiver.
I'm going to start an official diary after all. It's gonna be a new thread. Long format guide of my experience and what I can share to help.
Finally got my bed desk laptop trey thingie which is awesome.
I keep procrastinating on the guide but that just means more details are coming in. Had my first PT session today. Piece of cake compared to all ive been putting myself through to set up my LL accessible room.
Made the front desk at hotel feel bad for not bringing up my Amazon boxes. I waited all day for someone to be available to bring the stuff up on a trolley cart.
I said F it, imma do it myself. Put boxes on trolley and took it to elevator to top floor (only 3 hehe) and the end of the hall on crutches. 3 different guests offered to help along the way but I was kind of upset and determined and thanked them and said I need the practice and insisted no help.
So today when I came down to trolley up hotel staff took it up for me right away : )
k, gotta get some work done first. I feel like a superstar being on crutches 3 days post op but my flexibility will still be a problem soon just like everyone else.
back soon all.
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freakin' exhausting past few days! haha. but excitement trumps it. I ended up doing this solo - no caregiver.
I'm going to start an official diary after all. It's gonna be a new thread. Long format guide of my experience and what I can share to help.
Finally got my bed desk laptop trey thingie which is awesome.
I keep procrastinating on the guide but that just means more details are coming in. Had my first PT session today. Piece of cake compared to all ive been putting myself through to set up my LL accessible room.
Made the front desk at hotel feel bad for not bringing up my Amazon boxes. I waited all day for someone to be available to bring the stuff up on a trolley cart.
I said F it, imma do it myself. Put boxes on trolley and took it to elevator to top floor (only 3 hehe) and the end of the hall on crutches. 3 different guests offered to help along the way but I was kind of upset and determined and thanked them and said I need the practice and insisted no help.
So today when I came down to trolley up hotel staff took it up for me right away : )
k, gotta get some work done first. I feel like a superstar being on crutches 3 days post op but my flexibility will still be a problem soon just like everyone else.
back soon all.
Gosh; All that and crutches after only 3 days! You're doing incredible. Keep up the determination! Looking forward to hearing more about your journey.
IFS
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freakin' exhausting past few days! haha. but excitement trumps it. I ended up doing this solo - no caregiver.
I'm going to start an official diary after all. It's gonna be a new thread. Long format guide of my experience and what I can share to help.
Finally got my bed desk laptop trey thingie which is awesome.
I keep procrastinating on the guide but that just means more details are coming in. Had my first PT session today. Piece of cake compared to all ive been putting myself through to set up my LL accessible room.
Made the front desk at hotel feel bad for not bringing up my Amazon boxes. I waited all day for someone to be available to bring the stuff up on a trolley cart.
I said F it, imma do it myself. Put boxes on trolley and took it to elevator to top floor (only 3 hehe) and the end of the hall on crutches. 3 different guests offered to help along the way but I was kind of upset and determined and thanked them and said I need the practice and insisted no help.
So today when I came down to trolley up hotel staff took it up for me right away : )
k, gotta get some work done first. I feel like a superstar being on crutches 3 days post op but my flexibility will still be a problem soon just like everyone else.
back soon all.
I'm getting excited for this diary already!
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Not all is sunny in Florida! Geezus if you all have a choice, avoid getting this done over the summertime. It’s chaos here.
Explain later.
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Nice diary. Good luck ahead!
I’m in my 30s. The work questions and all I don’t feel are important to help. Everyone will have their own situation.
Actually most people have similar situations. :)
1. Students (you probably are not, at 30+) mostly take a gap year or semester and do it
2. Employed people either quit their jobs and do it and find another one after its over OR go back to work on crutches OR figure out a way of getting extended leave.
3. Business owners can do anything they like
I think if you are 2 it would immensely help others to know some tips. Like does Paley institute write letters that allow an extended leave through FMLA?
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Well, all is good now. My ERC device (that controls distraction) had an error as we were going through things - an ERC3. The newest one available until the ERC4 comes out.
So they tried giving me an ERC1 instead. I would have taken it but the ERC1 can not be used by the patient alone. Not a story worth telling after all. They gave me someone else's assigned ERC3. Most people aren't doing this alone. There was more to it and we hugged it out so all good.
It's so busy summertime they don't have enough ERC3 devices to go around.
As for the work stuff, I'm a day trader so no boss. Sorry I can't help there.
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You're sharing your ERS machine with another patient? Is that possible? Is it not unique to each patient like it's configured to lengthen 8cm max or something? Is it a makeshift arrangement or you will continue sharing like this?
And what do you mean by "Most people aren't doing this alone. There was more to it and we hugged it out so all good."? You mean they are with family? How is that related to sharing ERS machine?
Sorry for lots of questions ;D
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The ERC machines are reprogrammed after each patient returns theirs after distraction is finished. Most patients have family with them, as most are younger. If you have family, they will assist you in distraction if somehow you end up with an ERC1.
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This process is a trying one guys. Ups and downs. you get excited then suddenly realize how exhausted you are. Hire that caregiver for those 2 weeks just in case! Esp if you are younger than 30.
Sorry to be ageist but it won't be easy to fight through the tough times alone.
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Wise words brother! haha hope you keep doing well OG, I'll be catching up with you soon 8)
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Wide variance in PT experience. One I'm going to avoid haha.
10 days post op and I got to walk around the PT office with a cane. Felt great. Can't push it all too fast or might have to deal with injuries.
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This process is a trying one guys. Ups and downs. you get excited then suddenly realize how exhausted you are. Hire that caregiver for those 2 weeks just in case! Esp if you are younger than 30.
Sorry to be ageist but it won't be easy to fight through the tough times alone.
Props to you for making it with no caretaker - that's also what I ended up doing. Clearly the most difficult issue was going from the bed to the bathroom, and also food. I found that hotel staff (in Vegas that is) was very sympathetic and would have no problem escorting uber eats deliveries into my room. They literally brought food up to my bed. Staying at a full service hotel with room service would be even more convenient, but I don't know if any of Paley's recommended hotels have that option.
I can definitely see where having a caretaker would've helped the first couple of days, but to be honest I felt pretty confident in taking care of myself after day 2. I also tried using Care.com. What scared me off was that if you hire someone you'll have to fill out a lot of tax paperwork. It just didn't seem worth it to me.
Moral of the story is that having a caretaker is definitely more "optional" if you're doing Stryde as long as you're aware of the risks.
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Agreed man. I have my food deliveries to my door. But have to handle it from there. Was exhausting first few days setting up my room to make my life easier. Definitely something you want to do before the surgery. So that means setting up room, taking the hit on lodging while you’re in the hospital. Unless family helps.
I would say if you don’t have family for sure hire a caregiver for one week. And one from your doctor’s recommended list. Then go from there.
It’s give and take. You can be lazy and let your body take its time. Or be all in and test yourself and perhaps get to crutches, cane faster. But, you’re not taller than those who take it easy.
Big thing is your personality here. If you typically like being self reliant and don’t like to ask others for help in general. You can make it work with Stryde.
Otherwise it’ll cost you some more money but your end goal of being taller is the same. That is, if your PT is on point.
At this point I’m frustrated I can’t find a good position for stay on the laptop for any decent amount of time. I’m writing this on my phone as we speak.
I’ve done the in bed with laptop tray. Sitting at desk. Will test out the standing desk next.
I dunno. Perhaps expect to not get anything done for 2-3 weeks. Unless you can stay in a steady state of euphoria with pain meds. I only got a week’s worth of Oxycodone at discharge. Then I only asked for 2 more days worth at refill because I heard they’re tough about it.
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Ring ring IFS and other Vets. Can I get tips on pain management after my one week of Oxy is up?
How long did you sleep with legs elevated for?
And I suppose my sleep broken up to multiple 1-2 hour sessions every night is just the way it goes. Roughly when did it get better for you guys? Can you describe how you’re sleeping on your side?
I’m tired.
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nvm, I was having a moment other day. things are getting better. pain isn't as bad just nagging. I am 12 days post-op for reference.
Sleep has gotten better, with 1.5-2 hour sessions, once I switched to the sofa and used the end as a point to elevate my legs. I put a cushion at the end piece so I can play around with what gets my legs most comfortable. One leg might like it straighter, one leg may like it more bent at the knee. Adjust and you can find an okay place. It is much better than sleeping on the bed with pillows to elevate.
I am down to mostly the tylenol 500mg 2 pills every 6 hours. I'll continue with the last bit of my Oxy 1 pill for nighttime. I am doing my PT at home upon waking after distraction. Then a mini-moderate PT after every distraction after that. Then a PT before bedtime. In addition to the weekday PT sessions at Paley's.
CBD is legal in FL so I picked some up to vape. I can't say it's totally useless but won't do much for pain. It does relax you just a bit so it's enjoyable. If recreational MJ was legal here I'd surely try that.
For PT at Paley's I'm not letting any of them push me too far past my breaking point after the one bad experience. I don't believe it to be efficient. More repetitions of 20-30% past the breaking point leads to progression for me. That was one of the worst experiences of pain in my life and I just kept it all inside. F that!
I am on the cane only starting today to see how my legs handle things.
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Surgery day through discharge thoughts and tips
Everyone's experience is different. Certainly isn't easy but being prepared makes a world of difference. It was my fault for not re-reading all the diaries and preparing better before the surgery. So I'd definitely do that! Take notes from everyone's Stryde diaries.
Surgery day:
Not much to say about surgery day. Once you're there it's go time. You arrive 2 hours before surgery time. They prep you, go over what will happen, move you to the operating room. You get the countdown, and then you wake up in your hospital room for Paley's patients. Nice room with restroom and seating area if you have caretaker/love ones.
During the hospital stay
You have 4 nights covered under the fee. It just depends how you feel if you get discharged early. I was discharged after 3 nights.
I don't know if they'd provide anything other than what was given to me, but what was given kept me comfortable enough. I was on Toradol every 6 hours and Oxycodone every 4 hours. Other things included baby aspirin, vitamin D, and valium (muscle relaxer). Some nurses will visit you every 4-6 hours. Some are less often and wait for you to push the button (esp at night). You will be constantly visited by either the nurse, someone who takes your vitals, or someone draws your blood. Rather than wait for the pain to return, I'd just let them know you'd like the meds delivered at the set times. This may involve you setting an alarm on your phone for the night nurses who may not come routinely.
Have them re-fill the bags of ice whenever they're not cold anymore for the swelling. You'll be peeing into an angled container - it's tricky at first but you'll get the hang of it hehe. Hopefully you won't need to poop.
I didn't eat right away when they delivered the first meal. I was accessing my level of nausea and decided to have them give me something for it first. I gave it most of the day until I felt pretty good before eating. I never dealt with nausea after that.
On your second day, Paley's PT will visit you to get you out of bed. She tells me I can move my legs whenever I want. I wish I had known on the first day, it gets pretty uncomfortable with your legs in one position the entire day. Your legs are wrapped with compression to keep the blood flowing. If you have help you can unwrap them and take a break here and there. The PT will show you a few exercises you can do while laying down. Definitely do them. I did them once my pain meds kicked in each time. The PT will get you out of bed, onto a walker, and then onto a wheelchair to sit around for a bit. Definitely exhausting. The 3rd day, you can see how you do with moving around the walker outside the room. I made one circle around the floor and then she decided I can try the crutches. I made 10 steps and was exhausted. I kept up with the exercises every 2-4 hours. By the 4th day I was on crutches moving around my room before the PT would arrive. I let them know I can be discharged that day. All of this is included: walker, crutches, cane, portable toilet (just for the hang rails that go over your own toilet). I didn't need the wheelchair and they may stop providing them to Stryde patients in the future anyway. Your caregiver or family must take you from the hospital back to your place. No taxis or rideshares.
Things you should have set up before the surgery
This will mean you'll be paying for several nights where you won't be staying at your lodging. I set up everything myself after discharge and was exhausted!
You can decide what is optional for yourself.
Gel ice packs - keep the swelling down for the first week after discharge
Heating pads X2 - Week 2 and onwards (after the swelling goes away; you must sleep with your legs elevated for 1-2 weeks for the swelling to go down) you will deal with a nagging soreness constantly. Heat will help with the soreness ALOT. Esp if you'd like to sit at a computer desk as I am now : )
Something to wrap heating pads around each leg
Blue Sharpie - They draw a mark on your legs where you will place the ERC device for lengthening. The tegaderm may start un-doing on you. You'll have to replace it and re-fill in the marking.
Nexcare Tegaderm waterproof transparent dressing - to replace the dressing over that mark when needed.
Gym ankle straps - if you don't have help with PT at home or like to push yourself.
Resistance bands or similar - to loop through the ankle straps and pull for PT sessions
Bidet - I needed this. It's hard wiping your ass when your legs hurt. I get it best I can, then stand up and do one last wipe : )
Water bottle - depends how you intend to get water
Water filter jug - I got a Brita one
Water bottle holder - Because I'm alone, I got this water bottle holder than has a pouch for my phone also. Comes with shoulder sling also. So that I can carry it all at once around the room.
Paper plates and plasticware - no energy to be doing dishes
Tub transfer bench - a necessary I think if your room has a tub. If it's a shower then some other option. You won't be able to safety stand and shower for a while. Or even bend your legs high enough to enter the tub in the first place.
Toilet safety rails - I ended up not using the one I got discharged with. I reversed the tub transfer bench to the side that has the railing so I just use that.
Meds:
Stool softener & Laxative: Have this ready because you may not be able to have a bowel movement for a while after discharge. I had to wait a few days for it to arrive and later the same day taking it I was good to go. I had to take it just once more after the first pass.
Tylenol - they'll bring you Acetaminophen regular strength 100 tabs (2 every 4 hours). $10 for generic! Buy your own. I bought extra strength instead (2 every 6 hours).
Baby Aspirin 81mg - 30 pills for $10! Again, by your own.
Oxycodone - I forgot the exact price but it's prescription only so no choice here. Probably was around $45 for a week's worth (1 every 4 hours).
Supplements I take. Don't know what potentially helps or not, but they were cleared by the docs and PAs.
Vitamin D3 - a must; part of their protocol
Collagen supplements
Mens multivitamin
BCAAs
Experience with sleeping
I can't sleep. haha.
So you'll need to sleep with legs elevated for several weeks. I found once I did that properly, the swelling went down fast. Elevating with pillows on the bed didnt' work out. I switched to using the end piece of the sofa as a sturdy surface and that helped a bit. Still, sleep is 1.5-2 hour sessions at most. It's been like that for me for over 2 weeks post op.
After 2 weeks my sutures/wounds felt sturdy enough so I tried laying on my side. Big difference! Haven't actually slept that way yet but watch videos online about side sleeping after leg surgery. 2 Pillows under head or 1 folded. 1 pillow between thighs. 1 pillow to cradle like your lover. Maybe 1 on your backside.
Taking benadryl will get your drowsy for sure. But I found I was drowsy but still couldn't sleep the first 2 weeks due to discomfort. So I was very groggy.
Things will probably be better now once I try sleeping on my side.
All I have for now everyone. The main point is, being prepared can save you a lot of discomfort. So jot down everyone's tips!
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Surgery day through discharge thoughts and tips
Everyone's experience is different. Certainly isn't easy but being prepared makes a world of difference. It was my fault for not re-reading all the diaries and preparing better before the surgery. So I'd definitely do that! Take notes from everyone's Stryde diaries.
Surgery day:
Not much to say about surgery day. Once you're there it's go time. You arrive 2 hours before surgery time. They prep you, go over what will happen, move you to the operating room. You get the countdown, and then you wake up in your hospital room for Paley's patients. Nice room with restroom and seating area if you have caretaker/love ones.
During the hospital stay
You have 4 nights covered under the fee. It just depends how you feel if you get discharged early. I was discharged after 3 nights.
I don't know if they'd provide anything other than what was given to me, but what was given kept me comfortable enough. I was on Toradol every 6 hours and Oxycodone every 4 hours. Other things included baby aspirin, vitamin D, and valium (muscle relaxer). Some nurses will visit you every 4-6 hours. Some are less often and wait for you to push the button (esp at night). You will be constantly visited by either the nurse, someone who takes your vitals, or someone draws your blood. Rather than wait for the pain to return, I'd just let them know you'd like the meds delivered at the set times. This may involve you setting an alarm on your phone for the night nurses who may not come routinely.
Have them re-fill the bags of ice whenever they're not cold anymore for the swelling. You'll be peeing into an angled container - it's tricky at first but you'll get the hang of it hehe. Hopefully you won't need to poop.
I didn't eat right away when they delivered the first meal. I was accessing my level of nausea and decided to have them give me something for it first. I gave it most of the day until I felt pretty good before eating. I never dealt with nausea after that.
On your second day, Paley's PT will visit you to get you out of bed. She tells me I can move my legs whenever I want. I wish I had known on the first day, it gets pretty uncomfortable with your legs in one position the entire day. Your legs are wrapped with compression to keep the blood flowing. If you have help you can unwrap them and take a break here and there. The PT will show you a few exercises you can do while laying down. Definitely do them. I did them once my pain meds kicked in each time. The PT will get you out of bed, onto a walker, and then onto a wheelchair to sit around for a bit. Definitely exhausting. The 3rd day, you can see how you do with moving around the walker outside the room. I made one circle around the floor and then she decided I can try the crutches. I made 10 steps and was exhausted. I kept up with the exercises every 2-4 hours. By the 4th day I was on crutches moving around my room before the PT would arrive. I let them know I can be discharged that day. All of this is included: walker, crutches, cane, portable toilet (just for the hang rails that go over your own toilet). I didn't need the wheelchair and they may stop providing them to Stryde patients in the future anyway. Your caregiver or family must take you from the hospital back to your place. No taxis or rideshares.
Things you should have set up before the surgery
This will mean you'll be paying for several nights where you won't be staying at your lodging. I set up everything myself after discharge and was exhausted!
You can decide what is optional for yourself.
Gel ice packs - keep the swelling down for the first week after discharge
Heating pads X2 - Week 2 and onwards (after the swelling goes away; you must sleep with your legs elevated for 1-2 weeks for the swelling to go down) you will deal with a nagging soreness constantly. Heat will help with the soreness ALOT. Esp if you'd like to sit at a computer desk as I am now : )
Something to wrap heating pads around each leg
Blue Sharpie - They draw a mark on your legs where you will place the ERC device for lengthening. The tegaderm may start un-doing on you. You'll have to replace it and re-fill in the marking.
Nexcare Tegaderm waterproof transparent dressing - to replace the dressing over that mark when needed.
Gym ankle straps - if you don't have help with PT at home or like to push yourself.
Resistance bands or similar - to loop through the ankle straps and pull for PT sessions
Bidet - I needed this. It's hard wiping your ass when your legs hurt. I get it best I can, then stand up and do one last wipe : )
Water bottle - depends how you intend to get water
Water filter jug - I got a Brita one
Water bottle holder - Because I'm alone, I got this water bottle holder than has a pouch for my phone also. Comes with shoulder sling also. So that I can carry it all at once around the room.
Paper plates and plasticware - no energy to be doing dishes
Tub transfer bench - a necessary I think if your room has a tub. If it's a shower then some other option. You won't be able to safety stand and shower for a while. Or even bend your legs high enough to enter the tub in the first place.
Toilet safety rails - I ended up not using the one I got discharged with. I reversed the tub transfer bench to the side that has the railing so I just use that.
Meds:
Stool softener & Laxative: Have this ready because you may not be able to have a bowel movement for a while after discharge. I had to wait a few days for it to arrive and later the same day taking it I was good to go. I had to take it just once more after the first pass.
Tylenol - they'll bring you Acetaminophen regular strength 100 tabs (2 every 4 hours). $10 for generic! Buy your own. I bought extra strength instead (2 every 6 hours).
Baby Aspirin 81mg - 30 pills for $10! Again, by your own.
Oxycodone - I forgot the exact price but it's prescription only so no choice here. Probably was around $45 for a week's worth (1 every 4 hours).
Supplements I take. Don't know what potentially helps or not, but they were cleared by the docs and PAs.
Vitamin D3 - a must; part of their protocol
Collagen supplements
Mens multivitamin
BCAAs
Experience with sleeping
I can't sleep. haha.
So you'll need to sleep with legs elevated for several weeks. I found once I did that properly, the swelling went down fast. Elevating with pillows on the bed didnt' work out. I switched to using the end piece of the sofa as a sturdy surface and that helped a bit. Still, sleep is 1.5-2 hour sessions at most. It's been like that for me for over 2 weeks post op.
After 2 weeks my sutures/wounds felt sturdy enough so I tried laying on my side. Big difference! Haven't actually slept that way yet but watch videos online about side sleeping after leg surgery. 2 Pillows under head or 1 folded. 1 pillow between thighs. 1 pillow to cradle like your lover. Maybe 1 on your backside.
Taking benadryl will get your drowsy for sure. But I found I was drowsy but still couldn't sleep the first 2 weeks due to discomfort. So I was very groggy.
Things will probably be better now once I try sleeping on my side.
All I have for now everyone. The main point is, being prepared can save you a lot of discomfort. So jot down everyone's tips!
2 weeks flew by bro! crazy haha how are you feeling yourself now in terms of pain? I'm just on day 3 and pay is pretty constant, nothing I can't handle but I pop the norcos every 4 hrs
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Things you should have set up before the surgery
This will mean you'll be paying for several nights where you won't be staying at your lodging. I set up everything myself after discharge and was exhausted!
You can decide what is optional for yourself.
Gel ice packs - keep the swelling down for the first week after discharge
Heating pads X2 - Week 2 and onwards (after the swelling goes away; you must sleep with your legs elevated for 1-2 weeks for the swelling to go down) you will deal with a nagging soreness constantly. Heat will help with the soreness ALOT. Esp if you'd like to sit at a computer desk as I am now : )
Something to wrap heating pads around each leg
Blue Sharpie - They draw a mark on your legs where you will place the ERC device for lengthening. The tegaderm may start un-doing on you. You'll have to replace it and re-fill in the marking.
Nexcare Tegaderm waterproof transparent dressing - to replace the dressing over that mark when needed.
Gym ankle straps - if you don't have help with PT at home or like to push yourself.
Resistance bands or similar - to loop through the ankle straps and pull for PT sessions
Bidet - I needed this. It's hard wiping your ass when your legs hurt. I get it best I can, then stand up and do one last wipe : )
Water bottle - depends how you intend to get water
Water filter jug - I got a Brita one
Water bottle holder - Because I'm alone, I got this water bottle holder than has a pouch for my phone also. Comes with shoulder sling also. So that I can carry it all at once around the room.
Paper plates and plasticware - no energy to be doing dishes
Tub transfer bench - a necessary I think if your room has a tub. If it's a shower then some other option. You won't be able to safety stand and shower for a while. Or even bend your legs high enough to enter the tub in the first place.
Toilet safety rails - I ended up not using the one I got discharged with. I reversed the tub transfer bench to the side that has the railing so I just use that.
Meds:
Stool softener & Laxative: Have this ready because you may not be able to have a bowel movement for a while after discharge. I had to wait a few days for it to arrive and later the same day taking it I was good to go. I had to take it just once more after the first pass.
Tylenol - they'll bring you Acetaminophen regular strength 100 tabs (2 every 4 hours). $10 for generic! Buy your own. I bought extra strength instead (2 every 6 hours).
Baby Aspirin 81mg - 30 pills for $10! Again, by your own.
Oxycodone - I forgot the exact price but it's prescription only so no choice here. Probably was around $45 for a week's worth (1 every 4 hours).
Supplements I take. Don't know what potentially helps or not, but they were cleared by the docs and PAs.
Vitamin D3 - a must; part of their protocol
Collagen supplements
Mens multivitamin
BCAAs
These tips are gold for preparation. Thanks for sharing OG!
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Just checking in. I finished with 7.5cm! Quite the journey this has been.
Now on to recovery. I finished lengthening 4 days ago but I'll stick around west palm beach for a few weeks until I can walk a little better before going home.
Im on my feet walking unassisted but the gait isn't great. Need the glute strength back to stop the swaying.
I developed numbness in both lower legs and nerve pain in the left. Thankfully things are improving.
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You did it bro, crazy lol, congrats.
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Congratulations! You have finally made it!
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Props to you for making it with no caretaker - that's also what I ended up doing. Clearly the most difficult issue was going from the bed to the bathroom, and also food. I found that hotel staff (in Vegas that is) was very sympathetic and would have no problem escorting uber eats deliveries into my room. They literally brought food up to my bed. Staying at a full service hotel with room service would be even more convenient, but I don't know if any of Paley's recommended hotels have that option.
1. Thanks!! I'm actually curious what your movement is like those first few weeks.
2. Ex: can you easily safely crawl around on the floor to get from bedroom to the floor? I guess then there is the issue of being able to stand up to reach the toilet after crawling though. Still, I wonder if crawling on all fours like a baby is safe (or if its not worth it)
3. I'm wondering if it would help to get a stool or something to get in the bed or if a stool is a hazard because it could slip/is too small?
4. Are there other considerations in the layout of the room to make things easier to reach/decrease the odds of slipping or falling?
Thanks!!!!
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Just checking in. I finished with 7.5cm! Quite the journey this has been.
Now on to recovery. I finished lengthening 4 days ago but I'll stick around west palm beach for a few weeks until I can walk a little better before going home.
Im on my feet walking unassisted but the gait isn't great. Need the glute strength back to stop the swaying.
I developed numbness in both lower legs and nerve pain in the left. Thankfully things are improving.
Congrats bro!
Everyone - I'm out here in WPB and I wish I could show you guys OGfivesevener's walk/gait now - it looks great for being just a few weeks out from distraction. Very little to no sway and great knee bend / heel to toe action, I would say his walk looks 80% ish normal. It's all about putting in the time stretching all throughout distraction!
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1. Thanks!! I'm actually curious what your movement is like those first few weeks.
2. Ex: can you easily safely crawl around on the floor to get from bedroom to the floor? I guess then there is the issue of being able to stand up to reach the toilet after crawling though. Still, I wonder if crawling on all fours like a baby is safe (or if its not worth it)
3. I'm wondering if it would help to get a stool or something to get in the bed or if a stool is a hazard because it could slip/is too small?
4. Are there other considerations in the layout of the room to make things easier to reach/decrease the odds of slipping or falling?
Thanks!!!!
Thanks everyone. Still a ways to go before life is back to normal.
Cody,
1. Thanks!! I'm actually curious what your movement is like those first few weeks.
I was surprised I could be on my feet and moving around on crutches. I would switch back to the walker when tired.
2. Ex: can you easily safely crawl around on the floor to get from bedroom to the floor? I guess then there is the issue of being able to stand up to reach the toilet after crawling though. Still, I wonder if crawling on all fours like a baby is safe (or if its not worth it)
No crawling! lol. Wheelchair or Walker or Crutches
3. I'm wondering if it would help to get a stool or something to get in the bed or if a stool is a hazard because it could slip/is too small?
Most of us would just transfer from the Wheelchair/Walker/Crutches to the bed. I don't think it's much of an issue for most Stryde patients.
4. Are there other considerations in the layout of the room to make things easier to reach/decrease the odds of slipping or falling?
Nothing comes to mind. You just adapt to your environment. You'll have to prepare if transferring to the toilet or bathtub is an issue.
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Would love to get an update on how you’re doing.
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Wow, what a year it has been since I last updated. I was 1 month post lengthening with the last update. Now I'm coming up on 16 months post lengthening.
Like many others, once I was done lengthening and onto the recovery process, life just started to move on. I would think about logging back in every now and again but just not get around to it. But, I know if you're on this forum you'd like to hear about as many outcomes as possible. I can say my experience has been a positive one.
Overall, recovery has been smooth sailing and I feel blessed. I need to start considering a time to book rod-removal around Q2 - Q3 this year. As confident as I am with movement and getting around, I can't imagine being at 100% until the rods are out. I would gauge I'm at 80-85% in terms of movement and feeling normal.
Walking is normal and undetectable. I can jog but haven't tried for any significant distance, nor have I attempted a full-on run. There's no confidence in a full-on jump either. At the gym I keep the weights mild-moderate. No squats because I don't even want to consider the mechanics of it all at this point. I get on the leg press machine (no free weights), the leg extension, leg curls and the adduct/abduct machines. I've settled on not caring to push massive amounts of weight for the foreseeable future. But, rather just being in good health and decent physical shape.
In terms of pains, there is nothing I would call painful. My knees feel fine. I still have some numbness on my left shin area. I can't recall any episode of nerve pain for quite a long time now. Things still feel stiff if I keep my legs in any one position for a long time. Laying on either hip on any hard surface, I can feel things being tender there.
Again, my outcome has been positive overall. The last phase is going to be rod removal!
If anyone has any questions I will try my best to log back in every few days for a period of time before likely taking a break from the forums again. Hope everyone's doing okay through this crazy pandemic.
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Hey man, thanks for the diary. I'm glad you recovered well and got 7.5cm. love your tips and writing. Appreciate it man. Thinking about going to paleys soon
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In terms of pains, there is nothing I would call painful. My knees feel fine. I still have some numbness on my left shin area. I can't recall any episode of nerve pain for quite a long time now. Things still feel stiff if I keep my legs in any one position for a long time. Laying on either hip on any hard surface, I can feel things being tender there.
Not great to hear that you still have shin numbness after all this time as I've noticed lately that a lot of people have had persistent shin numbness a year or more after surgery. I've been having lots of nerve issues and my shins have been numb since about 3.5mm, so I'm pretty sure I'm going to be one of the people who is going to have numb shins for a long time T_T Do you remember at how many mms lengthened that your shin numbness started?
Glad everything else is going well for you though!
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Still having shin numbness is crazy, does it vary patient to patient? Or do all llers experience nerve pain/numbness?
Sitting with ur legs at the same position and having pain a year after is also discouraging
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Not great to hear that you still have shin numbness after all this time as I've noticed lately that a lot of people have had persistent shin numbness a year or more after surgery. I've been having lots of nerve issues and my shins have been numb since about 3.5mm, so I'm pretty sure I'm going to be one of the people who is going to have numb shins for a long time T_T Do you remember at how many mms lengthened that your shin numbness started?
Glad everything else is going well for you though!
The more I keep hearing about shin numbness, the more I feel like I shouldnt surpass 7cm internal femurs. If I really want to grow taller after that, then 5cm tibias later down the road. Optimal recovery is very important for me
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The more I keep hearing about shin numbness, the more I feel like I shouldnt surpass 7cm internal femurs. If I really want to grow taller after that, then 5cm tibias later down the road. Optimal recovery is very important for me
Belowthemean is only at 5cm and still have nerve pain (he's not done)
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Wow, what a year it has been since I last updated. I was 1 month post lengthening with the last update. Now I'm coming up on 16 months post lengthening.
Like many others, once I was done lengthening and onto the recovery process, life just started to move on. I would think about logging back in every now and again but just not get around to it. But, I know if you're on this forum you'd like to hear about as many outcomes as possible. I can say my experience has been a positive one.
Overall, recovery has been smooth sailing and I feel blessed. I need to start considering a time to book rod-removal around Q2 - Q3 this year. As confident as I am with movement and getting around, I can't imagine being at 100% until the rods are out. I would gauge I'm at 80-85% in terms of movement and feeling normal.
Walking is normal and undetectable. I can jog but haven't tried for any significant distance, nor have I attempted a full-on run. There's no confidence in a full-on jump either. At the gym I keep the weights mild-moderate. No squats because I don't even want to consider the mechanics of it all at this point. I get on the leg press machine (no free weights), the leg extension, leg curls and the adduct/abduct machines. I've settled on not caring to push massive amounts of weight for the foreseeable future. But, rather just being in good health and decent physical shape.
In terms of pains, there is nothing I would call painful. My knees feel fine. I still have some numbness on my left shin area. I can't recall any episode of nerve pain for quite a long time now. Things still feel stiff if I keep my legs in any one position for a long time. Laying on either hip on any hard surface, I can feel things being tender there.
Again, my outcome has been positive overall. The last phase is going to be rod removal!
If anyone has any questions I will try my best to log back in every few days for a period of time before likely taking a break from the forums again. Hope everyone's doing okay through this crazy pandemic.
Do you ever have to "think" about any daily activities? For example, getting in and out of low vehicles, standing up while sitting on a low stool, climbing/descending stairs with no handrails, etc.
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Belowthemean is only at 5cm and still have nerve pain (he's not done)
Thats not what I'm referring to. Im referring to lingering pain aafter distraction.
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Thats not what I'm referring to. Im referring to lingering pain aafter distraction.
Numbness during the distraction phase is probably not going to influence your decision to go past 7cm or not. You'll likely have more pressing concerns than whether you'll have lingering numbness later on. For a lot of people it starts way before 7cm as well. You could get lingering numbness doing 5cm on the femurs, so I don't think it's a good example for a reason to stop at 7cm.
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.in my opinion if possible, slowing down lengthening is a good preventative for nerve damage reduction. Obviously with chance of preconsolidation that is not reality many times, and there is just an ether of uncertainty that isn't worth trying to figure out when it's your legs and a 10,000$ USD rebreak surgery on the line.
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Not great to hear that you still have shin numbness after all this time as I've noticed lately that a lot of people have had persistent shin numbness a year or more after surgery. I've been having lots of nerve issues and my shins have been numb since about 3.5mm, so I'm pretty sure I'm going to be one of the people who is going to have numb shins for a long time T_T Do you remember at how many mms lengthened that your shin numbness started?
Glad everything else is going well for you though!
I believe it was a little later than you. I know it sounds crazy to not think it a big deal, but it's hardly been a big deal this entire year. And it is very gradually getting better.
I am uncertain. But I have a feeling if I had kept up my stretching (I haven't) to anywhere near the extent they have us do in PT at Paley's, that the numbness could be improved faster.
You would think there'd be some motivation to stretch more. But nope lol
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Still having shin numbness is crazy, does it vary patient to patient? Or do all llers experience nerve pain/numbness?
Sitting with ur legs at the same position and having pain a year after is also discouraging
Nothing i'd consider painful. Life is good. Legs are fine. Once rods are out and wounds healed. Then, things will really be good.
I remember being told a rough percentage of people getting nerve pain. Now I can't remember. The intensity varies quite a bit between patients. Mine really wasn't as bad as a few others. Come to think of it though, a good number of us that were there at the same time did have some degree of nerve pain.
I do believe that keeping up with stretches helps keep it from getting worse and alleviating. I would almost warn to expect to get it to some degree.
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The more I keep hearing about shin numbness, the more I feel like I shouldnt surpass 7cm internal femurs. If I really want to grow taller after that, then 5cm tibias later down the road. Optimal recovery is very important for me
I went through this exact thought process. It was somewhere around 6-6.5cm where I was discussing things with Dr Robbins and he agreed with me on stopping at 7cm if I had concerns about the numbness. And he loves hearing when LLers take more cautious action.
I recall now that once I got to 7cm, I took a few days off lengthening before turning my ERC back in. It only took those 3 days (or 2) off of lengthening where everything just started feeling better. I was still stretching. That's all I needed to decide to continue on to 7.5.
So I recall letting everyone that started a bit behind me to have that as an option if they get to a certain point of exhaustion. A little break will do wonders.
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Do you ever have to "think" about any daily activities? For example, getting in and out of low vehicles, standing up while sitting on a low stool, climbing/descending stairs with no handrails, etc.
Yessssss. All along the recovery period. Less frequently with certain activities as time goes on. And you get more confidence once Xrays show you're fully consolidated and you get the Ok from the docs.
I can't remember specifics and it'll vary with each LLer. I happened to consolidate pretty slowly. I believe I got the OK with my 9 month Xrays. I felt pretty decent at 6 months.
Now I can walk distances and do stairs as well as most. Getting up from a very low stool, my mind goes through the process of "Ok, here we go, a little stiffness to push pass". Sometimes I'll do a slight push off with my hands. But nothing where anyone notices or has a second thought.