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Bilateral Femur with Dr. Paley 11/2022

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erenyeager1
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Posted on Jan 6, 2023, 5:36 am
#41
Quote from: Activatedxx on January 05, 2023, 08:23:53 PMSome advice is to get a professional physical therapist. 95% won’t do the proper technique and even if you know it, you will never push yourself as much as someone else doing it. My hamstrings got really tight during 7-8cm mark and it was terribly painful to straighten them out flat. My wife would do it but she would feel bad cause I’d be in pain. My PT I ended using (insurance covered) had zero regard for my feelings and made me tough it out. It sucked but if not for them I would have been stuck with a bent leg

This is great advice. Once you get tight it is really difficult to do the stretches yourself. And you don’t want to put your families in a position where they may hurt you and feel really bad. I have been searching for PT down here in WPB but can’t find any that comes to the hotel room. I am still looking. Also deep tissue massage really helps. I had trouble finding one who comes to hotels too, but later a patient who was leaving referred me to a really good lady who I really liked. I do it once a week and it’s been good. If anyone who’s also in WPB needs her contact, feel free to DM me.
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erenyeager1
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Posted on Jan 6, 2023, 5:44 am
#42
Quote from: TheDream on January 05, 2023, 09:49:27 PMI think the idea is that if you had a graph over the pressure exerted over time on the soft tissue from the current method you’d see jumps from the .25 mm steps, and then like a slow drop from the tissue lengthening. If one could control this rise in pressure from the lengthening in a continous manner then it could simulate the natural process better.

Anyway, thanks for your reply and best of luck with your journey. Wishing you good fortune, and you are in the best of hands so I’m sure you’ll do well.

It will be nice if they can make it work. It is annoying that once you do a turn you feel a little tighter. They probably are prioritizing weight bearing nails. That will make a big difference for the patients. The My life will be 95% normal if I am weight-bearing and can walk, though I did gain a lot of new perspectives when being disabled. Anyways, thanks for the good wishes and feel free to ask me any questions.
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erenyeager1
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Posted on Jan 6, 2023, 5:49 am
#43
Also, after moving 3 times, my advice for people coming to Paley for surgery is just stay in the Homewood suites. Unless you have at least two people with you and have a car, in which case you probably can consider Airbnb, staying at the homewood would be the easiest for you. You will also get to social and learn other people’s experience. People who do this surgery are really nice to each other and would be happy to go out of their way to give you good advice and support.
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the188cmdream
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Joined: Nov 2022
Posted on Jan 6, 2023, 1:45 pm
#44
Quote from: erenyeager1 on January 06, 2023, 05:49:02 AMAlso, after moving 3 times, my advice for people coming to Paley for surgery is just stay in the Homewood suites. Unless you have at least two people with you and have a car, in which case you probably can consider Airbnb, staying at the homewood would be the easiest for you. You will also get to social and learn other people’s experience. People who do this surgery are really nice to each other and would be happy to go out of their way to give you good advice and support.

How much do you think it would cost (everything included) if you stay at the Homewood suite the whole time?
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erenyeager1
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Posted on Jan 6, 2023, 9:31 pm
#45
The cost varies a lot depends on the time of the year. From late Dec to early April, it is peak season in palm beach and the price could be almost double that of the summer price. If you come here for winter, which I think is better because good weather and fewer lengthening patients, it will probably cost you about 15k for housing for 100 days.
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seattleperson
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Posted on Jan 7, 2023, 3:54 am
#46
i need the PT lady's contact , thank you!
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racecarworm
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Joined: Mar 2021
Posted on Jan 7, 2023, 7:23 am
#47
Hey man! How are you doing?
I read your diary and heard that you liked winter sports. I also did precice 2.2 a while back, and am still athletic enough to hit black diamonds! I went skiing 2 weeks ago and my legs could handle it, although my knees & quads were really tight afterwards haha.

Also, stretch as much as you can, like seriously 2 hours+ everyday, my only regret was probably not stretching enough. The effort will save you from sooo much pain once you hit 5cm.

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erenyeager1
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Posted on Jan 7, 2023, 5:40 pm
#48
Quote from: seattleperson on January 07, 2023, 03:54:04 AMi need the PT lady's contact , thank you!

Sent it to you via dm

Quote from: racecarworm on January 07, 2023, 07:23:02 AMHey man! How are you doing?
I read your diary and heard that you liked winter sports. I also did precice 2.2 a while back, and am still athletic enough to hit black diamonds! I went skiing 2 weeks ago and my legs could handle it, although my knees & quads were really tight afterwards haha.

Also, stretch as much as you can, like seriously 2 hours+ everyday, my only regret was probably not stretching enough. The effort will save you from sooo much pain once you hit 5cm.



Hey man! Great to know that you were able to get back on snow! How long after surgery are you now? I was planning on getting on snow about a year after taking out the rods because I was worried that the new bones may be brittle with the rods in them.

Thanks for the advice! I need to do more stretches for sure. I am at 3.4 cm today and just got a first taste of nerve pain earlier today. It was like burning and the front of my left tibia can’t feel much, really numb. But it went away after an hour. It wasn’t that painful just uncomfortable and strange feeling. Definitely need to do more stretching and exercises to ensure this thing doesn’t last when it pops up.
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racecarworm
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Posted on Jan 7, 2023, 7:00 pm
#49
I did my surgery in March 2021, so it's been nearly 2 years now, and I have my nail removal in 2 weeks. I still have the rods in and was completely fine, although I went skiing in Big Bear California so it wasn't insanely cold.

Tramadol helped me a lot with nerve pain, and from my experience the next 2-3 weeks will hurt a lot. But after that it sort of goes down. I honestly think its better to take pain killers and keep stretching rather than trying to tolerate the pain.
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erenyeager1
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Posted on Jan 9, 2023, 12:18 am
#50
Quote from: racecarworm on January 07, 2023, 07:00:16 PMI did my surgery in March 2021, so it's been nearly 2 years now, and I have my nail removal in 2 weeks. I still have the rods in and was completely fine, although I went skiing in Big Bear California so it wasn't insanely cold.

Tramadol helped me a lot with nerve pain, and from my experience the next 2-3 weeks will hurt a lot. But after that it sort of goes down. I honestly think its better to take pain killers and keep stretching rather than trying to tolerate the pain.

That’s great. Congrats man! You are almost at the end of you LL journey. Thanks to some patients I met in the first days post hospital discharge, I still have about 23 pills of oxycodone left. Important tip to future LLer: save some opioids for the end and don’t use it all in the first few weeks. I can’t imagine pushing through the last 1-2 cm without oxy and only with Tylenol. I mean it’s definitely doable but it’ll be hell a lot more difficult. I am at 3.5 cm today. I am planning to start taking oxy at 5.7 cm, so I can have one a day til the end. I regret a little that I didn’t manage to save more, so I can starting taking it at 4.x cm.

I am standing and walking quite often, like I stand for 1-2 minutes every an hour or so. I also played 5 hours of Witcher, though sitting for a long time is very very energy consuming. I was sweating towards the end.
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