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Author Topic: A small hope to connect in person with Paley patients  (Read 831 times)

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TommyC

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A small hope to connect in person with Paley patients
« on: September 12, 2023, 04:41:31 AM »

Hi, dear fellow members of the community

I have never been as anxious as I have in the past 2 month of my life, as I can feel time clicking by second by second as I come closer to my surgery date.

It’s been my dream to be 180 cm tall, but my parents warn me of the dangers of the surgery, that I will walk weird and crippled for the rest of my life, and that I will regret this choice. I am pursuing in the career of actors, and I am very afraid that I cannot walk looking very normal anymore after even 1 year of recovery.

I’ve been on the forum a lot lately, looking through everyone’s posts, and listening to members of the community sharing their thoughts with me. To be honest I am super thankful for a lot of experiences shared and advices given. The general consensus seems to be that if you are able to operate at Dr. Paley’s hospital, you should as it is the safest choice and most prestigious.
However, I’ve been feeling more and more torn apart. I’ve noticed that in general, seems to be two types of responses.


On one side:
- Of many of the posts I’ve read, is safe to conclude from the community that:
    - if we choose femur instead of tibia, and lengthen only up to 5-6cm, the risk should be very low.
    - Around 99% patients at undergo limb lengthening at Dr. Paley’s recover very well and don’t suffer from complications.

- After the removal of the nail, we can recover ~90% to 95% of burst power from the lower half of the body.

- One of Dr.Paley’s patient mentioned mentioned that maybe 1 in 80 actually write posts. Most patients like to stay low-key, and merge into their lives, maybe even forgetting a lot of the time that they have undergone surgery because everything’s gone back to normal.
- Despite so many surgeries performed at Dr. Paley’s institute, there is almost no posts of negative feedback in the past 5 years.


However, on the other side:

- Someone mentioned that in most videos of patient showing demonstration of walking, running or jumping, they seem to lack some strength coming from the lower body in the initial stages of action. Especially with running or big jumps, the initial momentum seems to be coming more from the thrust of the arms? (Insert Video Link)

- Of the few demonstration videos of recovered patients playing basketball, none of them seem to be able to do a proper layup where the last launch seems to be a bigger jump. (Link two video)

- Almost all of the videos that we can access and find are uploaded by hospital accounts on YouTube (especially the hospitals with not really a good reputation such as LiveLifeTaller and —-). Other videos shared are mostly by YouTubers that have gone through limb lengthening, and share their experiences. But there are only a few and not really a big population.

- I watched the videos of recovered patients (3 month - 2 years) with my acting teacher on the train the other day, and she pointed out that a lot of the patients seem to walk very ‘carefully’ and controlled. It seemed normal at first. If you look closely, it didn’t seem very relaxed though. I read in one post of our community member and he said that he can walk and appear  ‘very normal’ for an amount of time (link). I guess what I’m trying to say is that it is possible that the post recover videos that are shown on Youtube could possibly include a hint of bias. Especially videos from hospital accounts that could have commercial benefits also. These experiences just made me feel very insecure about what the truth really looked like.


I’ve already booked the surgery at Paley Institute which is next month, and have made the payment. Postponing or changing the surgery will definitely have its financial costs,
But I just can’t convince myself deep down that it’s going to be okay, and for good reason.

I promised my mom and dad, and myself that I will be responsible with my choices. I guess I’ve come to realize that the only way I can be responsible for myself is to really see it with my own eyes, with patients who have undergone limb lengthening at Dr. Paley’s institute.

I know this is like dropping a pin in the ocean. I totally understand that most post-surgery patients do not really come back to the community, and even less are from Dr. Paley’s hospital. But if there is anyone out there, who is willing to give me an address no matter where you are in the world, maybe if you can spare perhaps 10 minutes of your coffee break, I would love to hear your experience on how you’ve been after re-entering your life. If you have time anywhere between October 15th and to January, and is willing to share a little bit of your experience, it would be my greatest honor to meet you. I will bring nice gifts from my country as well:)

Sincerely,

Tom
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TommyC

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Re: A small hope to connect in person with Paley patients
« Reply #1 on: September 12, 2023, 04:43:20 AM »

Sorry, I forgot to include the video forum links. I will be adding them soon as I find them :D
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Thekollecter

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Re: A small hope to connect in person with Paley patients
« Reply #2 on: September 12, 2023, 03:51:31 PM »

Bump
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tempthrowaway

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Re: A small hope to connect in person with Paley patients
« Reply #3 on: September 12, 2023, 11:28:04 PM »

Bump
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JJ299

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Re: A small hope to connect in person with Paley patients
« Reply #4 on: September 13, 2023, 02:26:08 AM »

It's good you are researching a lot about the procedure and thinking carefully about it, but deeply analyzing into people walking (initial burst, rhythm, behavior, etc) is kind of excessive. Even for people that didn't get the surgery if you look how they walk/running in detail you can probably see the imperfections as well ( there are even coaches for proper walking posture as well ). I even have several friends I go hiking with and I can see the imperfections if I look really carefully but 99% of the time it's nothing and they probably don't even think about it.
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Thekollecter

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Re: A small hope to connect in person with Paley patients
« Reply #5 on: September 13, 2023, 05:56:29 AM »

There will be long term  problems with this surgery when you turn old even if you lengthen safe amounts just  remember that
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reaching_goals

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Re: A small hope to connect in person with Paley patients
« Reply #6 on: September 14, 2023, 12:07:03 AM »

I agree with JJ299. Dont overthink it. You know enough to have gone through with this now just follow through and depend on the doctors, nurses, and pts's to answer all other questions you'll have. You're doing this at the Paley Institute so you're in great hands. You'll meet other patients there who'll also help you along the way as long as you are open with other patients. Trust in yourself at this point to follow through. No matter how hard it gets just remember if you stay strong youll come out in 4-7 months more happier than ever.
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AllinStryde

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Re: A small hope to connect in person with Paley patients
« Reply #7 on: September 14, 2023, 04:53:27 PM »

Message me Tom.  A Paley veteran here.
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Stretch

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Re: A small hope to connect in person with Paley patients
« Reply #8 on: September 14, 2023, 06:38:20 PM »

There will be long term  problems with this surgery when you turn old even if you lengthen safe amounts just  remember that

Would you explain the specific problems. Any supporting studies etc?
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