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Author Topic: How would you react if it fails?  (Read 966 times)

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Unknown

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How would you react if it fails?
« on: April 19, 2021, 04:18:34 AM »

While it's good to be optimistic for surgery, how would yall react if things dont go as planned and you couldnt walk properly anymore or even crippled? At that point I would honestly have an existential crisis.
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TheDream

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Re: How would you react if it fails?
« Reply #1 on: April 19, 2021, 04:30:44 AM »

Well that is the worst case scenario and I think anyone would be devastated.
I don’t think it ever happens with experienced first world doctors though.

I’d say a more realistic ‘bad scenario’ is some pain, tiredness and general limited mobility on a permanent basis. My impression is that LL is a fine balance between increased height and limited mobility. I don’t think you can ever return to pre-LL mobility but if things go well the loss of mobility might be 10-15%. I guess for me personally, not being able to walk stairs, go for a run or do sports without feeling annoying pain, getting tired very fast would be a failure. I would probably feel quite sad about it but try to enjoy the gained height. I think, for anyone who has liven with legitimate height nerosis, being able to socialize with people while being happy with your height and not worrying about is a big enjoyment. So I would still try to enjoy those situations as much as possible.
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Serilium

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Re: How would you react if it fails?
« Reply #2 on: April 19, 2021, 04:31:43 AM »

massive regret and depression
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Medium Drink Of Water

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Re: How would you react if it fails?
« Reply #3 on: April 19, 2021, 06:59:15 AM »

After being in a wheelchair for five months I can say it's not so bad.  Wheelchair sports are fun, and you will get a free pass on height from almost everyone.

I got the chance to play wheelchair basketball several years later and really showed up everyone; they had no idea I had experience. ;D
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DonBones

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Re: How would you react if it fails?
« Reply #4 on: April 19, 2021, 07:26:52 AM »

"you couldnt walk properly anymore or even crippled"

Does anyone know if something like this ever happened at Paley's hopsital? There do not seem to be negative testimonials about him other than the usual extreme pain and long recovery times.
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First Surgery - Prof Betz - 28th July 2021 🇩🇪
Nail Removal - Dr Becker - 13th December 2023 🇩🇪
Lengthened: 5.00cm
Height: 180cm
Current Phase: Enjoying New Height :)

RealLostSoul

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Re: How would you react if it fails?
« Reply #5 on: April 19, 2021, 12:54:45 PM »

"you couldnt walk properly anymore or even crippled"

Does anyone know if something like this ever happened at Paley's hopsital? There do not seem to be negative testimonials about him other than the usual extreme pain and long recovery times.

Yes there have been. It‘s a risk you have with every doctor. There is this “my crippled leg“ website where someone apparently had a bad experience with paley.
You have to take the risk if you want to do this. Staying safe is important but besides having an experienced surgeon and a safe and good recovery, there is also a lot of luck included honestly.
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limbcllnea

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Re: How would you react if it fails?
« Reply #6 on: April 19, 2021, 01:21:03 PM »

You have to take the risk if you want to do this. Staying safe is important but besides having an experienced surgeon and a safe and good recovery, there is also a lot of luck included honestly.

The cold hard truth.
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Serilium

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Re: How would you react if it fails?
« Reply #7 on: April 19, 2021, 01:33:07 PM »

"you couldnt walk properly anymore or even crippled"

Does anyone know if something like this ever happened at Paley's hopsital? There do not seem to be negative testimonials about him other than the usual extreme pain and long recovery times.

Not with CLL
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HeightGain

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Re: How would you react if it fails?
« Reply #8 on: April 19, 2021, 01:37:32 PM »

Paley does very complex cases aside from cosmetic. That is not a cosmetic case.

Please check everything that is said on this forum as there is a lot of things that are said as fact which aren't
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redwedding

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Re: How would you react if it fails?
« Reply #9 on: April 19, 2021, 01:39:10 PM »

The failures can be extreme or minor. The extreme failures are the amputation due to the deep bone infection, the pulmonary embolism which can lead to the long term complications in some cases, the nerve pain which never goes away. The extreme failures can be reduced  by 50% by doing the one leg first and then the other. After the one leg if you feel it was the worst decision of your life then you have ruined only the one leg.

The more minor failures are functional limitations like pain while standing or walking the long distances or early onset of the arthritis. These are reduced by doing the both legs together and stopping at a short distance of 5cm or lesser. When you stop both the legs are equal and you are recovered soon. Nobody knows what happens when you stretch the legs so you have to take the risk about this type of failure.

hope this helped you
sergio
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If deep bone infection and the pulmonary embolism was not a risk I will do this operation tomorrow!

DonBones

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Re: How would you react if it fails?
« Reply #10 on: April 19, 2021, 02:31:30 PM »

The failures can be extreme or minor. The extreme failures are the amputation due to the deep bone infection, the pulmonary embolism which can lead to the long term complications in some cases, the nerve pain which never goes away. The extreme failures can be reduced  by 50% by doing the one leg first and then the other. After the one leg if you feel it was the worst decision of your life then you have ruined only the one leg.

The more minor failures are functional limitations like pain while standing or walking the long distances or early onset of the arthritis. These are reduced by doing the both legs together and stopping at a short distance of 5cm or lesser. When you stop both the legs are equal and you are recovered soon. Nobody knows what happens when you stretch the legs so you have to take the risk about this type of failure.

hope this helped you
sergio

That sounds quite extreme. Surely Paley wouldn't let that happen? If I asked him about this in a consultation, is there a legal requirement for him to disclose it to me?
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First Surgery - Prof Betz - 28th July 2021 🇩🇪
Nail Removal - Dr Becker - 13th December 2023 🇩🇪
Lengthened: 5.00cm
Height: 180cm
Current Phase: Enjoying New Height :)

Ahd1978

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Re: How would you react if it fails?
« Reply #11 on: April 19, 2021, 02:40:47 PM »

I did my surgery with paley

In fact your chances of him answering this to you are better pre surgery

1. Would there be a rate in change of blood flow post lengthening as now blood needs to travel longer and furthermore does it change dynamics of heart.

2. Long term implications after  40 as I’m 43 and I am breathing much heavier post this surgery.

3. As for fat embolism he says it’s very few cases but I was one of them so how reliable is that information I’m not aware

4. Post care he has to review your x rays or atleast over see or make it clear you won’t do surgery. I made this mistake and now I’m in hands of his assistants.

He made it clear to me I would only do surgery and rest his team would follow up.

I believe what to do and not to during distraction is critical

I have had to actually learn hard way and from forum adjust my distraction rates slowly

Why should one do that when u r paying 100k usd.

Being ones own doctor is worst feeling to go through with uncertainty.

Just my suggestions ask each and every question that runs through your mind

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DonBones

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Re: How would you react if it fails?
« Reply #12 on: April 19, 2021, 03:13:53 PM »

I did my surgery with paley

In fact your chances of him answering this to you are better pre surgery

1. Would there be a rate in change of blood flow post lengthening as now blood needs to travel longer and furthermore does it change dynamics of heart.

2. Long term implications after  40 as I’m 43 and I am breathing much heavier post this surgery.

3. As for fat embolism he says it’s very few cases but I was one of them so how reliable is that information I’m not aware

4. Post care he has to review your x rays or atleast over see or make it clear you won’t do surgery. I made this mistake and now I’m in hands of his assistants.

He made it clear to me I would only do surgery and rest his team would follow up.

I believe what to do and not to during distraction is critical

I have had to actually learn hard way and from forum adjust my distraction rates slowly

Why should one do that when u r paying 100k usd.

Being ones own doctor is worst feeling to go through with uncertainty.

Just my suggestions ask each and every question that runs through your mind

Thanks. Perhaps he can't follow up with you because he is not in Poland. Or will he not see patients in Florida either after the surgery?
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First Surgery - Prof Betz - 28th July 2021 🇩🇪
Nail Removal - Dr Becker - 13th December 2023 🇩🇪
Lengthened: 5.00cm
Height: 180cm
Current Phase: Enjoying New Height :)

Ahd1978

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Re: How would you react if it fails?
« Reply #13 on: April 19, 2021, 04:09:43 PM »

He usually doesn’t see patients unless major complication

Other guys who did it in Florida were with robbins

He is coming to poland in may and I am sure I would see him

But then I’m starting consolidation

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DonBones

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Re: How would you react if it fails?
« Reply #14 on: April 19, 2021, 04:23:09 PM »

He usually doesn’t see patients unless major complication

Other guys who did it in Florida were with robbins

He is coming to poland in may and I am sure I would see him

But then I’m starting consolidation

How are you doing on the whole? Was the complication dealt with successfully? Are you on track for your goal?
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First Surgery - Prof Betz - 28th July 2021 🇩🇪
Nail Removal - Dr Becker - 13th December 2023 🇩🇪
Lengthened: 5.00cm
Height: 180cm
Current Phase: Enjoying New Height :)

Ahd1978

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Re: How would you react if it fails?
« Reply #15 on: April 19, 2021, 06:30:11 PM »

Well fat embolism was yes. I was in ICU for 3 days then moved to normal ward.

Till 6 cm I was ok

But now I don’t know if it’s fatigue or what but my breathing is very heavy and I am exhausted.

I think I’m going to quit distraction post my blood results which are tomorrow

Checking for dimmer levels and other vitals

I’m 43 so an older guy has to worry lot more about other things. One of them bearing health of most of organs. For younger I presume it’s easier.

So blood tests would identify why I have such level of breathing and why so much fatigue

It’s not an easy surgery by any means

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Stretch

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Re: How would you react if it fails?
« Reply #16 on: April 19, 2021, 06:54:14 PM »

Well fat embolism was yes. I was in ICU for 3 days then moved to normal ward.

Till 6 cm I was ok

But now I don’t know if it’s fatigue or what but my breathing is very heavy and I am exhausted.

I think I’m going to quit distraction post my blood results which are tomorrow

Checking for dimmer levels and other vitals

I’m 43 so an older guy has to worry lot more about other things. One of them bearing health of most of organs. For younger I presume it’s easier.

So blood tests would identify why I have such level of breathing and why so much fatigue

It’s not an easy surgery by any means


Wow you underwent LL in your 40s. I have not heard many accounts at this age.

Here I am concerned of my reaction to the procedure in my 30s.

Are you now content with your height, considering the complications mentioned was it worth the 100k $?
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Ahd1978

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Re: How would you react if it fails?
« Reply #17 on: April 19, 2021, 08:37:19 PM »

Started at 176,5

Now at 182.5

I have distracted close to 6,5 cm but when measuring I land at 182.5cm.

I will go for extra .5 to just touch 183 cm

Yes it is awesome but this fatigue I wanna get to bottom of it.

I wasn’t happy with post op care as I have been my own doctor.

Getting solid physio helps a lot. Like when I was very tight physio put bands on my knees and thighs that helped me distract W lesser pain.

Good follow up makes it all worth it

I have be persistent with paley office that I want blood tests every 2 weeks I will pay because I don’t want any dynamics of my organs to get affected.

The breathing I should be able to figure out post blood tests tomorrow

Yes it’s worth it. But it’s long drawn process. Yes I am only guy jn 40s who’s done this. Some guys in late 30s but 40s I’m not sure

Hence why I say 6 cm is where it’s age zone. After 6 I have been having complications in breathing already. It just feels something is changing drastically nerves irritate lot more. And now I can feel muscle loss in legs it’s different loss. Not the one where u regain. I feel it getting weaker internally.

That’s why I’m stopping at 6.5 so I’m pushing 10 percent above safe limits and done

Hope this helped

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Want-3-inches

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Re: How would you react if it fails?
« Reply #18 on: April 19, 2021, 08:42:15 PM »

Started at 176,5

Now at 182.5

I have distracted close to 6,5 cm but when measuring I land at 182.5cm.

I will go for extra .5 to just touch 183 cm

Yes it is awesome but this fatigue I wanna get to bottom of it.

I wasn’t happy with post op care as I have been my own doctor.

Getting solid physio helps a lot. Like when I was very tight physio put bands on my knees and thighs that helped me distract W lesser pain.

Good follow up makes it all worth it

I have be persistent with paley office that I want blood tests every 2 weeks I will pay because I don’t want any dynamics of my organs to get affected.

The breathing I should be able to figure out post blood tests tomorrow

Yes it’s worth it. But it’s long drawn process. Yes I am only guy jn 40s who’s done this. Some guys in late 30s but 40s I’m not sure

Hence why I say 6 cm is where it’s age zone. After 6 I have been having complications in breathing already. It just feels something is changing drastically nerves irritate lot more. And now I can feel muscle loss in legs it’s different loss. Not the one where u regain. I feel it getting weaker internally.

That’s why I’m stopping at 6.5 so I’m pushing 10 percent above safe limits and done

Hope this helped

Do you think in your current state you can do a remote desk job 6 hours a day?
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Ahd1978

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Re: How would you react if it fails?
« Reply #19 on: April 19, 2021, 08:50:57 PM »

Yes u can

Remote desk job yes

But when tired rest

I was have conf calls in icu because of nature of my work

In hind sight o should have rested more and avoided stress which also I believe has affected my breathing.

At this age and after crucial surgery your immunity isn’t same so I wish I had been more at ease but now a lesson shared and knowledge shared with all
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TheDream

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Re: How would you react if it fails?
« Reply #20 on: April 19, 2021, 09:40:30 PM »

Hence why I say 6 cm is where it’s age zone. After 6 I have been having complications in breathing already. It just feels something is changing drastically nerves irritate lot more. And now I can feel muscle loss in legs it’s different loss. Not the one where u regain. I feel it getting weaker internally.

That’s why I’m stopping at 6.5 so I’m pushing 10 percent above safe limits and done

Ahd, how did the muscles/nerves feel like around your femur the first 1 to 4 cm of lengthening? Was it noticeably less tense and irritating than lengthening past 4 cm?
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Going-For-Three

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Re: How would you react if it fails?
« Reply #21 on: April 19, 2021, 10:34:21 PM »


Yes it is awesome but this fatigue I wanna get to bottom of it.

Are you getting enough calories? I know sleep is probably more sporadic, but I'd imagine anyone would be somewhat fatigued during LL since your body is exerting energy and nutrients for osteogenesis.
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Tartar

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Re: How would you react if it fails?
« Reply #22 on: April 19, 2021, 11:06:03 PM »

Started at 176,5

Now at 182.5

I have distracted close to 6,5 cm but when measuring I land at 182.5cm.

I will go for extra .5 to just touch 183 cm

Yes it is awesome but this fatigue I wanna get to bottom of it.

I wasn’t happy with post op care as I have been my own doctor.

Getting solid physio helps a lot. Like when I was very tight physio put bands on my knees and thighs that helped me distract W lesser pain.

Good follow up makes it all worth it

I have be persistent with paley office that I want blood tests every 2 weeks I will pay because I don’t want any dynamics of my organs to get affected.

The breathing I should be able to figure out post blood tests tomorrow

Yes it’s worth it. But it’s long drawn process. Yes I am only guy jn 40s who’s done this. Some guys in late 30s but 40s I’m not sure

Hence why I say 6 cm is where it’s age zone. After 6 I have been having complications in breathing already. It just feels something is changing drastically nerves irritate lot more. And now I can feel muscle loss in legs it’s different loss. Not the one where u regain. I feel it getting weaker internally.

That’s why I’m stopping at 6.5 so I’m pushing 10 percent above safe limits and done

Hope this helped
You are still in a so early stage that you can’t pretend nothing more than this. Being tired is normal, you are not even in consolidation. The worst is gone luckily. You’ll be always better.
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Ahd1978

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Re: How would you react if it fails?
« Reply #23 on: April 20, 2021, 04:28:27 AM »

Thanks for questions

I went for 1mm first 3.5 cm

I think that was a mistake. I should have done only .75.

Regeneration safe limits are .66mm so to push 10 percent more is ok.

I was so tight in beginning that I was taped up everywhere. Tapes hold certain muscles. Like abductors knee area thigh muscle I taped it all as each muscle was getting stiff and trying to put more pressure. I wouldn’t say it was pleasant.

Other wise at .75 it would have been breeze.

Nerve tingling started post 5 cm which is sign that We are crossing the limits it can handle.

Body is a Beautiful machine. If u truly analyse CLL the work done by any surgeon is only to prep the body. It’s body that does rest of the work. Callus forming. Adjusting to new growth to vessels to blood flow. I mean the body is best surgeon of it all.

So from all these experiences one thing is for sure I will listen more to my body than any surgeon in respect of what I truly feel internally.

I have had irregular heart beat twice so far and I was told distraction doesn’t affect breathing or vessels. But I am not a doctor. However every time I distract I feel heavier in breathing.  Is it tightness. ?

I don’t know these questions hence I am in figuring out stage. Doing bloods which is think should be mandatory every 2 weeks. Just x rays are not enough.

Even healthy young guys get pulmonary embolism or dvt. Why wait I say for something bad. Why can’t tests been done so we can avoid stuff.

I wil have my x rays too this week I had an ambitious goal to get to 184.5 and settle at 184 day height which I have no accepted to be at 183 cm day height and I wil be happy.

To sleep every night with heavy breathing is not joyful and to push body to extreme limits isn’t joy either.

I have mentioned this before in 40s body starts to change. I was super athletic till late 30s. My spirit is same. Just body doesn’t react at same level.

So I can only say from my experience stay within 10 to 15 percent of safe limits. You may handle 8 cm now but in future it wil catch up.

And remember paley is 65 in 20 years he would be 85 and no one is going to answer to your queries then. We as humans love to be dependant on doctors as we think they are saviours.  Doctors are blessing with their respective skill set.

But we know our bodies best.

So chose wisely

Just to add in here my acl doctor was one of best German docs and post my first surgery he left bone splinters in my knee area and I had to do second op which weakened knee further. So no matter who doc is once u open up body it never stays same and in future if you get lazy with physio or excercising you will pay for it with pain and weakness.

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