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Author Topic: chasing a lifetime dream  (Read 24358 times)

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a

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Re: chasing a lifetime dream
« Reply #93 on: September 04, 2020, 06:33:43 PM »

Good luck Sunshine,

Could you please do me a favor and ask Mr. BULDU if it would be possible for me to do .75 mm per day instead of 1mm on femurs ?

Because I also am considering him and I would like to hear his response.

Best Regards
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drxboom

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Re: chasing a lifetime dream
« Reply #94 on: September 04, 2020, 06:52:02 PM »

keep going sunshine what kind of painkillers do you use? I don't want to use nsaid lol: D
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Sunshine

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Re: chasing a lifetime dream
« Reply #95 on: September 04, 2020, 07:04:42 PM »

Good luck Sunshine,

Could you please do me a favor and ask Mr. BULDU if it would be possible for me to do .75 mm per day instead of 1mm on femurs ?

Because I also am considering him and I would like to hear his response.

Best Regards
Hey a,
I forwarded your question to him and sure will let you know his answer. From what I read on this forum is the amount of daily lengthening is tailored to your bone generation. If your bone generation tends to be slow your doctor will recommend you slow down daily distraction to less than 1 mm to avoid non-union! If your body is really good at bone generation your doctor may tell you to lengthen more than 1 mm per day to avoid premature union! The 1 mm daily distraction is a standard but ultimately your doctor will tailor your daily distraction amount to your body's ability to generate bone.
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Sunshine

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Re: chasing a lifetime dream
« Reply #96 on: September 04, 2020, 07:18:24 PM »

keep going sunshine what kind of painkillers do you use? I don't want to use nsaid lol: D
Thanks drxboom!
My doctor prescribed me 3 painkillers: Paracetamol Dolorex Novalgin. I'm not a fan of painkillers and only used paracetamol as a last resort lol
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Sunshine

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Re: chasing a lifetime dream
« Reply #97 on: September 04, 2020, 07:24:13 PM »

a,
so Dr. Buldu just replied and says if your bone union is good he recommends 1mm, if it's slow then he would recommend you lengthen less than 1 mm per day!
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a

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Re: chasing a lifetime dream
« Reply #98 on: September 04, 2020, 07:51:53 PM »

Actually, I think safety is more important and no matter how good my bone consolidation is, I'd prefer going with 0.75mm in order to keep my muscles SAFER. Thanks for the reply though! Again, best of luck Sunshine!

Regards
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Hagane

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Re: chasing a lifetime dream
« Reply #99 on: September 04, 2020, 08:10:33 PM »

Actually, I think safety is more important and no matter how good my bone consolidation is, I'd prefer going with 0.75mm in order to keep my muscles SAFER. Thanks for the reply though! Again, best of luck Sunshine!

Regards

do keep in mind tho:
if you dont lengthen at an appropriate rate, you may get premature consolidation.
which would mean having to pay for rebreak surgery.
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starting height approx 167cm ( morning height)
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Skyisthelimit

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Re: chasing a lifetime dream
« Reply #100 on: September 27, 2020, 07:56:57 PM »

Hey Sunshine! How is it going, buddy? Any news? It would be extremely helpful if you could give us a quick update on your status. Stay strong, brother!
Sky
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Sunshine

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Re: chasing a lifetime dream
« Reply #101 on: October 01, 2020, 08:45:10 PM »

Hey Sunshine! How is it going, buddy? Any news? It would be extremely helpful if you could give us a quick update on your status. Stay strong, brother!
Sky
Hey Sky,
here are some updates since my last post.

09/14/2020 - 3.3cm

I'm starting hitting the wall!! My quadriceps get tighter and stiffer with each day passing by especially when waking up in the morning. They keep pulling even at rest after distraction. The tension on the thighs appears after each distraction and the pain is almost unbearable at night! It takes a toll on my sleep, I keep tossing in my bed trying to find the least painful sleeping position, alternating between back and stomach positon the whole night. And I can't slow down lengthening to relieve my soft tissues cuz my Doctor says my callus formation is good and urges me to keep distracting 1mm/day. I'm not even half way of my target and my thighs are already stiff like a rock lol. If my soft tissues are just stretching instead of effectively growing then I wonder how I'm gonna reach my target which seems so far away, I still have 4.7cm-47 days to go and that looks like an eternity!

10/01/2020 - 5cm


I somehow survived the last 15 days and reached 5cm! Each day of distraction is now a bonus and it's just a matter of time before my quads lock up and won't take any more distraction! How the hell did all these people make it to 8cm 😂 I'm entering my last month, the last stretch of my journey, 30 days to go and I'm now in an unknown territory! Each coming distraction of 0.33mm could be my last one ever! The pain, the pull on the thighs at night especially after the last distraction before going to bed is horrible! This is gonna be the longest and most fascinating October of my life!

« Last Edit: October 01, 2020, 09:51:46 PM by Sunshine »
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ghkid2019

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Re: chasing a lifetime dream
« Reply #102 on: October 01, 2020, 08:58:59 PM »

Talk to buldu about doing .75mm a day and stretch the fk outta your thighs... Push maybe 10 more days or15, you will love it... It's all bonus anyways...


Thank you sunshine ☀️☀️☀️☀️☀️

I think 6cm is a good middle ground for you wanting to keep athleticism and getting some good height, you will be 178-179cm which is guuddddd ☺️👍
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Sunshine

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Re: chasing a lifetime dream
« Reply #103 on: October 01, 2020, 09:23:49 PM »

Yeah ghkid2019,
that 0.75mm slow down crossed my mind since I started struggling at 3.3cm 2 weeks ago. Unfortunately Dr. Buldu already said that day that my callus was unbelievable lol and going lower than 1mm was not fit for my case! He repeated again today that my callus is excellent so slowing down distraction is definitely not an option for me 😞 I stretch my thighs the whole day even on my bed while watching my phone lol. The weird thing is the tension on the quads during daytime is somewhat bearable. But it turns into a throbbing pain after the last distraction of the day before I settle for bed and it keeps pulling on the front and side of my thighs the whole night. I can feel my thighs are under tension and hard at the touch! Note: I don't take that much pain painkillers at my disposition. I may now start relying on them for this last stretch.
I would settle for 179cm but it would be cool to hit that symbolic 180 lol
« Last Edit: October 01, 2020, 10:08:03 PM by Sunshine »
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Skyisthelimit

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Re: chasing a lifetime dream
« Reply #104 on: October 02, 2020, 12:11:40 PM »

Hey Sunshine! Your callus formation looks incredible, like Dr. Buldu said. The alignment also looks very nice. 5cm is already a nice gain, but I’m sure you have some fight left in you. Keep pushing, bro. Apply some warm compression to your thighs to try and relax the muscles. Maybe after each PT session you or someone else can massage your thighs for like 20 minutes. Try to look for ways to relax your soft tissue. Stay strong!
Sky
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Sunshine

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Re: chasing a lifetime dream
« Reply #105 on: October 02, 2020, 01:04:44 PM »

Thanks Sky!
I will try all tricks to survive these last 30 days! How did these people reach 8cm even 10cm with some doctors ?! That's insane lol. I just woke up, it's 5am and my thighs are hard like a rock. I have to start my first distraction of the day in 2 hours and it already freaks me out lol
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brondo

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Re: chasing a lifetime dream
« Reply #106 on: October 02, 2020, 01:15:42 PM »

Hey Sunshine,

Were you flexible before you started surgery? Anyways hope everything turns out okay and please try to be safe with distraction.

-brondo
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Sunshine

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Re: chasing a lifetime dream
« Reply #107 on: October 02, 2020, 01:33:29 PM »

Hey brondo,
I was uber flexible pre- surgery lol. But that doesn't mean   post-surgery. It's up to me to keep up PT with distraction. Each coming distraction is now a challenge for me, trying to survive every .33mm gained lol
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Sunshine

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Re: chasing a lifetime dream
« Reply #108 on: October 02, 2020, 01:36:10 PM »

The alignment also looks very nice.
I think Dr. Buldu cut my bones very nicely lol
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StrydeNailChallenge

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Re: chasing a lifetime dream
« Reply #109 on: October 02, 2020, 02:09:16 PM »

Hey brondo,
I was uber flexible pre- surgery lol. But that doesn't mean   post-surgery. It's up to me to keep up PT with distraction. Each coming distraction is now a challenge for me, trying to survive every .33mm gained lol

I know you and I are very much alike. You will go all the way to 8cm my brother. Please don't hesitate. If necessary, do extreme stretching, that even you (in addition to your muscles) get a big surprise each time! focus on stretching. Don't mess up too much with your quads, but the rest, please go extreme as much as you can. But know your limits. If you feel like any stretch is slowing you down, cause it's creating more pain, then take it easy on that, and do extreme on those that do not create lasting pain. You've got this. We will do this together.

Don't fight the pain. Have your painkillers. This is tough even with painkillers, but for a typical CLL'er in pain, it seems impossible to  do this without painkillers.

Please check my diary, on some suggestions I had to relieve pain. E.g., sit in a hot jet/hot bathtub for at least an hour, after every distraction session or two!  Please double check with your doctor first, on every suggestion I have or others have made.

« Last Edit: October 02, 2020, 02:58:04 PM by StrydeNailChallenge »
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Starting [Morning] Height: 172.5 cm, Ending: 180.5
SNC - Femurs' Stryde Nail Diary: http://www.limblengtheningforum.com/index.php?topic=65337.0

brondo

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Re: chasing a lifetime dream
« Reply #110 on: October 02, 2020, 02:39:59 PM »

Hey Sunshine,

Thanks for responding. I was wondering how the stretching regimen was for using Precise instead of Stryde. Is it difficult to stretch without weight bearing nails?
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Sunshine

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Re: chasing a lifetime dream
« Reply #111 on: October 02, 2020, 03:30:12 PM »

Thanks Bro SNC!
I'm following your trail lol. I think you should be at 6.5cm now? You look so far ahead of me and nearing the finish line! I'm amazed by your handling of lengthening even doing 1.25mm/day!! How can you tolerate the pain?!! You seem to have struck a nice balance between PT and tricks hot tub/shower to dampen pain. I'm gonna keep pushing on stretching till the end!
@brondo,
It's true I sometimes think about compromising these Precice nails when pushing on knees bent. The weight bearing and walking unaided offered by Stryde is definitely a game changer in recovery!
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init1alove

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Re: chasing a lifetime dream
« Reply #112 on: October 02, 2020, 06:00:51 PM »

Ok makes sense, I still have 2 months to decide on the surgeon. Anyway regarding pre-op preparations I read some doctor recommends to work out and gain leg muscle mass as much as we can while other patients say we'd better stop working out and let the muscles relax 🤷

 Hi Sunshine,

Have you got the answer now? As pre-op preparations, is it better to have more muscle mass? Does more muscle bring you more pain during lengthening? I went through the thread, can not find the answer:(
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Sunshine

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Re: chasing a lifetime dream
« Reply #113 on: October 02, 2020, 07:13:30 PM »

Hi Sunshine,

Have you got the answer now? As pre-op preparations, is it better to have more muscle mass? Does more muscle bring you more pain during lengthening? I went through the thread, can not find the answer:(
Hey init1alove,
There are contradictory opinions on that question. Some say having too much leg muscle mass will hamper their flexibility post-op while another doctor advises his patients to gain as much leg muscle mass as possible to compensate for the mass loss post-op!
I'm not sure what to think about that. I personally decided to go into this surgery as light as possible and focused on stretching my legs rather than working them out. My legs were already naturally big and I didn't want to develop them further than they already were..

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AnotherShorty

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Re: chasing a lifetime dream
« Reply #114 on: October 07, 2020, 04:45:28 PM »

Hi Sunshine

Thanks for sharing your experience and helping people like us to make the right decisions...

Could you please answer a couple of questions:
1) how's your pain now? Are you still doing the distraction?
2) how much weight you have lost since the surgery?
3) distraction from home country is manageable as you flew back to your home country?
4) Do you feel you will be pre-LL after 1 year or so?  Hows your knees now?
5) will you recommend Dr H to someone based on your overall experience?

I hope you get through this ASAP... And max out the nail...

Best regards

P.S : you have solid runners legs man... Your cardio game must be top-notch
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Sunshine

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Re: chasing a lifetime dream
« Reply #115 on: October 07, 2020, 10:34:32 PM »

Hey AnotherShorty,
You're welcome! I hope my experience may help future LLers and that they can take from my diary. To answer your questions:

1) my pain has plateaued since +4cm. It didn't decrease nor increase. My legs are super stiff and especially the quadriceps-front muscle group and lateral IT Band are super hard and under permanent tension. This stiffness creates more discomfort than pain when resting in my bed or standing up. In fact what causes pain is continuing distraction. Although I stretch before and after each distraction, every additional 0.33mm adds stress and tension to these already stretched muscles/soft tissues. From my understanding, in one of his interviews Doctor Paley said that there's only so much a muscle can stretch. Eventually it starts to grow past a certain threshold. And we have to keep stretching in order to stimulate that muscle growth.
So yes as of this writing I'm still continuing distraction. When I wake up at 5:30am after a very short night where I barely slept and tossed in my bed like a dozen times due to the discomfort and pain, my thighs are super stiff like a rock lol. My first fear of the day is how my feet ankles and knees are going to react when I get out of the bed and stand up! Some mornings I feel pain coming from my ankle and feet when I start walking (with the walker of course!). Overall, despite my fear every morning of what's coming, so far the pain has been somewhat bearable. It's not really noticeable during the day. It's more obvious at bedtime especially after the third distraction. When laying in my bed and playing on my phone waiting to fall asleep. It's when that throbbing pain comes alive from deep within the muscles or nerves or arteries (I'm not really sure where lol). It's on and off and would last couple hours. I have to keep bending my quads to relieve that throbbing pain.

2) I haven't stepped on a scale since surgery. I don't think I lost weight because I've never eaten so much in my life lol. I feel hungry every 2-3 hours and I have to refrain myself to 4 or 5 mini meals a day. This is in stark contrast to my pre-surgery diet where I never had breakfast and always ran on an empty stomach and started my first meal of the day late afternoon!
I don't think I gained weight neither just by looking at my overall body! It's still relatively lean despite my calories intake. Note I stay away from sugar and junk food.

3) Distraction at home was in my plans since day 1. It saves me on living cost abroad for 3 months while distracting in the comfort of my own home! So yes I stayed in Turkey for 15 days post-op then flew back home for distraction. That was possible since dr. Buldu allowed me to bring the ERC remote controller with me back home for the 3 months distraction. I'll have to fly back to Turkey though at the end of distraction to return the remote controller coz it's super expensive lol. I have no one to help me at home during distraction so it's quiet challenging but manageable as long as you can walk stand up and bend your knees to sit down on the toilet and for shower. Of course if you have your family around you to help during distraction that would be even better and more comfortable.

4) My knees especially the left one has been giving me issues since +2cm. The left knee has always been more painful than the right one.
I don't think I will be pre-LL after one year and don't even expect so! One year post-op is barely around the time I expect to remove the nails out of my femurs and until then I won't feel comfortable running or pushing my body. In fact my biomechanics will shift and be disrupted with that added length on my femurs. My center of gravity will shift, my thighs will never be the same again. I don't think they will ever be as strong as before surgery! In fact I don't ever expect to regain my pre-surgery athleticism and I already accepted that going into this surgery. My prime is behind me. Being able to run again one day will be bonus and will remind me the nostalgia of all those years dedicated to running.

5) Will I recommend Dr. Halil to someone based on my overall experience? Yes absolutely! Had I had any doubt about him and the safety of my legs I would of course never choose him. Based on my interaction and contact with him pre-surgery and in person after I met him, I can say I can recommend him. Now it's your responsibility to make your own research, get in touch with doctors you consider and see for yourself how you feel about each of them. I think his number has been listed on this forum and if you consider him drop him a line and see for yourself how you feel about him. Me personally, I flew there, met him in person and I can say he's exactly how he sounded like throughout our communication before I met him. Down to earth, approchable humble and caring. Even now back in my home country, whenever I have a concern and send him a message he replies promptly. But again don't take my word for it. It's your responsibility to contact doctors you shortlisted and see for yourself.

Each day now is a big unknown for me as I wonder every morning when I wake up how my legs are gonna hold up when I get out of bed and stand up. I wonder if I'm gonna feel pain when I make my first step lol. My relief comes at the end of each day after the last distraction around 7pm, after another millimeter lengthened!
Running and cardio was my life. It was painful and required lots of dedication and sacrifice to reach that level. That life is now behind me. I'm not getting younger and regaining that pre-surgery athleticism is no more a priority as I already gave it all during these years running day in day out. Living the rest of my life height neurosis free is more important...
« Last Edit: October 07, 2020, 11:26:29 PM by Sunshine »
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AnotherShorty

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Re: chasing a lifetime dream
« Reply #116 on: October 08, 2020, 06:30:44 AM »

Many thanks Sunshine for your detailed and kind response...
So I guess this surgery is something where EVERY day is a hustle  :) I didn't know that you don't have anybody with you to help at your country...but endurance is your game and I am sure some where down the line you will again feel that ”Runners High”...

Keep Strong Sunshine ☀️
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Sunshine

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Re: chasing a lifetime dream
« Reply #117 on: October 08, 2020, 08:42:44 AM »

Thanks AnotherShorty!
You sure won't have a day rest after getting your legs drilled and your bones cut lol. Basic tasks such as walking sitting down standing up using the bathroom suddenly require more energy and become somewhat difficult. Right after surgery, any movement of the legs will induce sharp pain especially at the bones and osteotomy site.
I too think that Runners High feel will come back when I watch the Olympics next year. It's in my blood and can't be inhibited so easily! TBH I already dream about getting back to my pre-surgery fitness. I already envision the path to recover my athleticism and run again at the level I used to. But this is simply impossible because it's just a fact that my biomechanics and balance aren't natural anymore. I think once a muscle is overstretched it will never be as powerful as before.
« Last Edit: October 08, 2020, 09:07:42 AM by Sunshine »
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brondo

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Re: chasing a lifetime dream
« Reply #118 on: October 08, 2020, 11:12:13 AM »

Hi Sunshine,

I hope that you are doing well. I have to say that it is disappointing to me that you feel you won't be able to have your athleticism ever again. I was under the impression that it would be possible to gain it all back as long as you are conservative with lengthening (around 5cm) and work hard on your PT. Even if someone were to lengthen as much as you they can still get most of their athleticism back if not all if they work hard. Do you really feel this is the case? Do you think this is because you aren't doing Strydes or going above 5cm or would that same thought apply to everyone who does CLL? Thank you.

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Sunshine

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Re: chasing a lifetime dream
« Reply #119 on: October 08, 2020, 05:02:46 PM »

Hey Brondo,
I of course will get back to running once consolidated because it's in my genes. I already envision what it will take to run again after LL. It will be hell lol. In my case, at age 48 it's delusional to expect to run at my older pace after LL with different biomechanics. Longer legs will affect the pressure and angle of my foot/ankle landing on the ground on each stride. And I will probably be heavier too with longer femurs.
Anyway I will hit the road again once all is said and done in a couple years and I'll be curious to compare my pace to post-LL. I have all the data on my running app..
Now I can say not being able to walk unaided during distraction is detrimental to my recovery. And of course the less you lengthen the less you disrupt your biomechanics if athleticism is your priority.
I still think that a deviation of your center of gravity and biomechanics from your natural ones can't be beneficial to your athleticism.
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AllinStryde

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Re: chasing a lifetime dream
« Reply #120 on: October 08, 2020, 05:05:58 PM »

Hey, it sounds like things are going well for you.  I can't imagine a LL surgeon letting someone distract outside of their care.  I was down at Paley's last year...and the clinic will not let you lengthen outside of West Palm Beach.  They see you every 2 weeks and check your xrays and meet with the surgeon.  I will have to go back and read some more on your diary.  I stopped just shy of 8 cm.  It was perfect for me.
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Sunshine

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Re: chasing a lifetime dream
« Reply #121 on: October 08, 2020, 08:18:46 PM »

Hey AllinStryde,
I'm still lengthening but it's far from being a piece of cake lol. I'm in hell right now at 5.7cm. There are actually couple doctors allowing their patients to fly back home and continue distraction there after couple weeks post-op. Some do charge a rental fee though for you to bring the ERC controller with you back home. My doctor doesn't charge that fee. I have to send him x-rays every 2 weeks for check-up.
« Last Edit: October 08, 2020, 08:43:42 PM by Sunshine »
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OverSixFeetTall

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Re: chasing a lifetime dream
« Reply #122 on: October 13, 2020, 06:29:17 PM »

Heya Sunshine,

Great journal!

What's your goal height?

Also, since you're an active runner your whole life. What will do for cardio after recovering from this? What did the doctor suggest you do for exercise?
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My Current Height: 5'9
My Goal Height: 6'0
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Sunshine

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Re: chasing a lifetime dream
« Reply #123 on: October 13, 2020, 09:39:03 PM »

Thanks OverSixFeetTall!
My goal is to reach that symbolic 180cm. My doctor emphasized on stretching during lengthening for my soft tissues to cope with distraction. As for exercices to regain my cardio, I probably know better than him what it will take to regrow my heart lungs and cardio. I've been through a 12-year period in the past where I stopped running and it was a pain in the arse to catch-up. But first I'll have to rebuild my glutes and work on my hip flexors. Then I'll focus on stretching the thigh muscles group (anterior posterior and lateral). Then I'll start running slowly again. It will be hell due to my shrunken heart and lungs. And I don't know yet how my new biomechanics will affect my balance stride ankles joints feet etc. It will be a long road to redemption...
« Last Edit: October 13, 2020, 10:22:32 PM by Sunshine »
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