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Author Topic: Diary - January 2019 - In Full Stryde with Dr. Mahboubian of North Hollywood.  (Read 150460 times)

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InFullStryde

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Hello In Full Stryde,

I've been keeping up with your journal and want to preface by thanking you for keeping such a transparent journal about your journey.  I know I've learned a great deal from your forum and I'm sure many others have as well. 

One question I've been wondering since following your journey are your thoughts about how the STRYDE nail performed compared to your expectations of it?  Did you expect walking to be easier after the first few months than it was, a faster recovery to normal walking gate, or would you say your expectations in terms of recovery and regaining normal walking have exceeded what you expected?

Thank you again for keeping such a detailed journal.

Best,
Michael

Hi Michael,

First - I very much appreciate the fact that you have come along this journey with me as a reader, observer and your kind thoughts are helpful to what is a challenging process even for the strongest.   Your questions are outstanding for community insight. I'll break them down and answer each below:

One question I've been wondering since following your journey are your thoughts about how the STRYDE nail performed compared to your expectations of it? 

The Stryde nail has been everything I could have expected, hoped for and then some.   The nail is truly weight bearing and to that end, I have been able to take advantage of this fact by standing full weight on the nail since the first day.   The accuracy of the lengthening has been incredible and surprisingly great.   The entire process on the technology side has been streamlined, straight forward, and without confusion.   It's incredible to me how I have these two nails in my legs that I can't even feel and I was able to painlessly lengthen my legs through magnets on both the nail and ERC apparatus.    Stryde is truly a game changer and I am so blessed to have been able to move forward with this surgery on the Stryde technology vs. the Precise 2.2.

Did you expect walking to be easier after the first few months than it was, a faster recovery to normal walking gate, or would you say your expectations in terms of recovery and regaining normal walking have exceeded what you expected?


This question begs reflection, honesty, and transparency.  I'm going to provide all 3 to the community.    My idea of CLL, to begin with, was that it would be for lack of better terms, "really hard".   I had known of CLL for over 2 decades and gave up the imagining of it completely because there was just no way I would be okay with the external fixation through my shins.  Also, I was only 17 years old at the time and wasn't willing to allow my parents to invest so much money, time, energy and displacement, in order to help me achieve an extra inch or 2.  20 years, go by and here I am...37 years old and in a position to completely finance the entire procedure on my own.  The idea of CLL wasn't even one I was taking seriously but when you have that lingering thought in the back of your head similar to..."gosh, ... 2 to 3 added inches would be most helpful"; you just start to gravitate toward options. Low and behold, after performing some research I learned of the intramedullary rods that are placed within the femurs and can offer 3 inches of height gain in a relatively safe manner.   So I decided to dive in deeper and I stumble upon this forum.  Here, I review the diary after diary and also learn of the new Stryde nail.   One of my primary angsts with CLL was how the precise requires individuals to be primarily wheelchair and very partially walker bound for nearly 5 months before they are truly able to take steps. Now, now...I know there are exceptions to this rule; but the general order of things was 4-5 months of mostly sitting.   So, with this in mind; I was still interested in CLL; but not excited at the prospects.   I went in for a consultation and with Dr. M to learn more in September of 2018 and low and behold he has just gotten his hands on Styrde.   This nail would allow me to train and push my legs from day 1 and if I could tolerate it...I could even stand and walk...worse case I could use a walker and crutches in full bearing capacity.   Well, that is exactly what I have done.  Okay, now that I have rambled for a bit; let me answer directly below:

My expectation was truly unknown as it related to my walking and my gait progress during this process.   I had very tight soft tissue before the procedure, lacked flexibility and to be completely honest with you I have not done alot of walking around in years.  It just turned out this way; so, as a result, I found out that I have very tight hipflexors as well.   In the back of my mind, I knew that my recovery could likely take a bit more work and time than your average person, much less your gymnastics pro.  In my mind, I saw the Styrde nail as a way to OVERCOME some of my inate challenges of tightness; being that I could remain mobile throughout to prevent over stiffness.   I don't gamble much, but i was right..Styrde did this for me.  I truly believe that had I been on lengthening technology other than Stryde that I would of had a much more difficult recovery ahead of me.  As it stands now at 3 months and oh, about 10 days... I can balance on each foot with full body weight and take steps that are good enough to train with.    I believe that compared to other, younger and more flexible patients I'm likely behind the curve; but as far as my expectation, I think I'm right where I imagined I would be.  I hope this all made sense :-).   One other challenge that is unexpected and I want to inform other patients of is that "you never know" factor.   My left leg, from the start, has been a nuisance.  The left leg has seen its good days and its bad; but all in all, I've had to compensate for it.   I'm glad to report that today its feeling good.   

As an actual patient of Stryde, I believe that a person can be walking decently by month 3 or 4 if they are flexible and in good shape before surgery.   An average to sub flexible person, I believe can expect to start seeing the walking "light" if you will around month 5 or 6.   Either way, you're still ahead of the curve.  My goal at the moment is to be fully using only a cane by May 1st, with a dash of unassisted walking.  By June, I would like to be walking unassisted.  I'll keep everyone closely tied into my story and we will see how it goes. 

Again, I hoped this perspective helped and I'm on your side CLL'ers. Feel free to reach out with any questions.   
« Last Edit: April 16, 2019, 05:48:42 PM by InFullStryde »
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

InFullStryde

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(Tuesday) Day 102 Post Op - Day 10 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]

Good evening LL'ers,

I hope all is well.   Another decent day today. Each day get's a bit better and better.  I'm took about 1000 steps today, full weight bearing with crutches support (just to keep my balance).  During which time, I usually sprinkle in some unassisted walking to test my gait.  My legs are definitely getting stronger!  My main objective at this time is to strengthen and increase flexibility in my legs so that walking feels more natural.  As mentioned before I can stand on one foot, for each leg for minutes at a time with no issue.  Things are looking good.   I just got home from the office; so not much to talk about for now; but feel free to reach out if any questions.  My next follow up visit with Dr. M with X-Rays in on April 26th.  We'll see how everything is looking in a couple of weeks!

Talk soon,

IFS
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

Hex

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Note off topic.


So i have a wrong perception of height, i saw a guy in the school today and i think he was about 5'7 but he said he is 5'5.

As soon as I am a "specialist" in height, I imagine that people can not differentiate between 5'4 to 5'6 "very well. So if you ask yourself your height, you have a margin of lie. I particulary lie and 2 inches my actual height, and no one ever suspects.


I know it sounds like something strange and fake coming from me, but this is normal phenomenon that usually happens in my school. People compare themselves physically constantly, even more that I am more muscular I am constantly receiving positive comments. But they never told me I'm tall.
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I'm looking for growth alternatives outside LL.
my instagram @gustavotrrs

Dan

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Sorry but that’s not true.
5.5 to 5.7 maybe but not 5.4!!!
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InFullStryde

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(Wednesday) Day 103 Post Op - Day 11 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]

Good evening LL'ers,

Another day behind me! It went well.  Each day, I tell ya, it gets better once you stop lengthening.  I'm still tight; but much much looser than I was a week ago. My physical Therapist keeps mentioning how much better its getting; as he hacks away at my hips with the jackhammer aka massage gun, lol.   I walked another 1000 steps with crutch support and mixed in both cane and unassisted walking.  My personal timeline is to be 100% cane by end of month and then ween off cane to unassisted walking in the weeks there after.  One positive aspect is that I can walk with no assistance now; but my legs do get sore so I continue my walking workouts with crutch support.  We're getting there folks.  Was tempted to send a video of my gait today, but I decided, to be fair to those going through CLL; its a better sampling to wait until 3 weeks post distraction.  At that time, there would have been some decent healing in bone and a bit of healing of the soft tissue.  So, we'll wait until next weekend for X-Rays and a Gait Video.  As I mentioned; I'm doing everything I need to on my own, from driving, to shopping, to working in the office full time.   I'm 'somewhat' back to normal.  The last piece of the puzzle is to get back to walking.  We'll get there....day by day.

If you  have any questions feel free to reach out!

All the best,

-IFS
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

Ghostfish

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Hi IFS

Everything looks good!  Keep up the good work!  You will walk much better soon!

Best,

Ghostfish
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InFullStryde

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Hi IFS

Everything looks good!  Keep up the good work!  You will walk much better soon!

Best,

Ghostfish

Thank you, GhostFish. Appreciate the good thoughts and encouragement!
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

SimonFuller

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(Wednesday) Day 103 Post Op - Day 11 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]

Good evening LL'ers,

Another day behind me! It went well.  Each day, I tell ya, it gets better once you stop lengthening.  I'm still tight; but much much looser than I was a week ago. My physical Therapist keeps mentioning how much better its getting; as he hacks away at my hips with the jackhammer aka massage gun, lol.   I walked another 1000 steps with crutch support and mixed in both cane and unassisted walking.  My personal timeline is to be 100% cane by end of month and then ween off cane to unassisted walking in the weeks there after.  One positive aspect is that I can walk with no assistance now; but my legs do get sore so I continue my walking workouts with crutch support.  We're getting there folks.  Was tempted to send a video of my gait today, but I decided, to be fair to those going through CLL; its a better sampling to wait until 3 weeks post distraction.  At that time, there would have been some decent healing in bone and a bit of healing of the soft tissue.  So, we'll wait until next weekend for X-Rays and a Gait Video.  As I mentioned; I'm doing everything I need to on my own, from driving, to shopping, to working in the office full time.   I'm 'somewhat' back to normal.  The last piece of the puzzle is to get back to walking.  We'll get there....day by day.

If you  have any questions feel free to reach out!

All the best,

-IFS

Hey IFS - congrats - sounds like things are going well - and anytime you feel comfortable sending out the video - we'll all be excited to see it I'm sure!
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InFullStryde

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Hey IFS - congrats - sounds like things are going well - and anytime you feel comfortable sending out the video - we'll all be excited to see it I'm sure!

Thanks, man. One day at a time. :-)
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

InFullStryde

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(Thursday) Day 104 Post Op - Day 12 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]

Good evening LL'ers,

So far the trend continues... each day I feel looser and looser.  I will say  that specifically, i have some tightness that wraps around my quads so it creates a lil "ouch" when I do "high knees" without warming up; like when you  just pop up to get something from the fridge, etc.  So I'm  continuing to stretch, stretch, stretch, and strengthen.  My infamous duck ass is improving because I'm walking a lot, and working my abs and glutes a couple of times a day.  Additionally, the stretching of my quads and hip flexors are loosening me up little by little.

I visited the mall today with my sister and it was great. I needed a pair of glasses.  I started out with crutches; but by the end of my Mall visit,  I let go of them for a bit and walked unassisted. My gait looked pretty decent! (according to my sister, lol).   Steps felt tight; but just a bit better than the day before.  Little by little, we will get there.   Nothing much to report, guys. Oh, one thing - my sleep is good now. I am sleeping with no real issue. It's not 100% normal because you still feel some tightness discomfort; however, it's not painful and I'm probably averaging a good 5-7 hours of sleep now.  I'll reach out with a new update this weekend. 

Talk soon and all the best!

IFS 
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

Singapore

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Thanks buddy! How are you doing? If my calculations serves me correctly; you're hovering around the end of the distraction phase?  Let me know how you're doing when you can. No rush.  Great to hear from you.

Yes. I also stopped at around 3 inches :D The thing is one of my leg is 2 mm behind the other. I am not sure if its worth it to keep it lengthened until they are both equal. Both of my legs feel pretty tight now so I just want to stop already :))
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InFullStryde

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Yes. I also stopped at around 3 inches :D The thing is one of my leg is 2 mm behind the other. I am not sure if its worth it to keep it lengthened until they are both equal. Both of my legs feel pretty tight now so I just want to stop already :))

Hi Singapore! Great to hear from you.  2mm is not anything to really worry about. You can't feel that difference; nevertheless; you could always lengthen it maybe 1 more day.  But YESSSS, near the end, me too. I just wanted to stop lengthening, already.   This is a long journey.  Good luck in your recovery and feel free to check in on how you're doing when you have the chance. The community would love to know how you're doing.

Talk soon,

IFS
« Last Edit: April 19, 2019, 03:07:11 AM by InFullStryde »
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

InFullStryde

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(Friday) Day 105 Post Op - Day 13 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]


Good evening CLL'ers,

Another day in the books. Today was good...and the trend continues...I'm feeling just a tad better each day.

I'll be straight to the point for today. I am now 100% walking via cane.  I move slowly and have a tight gait but am fully utilizing the cane now to get around work, home, and PT clinic, etc. As you all well know...A cane is full weight bearing and can only be relied upon for balance. I am now at this stage....

My challenges at this time are pretty straight forward:

1) Tightness - Stretching and being patient for muscles to continue adaptation with new bone length.
2) Anterior Pelvic Tilt (Duck Ass) - By far the most annoying issue.  All I can do is stretch hip flexors and work out glutes and abs. In time the Pelvis shall rise again! lol
3) Muscle Strength - Legs actually do feel quite strong; but they can improve.  Will continue to follow my daily commitment to get stronger by walking and doing exercises.

That is all for now you guys.  I'll be headed out to Dr. M's in exactly 1 week from today for X-Rays and follow up details.  I hope everyone is doing well and feel free to reach out if you have any additional questions.

All the best,

IFS
« Last Edit: April 20, 2019, 12:31:55 AM by InFullStryde »
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

wannagrowtaller

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What stretch you do to deal with tightness?
What strengthen exercises?
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InFullStryde

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Hi WGT,

I do the following stretches/strengthening, below. I continue to add more and mix up  my routine as well.   The following examples can be used as a well rounded routine for all CLL'ers for before or after cll surgery.  Mix this in with physical therapy massage and treatment. etc and you're going to achieve your goal. 

Let me know if you have any questions!

Walking

I try to take at least 1000 steps per day and am reminding myself to stand up  out of my chair every 45 minutes take some steps, stretch out a bit.


Hip Flexor Stretches



Knee to Chest (Quads/Hip Flexors):



Protected Hamstrings (Hamstrings)



Lying down Hip Flexors (Quads/Hip Flexors)



Thomas Stretch (Quads / Hip Flexors, Great for resolving APT)



Hip Abduction



Front Leg Raises (Quads)



Ball squeezes (Grown/Inner Thigh)



Prone Quad Stretch (Quads)



Stand and Sits (Glutes, Hips, Hams, Quads)




Balance on One Foot




Correct Anterior Pelvic Tilt








Cable squats/Puts (Use bands if you do not have cable weight machine








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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

tiggy

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Hey IFS,

You continue to inspire many of us with your diligent diary posts and your general experience with this surgery. Really awesome stuff brother, keep up the great work!

If you don't mind, I would really appreciate your advice. I have my pre-op next week and surgery in about 3 weeks. I am going to start putting together items I may need and order necessities like a walker, wheelchair, and a cane. Those seem like the most urgent items. I was really hoping to get your input on which walker and wheelchair to buy. I assume any cane will do? If you found other additional items useful to you, please throw them my way.

I wanted to order them now so that I don't fall into a frenzy later. I already am very nervous about this surgery, and I am sure it will only intensify in the next 3 weeks as I get closer to the date!
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wannagrowtaller

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Thanks a lot!
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InFullStryde

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Hey IFS,

You continue to inspire many of us with your diligent diary posts and your general experience with this surgery. Really awesome stuff brother, keep up the great work!

If you don't mind, I would really appreciate your advice. I have my pre-op next week and surgery in about 3 weeks. I am going to start putting together items I may need and order necessities like a walker, wheelchair, and a cane. Those seem like the most urgent items. I was really hoping to get your input on which walker and wheelchair to buy. I assume any cane will do? If you found other additional items useful to you, please throw them my way.

I wanted to order them now so that I don't fall into a frenzy later. I already am very nervous about this surgery, and I am sure it will only intensify in the next 3 weeks as I get closer to the date!

Tiggy, I appreciate the kind words and boy don't I know about that feeling just before CLL.  It's a very humbling one.  On one hand you know you're about to enter into a difficult unknown; but then on the other hand you know that you're about to, once and for all, destroy your height dysphoria and re-emerge a new man, re-imagined on your terms.  I can't wait to hear about your journey. Keep us posted, hopefully! Who is your doctor? 

Here are some tips per yours questions above:

Wheelchair - I recommend a model that allows you to recline.  Truth is that you're likely going to spend quite a bit of time, during the 1st month in a wheelchair since you're legs will still be healing from surgical pain and of course your legs are weakened at this point.  At those moments where you want to simply rest and/or take a nap; you will not have the desire, strength, energy to constantly be trying to transfer your self to the bed since this will be painful.   The below link is to a well-reviewed recliner wheel chair that I believe will work great for you.   My wheel chair was not recliner and boy don't I wish I had one for those first couple of months especially.    You'll benefit from this. You may even decide to sleep from it for 1 week; if transfer is far to painful.

Recliner Wheelchair https://www.amazon.com/Drive-Medical-SSP20RBDDA-Wheelchair-Detachable/dp/B005JIKB70/ref=sr_1_4?keywords=reclining+wheelchair&qid=1555733783&s=gateway&sr=8-4 

Walker - I recommend a walker that has wheels in front.   As you gain strength; you'll appreciate the ability to push on the walker to proceed forward.  At the beginning when you are struggling to walk;  you'll appreciate the non wheeled side for stability.  I also recommend including a bag to attach to the walker; so that you can easily transfer things from one place to another.  I am also going to include a link to a tray that works great for placing your dinner dishes, etc, as needed. 

Walker - https://www.amazon.com/Deluxe-Button-Folding-Walker-5-Inch/dp/B001HOM4U2/ref=sr_1_3?keywords=walker+with+wheels&qid=1555734049&s=gateway&sr=8-3

Walker Bag - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_3?keywords=walker+bag&qid=1555734234&s=gateway&sr=8-3

Walker Tray - https://www.amazon.com/Jobar-47903800-Walker-Tray-Jb4790/dp/B00Q5C91J8/ref=sr_1_2_sspa?keywords=walker+tray&qid=1555734250&s=gateway&sr=8-2-spons&psc=1

Cane - This is an easy one.  I recommend the below.   Do not rush to use the cane; just go your own pace.

https://www.amazon.com/Medline-Offset-Handle-Cane-Black/dp/B000BJBH3Y/ref=sr_1_4?keywords=cane&qid=1555734285&s=gateway&sr=8-4

Crutches
- You will likely graduated to crutches after walker. Below is a good option. Arm crutches are best for this.

https://www.amazon.com/Medline-MDS805160-Aluminum-Forearm-Crutches/dp/B00LOLL29C/ref=sr_1_5?crid=2E8S8E8TN0EGT&keywords=arm+crutches+for+adults&qid=1555734326&s=gateway&sprefix=arm+crut%2Caps%2C203&sr=8-5

---

I'll see if I can find some time to put together a tool kit for the community in the coming days so that prospect CLL'ers have the basics covered. I'll make sure to direct this over to you!

All the best,

IFS



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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

OGfivesevener

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Tiggy, I appreciate the kind words and boy don't I know about that feeling just before CLL.  It's a very humbling one.  On one hand you know you're about to enter into a difficult unknown; but then on the other hand you know that you're about to, once and for all, destroy your height dysphoria and re-emerge a new man, re-imagined on your terms.  I can't wait to hear about your journey. Keep us posted, hopefully! Who is your doctor? 

Here are some tips per yours questions above:

Wheelchair - I recommend a model that allows you to recline.  Truth is that you're likely going to spend quite a bit of time, during the 1st month in a wheelchair since you're legs will still be healing from surgical pain and of course your legs are weakened at this point.  At those moments where you want to simply rest and/or take a nap; you will not have the desire, strength, energy to constantly be trying to transfer your self to the bed since this will be painful.   The below link is to a well-reviewed recliner wheel chair that I believe will work great for you.   My wheel chair was not recliner and boy don't I wish I had one for those first couple of months especially.    You'll benefit from this. You may even decide to sleep from it for 1 week; if transfer is far to painful.

Dude, tips from someone who's in the thick of it and knows how to be resourceful is so valuable. Feel a bit guilty to ask you to keep these tips coming. I'm piecing all my own ideas together based on your diary.

And congrats on 100% cane walking a little more than 3 months out.

P.S. thanks for that last video : )
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InFullStryde

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Dude, tips from someone who's in the thick of it and knows how to be resourceful is so valuable. Feel a bit guilty to ask you to keep these tips coming. I'm piecing all my own ideas together based on your diary.

And congrats on 100% cane walking a little more than 3 months out.

P.S. thanks for that last video : )

Glad I can help, man!  I'll be creating that CLL tool kit here shortly for everyone.   That last video was also my favorite. lol
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

jaybam

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Tiggy, I appreciate the kind words and boy don't I know about that feeling just before CLL.  It's a very humbling one.  On one hand you know you're about to enter into a difficult unknown; but then on the other hand you know that you're about to, once and for all, destroy your height dysphoria and re-emerge a new man, re-imagined on your terms.  I can't wait to hear about your journey. Keep us posted, hopefully! Who is your doctor? 

Here are some tips per yours questions above:

Wheelchair - I recommend a model that allows you to recline.  Truth is that you're likely going to spend quite a bit of time, during the 1st month in a wheelchair since you're legs will still be healing from surgical pain and of course your legs are weakened at this point.  At those moments where you want to simply rest and/or take a nap; you will not have the desire, strength, energy to constantly be trying to transfer your self to the bed since this will be painful.   The below link is to a well-reviewed recliner wheel chair that I believe will work great for you.   My wheel chair was not recliner and boy don't I wish I had one for those first couple of months especially.    You'll benefit from this. You may even decide to sleep from it for 1 week; if transfer is far to painful.

Recliner Wheelchair https://www.amazon.com/Drive-Medical-SSP20RBDDA-Wheelchair-Detachable/dp/B005JIKB70/ref=sr_1_4?keywords=reclining+wheelchair&qid=1555733783&s=gateway&sr=8-4 

Walker - I recommend a walker that has wheels in front.   As you gain strength; you'll appreciate the ability to push on the walker to proceed forward.  At the beginning when you are struggling to walk;  you'll appreciate the non wheeled side for stability.  I also recommend including a bag to attach to the walker; so that you can easily transfer things from one place to another.  I am also going to include a link to a tray that works great for placing your dinner dishes, etc, as needed. 

Walker - https://www.amazon.com/Deluxe-Button-Folding-Walker-5-Inch/dp/B001HOM4U2/ref=sr_1_3?keywords=walker+with+wheels&qid=1555734049&s=gateway&sr=8-3

Walker Bag - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_3?keywords=walker+bag&qid=1555734234&s=gateway&sr=8-3

Walker Tray - https://www.amazon.com/Jobar-47903800-Walker-Tray-Jb4790/dp/B00Q5C91J8/ref=sr_1_2_sspa?keywords=walker+tray&qid=1555734250&s=gateway&sr=8-2-spons&psc=1

Cane - This is an easy one.  I recommend the below.   Do not rush to use the cane; just go your own pace.

https://www.amazon.com/Medline-Offset-Handle-Cane-Black/dp/B000BJBH3Y/ref=sr_1_4?keywords=cane&qid=1555734285&s=gateway&sr=8-4

Crutches
- You will likely graduated to crutches after walker. Below is a good option. Arm crutches are best for this.

https://www.amazon.com/Medline-MDS805160-Aluminum-Forearm-Crutches/dp/B00LOLL29C/ref=sr_1_5?crid=2E8S8E8TN0EGT&keywords=arm+crutches+for+adults&qid=1555734326&s=gateway&sprefix=arm+crut%2Caps%2C203&sr=8-5

---

I'll see if I can find some time to put together a tool kit for the community in the coming days so that prospect CLL'ers have the basics covered. I'll make sure to direct this over to you!

All the best,

IFS

Hey InFullStryde! Do you think this varies by individual? I've read a few stride diaries and it doesn't look like they've needed to be in a wheelchair for the first month.
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ned_flanders

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Hey InFullStryde! Do you think this varies by individual? I've read a few stride diaries and it doesn't look like they've needed to be in a wheelchair for the first month.

Ok i have tried to not post here but i suspected this diary would confuse future stryde patients.
Im worried youre going to write some kind of toolkit because the LL process in this diary is way off what is normal. Your toolkit is going to ill advise people I hope you can stick to info about stretching, nutritions and LL price. And not things like «rest in bed first month to heal from
surgery wounds.»

To future stryde patients reading:
You walk on walker day 2 postop. Crutches day 4. (Crutchless for short distances inside the house. )
There is NO wheelchair needed. I am lengthening right now and know other Stryde patients too. Its false info to say you need wheelchair and be bed ridden. I travelled through airports postop 6 days. When i got home i walked crutchless inside house. Drove car. Bought groceries on crutches. I make food crutchless, shower etc

Sitting on wheelchair or bed all day is how not to do LL when you have a weightbearing nail.
Of course its painful first time walking but thats how body heals stronger. You beat the   out of your cells, supply body nutritions and it will heal them and next day you will walk even longer.
« Last Edit: April 20, 2019, 08:47:16 AM by ned_flanders »
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finished lengthening 5.5cm femur stryde 2019.
I am not sure if it was worth it :/

ned_flanders

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Ok i have gone back and read more of this diary and its really shocking some of the advices you are giving? Sleep on wheelchair because its hard to transfer to bed? What the actual fk?

I suspect OP has had «health issues» before surgery that we are not aware of. Thats why when you read something on internet, not only on this forum, you dont know the other person. It can be someone with cp, downs syndrome or other serious issues. Always be skeptical to what u read here. Follow ur body and surgeons advice. Always
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finished lengthening 5.5cm femur stryde 2019.
I am not sure if it was worth it :/

Ghostfish

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Ok i have tried to not post here but i suspected this diary would confuse future stryde patients.
Im worried youre going to write some kind of toolkit because the LL process in this diary is way off what is normal. Your toolkit is going to ill advise people I hope you can stick to info about stretching, nutritions and LL price. And not things like «rest in bed first month to heal from
surgery wounds.»

To future stryde patients reading:
You walk on walker day 2 postop. Crutches day 4. (Crutchless for short distances inside the house. )
There is NO wheelchair needed. I am lengthening right now and know other Stryde patients too. Its false info to say you need wheelchair and be bed ridden. I travelled through airports postop 6 days. When i got home i walked crutchless inside house. Drove car. Bought groceries on crutches. I make food crutchless, shower etc

Sitting on wheelchair or bed all day is how not to do LL when you have a weightbearing nail.
Of course its painful first time walking but thats how body heals stronger. You beat the   out of your cells, supply body nutritions and it will heal them and next day you will walk even longer.
Hi ned_flanders
I think what you said is also not completely general.  I did lengthening with Stryde.  I just barely stood up with walker 2 days postop.  Then I was able to use walker without aid after 5-7 days postop.  I started using crutches after 2-3 weeks postop and until I came home.  Of course, I tried walked with or without a cane but that was just small steps indoor.  I also felt I have much more pain than others during the whole process.  Perhaps I am an old patient.
The bottom line is that people are different.  IFS's diary is about his experience, which could be very helpful to others.  Of course, other people will or should take into account that his diary is about his experience so they may experience differently.
Wish you the best of luck in your journey for the CLL!
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ned_flanders

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Hi ned_flanders
I think what you said is also not completely general.  I did lengthening with Stryde.  I just barely stood up with walker 2 days postop.  Then I was able to use walker without aid after 5-7 days postop.  I started using crutches after 2-3 weeks postop and until I came home.  Of course, I tried walked with or without a cane but that was just small steps indoor.  I also felt I have much more pain than others during the whole process.  Perhaps I am an old patient.
The bottom line is that people are different.  IFS's diary is about his experience, which could be very helpful to others.  Of course, other people will or should take into account that his diary is about his experience so they may experience differently.
Wish you the best of luck in your journey for the CLL!

If you had pushed through the pain you would be able to walk. Blood, sweat and tears.
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finished lengthening 5.5cm femur stryde 2019.
I am not sure if it was worth it :/

Ghostfish

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If you had pushed through the pain you would be able to walk. Blood, sweat and tears.
Hey, good for you, tough guy!  However, not everybody is as tough as you. Yet I still managed to lengthen a quite amount and my recovery is not bad.
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doomsday

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He is not a tough guy , most of you is just weak. Totally different thing. Betz patients are encourage to walk as soon as possible, they often stand few hours after the surgery so using the walker after 2 days and crutches after 4 days seems absolutely normal.
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InFullStryde

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Hey InFullStryde! Do you think this varies by individual? I've read a few stride diaries and it doesn't look like they've needed to be in a wheelchair for the first month.

Jaybam - Appreciate your question. You're 100% on point.  Everyone is different and their experience will be unique.   Here are my basic stats again, for those just jumping on the diary and have not read through:

I'm 37, Low to Average Flexibility before surgery. I could touch my toes; but very tight hips.  Stretched a ton a few months before surgery; but that likely didn't help much.  Although I appear to be in pretty good shape;  It is my upper body that is very strong. My legs were not very strong, average at best and I hadn't even walked much over the years.  So imagine this... If I'm experiencing positive results so far at the state I just described; your experience just might be that much better! It's something to be excited about. Potential is everything at times.

Here is a break down of my transitions roughly and note that by "Graduating" to the next level of assisted device or no device at all; does not mean that the other devices do not still have value to you throughout the LL process.  I use all my assisted devices to go along with my unassisted walking status to help me through various situations.  Safety is always going to be a top priority so be careful. 

Transitions Summary

Week 1: Wheelchair and Walker
Week 2 - 4: Walker/Crutches (Still kept Wheelchair around for long distances) and unassisted walking used for small distances on occasion.
Week 5 - 12: Crutches/Cane (Still keep Wheelchair for distances, and used walker to navigate awkward steps, example my home gym, or to perform supported stretches, or when needing my hands to grab something with hands, and unassisted walking used for small distances on occasion.
Week 13+: Cane and now more aggressive and frequent unassisted walking now that my distraction period is completed. (I'm looking forward to posting a video of my walking gait next weekend!)

Additional notes on transitions and weight bearing:


Stryde nail allows you to weight bear from the first day.  After the first week (or sooner for some), you might be able to stand up on your own two feet and do things like brush your teeth, pour a bowl of cereal, etc.  If you review my entire diary (Which is more like a novel at this point), you'll see that Stryde allowed me to be fairly active, pretty early in the CLL process versus the older precise 2.2.   Note that, week 3 is a big turning point for many as far as being flexible enough and painless enough to advance their activaties.

I think I read somewhere about "bed-ridden" in a previous reply post.  No way guys.  I actually implore you to stay out of bed and be as active as possible; without risking set back injuries.  For me, personally the bed was the most uncomfortable place to be in during lengthening.  I advise that you take a good look at a recliner chair and/or reclining wheelchair, since a wheelchair can service as a necessity for you.   Let's be practical fellas...keep those receipts and return these devices if you do not need them or got little use from them.  Be as active as possible.  Since week 2/3, I would place a timer of 45 minutes next to me and be sure to get up every 45 minutes at most to stretch a bit, stand up, walk, etc.   

More regarding weight bearing - You'll be able to take walking steps unassisted as early as the 7 days and it could be as long as one month. Could be sooner for some and longer for others. Everyone is unique and its important for you to not be discouraged if you feel you are recovering more slowly.  CLL is a process and takes considerable time no matter how you look at things.    Either way, most patients will want to have assisted support near by; so I advise prospect CLL'ers overcompensate a bit in the early going. You can always dial it down as you discover just how great your situation and recovery truly is.

I hope that the details of my experience have been helpful.  I would say that it would be my hope that this diary help to "over prepare" you for this experience! 

Guys, thanks again for your time and reviewing my diary.  I just finished my stretches and now I'm going to hit the home gym for some upper body work.   If you have any questions please feel free to reach out. 

Be good to each other and all the best,

IFS



« Last Edit: April 20, 2019, 03:56:59 PM by InFullStryde »
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671

Ghostfish

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He is not a tough guy , most of you is just weak. Totally different thing. Betz patients are encourage to walk as soon as possible, they often stand few hours after the surgery so using the walker after 2 days and crutches after 4 days seems absolutely normal.
Hey did you do CLL with Betz?
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tiggy

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Thanks IFS, really appreciate your insightful list.

Ned is correct in a sense that we should push through the pain at times to recover faster. But at the same time, over exertion and doing too much too soon leads to inflammation, which then causes a lot of pain, which then sets you back in terms of recovery. I have read a number of diaries where patients do too much and suffer from such inflammation. For example, Evolution's diary talks about this. He even stated that other Paley patients who did not over-exert themselves, unlike him, and instead rested the first week or so post-op instead of doing too much actually ended up not using pain killers as much and still recovering well and meeting their goals. With that said, I think it is wise not to put a lot of pressure on the body too soon after surgery, because after all, we had just given the body a major shock and it must be given time to recover somewhat before we dive into increased physical activity. So in this sense, having a wheelchair the first week or so may be very helpful. It really all boils down to the advice of the doctor, as well as your general philosophy on how best to proceed through the process.

I will order the things you had listed, but will hold off on the wheelchair until I speak to the staff next week during my pre-op. To answer your question, my Dr. is Rozbruch.

And I couldn't have described the feelings pre-LL better than you! All the emotions flowing through are very interesting. In a sense, I think I am absolutely insane to put my body through this all because of an insecurity about my height. And this feeling makes me nervous and quite scared of the uncertainties and potential complications. However, deep inside I know that LL will continue dwelling in the back of my mind, just like it has the past 8 yrs, and it becomes a disease almost in a sense that you are tortured because you know it must be done. All the while you grapple with how insane all of this makes you feel. Again not generalizing here, I am simply describing MY own feelings about this process. I am sure all these feelings will only intensify as the big day gets closer.

Anyway thanks again for that list. You are always there to advise and to help out man. Really means a great deal to me.
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InFullStryde

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Thanks IFS, really appreciate your insightful list.

Ned is correct in a sense that we should push through the pain at times to recover faster. But at the same time, over exertion and doing too much too soon leads to inflammation, which then causes a lot of pain, which then sets you back in terms of recovery. I have read a number of diaries where patients do too much and suffer from such inflammation. For example, Evolution's diary talks about this. He even stated that other Paley patients who did not over-exert themselves, unlike him, and instead rested the first week or so post-op instead of doing too much actually ended up not using pain killers as much and still recovering well and meeting their goals. With that said, I think it is wise not to put a lot of pressure on the body too soon after surgery, because after all, we had just given the body a major shock and it must be given time to recover somewhat before we dive into increased physical activity. So in this sense, having a wheelchair the first week or so may be very helpful. It really all boils down to the advice of the doctor, as well as your general philosophy on how best to proceed through the process.

I will order the things you had listed, but will hold off on the wheelchair until I speak to the staff next week during my pre-op. To answer your question, my Dr. is Rozbruch.

And I couldn't have described the feelings pre-LL better than you! All the emotions flowing through are very interesting. In a sense, I think I am absolutely insane to put my body through this all because of an insecurity about my height. And this feeling makes me nervous and quite scared of the uncertainties and potential complications. However, deep inside I know that LL will continue dwelling in the back of my mind, just like it has the past 8 yrs, and it becomes a disease almost in a sense that you are tortured because you know it must be done. All the while you grapple with how insane all of this makes you feel. Again not generalizing here, I am simply describing MY own feelings about this process. I am sure all these feelings will only intensify as the big day gets closer.

Anyway thanks again for that list. You are always there to advise and to help out man. Really means a great deal to me.

I'm on your side, Tiggy!  I'll see about putting together some more tips and tricks with some time left over before your surgery.  Dr. R is world class. You're in great hands!
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"Make the BEST of what you have and Make what you have, the BEST"
InFullSTRYDE with Dr. Mahboubian - Jan 2019
Start Height/End Height: 5'1.25"/5'4.25"
Status: Gained 3" and Recovered Successfully! | Stryde Nails Removed: November 2020
Diary: http://www.limblengtheningforum.com/index.php?topic=9671
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