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It sounds like we are very similar in many ways in terms of our recovery process.   Interestingly enough, I had realized that I was losing weight due to not eating much and my apetite wasn't there...so I resorted to comfort foods more than I would have prior to CLL...food like Pizza, Hamburgers, etc. I realized that there was no threat of me getting "heavy" and realized that this point I just needed some calories. I'd reach for some good Pizza and Ice Cream during these CLL times, ha ha. 

Walking, ah yes , oh yes indeed. Waddling, Side to side, legs are not really bending as smoothly as normal....All that will start to come back nicely post lengthening.  You'll look back at these times.  I took videos of my old penguin, zombie, robot walk for keep sake memories..you soon return to form as month 4, 5, 6 roll around. All of that is merely a temporary status.   I have concluded in my mind that natural walking probably can't exist during the lengthening phase; so I advise all future CLL'ers to realize that if you can stand up and waddle about for a few months then you are doing just fine.   Golden months are month 5, 6, 7 ....at this point you're happy to be walking again and meeting all your necessities and easily able to coast back to an atheletic status as the year concludes!   

Oh, I wanted to add another thing - Getting up from a chair! Yes, that will start to become much much easier around month 5 as well....as month 6, 7 roll around...you'll be able to most likely start to bounce out of the chair more similar to the old days. Give it time...It comes back to satisfactory levels soon enough.

You're doing great, man.

Indeed, we are very similar! You made me feel better about the quarter pounder with cheese meal I had for lunch at McDonalds a few hours ago! Great information! Thanks again my friend.

[InFullStryde]

Indeed, we are very similar! You made me feel better about the quarter pounder with cheese meal I had for lunch at McDonalds a few hours ago! Great information! Thanks again my friend.

Lol, I didn't know what a Wendy's burger tastes like until CLL!  I'm back to my veggies and chicken. lol.  Talk soon, man!

[SimonFuller]

Lol, I didn't know what a Wendy's burger tastes like until CLL!  I'm back to my veggies and chicken. lol.  Talk soon, man!

Hey bud - what are your proportions like when you wear a tucked in shirt? Alot of people who work in an office will probably dress that way.

[InFullStryde]

Hey bud - what are your proportions like when you wear a tucked in shirt? Alot of people who work in an office will probably dress that way.

Hi Simon,

Great question.  It looks good! I'll try to send a picture soon, but overall it looks just fine.  I have long legs; but no one knows the difference.

[SimonFuller]

Hi Simon,

Great question.  It looks good! I'll try to send a picture soon, but overall it looks just fine.  I have long legs; but no one knows the difference.

Great - yes a picture/video would be great!

[tom paul 24]

Hi IFS.
Since you are already 7 months post surgery, can you tell us how are your scars?
I think a lot of people don't know you can get some pretty gross scars from this surgery and I've seen it myself when talking to some current patients.

[InFullStryde]

Hi IFS.
Since you are already 7 months post surgery, can you tell us how are your scars?
I think a lot of people don't know you can get some pretty gross scars from this surgery and I've seen it myself when talking to some current patients.

Absolutely. I will see if I can take a picture tonight and post them.

[darkprince111]

Congratulation for your journey!
How does it feel to be 3 inches taller?
Have a good day.

[InFullStryde]

Congratulation for your journey!
How does it feel to be 3 inches taller?
Have a good day.

Hi Dark Prince!

I absolutely love it.

[tom paul 24]

Absolutely. I will see if I can take a picture tonight and post them.

Great! I would really appreciate that. Thanks man.

[Antoine187]

Hi IFS,

At first thanks a lot for still being so much active on this forum !
When you have time to post it, I would also be intererested to the look of your scars as I couldn t see to many in the forum from other diary

[PAGrb490]

Hey IFS. I PMed you.   

[tom paul 24]

Hi IFS

I have a question concerning the biomechanics after doing 7.5cm femur lengthening. The normal tibia to femur ratio is 0.8 but after the lengthening mine will be 0.69. I would really appreciate if you could give me an insight on whether having longer femurs affects your motion.

[InFullStryde]

Hi IFS

I have a question concerning the biomechanics after doing 7.5cm femur lengthening. The normal tibia to femur ratio is 0.8 but after the lengthening mine will be 0.69. I would really appreciate if you could give me an insight on whether having longer femurs affects your motion.

Hi Tom Paul,

Great question.  It is not the same feeling as it was before and it definitely takes time for your longer femurs to feel natural to you...Afterall; your legs are truly "new legs".  Now that my femurs are 3 inches longer; there is certainly a difference in the way my steps work.  My femur spans further with each step and my shorter tibias grab the ground much quicker; so in my gait training, I have worked on perfecting an updated stride.  Fortunately, there isn't a noticeable difference and the walk is comfortable.  Definitely a difference, however.  I don't mind it; but it's important to note that your step changes after CLL.

Let me know if you have any more questions.

All the best!

[E Z]

Hi IFS, when were you able to get out of bed without any assistance?

[InFullStryde]

Hi IFS, when were you able to get out of bed without any assistance?

Hi EZ,

It took me a while to be honest.  I would say the first 1-2 weeks it was pretty difficult for me to get up on my walker on my own at all due to the post-surgery pain that I had in my left leg. Finally, at about day 14, I was able to independently get up on my walker and take steps.   I was a bit of a late bloomer when it came to CLL recovery but a strong finisher; I guess one could say.

How are you doing so far?

[E Z]

It's been a struggle trying to get in/out of bed. I literally can't get my feet off the bed without assistance, and forget about trying to get into bed without assistance. Once my feet are on the ground though, I can get into a walker easily... walk around, stand straight etc. it's only day 6 post op for me so hopefully it gets better. I just want to be able to get out of bed alone and take a piss! Lol

[InFullStryde]

It's been a struggle trying to get in/out of bed. I literally can't get my feet off the bed without assistance, and forget about trying to get into bed without assistance. Once my feet are on the ground though, I can get into a walker easily... walk around, stand straight etc. it's only day 6 post op for me so hopefully it gets better. I just want to be able to get out of bed alone and take a piss! Lol

I know how that can be EZ.... Toward end of week 2 and entering into week 3; you'll start to experience dramatic improvement.  Then; in week 4,5 another nice jump. You'll definitely be able to get out of bed on your own within the next week or two. Keep us posted.

[InFullStryde]

It's been a struggle trying to get in/out of bed. I literally can't get my feet off the bed without assistance, and forget about trying to get into bed without assistance. Once my feet are on the ground though, I can get into a walker easily... walk around, stand straight etc. it's only day 6 post op for me so hopefully it gets better. I just want to be able to get out of bed alone and take a piss! Lol

EZ, I forgot to mention; but one strategy that worked for me was sliding my self on and off the bed by "scooting" onto the bed butt side first with legs extended, careful not to move the legs much.  To get off the bed, I would scoot by butt forward off the bed, again, legs extended and not moving legs too much.  Not sure if anyone else used this tecnhnique; but for those of us who really struggle with movement immediately after surgery, this might be an option.

[E Z]

EZ, I forgot to mention; but one strategy that worked for me was sliding my self on and off the bed by "scooting" onto the bed butt side first with legs extended, careful not to move the legs much.  To get off the bed, I would scoot by butt forward off the bed, again, legs extended and not moving legs too much.  Not sure if anyone else used this tecnhnique; but for those of us who really struggle with movement immediately after surgery, this might be an option.

That's definitely an option I haven't tried. I usually have pillows under my knees to kinda bend them when sleeping to fight stiffness and it's a bit more comfortable. I might have to ditch those though.

I have another question for ya tho! I got my ERC device today and Ive taken the advice of lying flat on a surface, but I'm paranoid as hell about not putting it in the right spot and not getting contact. I honestly forgot to ask, but what's the margin for error do you think? is there a way you can actually screw up?

[InFullStryde]

Hi Ez, as long as you're on the line that was drawn for you... you are good. The magnet is very strong.  You will not miss it.  I advise you to buy a statiometer from Amazon..so that you can measure your gains every few days...

[FutureManuteBol]

Hi InFullStryde

I'm looking forward to your post where you explain the psychological effects of this surgery.

Take care!

[Movie]

IFS what's up bro how is it going? almost 9 month post op?

[CodyTheDog]

EZ, I forgot to mention; but one strategy that worked for me was sliding my self on and off the bed by "scooting" onto the bed butt side first with legs extended, careful not to move the legs much.  To get off the bed, I would scoot by butt forward off the bed, again, legs extended and not moving legs too much.  Not sure if anyone else used this tecnhnique; but for those of us who really struggle with movement immediately after surgery, this might be an option.

Hey InFullStryde, thank you for sharing your experiences! How much money would you budget to do 8 cm of femur lengthening with your doctor? Including living costs and everything?

[InFullStryde]

Hey InFullStryde, thank you for sharing your experiences! How much money would you budget to do 8 cm of femur lengthening with your doctor? Including living costs and everything?

Hi Cody,

I would estimate that the costs, including surgery, PT (co-pay w/ insurance), prescriptions (co-pay w/ insurance) and auxiliary equipment such as a walker, crutches, etc. come to about $75,000.   I was fortunate enough to be able to undergo the CLL procedure in the comfort of my own home since I am local to Dr. M's offices so as far as living expenses... this would be in the range of what one could expect for about 90 days of lodging at a motel and your standard living expenses.   I'd estimate that with travel and living expenses in mind you should probably budget about 80-85K.   

I should mention also, that it's wise to have money stored away for possible complications or at least a plan on how you plan to pay to resolve complications should you enounter them. It's a very small % of procedures that run into complications; however, it happens and you get through it.  Fortunately, I was complication-free. 

[InFullStryde]

Good morning my CLL'ers!

I hope you're all doing well.  Just checking in.  I plan on providing an update here very soon; but real quick - For all intents and purposes... I'm doing great.  I've been back to normal living for quite some time now (4 months roughly).  As I concluded the 9-month mark of my post-operative recovery, I'm back to jogging and my legs are feeling very normal now and aside from the occasional tightness which continues to improve, it's easy to forget I had anything done.   I'll be back with a more detailed update very soon.

Thank you again for all your support and whew, I'm glad this is just about over.   I plan on removing my nails at some point in mid to late 2020 or early 2021.

All the Best!

IFS

[limewalk]

Do you recommend Dr Mahbobian InFullStryde?

What were some pros and cons of going with him?

He does a lot of CLL cases but does he do a lot of other ortho surgeries?

I don't live in that area so can you tell me about how other people in that area perceive him? Like do people in the LA area say "Oh you have a bone problem, you should go see Dr. M he is an expert ortho surgeon"? Or is he known only for CLL in particular? How did you find out about him?

[CodyTheDog]

Hi Cody,

I would estimate that the costs, including surgery, PT (co-pay w/ insurance), prescriptions (co-pay w/ insurance) and auxiliary equipment such as a walker, crutches, etc. come to about $75,000.   I was fortunate enough to be able to undergo the CLL procedure in the comfort of my own home since I am local to Dr. M's offices so as far as living expenses... this would be in the range of what one could expect for about 90 days of lodging at a motel and your standard living expenses.   I'd estimate that with travel and living expenses in mind you should probably budget about 80-85K.   

I should mention also, that it's wise to have money stored away for possible complications or at least a plan on how you plan to pay to resolve complications should you enounter them. It's a very small % of procedures that run into complications; however, it happens and you get through it.  Fortunately, I was complication-free.

Thanks! Aside from required equipment (walkers, crutches, etc), what other objects did you find were helpful for being partially immobilized? Ex: I heard some people get bath towels when they want to wash but don't want to go to the shower and risk slipping.

[bgreeneee]

Hi IFS—how long does it take for the bone to fill in and harden after the growth stops? My distraction is smaller than yours but curious how long it took for yours?

[InFullStryde]

Do you recommend Dr Mahbobian InFullStryde?

What were some pros and cons of going with him?

He does a lot of CLL cases but does he do a lot of other ortho surgeries?

I don't live in that area so can you tell me about how other people in that area perceive him? Like do people in the LA area say "Oh you have a bone problem, you should go see Dr. M he is an expert ortho surgeon"? Or is he known only for CLL in particular? How did you find out about him?

Hi Limewalk, I'm happy to answer these questions.

Do you recommend Dr Mahbobian InFullStryde? Yes. 100%. Excellent surgeon and I have yet to see one recorded thread on a failed CLL. All of his patients from what I am aware of have been able to obtain at least 2 inches and most nearly 3 inches.  I chose Dr. M because he was close by to my home and had a good track record of successful CLL cases.

What were some pros and cons of going with him? I wouldn't call it a "Con" per se, however, I believe that many patients may feel more comfortable with an integrated Physical Therapy program.  Dr. M does not require you to lengthen in the city of North Hollywood, therefore he does not require you to attend his PT program and counts on his patients to sign up for certified PT programs at the location of their choosing.  Most patients prefer to lengthen at home.  I will say that Dr. M and staff work very closely with the PT program to ensure that the proper stretches and strengthing programs are being undergone. 

The pros: Personable and Good Bedside Manner.  Answers emails quickly.  Will respond same day/night via any calls to his after-hours dispatch, performs a clean, complication-free install of the Styrde nail. Most of his patients are up and walking unassisted within a few of weeks his surgery.  Minimal scars, and cost effective. He is offering the surgery at the lowest rate compared to the other CLL doctors and also is Care Credit eligble; so if you need to finance this surgery; you have this option.  The most important thing that Dr. M did for me was assess my body every 3 weeks to determine safe lengthening.  I was ready to stop at 2 inches because I was feeling very uncomfortable.  He emplored me to continue to 3 inches because based on his assessment; he knew I could do it. I cannot tell you how important that 3rd inch was to resolving my height dysporia.  Greatful for his candor and wanting to help me achieve the most out of this very difficult procedure. 

He does a lot of CLL cases but does he do a lot of other ortho surgeries?
Most of Dr. M's surgeries are non-height lengthening procedures. He's a Doctor of Orthopedics.  He resolves tears, twists, breaks, knock-knees, etc, etc, etc.  Height Lengthening is an auxillery service that he offers and promotes to men and woman who suffer from height dysphoria; but CLL is not what most of his reviews are compiled of.

Overall, I urge you to review Dr. M's yelp profile and other review profiles.  In addition, feel free to reach out to the variety of patients he has served via the forum.

Good luck and All the Best!

IFS

[InFullStryde]

Thanks! Aside from required equipment (walkers, crutches, etc), what other objects did you find were helpful for being partially immobilized? Ex: I heard some people get bath towels when they want to wash but don't want to go to the shower and risk slipping.

Hey again, Cody!  I'll see if I can compile a list of things that helped me. There was so much and depending on your condition before CLL, you may require more or less.  I'll create a separate post for this soon and hopefully by late October for you and others.