Diary - January 2019 - In Full Stryde with Dr. Mahboubian of North Hollywood.

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Quote from: Purushrottam on March 03, 2019, 06:26:25 AMWow man you are blazing through this. It'll be over before you know it.

I'm seriously impressed that you are able to work 4 hours a day remotely. When I was doing LL, I was so demotivated that I had to be dragged into doing the 2-3 physical therapy sessions.

Puru, Thank you, man.   I totally get and understand the motivation part.  CLL is a test of wills, big time.  I have my good and bad days; that is for sure.

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Quote from: Purushrottam on March 03, 2019, 06:26:25 AMWow man you are blazing through this. It'll be over before you know it.

I'm seriously impressed that you are able to work 4 hours a day remotely. When I was doing LL, I was so demotivated that I had to be dragged into doing the 2-3 physical therapy sessions.
Great work pal - keep going

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Day 59 Post Op - 5 more days until 2 inch milestone [4.506 cm or 1.77 inches Taller!]

Greetings LL'ers,

I'm going to take a break with a thorough update today. I really just need to rest. I'll be back at it tomorrow. Wishing all of you well this weekend!


5 More days left until 2 inches.

If you have any questions, feel free to let me know.  Talk soon and best regards.

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Quote from: InFullStryde on March 03, 2019, 11:36:23 PMDay 59 Post Op - 5 more days until 2 inch milestone [4.506 cm or 1.77 inches Taller!]

Greetings LL'ers,

I'm going to take a break with a thorough update today. I really just need to rest. I'll be back at it tomorrow. Wishing all of you well this weekend!


5 More days left until 2 inches.


If you have any questions, feel free to let me know.  Talk soon and best regards.

hey man, hows your walk full weight bearing?
does it look normal or no? Can others tell something is wrong when walking full weight bearing?

thnx

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Quote from: MirinHeight on March 04, 2019, 11:00:50 AMhey man, hows your walk full weight bearing?
does it look normal or no? Can others tell something is wrong when walking full weight bearing?

thnx

Hi MirinHeight!

Good questions. Everyone is different, I know. I have reviewed a few other Styrde Diaries and everyone has a different way to report the weight bearing attribute.

For me, I can weight bear and take steps; but those steps look very much like there is something wrong and its immediately noticeable.  My unassisted steps are small and since, my glutes and hips are taking a long time to resurface; I am compensating strongly.  I mainly am using my crutches to get around, as a result.  While using my crutches, I am full weight bearing still. I use the crutches only to level my hips/glutes since for now they are not ready to produce as they need to.   This little point that I can use crutches with ease is great news because one can resume work and other family activity looking more natural versus, being confined to a walker which doesn't simulate a good walking gate as much as crutches can.

For a someone who was pre-op, more active physically with their legs and much better shape in there hips/glutes area, I anticipate they will walk a lot more swiftly than I do at this point. I was the guy that skipped leg day and barely did any type of leg activities.  Was all upper body and frankly, I barely even took walks.  Now with all this in mind, I am walking much better at this point than anyone using the previous Precise method since I am able to weight bear of course. 

So the moral of the story is that the Stryde nail can easily hold you.  In your Pre-Op, I do see value in activating your hamstrings, quads, hips, glutes as much as you can so that they are alert and more ready to deal with the surgery effects. 

I hope I answered your question, MirinHeight! It's a toss up really as to when one will walk more "normally" with Styrde.  The good news is that you can weight bear regardless of the walking.  I do not believe that under most circumstances that anyone will have a "normal walk with Stryde" nails until at least some weeks after distraction is completed. Could still be a couple of months.  It all depends on those factors that you just don't know until you go through the surgery. Also,  I do feel confident that after my distraction is done that I will progress pretty fast with the walking since I can weight bear from day one post distraction.  I am looking forward to that.

If you have any more questions, please feel free to let me know!  Thank you and best regards,

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Hello IFS good to see you still holding strong. Many users complain that the hardest part of LL is the boredom when alone in a far away country with half your body functioning.  Since you work 4-8 hours mostly and spend a solid amount of hours doing PT I can imagine you're pretty occupied in life right now. I also have no problems with boredom and have accepted my frames as part of daily life. To be honest I only rage at them when Im trying to get a comfortable sleep.

Anyway I notice you have problems in sleeping and the first hour of waking up is hard and I have the same sentiments as you...

Might I suggest a latex foam mattress, they are very soft and would help you a lot if you're a side sleeper. The normal beds are hard and only help if you're a back sleeper but as we sleep our body changes positions and it makes it very uncomfortable if you change sides and wake up due to pain.

Or its cheaper alternative - https://www.amazon.com/gp/product/B00UYG9WB8/ref=as_li_tl?ie=UTF8&tag=oyg-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B00UYG9WB8&linkId=c1e4bca3e7126ae03e9f7af68232a5c7 - credits to overrideyourgenetics from his website

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Quote from: makeme6ft on March 04, 2019, 10:50:05 PMHello IFS good to see you still holding strong. Many users complain that the hardest part of LL is the boredom when alone in a far away country with half your body functioning.  Since you work 4-8 hours mostly and spend a solid amount of hours doing PT I can imagine you're pretty occupied in life right now. I also have no problems with boredom and have accepted my frames as part of daily life. To be honest I only rage at them when Im trying to get a comfortable sleep.

Anyway I notice you have problems in sleeping and the first hour of waking up is hard and I have the same sentiments as you...

Might I suggest a latex foam mattress, they are very soft and would help you a lot if you're a side sleeper. The normal beds are hard and only help if you're a back sleeper but as we sleep our body changes positions and it makes it very uncomfortable if you change sides and wake up due to pain.

Or its cheaper alternative - https://www.amazon.com/gp/product/B00UYG9WB8/ref=as_li_tl?ie=UTF8&tag=oyg-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B00UYG9WB8&linkId=c1e4bca3e7126ae03e9f7af68232a5c7 - credits to overrideyourgenetics from his website

Thank you. I'm going to put my order in today.

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Day 60 Post Op - 4 more days until 2 inch milestone [4.606 cm or 1.813 inches Taller!]

Greetings LL'ers,

We continue forward on this journey.  I have reviewed many forum posts from CLL veterans, CLL'ers in progress, and the prospect CLL'ers who are thinking through this decision intently.   I will tell you that each persons experience is unique and different in many ways, however, there are a few things that will always be common to all CLL'ers.   The CLL procedure is long, it is challenging and it requires a great deal of work from the patient in order to be successful.   You truly will feel like you earned every centimeter and you should have great pride in that.  I cannot wait to finalize the distraction and then begin the healing phases.  I'm not sure where I will stop my lengthening, but I do know that I will reach 2 inches or 5 cm, at minimum.  I am only 4 day away from this huge milestone.

Pain: Middle of the night in the early morning, pain is always at it's worst and nothing has changed for me at this point.   I take my pain meds, try to loosen up a bit with stretching and some standing and back to bed.  Hoping that I can rest well soon. At this point I'm probably averaging about 2-4 hours a sleep per night.  I try to catch up on sleep during the day time where I will have sleep breaks often. Oh, one thing to mention. My famous left let, actually my left hip was acting a bit funny today.  It was hurting when I put weight on it so I suspended any strong walking during later afternoon and evening. Will rest this so that I can actively train my walking, hopefully by tomorrow.

Flexibility and movement: The more you lengthen, the more difficult this will become. I have lengthened my leg almost 2 inches, exactly (That is a lot!).   I am stretching 3 times a day now and I've added extra sets and reps and it seems to be helping. I'm tight in all femur related muscles.   Again, I can take baby steps without assistance devices, but prefer crutches since they support me.   I am full weight bearing for about 45+ days now.

Today's' Activities: 8 hour work day via remote connection, 3 Self PT Sessions, and 1 upper body work out on my bowflex.

CLL Symptoms Minor leg bending of about 2 degrees, however I am able to straighten after stretching and flexing intently.  Slight Lordosis (not really noticeable, unless i point it out, but can be felt on lower back).  PT says that the legs will straighten easily with the stretching and the Lordosis is unavoidable since the butt and hips are still weak.   Working aggressively on butt, hips, and abs at the moment and going forward.

Body Condition: Feeling strong today in upper body and the legs. 

I can't believe it is day 60 guys.  Time is flying and I like that.   I'll keep you posted as I approach the big 2 inch day.   On Friday, I have my follow up with Dr. M; so I should be able to upload my x-rays as well for your review.

Okay Guys, if you have any questions, feel free to let me know.  Talk soon and best regards.

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Keep up the great work!

The comments LL'ers have about sleep is most concerning to me. I already have sleep problems, so I'd be pretty terrified of extreme insomnia...

Is the 2 - 4 hour figure a an estimate or do you have something like a FitBit that's telling you how much sleep you're getting? Do you take a pain pill at bed time?

Also, when you do your stretches, how long are you holding them for roughly?

Thank you!

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Quote from: psilocybe on March 05, 2019, 09:07:56 AMKeep up the great work!

The comments LL'ers have about sleep is most concerning to me. I already have sleep problems, so I'd be pretty terrified of extreme insomnia...

Is the 2 - 4 hour figure a an estimate or do you have something like a FitBit that's telling you how much sleep you're getting? Do you take a pain pill at bed time?

Also, when you do your stretches, how long are you holding them for roughly?

Thank you!

Hi Psilocybe,

Sleeping is truly one of the more tougher challenges during CLL while in the distraction phase, especially. You are just having to deal with the discomfort of tightness and being forced to sleep in positions that you are not happy with.   I'm starting my 3rd month of CLL and it still bothers me.  I haven't tracked, but I tend to note the amount of hours I sleep each night and its around 2 - 4hrs.   On the nights you do get some sleep your legs are super stiff and hard to deal with since they have maintained a same position for so long.  It's one of those things that CLL'ers have to deal with.  I hear once distraction phase is over; that it gets much better, very quickly.

I hold my stretches anywhere from 30-60 seconds.