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

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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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Quote from: ned_flanders on April 20, 2019, 08:21:23 AMOk 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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Quote from: Ghostfish on April 20, 2019, 10:35:35 AMHi 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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Quote from: ned_flanders on April 20, 2019, 10:54:22 AMIf 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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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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Quote from: jaybam on April 20, 2019, 07:20:21 AMHey 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

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Quote from: doomsday on April 20, 2019, 01:07:41 PMHe 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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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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Quote from: tiggy on April 20, 2019, 03:39:33 PMThanks 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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(Saturday) Day 106 Post Op - Day 14 Consolidation/Recovery Phase - DISTRACTION COMPLETED....[7.5 cm Achieved / 3 inches Taller!]


Good evening CLL'ers,

I hope the weekend has been a good one so far. Quick  update.  Today, once again, was the best day I have had so far with these legs.  I was able to take 5000 steps and am moving around pretty well unassisted.  My primary challenge right now is my Anterior Pelvic Tilt.  I am working on that daily and it will take some time to resolve.  Other than that things are going well.  I'll update again tomorrow!

All the best,

-IFS