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[psilocybe]

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!

[InFullStryde]

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!

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.

[InFullStryde]

Day 61 Post Op - 3 more days until 2 inch milestone [4.706 cm or 1.853 inches Taller!]

Greetings LL'ers,

I hope everyone is doing well out there.  Today started out pretty rough.  I was able to sleep about 5 hours straight which you would think is a great thing; but one problem. When your legs are in the same position for 5 hours, they lock up! It was very uncomfortable.  I always say to prospect CLL'ers... Do not judge your CLL condition by how you feel in the morning. Until distraction is done and you have giving your soft tissues the time they need to truly adapt to the new legs; you're going to have rough mornings.  Other then that, things went pretty good once I got myself up and moving.   I have 3 more days until Friday, which will be my big 2 inches gained moment.  I'll keep fighting the good fight.

Pain: For me, the morning was awful. I have never been so uncomfortable. My legs felt very stiff after a lengthy uninterrupted sleep.  After I got up and moved a round a bit, I was just fine.  I did not have pain for the entire day.  Both legs felt good.  0-1 pain throughout.

Flexibility and movement: Movement is good, Flexibility exists.  I will definintely need 2-3 months of strengthening and stretching once I'm done with detraction before I'm walking decent again, maybe less, we'll see.  Either way, I'm still in the ball game.   My main concern is that I am displaying some common CLL symptons and I am monitoring those closely.   

Today's' Activities: 8 hour work day via remote connection, 2 Self PT Sessions.

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.

Well, I'm at day 61, so the world continues to turn as it should.   On Friday, I'll be at the 2 inches milestone and will also see Dr. M for assessment and x-rays.   Time keeps flowin' and I keep growin'.

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

[star-ray]

Sorry to hear about your parents 

Your story is very inspiring and wow man I love how dedicated you are. Will be following your diary.

Wish you all the best my brother.

[InFullStryde]

Sorry to hear about your parents 

Your story is very inspiring and wow man I love how dedicated you are. Will be following your diary.

Wish you all the best my brother.

I really appreciate it buddy.  I had some great parents and they would be proud to see me go forward with this procedure; knowing that it takes will and courage.   Congrats on your new CLL journey. We'll be following each other on this one and feel free to reach  out with any questions.   Talk soon and best regards,

-William

[InFullStryde]

Bonus Post!

Here is a great PT Session for CLL'ers and prospect CLL'ers!

Here are some stretches! I tried to find examples. Do this every day even if it takes forever....You will be glad you did. Note, that some of these exercises are "standing up" you can't do this right now; so ignore. Focus on the laying down ones.

These workouts will ensure you can FIGHT against Lordosis.  The cause for Lordosis is weak glutes and hips. When you become strong in this area in a 2-3 or 4 months your eventual duck ass will go way.   




Another huge challenge is to keep your LEGS Straightened.  Here are videos. Do these Daily! Even if your legs are fine now..please do this. I promise you that eventually once you hit 4cm or 5cm or even sooner...you will face this challenge.







Hamstrings



This one!!!! -



Quads   or you can do this on your stomach





Thomas Stretch



Inner Thighs



To Strengthen....

For Quads...do straight leg raises while you on your back,...bend the leg you are not raising

For Hips and Glutes, do side raises with your leg...you should be on your side...and raise from your hips. bend the leg you are not raising



Great Glute strengthening:




----

Okay these are a good start. I recommend getting a little bike to warm up with - https://www.amazon.com/dp/B07BDRFMZK?aaxitk=1ia2GSBVuAm68YlaUsi2IA&pd_rd_i=B07BDRFMZK&pf_rd_p=e037c154-e093-48a4-b127-477e5e294e3f&hsa_cr_id=8595445860601&sb-ci-n=asinImage&sb-ci-v=https%3A%2F%2Fimages-na.ssl-images-amazon.com%2Fimages%2FI%2F51YFweivxKL.jpg&sb-ci-a=B07BDRFMZK

let me know if any additional suggestions are needed.

Talk soon,

IFS

[InFullStryde]

Day 62 Post Op

Good evening CLL'ers. I hope all is well.

Just as update for you, I am going to be pretty busy the next couple of days; so my next update will likely be on Friday evening.  Friday should mark my official "welcome" to 2 new inches of height.  Also, I have my 2 month post op appointment with Dr. M on Friday during the morning hours.   I will post details of this and include x-rays of my legs.

Thank you for your support, encouragement and interest in my CLL journey. If you have any questions or feedback for me, please do not hesitate to reach out.

Best Regards,

[Purushrottam]

These are really good exercises. I'm incorporating these into my daily routine.

2 inches is a huge milestone, so congrats. You are more than halfway there.

[InFullStryde]

These are really good exercises. I'm incorporating these into my daily routine.

2 inches is a huge milestone, so congrats. You are more than halfway there.

Thank you, Puru. Giving it all I got.

[Bastouille]

pm sent, about your sleep

[InFullStryde]

pm sent, about your sleep

Life saver, thank you. Will try this.  Appreciate the help so much. The sleep is really taking its toll on me.

[YellowSpike]

I remember all too well how much the lack of sleep impacted me during the lengthening phase. It was torture. Two things that helped me were Benadryl and doing some cycling before bed to loosen the muscles up. Sometimes I’d even wake up in the middle of the night and hop on my bike.

The good news is that normal sleep comes back super quickly after you’re done lengthening. I remember sleeping amazingly well like a night or two after I stopped lengthening.

[InFullStryde]

I remember all too well how much the lack of sleep impacted me during the lengthening phase. It was torture. Two things that helped me were Benadryl and doing some cycling before bed to loosen the muscles up. Sometimes I’d even wake up in the middle of the night and hop on my bike.

The good news is that normal sleep comes back super quickly after you’re done lengthening. I remember sleeping amazingly well like a night or two after I stopped lengthening.

YellowSpike, Thank you. May I PM you? I want to review a few things re: CLL as I am now at that 5cm mark and it's crunch time for me. I am really feeling it.

Thank you,

[InFullStryde]

Day 64 - 2 Month Post - Op checkup with Dr. Mahboubian  [5.1 cm or 2.00787 inches Taller!]

Greetings LL'ers,

I'll jump right into my meeting details with Dr. M.  As with all meetings, the first thing that you will do with Dr. M visits for the most part will be having your X-Rays taken.  This, after-all, is how he assesses your lengthening and bone growth as well as review the nail and other leg health factors.  Upon reviewing my x-ray, Dr. M noted that I have excellent bone growth and all is looking great there.  Additionally, he confirmed that I have lengthened 5.1 cm or the magic 2 inches.  I'm 2 inches taller? Wow.  I'm really taken back by that.   I have never been able to identify as a person that was taller than 5'1.  I won't go into the long list of what that meant for me; however, to be able to now stand 1/4" over 5'3 was pretty cool.  I'm taller than my sister now; which is a great feeling.   It's all perspective really.   To me, these 2 inches feel great and I'm honestly perfectly happy ending this entire process with 2" but...I'm not going to stop just yet.   Any additional Millimeters from here-on is considered icing on the cake.  I'm going to monitor myself very carefully each day to make sure I have not reached that limit. Dr. M noted a few items at which may constitute a reason to stop lengthening, such as you are unable to straighten your knee, even after force, nerve issues, duck ass becoming to severe...etc.

My CLL Symptoms are the following.  Take note prospect CLL'ers

- Very tight muscles such as hamstrings, quads, glutes, hips, etc. 
- Slight 2-4 degree bend of right leg (difficulty straitening) I am able to straighten when flexing
- Slight 1 degree bend of left leg (difficulty straitening). I am able to straighten when flexing
- Slight Duck Ass. I am able to straighten back when flexing 

For the most part all typical CLL'ers can expect some of the followup above items to take place.   If you are planning CLL soon, get to stretching and you just might be able to avoid these above.

In reviewing with Dr. M, he advised that I'm doing very well and that he recommends to continue lengthening at 1 mm a day.   He mentioned that my above conditions should heal relatively smoothly and in due time once lengthening is over with.   

A great point - Dr. M observed my walking unassisted and we all shared a laugh.   Despite my awkward Frankenstein like steps, we are all astonished by how, with the new Stryde nail I am able to walk at only 2 months.  In the past, with the older precise nails, it would take 4+ months for any of the patients to be able to weight bare or walk at all.  It's a wonderful advancement, indeed.  I'm not sure how I could cope with not having the flexibility to stand full weight on my legs for 4+ months.  I tip my hat to all the LL'ers before me who did this. You are strong and awesome.

I have posted my x - rays below.  Good callous growth and 2 inches worth of lengthening in place.





Thank you again for your support guys. Every millimeter from here on out is very difficult.  I'll push the best I can and I will be responsibile to not go beyond my bodies limit.  My next goal is 6cm.

If you have any questions for me, please do not hesitate to ask! Best regards,

[totallyred]

Please ask about osteonecrosis...is it possible for someone who undergoes cll to get osteonecrosis.

[InFullStryde]

Day 65 Post Op - Journey Continues [5.2 cm or 2.047 inches Taller!]

Greetings LL'ers,

Today was a pretty chill day.  I think at the 2 month point of CLL, one can say that they have established a routine; which is a great thing.  On  the flip side of the coin, a CLL'er at month 2 is pretty tired of the process. It's a long and tiring one; but it is amazingly great to be 2 inches taller.  Another thing about day 65 is that you're now looking at the end of the distraction (or lengthening phase) very soon (within days or a few weeks).  You're monitoring your body closely and weighing the extra millimeters vs your bodies ability to recover well.  Fortunately, I'm managing quite well.  My next goal is 6cm, and we'll decide what is next after that. 

Pain: The worst things about CLL pain at this point is the tight / stiffness of the thigh since you have lengthened over 2 inches.  It's not really pain; but just an annoyance to not have the ability to move more freely. Apparently all this comes back during consolidation phase and there after.   The other area that is uncomfortable is the elevated tightness during long rests in your bed, sleeping or not.  If you do not keep you legs moving, you get very tight and it takes a little while to get warmed up again. 

Flexibility and movement: Very tight and stiff, but still can move okay. Flexibility is at its all time low; but still manageable and usable. I'm mainly using crutches and I am able to take unassisted steps with no issue; but my thigh muscles generally become tired fairly quickly; so I don't walk too much without crutches for safety reasons.

Today's' Activities: Rested around the house, 3 Self PT Sessions, 1 upper body workout on bowflex

CLL Symptoms:
 
- Very tight muscles such as hamstrings, quads, glutes, hips, etc.
- Slight 2-4 degree bend of right leg (difficulty straitening) I am able to straighten when flexing
- Slight 1 degree bend of left leg (difficulty straitening). I am able to straighten when flexing
- Slight Duck Ass. I am able to straighten back when flexing 

We keep it going strong, guys.  1 mm at a time.

Talk soon and Best Regards,

[Purushrottam]

Wow, the bone has already grown a lot in the gap. Stryde makes a huge difference!

[Canon]

Pictures please

[InFullStryde]

Wow, the bone has already grown a lot in the gap. Stryde makes a huge difference!

Thank you, Puru.

Being able to weight bear really stimulates bone growth. I'm grateful that it doesn't seem that bone growing back will be an issue for me on this journey.  Thanks again and I'll keep everyone updated.

[Canon]

Would be nice to see a direct comparison image how much difference in height we actually can see

[InFullStryde]

Would be nice to see a direct comparison image how much difference in height we actually can see

I'll see what I can create and post soon.  Thank you for following my diary! It's a journey but I can see the light as I am nearing the end of distraction phase now.

[zlRadamanthys]

Hello friend I was reading your diary and my best wishes for you, I hope everything goes well. I have a question out of context since I'm 169 cm but I think the size of my hands is abnormally small since they measure about 17 cm in length and my feet I wedge 8 US like 26 cm although I have a spare finger. I would like to know your American shoe size and the length of your hands because if I lengthen to 176 cm I would not want to seem disproportionate. Thank you very much and I will be with you on this trip, best wishes warrior

[InFullStryde]

Day 66 Post Op - Journey Continues [5.3 cm or 2.09 inches Taller!]

Greetings LL'ers,

Today was a good one. I woke up with not much morning pain which was great.   I don't know what happened but something inside of me got excited... I 'm in the final stretch and every millimeter counts.

Pain: No pain at all really; other then muscle stiffness discomfort. 

Flexibility and movement: Walking unassisted; but using crutches mostly for safety. As soon as I'm done with distraction; I will begin to walk more unassisted as my focuses shifts from growing to walking normally again.

Today's' Activities: Rested around the house, 3 Self PT Sessions, 1 bow flex workout

CLL Symptoms:
 
- Very tight muscles such as hamstrings, quads, glutes, hips, etc.
- Slight 2-4 degree bend of right leg (difficulty straitening) I am able to straighten when flexing
- Slight 1 degree bend of left leg (difficulty straitening). I am able to straighten when flexing
- Slight Duck Ass. I am able to straighten back when flexing

We keep it going strong, guys.  1 mm at a time.

Talk soon and Best Regards,

[InFullStryde]

Hello friend I was reading your diary and my best wishes for you, I hope everything goes well. I have a question out of context since I'm 169 cm but I think the size of my hands is abnormally small since they measure about 17 cm in length and my feet I wedge 8 US like 26 cm although I have a spare finger. I would like to know your American shoe size and the length of your hands because if I lengthen to 176 cm I would not want to seem disproportionate. Thank you very much and I will be with you on this trip, best wishes warrior

Thank you for following my diary, Radamanthys! Feel free to pm me and I'll answer questions and we can review!  Talk soon.

[AnotherLevel]

Hello InFullStryde,

I’m so pleased to hear things are going so well for you, I’ve been following this thread with great interest as I plan to complete this procedure with Stryde when I can get everything in place so Thankyou for all the infornation

Can I ask what your pre op flexibility was like,

Could you touch your toes? If so by how far?

Did the doctor tell you that this was very important? Can you touch your toes now?

I ask as I’ve been working on my flexabity for sometime now and it’s not improving as i would like,


Many thanks and take care.

[Pilor]

Hi,

Thanks for your detailed review.

When you say you are walking, what is the average distance you are walking every day?

[InFullStryde]

Hello InFullStryde,

I’m so pleased to hear things are going so well for you, I’ve been following this thread with great interest as I plan to complete this procedure with Stryde when I can get everything in place so Thankyou for all the infornation

Can I ask what your pre op flexibility was like,

Could you touch your toes? If so by how far?

Did the doctor tell you that this was very important? Can you touch your toes now?

I ask as I’ve been working on my flexibility for sometime now and it’s not improving as i would like,


Many thanks and take care.

Hi Another Level! Thank you for following my diary. I sure hope you have found some good value from the content I have been posting.  To answer your question; my flexibility was average to below average when I started the surgery. In fact, I had my consultation about 4 months before I had surgery and I was about 5-6 inches from touching my toes (while standing up).  My surgeon, Dr. Mahbouban was explicit in telling me that my recovery will be much easier if I can increase flexibility in hamstrings by surgery date. Naturally, the goal was to touch by toes while standing up, sitting down, etc.  In 3 months time, while stretching each day, I was finally able to touch by toes, by just barely, a few weeks before surgery.

Dr. M, and other Doctors, even Paley, will more than likely go forward in performing CLL surgery with you even with the lack of flexibility; but you will need to work even harder during your recovery with PT and self stretching so that you do not get too tight.  Now that I am in the final couple of weeks of the distraction phase, I would say that 5cm (2 inches) isn't terribly difficult, even with average to low flexibility.  That 3rd inch becomes the larger challenge.

Tell me more about your flexibility and I will compare it to mine.  Personally, I do not believe you have anything to worry about, unless you are experiencing abnormally stiff joints.  Most people are stiff...so abnormal would be stiffness that is beyond what we can expect from the average person. 

I hope this helped put some things in perspective for you! Feel free to reach  out to me as much as you need.  My goal is to help the community by sharing my personal experience with the CLL journey.

[InFullStryde]

Hi,

Thanks for your detailed review.

When you say you are walking, what is the average distance you are walking every day?

Hi Pilor! My pleasure to assist the community.   

My "unassisted walk" for me means that I am taking steps with no devices to help me.  To be clear, my walk looks like Frankenstein duck right now due to tightness and weak thigh muscles.  My strength is 500% stronger then it was 60 days ago; however, it is still needing more work before I will be able to walk close to normal. I would grade my walk to 10% normal right now.   Currently, I exercise about 2 - 3 times a day in my apartment, and 75% of it is walking on crutches.  25% is me letting go of my crutches and walking about 30 feet up and back many times with no assistance.  So I would say I walk about 1/2 a football field (50 yards) per day unassisted now. 

With this in mind, I am very careful about not overdoing it. I do not want to risk injury, fatigue and set back on my journey.  My personal belief is that a person can probably walk many yards with some rest in between on the Stryde nail. I just happen to have started my journey with weaker leg muscles than the average person. 

My favorite things about Stryde so far:

- Weight bearing! I never have to worry about how much weight I am putting on my legs.  I stand up and walk (with and w/o crutches) at full weight bearing
- My bone is growing much better than patients using the older precise. (Reference latest x-rays, callous is nicely filled in and waiting to harden as soon as I'm not lengthen)
- I can exercise easily with crutches.  Use the crutches only to support your balance; but fully weight bear so that your butt, hips and other thigh muscles continue to strengthen. 

Let me know if you have any more specific questions. I'll be happy to answer the best I can. 

 

[AnotherLevel]

You diary has been very helpful, everyday I await for your update!

I think that 6cm would be enough lengthening for me , and I always had this figure in my head for better proportions, and quicker recovery,

Assuming you stop lengthening around the 6cm mark how long does your doctor estimate for full consoladation?

I’m around 5 inches from the ground when trying to touch my toes, and my hamstrings are so tight, I drive for a living and so am sat down 9 hours a day, so whatever I do I’m struggling to break this cycle?

What stretches or exercises do you recommend for improving this situation?

I’m planning on having a family member with me for 4 weeks then going alone, is this realistic?

Best regards

[InFullStryde]

You diary has been very helpful, everyday I await for your update!

I think that 6cm would be enough lengthening for me , and I always had this figure in my head for better proportions, and quicker recovery,

Assuming you stop lengthening around the 6cm mark how long does your doctor estimate for full consoladation?

I’m around 5 inches from the ground when trying to touch my toes, and my hamstrings are so tight, I drive for a living and so am sat down 9 hours a day, so whatever I do I’m struggling to break this cycle?

What stretches or exercises do you recommend for improving this situation?

I’m planning on having a family member with me for 4 weeks then going alone, is this realistic?

Best regards

Great to hear!

With the new Stryde nail, your consolidation is going to be much better since you will be weight bearing for most of the distraction phase.  You can anticipate to consolidate like a normal bone will at 6-8 weeks.

Do this stretch 2 times a day, for 3 months and you will be touching your toes or very very close. That is a guarantee!



For the first month, yes, definitely have someone with you.  You will be fine alone, after that, however, have an emergency person to call and help you as needed.   It's also nice to have someone come and help you clean every periodically.  More help the better.

Let me know if you have any additional questions for me.

[AnotherLevel]

Thankyou so much, I will start this program today, I just want to improve this flexibility as I understand that it will make the procedure so much better,

Did you have IT band release?