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[zaozari]

Feb-16-2022 - Tibia+30 - Femur+13


Alright guys today was a very tiring and rough day for me. Slept only for 2 hours (disturbed sleep with lots of pain) and woke up at 6.30 AM. My wheelchair van service came to pick me up by 7.30 AM and reached the Fort Lauderdale office (Canterspine - seems like a franchise or other office of paley institute, IDK exactly) by 8.45 AM. My appointment was at 9.15 AM so waited for 30 mins and met Dr. Giufridda at 9.30 in his office. He was asking me few questions about when the surgeries happened and what's going on with the pain med situation. I explained him everything very clearly and he said sometimes different bodies react differently to the set of medications. So he finally prescribed Percocet for me. And as it has acetaminophen in it already I should not take the tylenol. The dosage level still goes like the same as oxy meaning one tablet in every hours. Also he was asking did they already prescribe you gabapentin. Yes during my last visit with Dr. Robbins on Monday (Feb-14-2022) his assistant prescribed me gabapentin. I believe it helps with nerve pain. The dosage level for gaba goes like this, first 2 days 0-0-1 (meaning only one 1 in the night) the next 2 days 1-0-1 and the next 2 days 1-1-1 and the next 2 days 1-1-2 and the next 2 days 2-1-2 and the next 2 days 2-2-2. Once you reach this level you will continue with this dose (basically 6 tablets a day) and they will evaluate you in your every 2 weeks follow up and make any adjustments if needed. For now this is what I am going to follow for the next 2 weeks as my next follow-up appointment with Dr. Robbins is on Feb-28th and with Dr. Giufridda on March-8th.


I asked Dr. Giufridda what could be the reason oxy is not working for me? He replied there is no one definite answer for that question, aging factor and different body types there are so many reasons like that. I am in my late 30s so thought for me aging could be a thing but I could be wrong and who cares. As long as the the percocet does what I am expecting I will be so happy to achieve my target. Fingers crossed.

Then From there I directly went to my PT at 12.00 PM. Reached there by 11.20 AM and waited for 40 mins before the PT and after the PT is done my wheelchair van service was late by another 40 mins to pick me and by the time I reached home it was 2.30 PM and was very tiring. On top of that I finished my 3 lengthening sessions with 2 hours apart and now my quad muscles are very tight. SMH, Hopefully the percocet works.

Lengthening statistic so far,

Tibia: 16.25 mm
Femur: 5.75 mm
Total: 22 mm

Wish me luck guys. Thanks.

Hope you get better and rid of pain fast, first of all!
The tablets of gabapentin you refer you are going to take (2+2+2)/day are of which quantity each? 200mg, 300mg  400mg?

[tallerwouldbenice]

Each pill is 300mg

[zaozari]

Each pill is 300mg

Sorry to doubt, but as you aren't  "GodsGrace", how can you know?
In my country there are diferent pills with diferent quantities of gabapentin each: 200mg 300mg or 400mg.

[Will955]

Very inspiring Diary, man. I am also planning on doing QL with Paley in 2024 or 2025. Currently saving up, everything going well. So this diary is a godsend for me!

I saw on Paley's website the max length for the double procedure at once is 10cm? Unless you wait 1 year between?

I am planning on 11-12 cm. Do you think this would be possible without waiting 1 year in between? I am in my mid 20's and more flexible than the average person.

I hope you get your pain problems under control, mate. Rooting for you!

[motoboarder]

Very inspiring Diary, man. I am also planning on doing QL with Paley in 2024 or 2025. Currently saving up, everything going well. So this diary is a godsend for me!

I saw on Paley's website the max length for the double procedure at once is 10cm? Unless you wait 1 year between?

I am planning on 11-12 cm. Do you think this would be possible without waiting 1 year in between? I am in my mid 20's and more flexible than the average person.

I hope you get your pain problems under control, mate. Rooting for you!

20's is a great age to do this. Wish you well onto this journey!

In 1 of the past diary, an LLer asked PT's your question. The answer was: "the most they can go was 9.75cm. The rest was lower than this.". GodsGrace mentioned to me another patient who wanted to do more than 10cm like you. What he did was waiting for tibia to complete lengthening then starting femur surgery. So his 2 surgeries should've been like few months apart.

[Will955]

20's is a great age to do this. Wish you well onto this journey!

Thank you, man! I've known about LLS since maybe 2012 at age 16~. 

But never considered it back then because I thought I was gonna keep growing.

I'm from a Scandinavian country. Just about 5'8, maybe 5'9 in the morning. My father is above 6'3+. And all my friends are above 6'2. Younger generation in Scandinavia is HELLA TALL!

I had disease in teenage years which stunted my growth.

In 1 of the past diary, an LLer asked PT's your question. The answer was: "the most they can go was 9.75cm. The rest was lower than this.". GodsGrace mentioned to me another patient who wanted to do more than 10cm like you. What he did was waiting for tibia to complete lengthening then starting femur surgery. So his 2 surgeries should've been like few months apart.

Alright, I see. That sounds very promising to me then.


Sorry I hijacked your thread a little bit, Godsgrace. I am really looking forward on following your journey!

[GodsGrace]

Sorry to doubt, but as you aren't  "GodsGrace", how can you know?
In my country there are diferent pills with diferent quantities of gabapentin each: 200mg 300mg or 400mg.

yes, I have been prescribed with 300mg per pill.

[GodsGrace]

20's is a great age to do this. Wish you well onto this journey!

In 1 of the past diary, an LLer asked PT's your question. The answer was: "the most they can go was 9.75cm. The rest was lower than this.". GodsGrace mentioned to me another patient who wanted to do more than 10cm like you. What he did was waiting for tibia to complete lengthening then starting femur surgery. So his 2 surgeries should've been like few months apart.

Thanks motoboarder for answering. Hey Will955, "IAmReady" is the diary I was so impressed with (it's an interesting read) and he split the QL into 2 parts, like first tibia surgery and finished his complete tibial lengthening then after a week of his tibial lengthening is done he started with his Femur surgery because he doesn't want to deal with pain from all 4 segments of his legs and also he wanted to achieve a little more than 10 cms. I initially was planning to do the same but it took him around 7 months (need to recollect my notes) just to finish the lengthening part on both segments (tibias and femurs). That's a lot of time for me and I don't have that much time and  I am not working right now. I quit my job for 5 months for now. Also the other reason I dropped that plan was when I was speaking with Dr. Robbins he mentioned that your request can be accommodated but the amount of time you will be on blood thinners, pain killers and other tablets will be doubled which is not good for your liver considering your age since I am in my late 30s. So I had to drop that plan and stick with QL with 2-3 weeks apart.

My base goal is 10 cms however I would be happy if I can achieve 11.5 cms. I need to check with the doctors to see if they let me do that as there are so many factors involved in it. Time will tell.

[zaozari]

yes, I have been prescribed with 300mg per pill.

Thanks buddy. I hope gabapentin is helping. I haven't done LL yet but had once surges of idiopathic pain,  I started with a lower dosis of gabapentin but it was raised and after 400 mg x3  each day it finally  went away.
All my best wishes to you in  this "fight" , at least that gabapentin is really helpful to you also. What would you say about it?

[GodsGrace]

Thanks for reading my diary, zaozari. I have been taking gaba for 4 days now with the dosage levels 0-0-1, 0-0-1, 1-0-1, and 1-0-1 respectively and for the next 2 days it will be 1-1-1. I have been asked to increase it to the level of 2-2-2 gradually with every 2 days. After started taking gaba and percocet my pain level has gone down 20% so far. Maybe as you say when my gabapentin intake level increases then I may see a massive reduction in pain. Let's see. For now my sleep is still a problem. I usually hit the bed at 9.30 ish and sleep gets disturbed at 11-ish that's when the legs are heavy and that's it until morning 5 AM I unable to sleep and after that I am able to grab an hour sleep. This is my sleeping routine for the last one week. Hopefully it gets better.

[GodsGrace]

https://imgur.com/a/BmAOJw2


Sorry guys, finally, I got sometime to upload my first round of X-rays that I took on Feb-14-2022 during my emergency visit with Dr.Robbins due to heavy pain on my femurs. I am adding the imgur link here and let me know if you guys are unable to see the images.

The first image is my left tibia and the second is my right tibia and the third one is my femurs. As you can see on my femurs there is a lots of side bone callus formation that's what was causing enormous amount of pain on femurs. When that X-ray was taken it was 11th day after the femur surgery and 4th day of lengthening on femurs.

[thaw1010]

https://imgur.com/a/BmAOJw2


Sorry guys, finally, I got sometime to upload my first round of X-rays that I took on Feb-14-2022 during my emergency visit with Dr.Robbins due to heavy pain on my femurs. I am adding the imgur link here and let me know if you guys are unable to see the images.

The first image is my left tibia and the second is my right tibia and the third one is my femurs. As you can see on my femurs there is a lots of side bone callus formation that's what was causing enormous amount of pain on femurs. When that X-ray was taken it was 11th day after the femur surgery and 4th day of lengthening on femurs.

Did the doctor say anything about premature consolidation? Or were you told that amount of bone formation was normal?

[GodsGrace]

No, he didn't say that it's a premature consolidation. It's very common to have this kinda callus formation on the femurs because of the bone marrow also. I showed this to all the PTs and they have also mentioned it's a common scenario and they have seen many patients in the past with this callus formation. For some it has dissolved in few days and for some it took few weeks to months. Even Dr. Robbins mentioned that the side callus formation will dissolve over the period of time. If for any reason it didn't dissolve and consolidates then there will be an osteotomy (re-breaking the bone) that would cost me around 20k. This was mentioned to me by one of the PTs but it's one in 100 cases though. Let's see.

I will give a detailed update on my femurs in the next post where I will mention about my pain levels and how my femur situation has improved in the last few days.

[Height Journey]

No, he didn't say that it's a premature consolidation. It's very common to have this kinda callus formation on the femurs because of the bone marrow also. I showed this to all the PTs and they have also mentioned it's a common scenario and they have seen many patients in the past with this callus formation. For some it has dissolved in few days and for some it took few weeks to months. Even Dr. Robbins mentioned that the side callus formation will dissolve over the period of time. If for any reason it didn't dissolve and consolidates then there will be an osteotomy (re-breaking the bone) that would cost me around 20k. This was mentioned to me by one of the PTs but it's one in 100 cases though. Let's see.

I will give a detailed update on my femurs in the next post where I will mention about my pain levels and how my femur situation has improved in the last few days.

Yeah, in my first X-rays 2 weeks after surgery, my femurs showed a heavy callus formation that seemed to 'spill' outside of the bone separation. In the next X-rays 2 weeks later, the spilled heavy callus formation mostly dissolved and it was back to normal.

[motoboarder]

My case was similar. My 1s femur xray showed bone marrows on both. On the 2nd xray, they look "lighter". This mean they are being dissolved over time.

[GodsGrace]

Thanks HeightJourney2021 and motoboarder. I hope that will be the case for my femurs as well. I have my next follow up appointment with Dr. Robbins on Feb-28th (in 6 days) and I will have my X-rays on that day. I can definitely say the pain on my right femurs (because of that callus formation) is reduced 80% and I only feel the pain when the right leg is in improper position and it never bothers me during PT with any stretches. But my left is still painful I would say 70% pain is still there and I can see a big bump on my left where the callus formation is there. That really limits my movement and my PT sessions. Any movements that I make it pains a lot. Especially when the PT does the thomas stretch and they ask me to lay down on my belly oh my god it hurts like hell. Hopefully it gets better with time as the time goes on. Fingers crossed.

[GodsGrace]

Feb-22-2022 - Tibia+36 - Femur+19

Last Wednesday (Feb-16-2022) I met Dr. Giufridda and I was prescribed with percocet (it's also a combination of acetominophen and oxycodone) and after started taking that along with gabapentin the overall pain level reduced by 70% and I was really happy with that. However, my sleep was still a problem. During my emergency appointment with Dr. Robbins on Feb-14-2022 he suggested me to use Thermx machine instead of Polar care ice pack machine. He said if you are interested send me an email I will introduce you to a person and you can follow up with him. As he advised I sent him an email and he introduced me to a person by name Joe. The Thermx machine costs around $5500 but you can rent the machine from this guy. He charges about 750$ a month for that machine. I bargained him a bit and said I will pay you $1500 for 2.5 months and he said ok. So I started using the machine from Feb-17-2022 and I will use it until April 30th or until my lengthening is done.

Unlike the Polar care machine (where you need to fill the ice cubes manually every time the ice cubes melt) the Thermx machine produces cool and heat electronically and it's a game changer for me. Now I do not need to wake up my wife during the middle of the night for refilling the ice cubes. There is a timer with predefined cool or heat level you can set and it runs based on that. It's really amazing. Dr. Robbins told me that it's usually used by sports persons and it's very helpful. But it changed my sleep quality. Ever since I started using it (since last Thursday Feb-17-2022)I have been averaging about 8 to 9 hours of quality sleep every single day. If anyone has sleep issues I would highly recommend this product to try it out. Also I am using the heat for about 20 to 30 mins before I start my workouts. I workout couple of times (most of the days along with the regular PT session) a day and it really helps loosens up the muscles before my workout. Overall it's a very good investment I made for my current situation.


Lengthening statistics so far,

Tibia: 19.25 mm
Femur: 10.25 mm
Total: 29.5 mm

[motoboarder]

The Thermx machine is truly a great option. Would you say the 8-9h of sleep is uninterrupted at all, or do you still wake up couple times? For me I slept 6-7h at night, waking up couple times because of the discomfort of the dorsiflexion boots or when I need to change postures. I could only sleep on the sides for less than 10min because of the pressure created on the pin sites.

[GodsGrace]

The Thermx machine is truly a great option. Would you say the 8-9h of sleep is uninterrupted at all, or do you still wake up couple times? For me I slept 6-7h at night, waking up couple times because of the discomfort of the dorsiflexion boots or when I need to change postures. I could only sleep on the sides for less than 10min because of the pressure created on the pin sites.

Definitely it is not uninterrupted. I still wake up like 4 or 5 times but I immediately pass out. I put an alarm for every 4 hours to take my percocet so I definitely wake up for that. The max minutes configuration in thermx is 40 mins so after that it turns off sometimes I lose sleep when it turns off so I wake and turn it back on and immediately go back to sleep. Sometimes even if it turns off I won't wakeup for few hours and all of a sudden I get up and see the machine is off and turn it back on and go back to sleep. Sometimes I wake up to pee and I pee on the pee bottle and go back to sleep. I hope you get the point here. But even if I wake up these many times I am able to go back to my deep sleep within few minutes.

As far as the sleeping posture is concerned I just keep 2 thin pillows under my knees. Only 1/4th of the pillow (one of the corners of the pillow) not the entire pillow and I always maintain only one sleeping posture that is face upward (laying on my back). Sometimes I bend my knees on the pillows but most of the times I try to keep it straight. I tried twice sleeping on my side before the thermx machine but it was painful as you said but after the thermx there is no need for that for me at least. Because of the very long pads that covers your entire femurs on both legs it is very hard to turn on the side so automatically you will only be on one sleeping posture. This is my experience so far and honestly it is great.

[GodsGrace]

Feb-28-2022 - Tibia+42 - Femur+25

Payday today. I had my 2 weeks follow-up with Dr. Robbins and everything went well. Dr. Robbins checked my ROM and he said everything looks good so far. My left ankle is little tight when compared to my right and he noticed that too and he asked me to work on it.

My X-rays can be seen using the following link. First 3 images belong to tibia and the next 3 belong to femurs.

https://imgur.com/a/4gDcPpW


Otherwise, everyday is pretty much the same in terms of activities. The pain level is averaging from 2 to 4 mostly. Some days the pain level is little high but maximum is 5 (moderate level). As soon as I take the pain meds it is coming down to 2 or 3. As some LL veterans say it is more of a mental game as you need to repeat the same thing over and over again for 2-3 months once your surgical pain is gone. Sometimes you will feel like it is really checking your patience and for few moments you will lose your mind. At least it happened to me twice. Whenever that happens I will think about my past and my bad experiences that I have experienced for being short and why I badly wanted this procedure that will make me calm. Anyways enough of ranting and trying to keep my cool. Peace.


Lengthening statistics so far,

Tibia: 21.25 mm
Femur: 13.75 mm
Total: 35 mm

[Will955]

Thanks motoboarder for answering. Hey Will955, "IAmReady" is the diary I was so impressed with (it's an interesting read) and he split the QL into 2 parts, like first tibia surgery and finished his complete tibial lengthening then after a week of his tibial lengthening is done he started with his Femur surgery because he doesn't want to deal with pain from all 4 segments of his legs and also he wanted to achieve a little more than 10 cms. I initially was planning to do the same but it took him around 7 months (need to recollect my notes) just to finish the lengthening part on both segments (tibias and femurs). That's a lot of time for me and I don't have that much time and  I am not working right now. I quit my job for 5 months for now. Also the other reason I dropped that plan was when I was speaking with Dr. Robbins he mentioned that your request can be accommodated but the amount of time you will be on blood thinners, pain killers and other tablets will be doubled which is not good for your liver considering your age since I am in my late 30s. So I had to drop that plan and stick with QL with 2-3 weeks apart.

My base goal is 10 cms however I would be happy if I can achieve 11.5 cms. I need to check with the doctors to see if they let me do that as there are so many factors involved in it. Time will tell.

That makes sense. Not being exposed to blood thinners and pain killers for too long.

Did you ever speak to your doctor about going the full 11.5cm? Or has your planned changed since?

You noticing your new height yet? Being 3.5cm taller already. Incredible.

Keep up the good attitude, bro.

[GodsGrace]

That makes sense. Not being exposed to blood thinners and pain killers for too long.

Did you ever speak to your doctor about going the full 11.5cm? Or has your planned changed since?

You noticing your new height yet? Being 3.5cm taller already. Incredible.

Keep up the good attitude, bro.

My plan hasn't changed yet. Even during yesterday's visit Dr.Robbins was asking, "again what's your goal?" I said minimum 10 cms (T - 4 + F - 6) and if my body can support I would like to push it to 11.5 cms (T- 5 + F - 6.5). He replied, wow that's a lot but it is still in the safer limits so let's see how your body reacts at the end and based on that we will take it forward.

Yes, I am already feeling the height difference and it's really incredible indeed. I stood with the help of the walker and asked my wife to come and stand in front of me (eye to eye). She has to lift her head up to see my eyes and I was able to see her top of the head below my eye levels. Basically we both are equal heights and my wife sometimes in the morning looks taller than me. She was stunned to see the difference. It is life changing and I can't explain in words the feeling I had at that moment. But it is only 20% complete so far so it is too early to celebrate but man the 3.5 cms height difference it was very amazing.

Thanks for your kind words, bro.

[tallerwouldbenice]

That's amazing, my man.

Agreed on the mental game once surgical pain goes away.

As soon as you start feeling nerve pain (if you do), which tends to be preceded by numbness in the shins, go on gabapentin ASAP. That   is worse than surgical pain IMO, as the pain meds don't affect it.

[GodsGrace]

Thanks my friend.

I am already on gabapentin with dosage level of 2-2-2 per day. I started taking gaba from Feb 14 that's when I had very crazy pain. Once I started taking gaba and percocet all the pain has been pretty much gone and my current pain level ranges from 2 to 3 that's mainly from the lengthening and stretching.

[lcrs]

I really want to remind you of the potential danger of taking too much Percocet. Please be aware of it and check out https://rrtampa.com/opioids/percocet/

[GodsGrace]

Thanks icrs. Yes, I am aware of the side effects and when I was prescribed and started taking the percocet I read about it. Now in the last one week instead of taking 1 in every 4 hours I am gradually trying to reduce the intake and now I am taking 1 tablet in every 6 hours. Whenever I feel more pain only then I am taking 1 tablet in 4 hours but otherwise I am maintaining 1 in every 6 hours. So instead of 6 tablets a day now I am taking 4 tablets a day and I am slowly trying to go to 3 tablets a day meaning 1 tablet for every 8 hours. That's little tough at this point but I am going to try to do that.

[randomperson]

Hi GodsGrace,

How is getting about and doing tasks? Do you find it difficult to move around and transfer/do chores/etc.?

How are you keeping yourself entertained?

Hope you are doing well and best of luck!

[GodsGrace]

Hi GodsGrace,

How is getting about and doing tasks? Do you find it difficult to move around and transfer/do chores/etc.?

How are you keeping yourself entertained?

Hope you are doing well and best of luck!

Thanks for checking my diary, randomperson.

I believe I am managing fine with moving and doing chores. From my bed I will transfer to wheelchair and using the wheelchair I will move around my home wherever I want. I will move to the bathroom and do my brushing and cleaning up my urine bottle ( bought a 2000 ml capacity one from amazon, this one thing my wife really hates to touch it, LOL) and if I want to po*p I will transfer directly from my wheelchair to the toilet commode and once I am done I will transfer back to my wheelchair. Regarding the showering, my 2 bathrooms have big bath tubs (like a jaccuzi and it is very tall in height). First I bought the transfer bench but for some reason since the bath tubs are really tall even if I adjust the height of the transfer bench it wasn't fitting quite well since the bottom part of the bench was always touching the top of the bath tub. So I returned that and bought simply the bath stool. So from my wheelchair I will first transfer to the bath tub since the bath tub edges are wide enough to accommodate my bu*t (honestly you can sit there for hours and sometimes that's what I do to attend my office calls when my kid is watching the TV, LOL) and from there I will transfer to the bath stool. Once I am done with bathing I will do the same in reverse.

As far as the entertainment is concerned, I don't know this is how my day goes. I am not currently working. Took a 5 months break in fact I left my current job. I will wake up in the morning, do brushing, have my breakfast, get ready for PT, the wheelchair van service driver comes and picks me up and easily 3-4 hours will be gone in the PT process. By the time I come back home it will be lunch time and after my lunch I take a nap for almost 1-1.5 hours and then wakeup around 4 PM. Then I will work with my daughter for her homework oh man it's a torture and she simple wastes a lot of time I know she is just 6 so it's very difficult to keep her focused. But I will do my workouts and stretches while I am helping her with her homework. I have setup a mini parallel bar right next to my bed, the desk bike, and few dumbbells. I pretty much do my weight trainings every alternate days. Then after that I will take the shower and if time permits I will play with my daughter for a while then have my dinner and get back to the bed. In between all these activities I spend few mins on the lengthening part. Once I am on the bed depends on my mood I will watch either a movie or a series or crypto videos.

I have also bought an electric wheelchair and I am planning to use that from this weekend onwards. Once I start using it then I plan on going out everyday in the evening with my daughter while she does the biking. If not on the weekdays at least on the weekends. Weekends are the worst for me right now since I haven't started to going out not even in my apartment community. At least on the weekdays you go out for the PT so 3-4 hours flies by quickly.

[tallerwouldbenice]

Agreed that PT gives you a nice milestone during the day

Funny I also feel like napping around 2-3pm
Might be the gaba or some drug

[GodsGrace]

Yesterday, one of the worst days as I fell down from my wheelchair while I was getting ready for my PT. Oh man it was a lot of pain in femurs but after a pain killer it was ok. I immediately sent an email to Dr. Robbins explaining the situation and requesting for an xray appointment to make sure the nail is good. Then I left for PT and the PT was as usual and I was able to do all the stretches like the other days. I told the PT what happened in the morning so he said let's not do the standing using the walker today until we confirm everything is good in the xrays. By the time Dr.Robbins got back to me it was like late afternoon 3 PM and he advised for these kind of emergencies you need to call the front desk and book an appointment immediately and don't rely on emails as we don't check the emails frequently especially when we are in the operation room. I called the front desk and booked an appointment for today morning.  I went to the clinic after my PT today, took the xray, and by gods' grace everything is alright. Initially, Dr. Robbins had told me that his physician assistant Dayna will evaluate the xrays and let me know if anything is wrong but he himself showed up today and evaluated my xrays and told me not to worry as everything looks good and the nail is not that fragile. I was so relieved after that.

[GodsGrace]

Agreed that PT gives you a nice milestone during the day

Funny I also feel like napping around 2-3pm
Might be the gaba or some drug

Yes, I believe it is gaba as that's the only drug I take after my lunch. The pain killer timing varies as I am taking 1 tablet every 6 hours now.