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[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.

[motoboarder]

Glad you were fine GodsGrace! I had a similar experience in PT weeks ago. I was transferring carelessly from my wheelchair to the bike there (the one side by side with the wall, its seat is quite higher than a wheelchair's). I fell forward & before my right foot barely touched the ground, PT Mike caught me like a fish from behind & pulled me back up hard! It was scary as f** & affected my mood/performance for the whole day. We just gotta be really slow & careful in all of our movements/transfers.

[GodsGrace]

Glad you were fine GodsGrace! I had a similar experience in PT weeks ago. I was transferring carelessly from my wheelchair to the bike there (the one side by side with the wall, its seat is quite higher than a wheelchair's). I fell forward & before my right foot barely touched the ground, PT Mike caught me like a fish from behind & pulled me back up hard! It was scary as f** & affected my mood/performance for the whole day. We just gotta be really slow & careful in all of our movements/transfers.

Yeah man we need to be careful. Mine was a great big stunt and even now I get goose bumps if I think about it.

[GodsGrace]

March-14-2022 - Tibia+56 - Femur+39

Sorry guys for the delayed update. I am trying to update the forum at least once a week but somehow finding it hard to do that. I will try my best to do so hereafter. I had my doctors's appointment on March-11-2022 but my original appointment was supposed to be on March-16-2022. Dr.Robbins is going to be on vacation this whole week and available only after March-21-2022 so they gave me the appointment on the 11th. Everything is good so far except the 4 mm discrepancies between the tibias. During my last visit Dr.Robbins said that the right tibia is lagging behind left tibia by 4 mm but during this visit and he measured that the left tibia is lagging behind right tibia by 4 mm. I asked him how he replied I don't know and that's what the x-rays say. Let's see how the future x-rays are going to be. The discrepancies between femurs are just 1 mm for now so nothing to worry about femurs right now.

I am getting tight on the knees and tibias. I believe I have a little bit of duck ass and ballerina feet. But while standing with the walker I am able to straighten my knees and tuck my bu*t in and keep my heel straight as well and it is almost toughing the floor. I expect the situation to get worse as I lengthen more but I hope once I stop my lengthening the situation gets better day by day. I slowly got used to the dorsiflexion boots what the doctor's office gave me (from Falks prosthetics). Now I am wearing that boot for about 15-16 hours everyday and also through out the night. Initially it was really tough but gradually I increased the amount of time I wear that. The target is to wear for 20 hours. Let's see. It's just I sweat a lot so wearing for a lot of time makes me sweat in the legs a lot and even when I use the fan it's still not helping with the sweating and makes my leg so itchy in the feet especially between the fingers.

I reached 2 inches on last Saturday (March-12-2022) and asked my wife to stand next to me. Oh boy! I can definitely feel a lots of difference. I felt like her top of the head was completely under my eyes. Such a great feeling!

My x-rays can be seen using the following link. The radiology guys didn't take the femurs together. Even the doctor was pis*ed off about that. The first 2 images are femurs and the rest 3 are tibias.

https://imgur.com/a/i6GY8SA

Lengthening statistics so far,

Tibia: 27.75 mm
Femur: 23.5 mm
Total: 51.25 mm

[tallerwouldbenice]

5cm already! That's huge!

Regarding sweaty feet, maybe there are other solutions... Sprays or talc powder or something like that...

For the discrepancy, I read here somewhere that one should press on the ERC when lengthening. I did initially, but as my x-rays were always perfect I kinda stopped doing that. Maybe try that, for fear that the discrepancy increases. By the way, it doesn't matter what side of the leg you put the ERC against. You just need to be close to the nail.

[GodsGrace]

5cm already! That's huge!

Regarding sweaty feet, maybe there are other solutions... Sprays or talc powder or something like that...

For the discrepancy, I read here somewhere that one should press on the ERC when lengthening. I did initially, but as my x-rays were always perfect I kinda stopped doing that. Maybe try that, for fear that the discrepancy increases. By the way, it doesn't matter what side of the leg you put the ERC against. You just need to be close to the nail.

Thanks for the talc powder suggestion. How come I wasn't even thinking about it, LOL.  I used to keep my ERC machine on the side when I started off with the tibia and that's when I started hearing the clicking sound so I decided to keep the ERC machine on the top of my tibia and after that I never heard the clicking sound. I will continue to do so what I am doing right now and see what happens.

How are you doing with your progress? Sorry brother, I need to spend little bit more time on the forum to read yours and few other diaries but I am not having enough time to do so. Just trying to keep myself busy with other things to kill the time for now.

[tallerwouldbenice]

I'm good, I've started consolidating. Very happy with new height. Later on I might do a write-up of what I wish I had known before doing this. Right now I'm doing what I can to build muscle so that I can start walking as soon as my bones are healed.

[GodsGrace]

I'm good, I've started consolidating. Very happy with new height. Later on I might do a write-up of what I wish I had known before doing this. Right now I'm doing what I can to build muscle so that I can start walking as soon as my bones are healed.

Good to know. Congrats on your recovery and keep us posted.

[GodsGrace]

So, I am done with the lengthening phase finally on May 2nd however I had to wait until May 9th to see Dr. Robbins to take the standing x-ray to confirm everything is good. He measured the height from hip joint to ankle joint on both the feet and they both were almost identical in height. The left was 2 mm behind the right and that's within in the range. He said even if they both are accurate in length there could be some margin of error. Also I could not straighten out my left leg like the right leg as there was a lot of tightness in the knees. So he said it's all good and I returned the ERC machine finally.

I gained a total of 9.6 cms. 3.9 cms on tibias and 5.7 on femurs. I got a little proportions feeling towards the end and also I was getting tight a lot so I decided to stop at 9.6 cms and I am happy with the new height. I should have been done with lengthening 2 weeks earlier but there was a lot of back and forth games when I was at 7 cms with me and Dr. Robbins. I will explain that later.

[tallerwouldbenice]

OMG bro, 10 cm!!

Hope you'll recover fast. Still consolidating here... they take forever to check the x-rays that I send from home, which pisses me off. I want to walk! Otherwise all good. Very little residual pain, more of a bother while sleeping than actual pain.

[GodsGrace]

Alright guys. Long time no see. A quick update. Life is slowly coming back to normal. I am walking 1 to 1.5 hours a day everyday with the help of the walker. I started driving my car from May 15th. Now, I am able to go to the car from my home on my own with walker and able to sit in the car and go anywhere I want. Still in more pain. Also from car to walker and walking back home is good as well. For the last 2 weeks I am walking with the walker meaning instead of moving both the legs together by lifting the body with the help of the hands I am walking normally like one leg forward and another backward. When I walk right leg is good but left knee is very tight that I am unable to bend my leg when I transfer the leg from back to the front.

I met Dr. Robbins on June 8th for 1 month follow up. X-rays looks good however he confirmed that tibia is little slow in healing. You can find the x-rays below,
https://imgur.com/a/KcH2KA2

My next appointment with Dr. Robbins is on July 11th. I will keep you guys posted and attach my x-rays after the visit.

[GodsGrace]

I met Dr.Robbins on the 11th of July. You can find the Xrays below,

https://imgur.com/a/H0of8Wy

He told me to do a full weight bearing on my right leg. The left tibia is still slow however he told me to increase the weight-bearing on my left to 75 lbs instead of 50 lbs.

I increased my walking time to 3 hours a day at least. I am also standing a lot whenever possible. I got a couple of job offers now and need to get back to my professional life after a 6 months break. other than that, I am enjoying my new height and can't wait for the day when I can walk unassisted.

[Dirona]

I met Dr.Robbins on the 11th of July. You can find the Xrays below,

https://imgur.com/a/H0of8Wy

He told me to do a full weight bearing on my right leg. The left tibia is still slow however he told me to increase the weight-bearing on my left to 75 lbs instead of 50 lbs.

I increased my walking time to 3 hours a day at least. I am also standing a lot whenever possible. I got a couple of job offers now and need to get back to my professional life after a 6 months break. other than that, I am enjoying my new height and can't wait for the day when I can walk unassisted.

You are a very strong dude..Admire your hard work of saving up and making the surgery happen..Something which 90 percent of the folks are not able to accomplish..Are you from the US? Kudos once again!

[Asi219]

How much time to take Physiotherapy at a week ?

[GodsGrace]

Hello Realistic, thanks for spending your time and reading my diary. I appreciate your kind words. Without this forum, I could have never imagined the LL and would have lived the rest of my life with height neurosis. It's my time to give back to the community. The older diaries will get you the knowledge but only the most recent diaries will give future LLers much more confidence as it is happening presently and make an informed decision. At least that's what happened to me when I was reading the diaries.

I am in the US with a working visa and I am an Asian.

[GodsGrace]

How much time to take Physiotherapy at a week ?

Mine was a Quadri lateral (tibia + femur) surgery so my package offered me 14 weeks of PT at Paley (i.e) 14 weeks * 5 sessions per week = 70 sessions overall. Each session is 60 mins longer. No sessions on the weekends. I also did PT on my own in the evenings for about 1 -2 hours. Some therapists asked me to do the PT 4 to 5 times a day. I tried and that was too much for me so I stopped doing that. Just once in the morning and once in the evening. Everyone's body is different and mine was happy with just doing PT 2 times a day.

During lengthening, I was only focusing on flexibility exercises while doing my PT. Now I am into consolidation so only focused on strengthening workouts. Maybe 10 mins for hamstrings and calf stretches that's all I am doing for now. I am spending more time on walking and walking is the best PT for now as it fixes most of the problems. Some LL veterans also posted the same in their diaries.

[Dirona]

Hello Realistic, thanks for spending your time and reading my diary. I appreciate your kind words. Without this forum, I could have never imagined the LL and would have lived the rest of my life with height neurosis. It's my time to give back to the community. The older diaries will get you the knowledge but only the most recent diaries will give future LLers much more confidence as it is happening presently and make an informed decision. At least that's what happened to me when I was reading the diaries.

I am in the US with a working visa and I am an Asian.

Awesome..sent you a PM

[GodsGrace]

Awesome..sent you a PM

Responded you in DM.

[GodsGrace]

A minor setback in my recovery. On the 17th of July (Sunday), I woke up with severe nerve pain near my left ankle. I thought my drop fingers situation was getting corrected. Then later during the day, I got high fever then during the night the fever came down, and suddenly I couldn't move my left leg. Around 1 AM I woke up and was shocked to see my left leg was swollen in 2 places. The site where the 2nd screw is there from the top on the left knee and also the place where lengthening was done. They were like 2 small mountain-like bumps. I could not sleep after that. I woke up (on the 18th of July, Monday morning) and I called the Paley institute and I booked an emergency appointment with Dr. Robbins.

[GodsGrace]

Dr. Robbins looked at the swellings on my left leg and asked me what did you do?. In fact, on Sunday I didn't even walk because of the never pain and I didn't do anything at all. We took an x-ray and it was good and there was nothing bad. Then he referred me to an ultrasound to ensure there were no blood clots in those spots. The ultrasound report came negative for blood clots and that was good as well. Dr. Robbins and Doug (his assistant) prescribed me an antibiotic and told me that it will be alright in a few days. I left the clinic after that.

[ilovescience]

Dr. Robbins looked at the swellings on my left leg and asked me what did you do?. In fact, on Sunday I didn't even walk because of the never pain and I didn't do anything at all. We took an x-ray and it was good and there was nothing bad. Then he referred me to an ultrasound to ensure there were no blood clots in those spots. The ultrasound report came negative for blood clots and that was good as well. Dr. Robbins and Doug (his assistant) prescribed me an antibiotic and told me that it will be alright in a few days. I left the clinic after that.

I hope everything goes well, thanks for sharing. I hope you get well soon.

[GodsGrace]

The swelling came down in 3 days but the screw site pain never came down in fact I didn't walk for 5 days after the visit and I was completely in my wheelchair. The pain at the screw site got horrible that any small movements will pass the pain (which felt like an electric shock) to the whole body. At this point, I had the feeling that there was something wrong with the screw. The pain was only getting worse and I couldn't walk. Doug asked me to update him every 2 days which I did and on the 22nd of July, he asked me to set up a follow-up with Dr. Shannon. I went and met Dr. Shannon and she also mentioned there is a possibility that the screw might have popped out a little bit maybe 1 or 2 mm that's causing the inflammation so you are feeling a lot of pain. She asked me to take ibuprofen for a week and see if the inflammation comes down. She also asked me to apply Voltaren (anti-inflammatory topical cream) at the screw site where the swelling is.

[Siegfried]

Hey,

are you also experiencing residual fluid in the anterior tibial muscle part (https://bit.ly/3bjNbzg) of your lower leg? Mine is still quite substantial even 9 months after the tibia surgery. Its only a cosmetic thing, other than that it doesnt bother me. Just curious on what paley might know about this?

[GodsGrace]

I followed her instructions for 7 days and the pain was still the same and there was no improvement at all. I updated the same with Doug and he asked me to schedule an appointment on July 29th. This time I was mentally prepared to ask them to remove that screw which is causing the issue as there is enough callus formation and also there are 6 screws that can hold the precise nail with the bone. At this point, I was slowly walking but limping with my left leg. Before this happened (until July 17th) I was very comfortable walking with the walker. After this, I started limping with my left. Right is absolutely fine for now.

[GodsGrace]

I went on the 29th July and hoping to meet either Dr. Shannon or Dr. Robbins. None of them showed up as they were busy. Doug assisted me the whole time. He was moving my left leg in different positions and evaluating my pain level and the screw situation and he was on the phone with Dr. Robbins. Then I asked him can we remove that one particular screw as there is enough callus formation. He checked with Dr. Robbins and said yes that's possible but they wanted to try out one more non-invasive method by giving the cortisol injection. What he explained was that once we put the cortisol steroid at the screw site where the pain is more for the next couple of days it will be more painful but after a week it should start working and theoretically it should be good for 4-6 months. I took a few mins to think about it and finally said yes. Then I asked him what if this doesn't work and he replied the last option is to remove the screw.

First, he came up with the numbness injection and he was injecting it at the screw site ouch it hurt as he was moving the needle in different directions and the needle was touching my bone. It numbed the area and he injected the cortisol at the screw site. Hopefully, it works. Fingers crossed.

[GodsGrace]

Hey,

are you also experiencing residual fluid in the anterior tibial muscle part (https://bit.ly/3bjNbzg) of your lower leg? Mine is still quite substantial even 9 months after the tibia surgery. Its only a cosmetic thing, other than that it doesnt bother me. Just curious on what paley might know about this?

Yes, at first I experienced the residual fluid on my right during the last week of lengthening and I would say it was there for about 5-6 weeks after that and it is totally gone in my right. It was like a water bag and whenever I touched it I felt like touching a water-filled balloon. Now after this swelling started I experience the residual fluid on my left around the lengthened area.

[GodsGrace]

I hope everything goes well, thanks for sharing. I hope you get well soon.

Thank you, ilovescience. Hope this situation will get fixed.

[GodsGrace]

Is there any LLer that anyone is aware of who has taken a cortisol injection to deal with any arthritis pain? and it worked for them? I googled about this injection and 70% of the time it seemed to be working. Doug also mentioned the same. Any input is appreciated.

[GodsGrace]

Now, I started walking but on my left I am not even applying 50 lbs weight. If I try to put more weight on my left I feel more pressure on that particular screw site which hurts a lot. As Doug said I am going to give it a week more and see if it works.

[sunlightwolf]

please keep us updated