Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: GodsGrace on August 17, 2021, 01:29:45 PM
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Finally, my dream is coming true after a long wait.
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Good luck man. A little early to start a journal though.. lol. That’s like 6 months away.. lol.. I’ll be following.. wishing you much vertical increase.
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Ha ha. I know. It's 14 more weeks to be precise. I waited for 7 years but waiting now is really checking my patience. LOL.
I was practicing on how to create a topic and didn't want to type too much. Soon I am going to put a detailed content on how my consultation with Dr. Paley and Dr. Robbins went by.
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Does anyone know how to create a footer kind of template. I have seen in many diaries. Is it something like they will copy and paste on their each post or we can set it at the profile level so for each post your footer info gets pulled in?
Any help is appreciated. Still learning!!
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Does anyone know how to create a footer kind of template. I have seen in many diaries. Is it something like they will copy and paste on their each post or we can set it at the profile level so for each post your footer info gets pulled in?
Any help is appreciated. Still learning!!
I believe you set that up in your profile settings.
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Yep. Thanks Growing. I figured out the same. There is a signature option.
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Yep. Thanks Growing. I figured out the same. There is a signature option.
Yes that's it.
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Pre-op Day:
Alright, today is my pre-op day with Dr. Robbins. Everything went well including COVID testing. Tomorrow (Jan11th, 2022) morning 8.00 AM is the surgery and I have been asked to be in the hospital by 6.00 AM. Feeling excited and at the same time little antsy. Hope everything goes smoother.
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You will be fine, looking forward to your post-op updates
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Surgery has been pushed to a week later due to POSITIVE covid testing results. OMG!!
I went to hospital by 6 AM in the morning, checked in at the front desk, have been waiting in the lobby and was all excited. Suddenly a nurse came and took me out mentioned that my covid testing result shows POSITIVE. The hospital must have informed yesterday evening but they forgot to update me. They said sorry that you should have been informed but there's been a miscommunication. Anyways, now I need to wait for a week and reschedule the surgery. They informed the doctors and I also informed them. The new surgery date is 01/18/2022 as of now and again I will be covid tested on 01/17/2022. Hope everything goes smoother by then.
I need to be quarantined for a week which I am doing right now.
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Does anyone know how to update the topic's subject? I want to edit the date on the subject. If I click on reply and update the date on the subject field it updates only that particular reply. I want the topic's subject to be updated on all the posts. Any help is appreciated.
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Alright guys! the surgery is done. I will summarize as much as possible that I am able to recollect.
Note: I am only willing to post very generic information so please respect my privacy. Having said that I will definitely post my xrays as this diary would be my only source of information of my own journey even for me.
01/17/2022 - pre-admission testing day - So I quarantined for a week and was all prepared for the covid test again and I was on the way to the hosptial and 10 mins before I reach I got a call that I don't need to come for a covid test again just come tomorrow directly for the surgery. I was shocked and replied that the last time the chief nurse was so adamant and she won't even talk to me. Then the coordinator on the phone said ok you don't need to worry we will call them and update them since you are here just go and finish up the pre-op blood work.
So I was trying to check in at the front desk and again the same confusion as the receptionist wasn't ready to check me in for pre-op blood work without a covid test again. SMH. Then I had to explain what happened and they called the coordinator she talked to them and clarified again.
Now the third part is also the same with nurse department. LOL. The funny thing is she took my vitals, 4 vials of blood, urine sample. and chest x-ray and after all that she was asking me where is your covid testing report. I said they didn't give and it was done last week and since covid was positive they pushed the surgery to this week and finally they said no need for covid test again as I was asymptomatic and quarantined for a week. Nope she was not even ready to listen to me. Then I said please talk to the chief nurse. She talked to her but she also wanted to talk to the coordinator and finally she had a soft voice and ever since after that she was very kind to me LOL. I don't blame her as she was trying to note down everythinh in the system about all the conversation and trying to save her job.
Finally, she gave me a tag with my name and bar-codes in it. I was asked not to eat anything after 12.00 AM and not to drink after 4.00 AM. and I can drink clear water drinks such as water, gato, and apple juice. She asked me to shave my legs if possible. I know my legs are hairy.
I was back home bought few necessary stuff, shaved my legs and trimmed my entire body. Oh boy I felt very light weight without hair in my body.
Had a heavy lunch and dinner and fruits. As usual I didn't get the sleep until 2.30 AM as I was very excited and at the same time I know I am getting into an unknown. All the knowledge you gain over 6 or 7 years will help you after the surgery but not the day before the surgery, LOL. But it was a great feeling!!
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I even took a covid testing at a private facility on friday (01/14/2022 - 4th day of my quarantine) to make sure my quarantine works. I was only able to do a Rapid test and even for that they charged me 100 bucks but guys the rapid testing result is no good for anything except for your personal satisfaction. The CVS and walgreens and few other pharmacies they have shortage of testing kits and I wasn't able to get a free appointment for about a month with 25 testing centers near me. Crazy. Beware that this private testing facilities are charging a crazy money. If you want PCR testing it starts with 250$ for report in 48 hours, 350$ for report with in 24 hours and 400$ for report in 5 hours. I am only recording his information maybe it could help someone.
Alright, enough about my pre-op day, moving on to surgery day.....
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Surgery Day - 18-Jan-2022 - Part 1:
Woke up at 3.30 AM (started sleeping at 2.30 AM, LOL). Had almost one full bottle of gato and again went to bed and woke up at 3.55 AM and again forced myself to drink 3/4 of 500 ml gato and 100 ml water. Guys trust me it works great and it worked great on me. Because I wanted to have a very good bowel movement before I go to the hospital. Again slept at 4 AM and woke up at 5.00 AM. I didn't have to push anything my No.2 was a smooth outcome as I expected. Got ready and reached the hospital at 6.10 AM, checked in, and waited for about 15 mins that's when I saw few other guys. I am already commenting on "motoboarder" diary. Glad he is doing the Quadrilateral same as me.
A nurse stopped by and took me inside the nurses room and assigned me a bed and asked me to wear the sugical gown. Boy, at that moment I felt 100% that things are happening. Took a deep breath and a big sigh!! I am in the gown now and was asked to laydown on the bed. I didn't want anyone staying with me in the hospital after surgery. But I brought my laptop and few energy bars and my wallet inside my backpack. So they had to call a security guy who will check all your stuff and give a recepit and also attach a tag with the same details on your wrist band.
Then she started checking my vitals again and pressure was little high maybe because of the excitement so she gave me some anti-depression something through my IV inlet. She attached 2 IV inlets one on your right and one on your left. Then the anastheseloigists came by and explained that the surgery would be held under local anasthesia and once surgery is done they will give numbness injection(s) in your hip that will keep your lower part of the body numb for about 6-8 hours.
After anastheseloigists left, the nurse gave me 1 gabapantin and 2 tylenol. I asked why is this for and she was kind enough to explain me that studies have been found it does some chemical reaction in your liver which will help absorb pain main medication effectively. Somethings were too technical and at this moment I was already 40% passed out because of the anti depression drug. I was just simply nodding my head.
She checked on my leg and asked me did you shave your leg? In a half sleep I said yes, then she started saying oh no you should not be doing that and it will give you very tiny /micro scratches under your skin and they may stop the surgery..blah..blah..blah..I know she was joking but I was unable to reciporacte with her as I was drowsy and I was simply looking at her and keep smiling. Then the other nurse came by and said she is only trying to give a hard time as I asked you to shave (she was the one asked me to shave the previous day). It was just for fun. She was rubbing my leg under the knee and near the calf area to make sure there is no tiny hair left where the incision sites will be made. I just wanted to make it a bit more fun and asked her it's smooth and soft right? that's it she started laughing and asked me are you trying to flirt with me? I said I wish I could but I am already sleeping and I am not even looking at you when I am making these comments. She said good luck and they will be here shortly to take you to the OP room.
Finally, the stretcher guy came and they started rolling me to op room. Here is the part I don't understand. Most of the guys mentioned that they went to the OP room, saw the big lights, and few said hi to the doctors. For me nothing of that sort I remember. No matter how hard I try I am unable to recollect my memories on that part. The moment they started rolling me the next thing I know is I was in a place where there were lots of operated people like me and the nurses/physician assistants shouting like a fish market fighting for the room, clearance,,dah..dah...dah and I remember staying there for about 30 mins. They even made fun of my full name LOL and funny thing is I remember that part rock solid as I was regaining my consiousness back.
The guy's name is Alex and he helped me move to my room. He was mentioning that he had to handle 4 patients today and I was the smoothest of all for that day as I didn't require more local anasthesia for my surgery. Others were little old and different surgeries it seems so they had to give them more but there is an approval process if someone needs more anasthesia than the recommended quantity and it's not easy. Anyways, all I said was thanks for taking care of me. He dropped me in the room and not sure if I can ask but asked him anyways do you accept tips? He said sorry sir none of us would accept a tip here. I said once my process is over I will take you out for drinks. He smiled and left me in the room.
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Are you staying at one of the partner hotels?
You must be about to be discharged from the hospital. They will give you a prescription for strong painkillers. Use them sparingly! If you take the maximum amount, they will last you a mere 1 to 2 weeks, but your post-op pain might not subside before week 3 or 4. If you're still in pain at that time and without painkillers, you will be up shxt creek without a paddle, my friend.
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Hey tallerwouldbenice, yes I am well aware of that situation based on my readings from lot of diaries in the past few years. Thanks for the heads up though. I was discharged yesterday (11/22/2022) and I am not staying in one of the partner hotels. I am trying to save on oxycodone and they recommended me to take 1 for every 6 hours when in pain. I am trying to take only 1 for every 12 hours for now. With the help of tylenol 650 mg every 4 hours I am able to manage for now.
So far I would say the swelling part is the worst and which makes things horrible for now. Also the tightness of the plasters with the swelling wow what a deadly combination it's like a balloon that's about to be burst or something that is about to explode under your knees. The Polar Bear ice pack machine is the savior so far with swelling. In my case it doesn't reduce the swelling it just numbs the area so I can feel 30-40% less swelling pain. But if I don't keep the ice pack on my leg even for 20 mins forget it and it goes back to 100% swelling pain. So keeping that for more than 20 hours in a day for now.
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Surgery day part 2, day 2, day 3, day 4, and day 5(discharge day) updates are still pending. I need to verify my notes and compose the content but I am finding it really hard with my current pain and the things that I do to keep the pain bearable. I will definitely update those info as soon as my time permits.
By the way, my first PT has been scheduled for tomorrow (01/24). That's going to be another super fun stuff, 8) 8)
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Hey tallerwouldbenice, yes I am well aware of that situation based on my readings from lot of diaries in the past few years. Thanks for the heads up though. I was discharged yesterday (11/22/2022) and I am not staying in one of the partner hotels. I am trying to save on oxycodone and they recommended me to take 1 for every 6 hours when in pain. I am trying to take only 1 for every 12 hours for now. With the help of tylenol 650 mg every 4 hours I am able to manage for now.
So far I would say the swelling part is the worst and which makes things horrible for now. Also the tightness of the plasters with the swelling wow what a deadly combination it's like a balloon that's about to be burst or something that is about to explode under your knees. The Polar Bear ice pack machine is the savior so far with swelling. In my case it doesn't reduce the swelling it just numbs the area so I can feel 30-40% less swelling pain. But if I don't keep the ice pack on my leg even for 20 mins forget it and it goes back to 100% swelling pain. So keeping that for more than 20 hours in a day for now.
Gad to hear you got back. For me I tried to control my pain med as 3 times a day, each time Tylenol 650mg (2 325mg pills). Oxycodone gave me some negative illusion like some naughty cousins jumping on my legs as joke (I'll write more details in my diary).
Do you start wearing the required boots for tibia patient yet?
You sure we should stay on the ice machine >=20h a day? I was a bit slack on that guess I should do more..
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Gad to hear you got back. For me I tried to control my pain med as 3 times a day, each time Tylenol 650mg (2 325mg pills). Oxycodone gave me some negative illusion like some naughty cousins jumping on my legs as joke (I'll write more details in my diary).
Ha ha ha. I am not getting a negative illusion like you but as soon as I take tylenol and oxy I immediately pass out for like 30 mins to an hour with full of dreams and suddenly will wake up with an acute pain bcoz my legs will be in different positions and some other things and it will take about another 30 mins or so for that deadly pain to subside. It's very wierd things but learning to live with that.[/size][/size]
Do you start wearing the required boots for tibia patient yet?
They forgot to order the dorsiflexion boot for me as it needs to be readily available before your PT starts at least that's what the guy by name Edward from Falks prosthetics told me. He visited me on thursday (01/20/2022) and prepared a mould with my swollen legs and told me that my braces would be ready by next wednedsay (01/25/2022) and the patient need to come to their Jupiter (branch) office to pick it up and that's when they will tell you how to use that also.
You sure we should stay on the ice machine >=20h a day? I was a bit slack on that guess I should do more..
I am pretty sure about it and Pam was very adamant about that. Pam and Noor are the in-patient PTs available. At least for me they visited me every day from day 2 of the surgery. They kept the 2 pads of the polar bear machine right on top of the incision sites using a pillow cover and for the first 30 mins it was feeling good but as the time goes on since the cold water keeps on circulating inside the pads I felt very heavy and it was pressing my incision/wound sites and i could not bear the heaviness. I thought screw it and didn't use the whole night and the next day until 4 PM as that's when my PT session will be. I told her I felt heavy so I didn't use it, that's it. She didn't like my answer at all and told me clearly like a warning there's a reason why we are giving this ice pack machine and this is the only natural remedy to keep the swelling under control and medicines will only help a bit. Ever since after that I made sure at least it stays on for 20 hours but in a more comfortable way for me. Trust me they don't understand the discomfort or pain that you suffer so we need to learn as we try out things. So I keep it on the knee first and when the discomfort starts, I will move it down towards the ankle, then to under the calf, then to above the knee. I will keep in each position until I feel the discomfort and repeat the cycles in this way most swelling areas will get the cooling therapy. At night mostly I will keep under my calf for about 6-8 hours because that is the only place where you don't feel any discomfort at all or at least for a longer period of times. Hope you get the point.
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I started composing from my notes , oh boy I am completely drowsy and tired bcoz of the medications and I realized that I was making lots of mistakes in the dates and explanations and it took me 20 mins just to post replies for motoboarder Qs. I will try and post it tomorrow. Good night and peace.
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A Good and a bad thing. The ice cubes in ice pack machine will last only for 4 to 5 hours. Every 5 hours you need to drain the water and refill it with ice cubes again and only then it can produce the required coolness. I am buying 2 icecube bags of 10 lbs from publix and it's good for 24 hours.
Good - I had a sound sleep for about 7 hours. 4 hours + 3 hours
Bad - All icecubes melted after the first round of sleep and I woke up at around 2.30 AM to pee and came back to bed. I didn't want to disturb my wife for the refill. Oh boy that's a mistake. After the second round of sleep I woke up with heavy tightness from knee to toe and I can't even slightly bend my knee or ankle at all. I immediately asked my wife to refill the icecubes and kept the pads for about 15 mins then the tighness came down.
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How much do you plan on doing with your tibias?
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My target is 10.5 cms in total. 4.5 cms in tibia and 6 cms in femur. But if my body gives me a cushion to push then I will do 5 cms in tibia and 6.5 in femurs max.
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Oh, I didn't realize this was quadrilateral.
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I am new to posting on this site so I don't know how to edit the subject. I was asking for help and since nobody responded I just left it like that. Even I tried few options but no luck.
I updated that info on motoboarder's diary as him and I had the tibia surgery on the same day and going to have the femurs done on the same day as well.
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Well, I envy you. I wish I could afford to do 15 cm with Dr. Paley.
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Well, I envy you. I wish I could afford to do 15 cm with Dr. Paley.
It took me 6 years to save up this money brother. Of course I could have done it 2 years ago but I would have done only femurs at that point. I wanted to do both segments with safe limits so that the recovery would be faster. Just didn't want to lengthen only one segment too much. Considering my starting height is only 5'2" I wanted to gain 4 inches for sure so waited for few more years to save up the money. I was able to stay focused on my dream mainly with the help of this forum and the old one.
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Tomorrow is a big and busy day for me. I have an appointment with Nuvasive team to get my lengthening device and I would officially start my tibial lengthening tomorrow. Also at 4 PM my first out-patient PT session. Hope everything goes well tomorrow.
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Surgery Day - 18-Jan-2022 - Part 2:
Once I was moved to the room the nurse came and introduced herself to me. I was half sleepy and after 6 PM I slowly started to feel the pain. One nurse to check your vitals like every 3 to 4 hours and another one to give you the medications as needed. They checked my vitals around 7 PM and by that time I would say my pain level is around 3 to 4. After 8 PM the pain level I had was around 8 and they gave me oxycodone. That's it from there till morning 7 AM I was in the severe pain ranging from 8 to 10 all the time. I got fever and lots of chills through out the night. I keep calling them every 2 hours as other LL veterans mentioned in their diaries. After midnight I had to call them every 90 mins. The cycle was like this, started with oxy, 2 hours after 2 tylenol, 2 hours after morphine, and some valium in between for muscle spasms however I don't remember the exact details. All I can is I was in a lot of pain and kept calling them and told the nurse I am having so much of pain and he checked the system and there are notes for different pain levels that the doctors have recommended for me and he referred to that and said I can give you this and that and I said please I can take anything that helps reduce the pain. Some part of the nights there were very acute and sharp pains I would say 10/10 which lasted for about 10 mins. Somehow I survived the night and I kept saying to myself every single second that everything is going to be alright in the morning and just live through the pain.
When we read the diaries we all will come to an understanding to ourselves that ok the pain is going to be like this much or something of that sort but do a 2x to 3x to your understanding because the pain will be worse more than your imagination if the pain killers don't work for you. In my case, the pain killers did not alleviate much pain for me. But yes the only way to conquer the pain is to go through the pain.
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Day 2 - Jan-19-2022
Dr Robbins stopped by around 7.30 AM and asked me hey sleepy head how are you doing? LOL. I said I am in lot of pain and he replied I know, I know...He asked me do you remember I was talking to you after the surgery in the operation theatre? I didn't remember anything and I said no. He checked my feet and asked me to push his hands and he was touching different parts of the feet and asking if I could feel and I was able to. He started explaining everything went well but there are 2 fingers in your left foot that are dropping. It may take few days/weeks/months to come back to its original state. The thumb and 4th finger from the thumb are dropping on my left foot. I don't have any issues on my right foot. If I try to pull my toe towards my body all 5 fingers on my right are pointing towards my body. But on my left the 2nd, 3rd, and 5th fingers are pointing towards my body but the 1st (thumb) and 4 th fingers are dropping towards ground. I asked him should I be worried about this and is this a complication? He said no it is not a complication and usually with the constant PT it will wake up and regain its senses. Hope that's the case. Fingers crossed. He asked me any other questions and left.
Nurse stopped by after Dr.Robbins left and asked me how was your sleep? I said I could not sleep even for a single second bcoz of lot of pain. She said I will see if I can change your pain med a little bit and if that helps. Along with Tylenol, valium, and morphine she added the tonadol also and it helped me a bit. Again I am not too sure about all these medicines they talk too fast with drug names and I was very drowsy/sleepy and it was hard for me to follow her. I asked her could you please write the names in a paper and share it with me. She wrote Tylenol, Valium, Tonadol, Protonix, and Miralax. The protonix is for avoid acidity or acid formation and miralax is a laxative (Stool softner) and along with that an antibiotic in the IV.
I took the advice from one of the LLVeterans (his own personal experience) from his diary that I don't want to go to number 2 for 3 days so for the first 3 days I ate very less since all the energy you need you are getting from IV. Also told the nurse no laxatives for me. It worked out very well for me. First 3 days no bowel movement. However, the night of the surgery day (Jan-18-2022) I was literally died to pee. My bladder was really full and I was in lot of pain they gave me a bottle and I kept on trying and nothing comes out. When I tried to push I felt the pain from the bladder and also felt like all the incision sites were ripping apart. I asked the nurse if you could take me to bathroom he said you can't walk until your PT is done the next day but he said you can try to sit and come to the edge of the bed and try from that position (I was anyways going to do that and he suggested the same). It took me a lot of time to come to the edge of the bed and used the support of the dining table and finally pee-ed. After that every 1 to 2 hours I was able to pee from the bed itself.
In the afternoon the in-patient PT guys came (Pam and Noor). They taught me the necessary exercises that I need to do 3 times a day while I am on the bed. There was no walker on that so we didn't do the walking practice. Following are the exercises,
Ankle pumps - 20x - both legs together
Quad sets - 20x - both legs together
Glute sets (butt squeeze) - 20x
Leg lifts - 10x on each leg leg
Knee bends - 10x on each leg
Leg out + in - 10x on each leg
Leg kicks from the edge of the bed - 10x on each leg.
They also set me the Polar Beach ice pack machine and once I started using that I could feel less swelling pain.
After these workouts took pain killers and slept for about 2 hours in the evening.
Again in the night the pain started to shooting up. Constantly 6 and above but not more than 8. Better than the first night after the surgery.
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Day 3 - Jan-20-2022
Things have started to become a routine. Had a 2 to 3 hours of sleep yesterday night. Started watching movies in my laptop and few videos in my phone if I don't get the sleep. The ice pack machine was actually helpful as it numbs the area of swelling so you will have a less discomfort in terms of senses but the legs will still be heavy if you try to change directions. I had responded back to motoboarder's question about using the ice pack and I am pasting the same content here as it explains how I was and am still able to use that ice pack machine for more than 20 hours a day
Question from motoboarder: You sure we should stay on the ice machine >=20h a day? I was a bit slack on that guess I should do more..
My answer: I am pretty sure about it and Pam was very adamant about that. Pam and Noor are the in-patient PTs available. At least for me they visited me every day from day 2 of the surgery. They kept the 2 pads of the polar bear machine right on top of the incision sites using a pillow cover and for the first 30 mins it was feeling good but as the time goes on since the cold water keeps on circulating inside the pads I felt very heavy and it was pressing my incision/wound sites and i could not bear the heaviness. I thought screw it and didn't use the whole night and the next day until 4 PM as that's when my PT session will be. I told her I felt heavy so I didn't use it, that's it. She didn't like my answer at all and told me clearly like a warning there's a reason why we are giving this ice pack machine and this is the only natural remedy to keep the swelling under control and medicines will only help a bit. Ever since after that I made sure at least it stays on for 20 hours but in a more comfortable way for me. Trust me they don't understand the discomfort or pain that you suffer so we need to learn as we try out things. So I keep it on the knee first and when the discomfort starts, I will move it down towards the ankle, then to under the calf, then to above the knee. I will keep in each position until I feel the discomfort and repeat the cycles in this way most swelling areas will get the cooling therapy. At night mostly I will keep under my calf for about 6-8 hours because that is the only place where you don't feel any discomfort at all or at least for a longer period of times. Hope you get the point.
Got a session on how to use the walker today. Oh boy it freaks me out definitely not the pain part but the nail bending part. Took about 8 to 10 steps and wheeled back to my bed. Also did the PT exercises.
Happily taking all the drugs/tablets what they give to me and saying no to the laxatives. Still haven't eaten any meal. I have eaten so far 5-6 energy bars whenever my stomach rumbles and 1 or 2 bread that came as part of the meal. Also started drinking coffee couple of times a day and more juices whenever I need them.
One thing while using the ice pack machine is that I keep getting chills because of the prolonged usage of the ice pack machine. So I asked the nurse to increase the temperature to 78 and yes that helped a lot. I am sweating and ice pack feels great on my legs while sweating.
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Day 4 - Jan-21-2022
Slept about 6 hours intermittently. The swelling up until this point is still super high. Pasting one of my old comments about my swelling part as it would make sense at this place.
"So far I would say the swelling part is the worst and which makes things horrible for now. Also the tightness of the plasters with the swelling wow what a deadly combination it's like a balloon that's about to be burst or something that is about to explode under your knees. The Polar Bear ice pack machine is the savior so far with swelling. In my case it doesn't reduce the swelling it just numbs the area so I can feel 30-40% less swelling pain. But if I don't keep the ice pack on my leg even for 20 mins forget it and it goes back to 100% swelling pain. So keeping that for more than 20 hours in a day for now."
Also I started to feel that my left leg is more worse than the right in terms of all the pain. Any small movements give me a lot of pain on my left leg. I have pain in my right leg but it is more manageable and it's only pain from the swelling and sutures and bone cut areas. Whereas in left leg along with these pains I have some muscle contracture pain or kind of constant pulling on one side or combination of both something like and I feel a great pull on the outer left calf area. I don't know exactly to put it across but I hope you guys get the picture. I have a feeling that once the bone is cut and rod is inserted after the cut they will do a rotational test and once that test is done they need to keep the leg back to the original position. I believe there might be a slight off there from its original position the reason I am saying is my left leg is trying to pull me in one direction always to the left. I will have a clear picture of this issue when my swelling comes down. Will keep you posted on this one.
They stopped IV on this day onwards and any antibiotic or morphine that you need is directly injected into you arms using the IV inlet not through the drips. I asked the nurse that is today my discharge day? She said if you want to you can but you can stay couple of more days as well. I decided to stay one more day just to be safe.
Had my PT session. Had about 25 steps in the walker including turning using the walker. It really freaks me out in terms of weight bearing.
Since the IV drips is no more I started eating my lunch and dinner however didn't take the laxatives yet.
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Day 5 - Discharge Day - Jan-22-2022
Had a good sleep about 6 hours. Had my breakfast and took laxatives this time as the nurse was insisting me to have a bowel movement before the discharge. Kept drinking a lot of water and finally around 12 PM had the bowel movement. The initial push was tough but after that it was all good. Felt really good after the bowel movement.
Had my PT and took about the same amount of steps as yesterday and didn't want to push too much. One guy from Gardens pharmacy came on Day 4 (forgot to mention on day 4) and gave me the toilet commode, wheelchair, and prescribed medicines. It had the following tablets in it - Acetominophen, oxycodone, xarelto, vitamin D3, and 2 small nasal sprays.
I hired a wheelchair van as I didn't want to go through the pain of transferring in/out of the car from/to the wheelchair. He charged my about $115. I discharged from the hospital at 4.30 PM and 2 nurses helped me with moving me and my stuff near the van. Reached home at 5.30 PM and it was really good to be back at home. The moving process was very tiring so had dinner early, took 2 oxys and 2 tylenol 325mg and hit the bed.
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Dude you need to eat. Force yourself if you have to.
You're very lucky to have your wife with you
If you need shower chairs and things like that I recommend Homecare America in Jupiter
The next few weeks are going to be rough but it will get better. Good luck
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That eating part I explained only during my first 3 days in the hospital. 4th day I started eating well and 5th day I got discharged. Ever since I was discharged I have been eating like a glutton at my home. I may have lost a few pounds in the hospital but ever since I moved to home and since I am eating well now my weight is where it was before the surgery, lol. Hopefully, I won't put on any extra weight. Let's see.
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Posting everyday on the forum after the surgery is becoming harder and harder because of the things that need to be dealt with. Even to do few small stuff it takes forever and also suffering of the pain, doing self PT couple of times a day along with the out-patient PT. It's very tiring and exhausting. I have few minor setbacks also. I will explain in my future posts.
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Day 8 - Jan-25-2022
The bandage was removed and officially started my lengthening on this day. I was very excited to have the ERC machine on my leg and when the ortho person (carla) showed me how to use it and she helped me doing the first 0.25 mm I was literally having tears of joy. I was expecting for this moment for so many years and finally it's happening and it was such a nice feeling.
Had my first PT session today.
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Day 10 - Jan-27-2022
I got my splints or dorsiflexion boots from Falks Prosthetics on this day. However, I should have got the splints by 2nd or 3rd after the surgery but in my case they forgot to update them it seems so I was measured only on the 3rd after my surgery and got the boots on the 10th day. It's an hour drive from my place one way and the prosthetics center made me waited for 3 hours so overall it's a 5 hours sitting on the wheelchair with swollen legs. I forgot to take my pain killers and the journey was very uncomfortable, totally.
When I started using the splints mornings are ok but night time since the legs don't have enough strength the splints are really heavy on my legs. So I have my own light weight splints which I bought from amazon that helps me a lot at nights.
I read from few diaries that wearing the splints is mandatory for paley patients when you are doing your tibias. So I bought a pair of splints 6 months before the surgery and slowly got used to it for upto 20 hours a day. Started with 1 hour a day and gradually increased the amount of wearing time and became more comfortable with it over 6 months. It's really a nice home work I did and it helps me a lot with my broken legs now.
The splints are really helpful for even few non-lengthening issues. I used to play tennis few times a week and sometimes I feel heel pain or sometimes hamstrings or calf muscle soreness. On those days when I wear the splints at night and wake up in the morning that's it no more pain. It works really great.
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Day 11 - Jan-28-2022
My left tibia is the weakest compared to my right tibia. Right tibia is more flexible with less pain whereas my left tibia has all sorts of pain.
Ever since I started my lengthening I have been hearing the clicking sound on my right tibia and no sound on left tibia. Had a feeling that the right is not lengthening properly so I shot an email to Dr. Robbins mentioning about the clicking sound on my right tibia.
When I lengthen my left I have this sort of burning sensation in the bone breaking area and also muscle soreness but on my right I don't have any of those so definitely something is not right. However, all I can do at this point is just keep lengthening until he responds back.
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Day 13 - Jan-30-2022
Dr. Robbins had responded back saying that the clicking noise concerns him and he asked me to come to the clinic tomorrow (Jan-31-2022). I had my pre-admission testing at 9.30 AM and Pre-Op appointment with Dr.Robbins at 11.45 AM on Jan-31-2022 since my femur surgery was scheduled for Feb-01-2022. I mentioned the same to him and he responded yes we can do an X-ray and see what's going on with your right tibia when you come and see me.
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Day 14 - Jan-31-2022
Busy day with more appointments. I had my pre-admission testing with the nurses at 9.30 AM. They checked my vitals, weight, and all other necessary stuff. They didn't do a blood work and mentioned we can do it tomorrow when you are here for the surgery.
Then I went and met Dr. Robbins at his clinic. We took the x-ray and found out that the the nail on the right tibia was not lengthening as expected. There's a discrepancy of over 2 mm so far. Left is supposed to be where it should be where as right is off by more than 2 mm. Basically right is also lengthening but it is not lengthening at the expected rate. So Dr. Robbins told we are going to do 1 full mm today with the lengthening device at the clinic now and you keep continuing your lengthening as usual at home and when I do your femurs tomorrow I will double check your right tibia by adjusting the bottom screw sites. He zoomed the left tibia x-ray and right tibia x-ray and showed me that the chip on the left has extended nicely whereas the chip on the right did not.
I went for my PT and I was on my way back home and here comes the fun part. This is applicable for Quadri-lateral patients. You will be given blood thinners after your first surgery but you should stop taking that at least 72 hours before the 2nd surgery to avoid lots of blood losses. I was not told about it and until this day I was taking the blood thinner. The coordinator called me and apologized me that she should have informed me but I said it's alright and asked do I need to wait a week more? She said Dr. Robbins will call you and let you know when the surgery would be. Few mins later I got a call from Dr. Robbins and he asked me when was the last time you took the xarelto (blood thinner) I said today (Jan-31-2022) at 8 AM so he replied then we are good to have your procedure done on Thursday (Feb-03-2022) as it would be more than 72 hours before your surgery starts. I told him I am good for Thursday.
On this day I lengthened 0.75 mm on left and 1.75 (0.75 + 1) mm on my right.
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Day 15 - Feb-01-2022
Dr. Robbins sent me an email in the morning and asked me to stop by the clinic to do an additional lengthening of 0.5 mm today and tomorrow (Feb-02-2022) along with my usual lengthening at home. This will help him identify the issue with the right tibia more whether the additional lengthening will make the chip expand as expected or if the additional lengthening was not helpful at all then he will do the necessary things to make it work as expected.
On this day I lengthened 0.75 mm on my left tibia and 1.25 (0.75 + 0.5) mm on my right tibia.
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Day 16 - Feb-02-2022
I went for my PT and also went to the clinic to do an additional 0.5 mm lengthening.
On this day I lengthened 0.75 mm on my left tibia and 1.25 (0.75 + 0.5) mm on my right tibia.
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Day 17 - Feb-03-2022 - Femur surgery Day
Time is 3.30 AM in the morning and I am unable to sleep as I am all excited for my femur surgery today and check-in time is at 10.30 AM. Also I am trying to finish my 0.75 mm tibia lengthening today before I go to the hospital. Just finished my 0.25 mm. I need to wait at least 2 hours in between the sessions as it is pre-configured that way. I will try to do my next session at 6.30 AM and another one at 9 AM. Hopefully, everything goes well with my femur surgery. Talk to you guys soon.
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Best of luck!
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Thanks man.
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Feb-03-2022 - Tibia+17 - Femur surgery Day
Checked in at the hospital at 10.30 AM and went through the pre-surgical formalities and signed all the necessary paper work. The IV was attached in my left arm and I was wheeled to the OR. Woke up a few seconds later and I was told you surgery was done and went well and you will be moved to your room shortly. I was so happy to hear that the surgery went well.
Once I was in the room I was able to check my phone and Dr. Robbins had emailed me mentioning that he didn't have to do anything on my right tibia as the additional lengthening that was done on my right tibia worked well and it almost matched the lengthening on the left tibia. So there is no discrepancies for now in tibias but we will keep an eye on it every 2 weeks and see how it goes. A big sigh that nothing had to be done on my right tibia as I was little worried about it but all good for now.
The max pain level I hit on that night was I would say 6 (moderate) and there was no crazy sharp pains like I used to have after tibia surgery. But the problem is the legs were swollen like hell that I could not move my legs even for a bit. After tibia surgery the pain was horrible but I was still able to move my feet with the help of my hip and thighs but after the femur surgery it was all stuck like a concrete and full of discomfort. I slept for about 10 hours (sound slee) waking up every 2 hours for the pain meds. That night went really well except for sleeping on the same posture.
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Feb-04-2022 - Tibia+18 - Femur+1
Had my PT session today. It was very painful as I couldn't move my legs at all. My butt was stuck to the bed and made things even more worse. Did few PT workouts like ankle squeeze, knee bending, leg raising, leg side in and out. Transferred to the wheelchair with the help of the walker (probably 4 to 5 steps) and PT guy and sat in the wheelchair for about 30 mins. While I was on the wheelchair the Occupational Therapist came and I did brushing and wiping my body with wet wipes and changed the gown. Felt fresh and I was transferred back to bed the whole process was very tiring and took about 2 hours including the PT session. Had my lunch and took pain killers and slept for about 3 hours.
Lengthened 0.75mm on my tibias with the help of the nurses.
Because I slept in the afternoon for 3 hours my sleep at night got disturbed and started sleeping at midnight 12 and woke up at 5 AM with the moderate pain with more discomfort on my butt and hip.
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Feb-05-2022 - Tibia+19 - Femur+2
Pretty much the same routine as yesterday. Today PT was even more painful and he made me sit in the wheelchair for about 90 mins. He said the longer I stay out of the bed it gets easier with the swelling and I couldn't agree more. The entire PT session took around 2.5 hours and finally I was transferred back to bed. Took the pain killers and felt good. Controlled my sleep during the day to get a good sleep at night. Hopefully it works out well.
Compared to yesterday, I am able to squeeze my knees after my PT session today. I am doing 3 sets of knee squeezing every 1 hour to keep the blood flowing. Hopefully, tomorrow I will feel even better with the swelling. Fingers crossed.
Lengthened 0.75 mm on my tibias. So far, officially I have lengthened 10 mm (1 cm) on my tibias according to my calculation and as per the ERC machine.
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I wish you the best. It's interesting to read the diary of a quadrilateral LL patient.
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Thanks HeightJourney2021. I have been following your youtube channel and pretty much watched all the videos and liked them as well. What you are doing in your channel is an amazing task and helps the future LLers. Even before my Femurs surgery I watched some of your videos and prepared mentally for it. Thanks for your videos.
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Feb-12-2022 - Tibia+26 - Femur+9
Sorry guys for the late update. For the last 3 days I have been suffering with lots of pain. Unable to sleep at all. Looking like a zombie. Every 4 hours taking 2 Tylenol (325mg each) and 2 oxy (10mg each) even that doesn't seem to help with the pain. I sent an email to Dr. Robbins that the painkiller is not working as expected on me. Please suggest me something else for a while. I don't feel much discomfort in tibia. Just the tightness and stiffness which goes away with little massage and stretches. Tibia is absolutely fine. Even from 5 days before the femur surgery I only took 2 oxy before the PT session and rest of the times I was able to manage the pain only with the Tylenol in tibias. But after femurs surgery everything was manageable in the hospital but of course with more pain when compared to tibia. On Feb-7th I got discharged with the same set of prescribed medicines and I started with 2 Tylenol 325 mg and 1 oxy every 6 hours and it was ok for the first 2 days. But from the 3rd day onwards it didn't work so I started increasing the dose and now I am taking 2 Tylenol and 2 oxy every 4 hours even that doesn't help at all. I am afraid that I am taking too much of oxy a day and I am running out of oxy quickly. Let's see what Dr. Robbins is responding back.
Any Quadri-lateral (also non-QL) veterans, if you had come across this situation or experienced this same situation please feel free to give me an advice or suggestion and see if that works for me.
As long as the painkiller works for me and I am able to sleep at least for 4-5 hours then I am good. I just need a painkiller that works well on me. I hope Dr.Robbins would help me out with my situation.
Lengthened so far,
Tibia: 14.5 mm
Femur: 3.25 mm
Total: 17.75 mm
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Femurs very painful for 3-4 weeks. You can ask for a pain specialist at Paley (it'll cost a bit)
Your intake seems high but at the same time you are QL so...
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Thanks for the information, tallerwouldbenice. I have an appointment with Dr. Robbins on Wednesday (16-Feb-2022) but since I sent an email and also spoke to the physician assistant they moved that appointment to tomorrow (Monday 14-Feb-2022). Hopefully he gives me some good pain meds at least for a short term which works well on me. Fingers crossed.
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GodsGrace, schedule a meeting w/ Dr. Guiffrida. He/she is specialized in pain remedy. Explain the pain & they will prescribe you the right medication. I learned this from talking to other LL patients during my PT wait times.
Godspeed! Do you best at PT and move the legs as much as you can. I know it hurts like a b*tch at the beginning, but it will help get rid of the stiffness in your legs.
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Yes motoboarder, I had an emergency meeting with Robbins on Monday (yesterday) and he recommended me to meet him asap. Dr. Guiffrida's scheduling team is very poor and I have been trying to schedule an appointment since yesterday and left a bunch of voice messages. He was here in West Palm Beach today and I was requesting them to have a meeting with him as I am coming for my PT today at west palm beach but they never agreed for it. And they said again on next Tuesday only he is available in West Palm Beach clinic. I said I can't wait that longer and where else or in which other office I can meet him. He is available at Fort Lauderdale office and finally I spoke to his assistant and got my appointment for tomorrow (Feb-16-2022) at 9.30 AM. Hope I will get a good pain med that works for me. There was a little quarrelsome between me and his assistant but I explained her you need to understand my situation also I didn't sleep for 3-4 days and my pain level at night is constantly 8-9/10. That's why I was little frustrated in leaving 5-6 voice messages and she understood my situation and got the earliest appointment for me for tomorrow. Hopefully it works out well.
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Also motoboarder, despite all these sleeplessness and pain level I never skipped my PT and never skipped my personal sessions at home and still standing at least 5 times (each 30 secs) a day without fail.
Also yesterday I did only one turning session due to ridiculous pain in my legs. Just 0.25 mm in tibias and 0.25 mm in femurs.
The main set back I have is that the pain meds are not working for me. Hopefully I will have a solution with the other narcotics doc Giufridda tomorrow.
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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.
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Best of luck GodsGrace! Try your best at hamstring & stomach stretches. They will help loosen quad muscles.
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Thanks buddy. Yes, I am doing my best to keep up with those stretches.
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I got my X-rays during my last meeting with Dr. Robbins on Monday (Feb-14) and I will soon post the X-rays here.
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Sorry to hear you are going through so much pain. It really sucks to be suffering so much and have to see outside specialists far away while being disabled. I remember it took me a month before I could sleep well and every journey out of town was such a struggle at the beginning.
Would you say most of the pain is coming from the tibias or the femurs at this point?
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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?
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Each pill is 300mg
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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.
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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!
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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.
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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!
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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.
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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.
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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?
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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.
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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.
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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?
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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/
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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.
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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!
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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.
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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
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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How much time to take Physiotherapy at a week ?
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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.
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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.
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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
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Awesome..sent you a PM
Responded you in DM.
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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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.
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I hope everything goes well, thanks for sharing. I hope you get well soon.
Thank you, ilovescience. Hope this situation will get fixed.
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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.
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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.
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please keep us updated
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After the cortisol injection, about 6-7 days after the pain at the screw site near the knee is gone but I still feel a lot of pressure at the screw site when I try to apply more weight.
The swelling above the lengthened area is still there at about 30%. It hurts and gives me discomfort but doesn't affect my walking. So learning to live with it for now and giving it time to heal.
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I had my monthly check-up with Dr. Robbins yesterday and you can see the Xrays using the following link.
https://imgur.com/a/OPEUHu8
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Dr. Robbins asked me to move to use single crutches to support my left leg. Right leg full weight bearing. He said I can go full weight bearing on the left but considering the pressure, I feel at the screw site and the swelling above the lengthened area he is asking me to be a little cautious and asked me to use a single crutch for now.
The next xray in September is going to be only left tibia.
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I haven't used my crutches yet as I have been on the walker so far. I tried using a single crutch yesterday, I was able to walk but I was a little off balance and got scared of falling. So I decided to use both the crutches for now maybe for a week until I get a rhythm/comfy and after that, I will switch to a single crutch. I am able to balance well with 2 crutches.
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Oh yea, I forgot to tell you. The crutches they gave me only suits for heights 5'11" to 6'4" so I had to throw that away and buy a new one. I didn't check when I got them from the PT. Future LLers, when you receive your crutches make sure it suits your height.
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Congrats on undergoing the journey and best of luck GodsGrace.
I had my monthly check-up with Dr. Robbins yesterday and you can see the Xrays using the following link.
https://imgur.com/a/OPEUHu8
How come the bone callus on your left Femur seems to be a lot larger than on your right one?
Maybe it’s just dependent on the angle? As in it is a 3D structure being shown in 2D.
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No, it's not the angle. You can check all my previous xrays also it's the same. I asked Dr. Robbins in one of my earlier visits and what he said was it's a natural healing process and based on the pressure applied body will automatically form the callus around the internal nail. And I am not the first one to have a callus formation like that.
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Congrats on undergoing the journey and best of luck GodsGrace.
Thank you. Are you planning to do your LL any time soon?
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I just want to say thanks so much for this diary as i have been following it like
a strict guide lol (more of like it does let me know completely what to expect and what they might have missed). I am now post tibial surgery day 5 and am doing everything exactly like you except i’m staying at one of their partnered hotels. I travelled across the world just for this and am having a blast so far- the journey is truly a challenge. Just want to say again thanks for the time and effort you put into this diary. I wish you godspeed on your recovery.
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Congrats on your journey.
so how's your gait? when do you think you'll able to walk normally?
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Thank you. Are you planning to do your LL any time soon?
What's your recommendation for how much we should weigh before doing precise tibias?
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Thank you for sharing your diary.
May I ask how is your recovery so far?
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How’s your recovery so far? Any updates?
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If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.