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.
Starting Bilateral Tibial Surgery With Dr. Paley - Dec-02-2021
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.
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.
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.
Best of luck!
Thanks man.
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.
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.
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.
I wish you the best. It's interesting to read the diary of a quadrilateral LL patient.
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