Quote from: ghkid2019 on September 11, 2020, 09:45:22 PMI would imagine that morning of surgery day at 4am felt like a movie SNC. Like a Christopher Nolan movie with Hans Zimmer soundtrack in the background. Absolutely surreal.
Like a reincarnation trip or something.
You made a good analogy! Exactly like a movie that you know are in it, and it's so real! Kinda like one of those war movies, when it suddenly hits you that, this is serious and you are going to a war with no 100% guarantee of victory!
I am saying these stuff not to scare anyone. I just want my future CLL'er folks know that if they got those feeling a few days before the surgery and especially in the morning of the surgery, those are totally normal. I tried to convert those feelings into positive energy! I don't know how to describe it, but in tense moments, when I get so stressed, somehow I can convert the stress into energy and get so hyper and crazy for what is going to come! to a level that I can embrace the worst case and still be happy.
I am putting everything in my mind, hoping my experience and thoughts would help at least some of you future CLL'ers!
Femurs with Dr. Shahab Mahboubian - July 2020
Day 50 (Thurs., Sep. 10) - 43.6 mm Taller
Day 51 (Fri., Sep. 11) - 45 mm Taller
The numbness on left leg I started to experience Tuesday evening and Wednesday, is stabilizing, i.e., the numbness intensity and duration have not increased in days 50 and 51.
However, my days are increasingly tough, due to the super-linear increase in pain (as compared to Monday and as days pass) mostly because I am doing 4 sessions instead of 3 sessions per day.
Per Dr. M.'s instruction, I have also cut down on my calcium in-take, to decelerate the high rate of bone growth; I however have not downgraded the quality of my diet, nor the quantity of the rest of the supplements with the exception of one item: I have completely stopped drinking milk for the time being. I have also tried to take it easy on walking, because I believe one reason for my high growth was the long unaided walks I had in the last few weeks.
As I suspected and many of you also noted, my pain is at least partly nerve pain. I emailed Dr. M. about it and he prescribed Gabapentin. I am going to start taking it tonight.
I am looking forward to finishing the 4-session distraction days and go back to the normal routine I had on Monday and earlier!
My nerve pain started to improve over couple of weeks after starting gabapentin. It just reduced my nerve pain and made it much more manageable. Good news is that most of my Nerve numbness is starting to go away since I stopped lengthening 😃 Also, the doctor allowed me take ibuprofen to stop bone growth because I slowed the turns to 0.75mm to help to reduce the nerve pain and I had more than usual amount of bone growth every 2 weeks I took x-ray at Paley Institute. There are studies that suggests ibuprofen does stop bone growth but it’s not 100% proven scientifically.
SNC let us know howthe gabapentin treats you/ if you get any sides.
from what ive read with other diaries, once you hit 5cm, itll only get tougher.
but you got this! youre more than half way there!
Quote from: readyprecisestryde on September 12, 2020, 07:18:41 AMMy nerve pain started to improve over couple of weeks after starting gabapentin. It just reduced my nerve pain and made it much more manageable. Good news is that most of my Nerve numbness is starting to go away since I stopped lengthening 😃 Also, the doctor allowed me take ibuprofen to stop bone growth because I slowed the turns to 0.75mm to help to reduce the nerve pain and I had more than usual amount of bone growth every 2 weeks I took x-ray at Paley Institute. There are studies that suggests ibuprofen does stop bone growth but it’s not 100% proven scientifically.
Dear readyprecisestryde Bro,
I really appreciate your public and PM posts to me. They have all been very inspiring and informative.
I started taking Gabapentin this morning. Based on your PM and also online info, I expect Gabapentin to take effect within a week or two! Since I sometimes have unbearable pain, and especially now that I am on 4-distraction-session days, I believe I should mix Gabapentin with Tramadol. I already have a green signal from Dr. M. to take them both, but within gaps of at least two hours between them.
Did you do something similar? meaning you took another painkiller in addition to Gabapentin with some few hours of gap between taking that painkiller and Gabapentin?
Thanks,
SNC
Quote from: wannabeidol on September 12, 2020, 05:07:06 PMSNC let us know howthe gabapentin treats you/ if you get any sides.
from what ive read with other diaries, once you hit 5cm, itll only get tougher.
but you got this! youre more than half way there!
wannabeidol,
It's very apparent Bro, that I am going uphill on a road of pain that just increase as I try to reach the end! I am just so lucky that my night sleeps are relatively good. I wake up several times, but when I go to sleep, it's a deep one and I don't feel pain, but as soon as I wake up, I experience many episodes of random pain (random in terms of intensity and location) almost all on my left pain!
I took my first 300mg Gabapentin tablet this morning. Dr. M. prescribed two per day. I took the first one about two hours ago. I'll report any side effects, but so far, it has not effect on the pain itself. It seems I have to wait for a week or two to see it kickin' in on pain.
Meanwhile I guess I am gonna depend on my old pain management (Tramadol with gaps of at least two hours w.r.t. Gabapentin + pain ointments + hot showers + ice packs + massages + any form of distraction [I will probably finish all Prime and Netflix movies by the time I am done with this Stryde Nail Challenge 
]).
Hello, I stopped using oxycodone after week 3 and was not using much of it either. I switched to Tylenol 500 mg once or twice daily. I had more than usual bone growth and the doctor allowed me to take Ibuprofen. I never took tramadol and can’t make any comment since I have taken both tramadol and Gabapentin together. At the same time, I took one 300 mg Gabapentin every 8 hours and it took the nerve pain down drastically. The side effects I got from Gabapentin were a bit of memory loss, drowsiness, and dropped my libido.
Sorry typo...I can’t make any comment since I have not taken both tramadol and Gabapentin together.
Quote from: readyprecisestryde on September 12, 2020, 06:28:37 PMHello, I stopped using oxycodone after week 3 and was not using much of it either. I switched to Tylenol 500 mg once or twice daily. I had more than usual bone growth and the doctor allowed me to take Ibuprofen. I never took tramadol and can’t make any comment since I have taken both tramadol and Gabapentin together. At the same time, I took one 300 mg Gabapentin every 8 hours and it took the nerve pain down drastically. The side effects I got from Gabapentin were a bit of memory loss, drowsiness, and dropped my libido.
who was your surgeon readypercisestryde?
Paley Institute...... Dr. Paley did one leg and Dr. Robbins did the other leg. They work together in the surgery room
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