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[brondo]

Hey StrydeNailChallenge,

What exactly happened to your left leg that didn't happen to your right? Hope you have a good recovery.

-brondo

[StrydeNailChallenge]

Hey StrydeNailChallenge,

What exactly happened to your left leg that didn't happen to your right? Hope you have a good recovery.

-brondo

Hey Brondo,

It's a long story. I have put all the detail in my diary here. However the short version of it is that since my right leg has had almost zero level pain since day 1, the contrast between my right leg and left leg has captured my attention to try to figure out what I could do to make my left leg improve to be like my right leg. It is very possible my left leg pain is typical; according to many folks here who have posted their story including the pain they've experienced.. That would then mean that I got lucky and my right leg somehow exceptionally has not pain.

In general my speculation on the pain the LL surgery is that a lot of it is related to the nerve system, but I am not sure.

In any case during the last two weeks or so, I have got a better handle of pain management and my night sleeps are much better than the first few weeks.

[brondo]

Hey Brondo,

It's a long story. I have put all the detail in my diary here. However the short version of it is that since my right leg has had almost zero level pain since day 1, the contrast between my right leg and left leg has captured my attention to try to figure out what I could do to make my left leg improve to be like my right leg. It is very possible my left leg pain is typical; according to many folks here who have posted their story including the pain they've experienced.. That would then mean that I got lucky and my right leg somehow exceptionally has not pain.

In general my speculation on the pain the LL surgery is that a lot of it is related to the nerve system, but I am not sure.

In any case during the last two weeks or so, I have got a better handle of pain management and my night sleeps are much better than the first few weeks.

Hope it's not too bad then. Looking forward to your future updates!

[StrydeNailChallenge]

Day 38 (Sat., Aug. 29th) - 30.7 mm Taller
Day 39 (Sun., Aug. 30th) - 31.7 mm Taller
Day 40 (Mon., Aug. 31st) - 32.7 mm Taller
Day 41 (Tue., Sep. 1st) - 33.7 mm Taller


Last couple of weeks have increasingly become more normal and predictable. My routine including pain management, etc. look almost like the same. I have continued to walk 100% unassisted. My walks still look wobbly. I still don't bend my left knee while walking. I feel more swelling and pain on the left leg.  I drive almost every day just to feel a bit more fresh. Driving and hot showers make me feel normal, cause those are the times, my legs don't give me a feeling that I had a surgery!

Just to be safe, I reserved a PT to come by on Wed. the 2nd. My goal is to get an evaluation from a PT on how my self-PT has turned out so far. Also I would like to know about the weak muscles so I can work on them. Finally any tips from the PT on improving the left leg would be great. I will provide an update here about that.

[Aquahoma2]

Hey!

It’s so awesome you’re doing great while lengthening!

How is your pain? Do you drink painkillers? Do you think you can avoid drinking them, if you actually do?

[StrydeNailChallenge]

Hey!

It’s so awesome you’re doing great while lengthening!

How is your pain? Do you drink painkillers? Do you think you can avoid drinking them, if you actually do?

Hey Aquahoma2! Thank you!

I was finally able to manage the pain using a pain management I came up with, based on a lot of trial and error and also the posts in this forum. I have mentioned the details in my diary, but it's basically taking Tramadol as necessary but in the worst case within 5 hours of each other (I sometimes take them within 8 hours of each other or longer, if not much pain) + hot showers + using some off-the-shelf ointments that are available in Costco and Amazon. The resulting pain for most of the times is 0 to 3 on the left leg and 0 to 1 on the right leg.

If you see my diary, you'll notice I tried dropping pain killers several times and every time I finally failed and had to restart taking them. Tramadol has been great so far and I think I am going to continue to listen to my body and take as necessary. Ideally I would like to take 2 tramadols per day, but so far it's been mostly 3 or 4 per day.

I hope this answered your question. Keep in touch Bro,
SNC

[Aquahoma2]

Oof, but tramadol is opioid, isn’t it?

I think it’s kinda risky to take it for long. Have you asked your doctor if that stuff can cause addiction?

[StrydeNailChallenge]

Oof, but tramadol is opioid, isn’t it?

I think it’s kinda risky to take it for long. Have you asked your doctor if that stuff can cause addiction?

Hey Aquhoma2,
You made a very important point; and that reminded me to write here something I think I learnt during the stryde process, which I would not have believed, had I not experienced it myself.

First I should emphasize that Tramadol is indeed an opiod painkiller and addictive. However I had started with Norco which is more powerful and addictive. Therefore it was reasonable to switch to Tramadol as pain subsided. Dr. M. also confirmed that overall it is a more mild pain killer which consequently may have lower negative impacts on body than Norco does.

Tramadol and Norco are both based on Dr.'s prescription only. Pharmacies carefully check your ID before giving you the pills. I guess that's because there are many cases of abuse and addiction, especially on Norco. I think CLL Drs. are aware that their patients may have to take the pain killers as necessary but for months

Here is what I learnt: I always believed that my mind is so strong that even if I try Heroine and get addicted to it, I can stop taking it any time I decide to ! I always pictured that I would stop right away and would never try it ever!  However quitting an addictive drug or medicine needs more than a strong mind! Another crucial factor is your body's reaction to lack of the addictive drug!  This is something I had never accounted for when in my mind I imagined myself as addicted to Heroine but enjoyed quitting Heroine successfully. 

The first time I decided to stop Norco, my body started aching and shivering so badly after about 18 hours without Norco! that's when I realized, if I were on Heroine and thanks to a strong mind stopped taking it at some point, I could still die, cause my body could not handle the strong symptoms of quitting Heroine.

Anyways, I thought I share what I think of the addictive pain killers, based on my little experience.

CLL'er buddies, let me know if you have any questions for me. 

[Hagane]

hey SNC!
youre only 3 days away from 4cm! ( almost halfway! whoo)

i notice youre updating less, which must mean distraction has become routine/monotonous, and theres nothing new to report

keep up the good work!

[brondo]

Hi SNC,

Hope you're doing well. I have some questions about the pain killers. When do you hope to be completely off the pain killers? Is there a specific way to "step down" off the medication so that you don't get those withdrawal effects or is that just inevitable?

[Hagane]

Hi SNC,

Hope you're doing well. I have some questions about the pain killers. When do you hope to be completely off the pain killers? Is there a specific way to "step down" off the medication so that you don't get those withdrawal effects or is that just inevitable?

 hey brondo
i can answer that question, the key is simply to slowly taper the dosage. and as you taper you can replace the opiates with other meds such as tylenol, NSAIDs should be avoided due to interference with prostaglandins synthesis ( affecting bone growth)

here are some resources
https://www.hss.edu/conditions_patient-guide-opioid-tapering.asp
https://www.rxfiles.ca/rxfiles/uploads/documents/opioid-taper-template.pdf
https://www.cdc.gov/drugoverdose/pdf/clinical_pocket_guide_tapering-a.pdf


https://www.cdc.gov/drugoverdose/pdf/clinical_pocket_guide_tapering-a.pdf

[brondo]

Thanks wannabeidol!

[StrydeNailChallenge]

hey SNC!
youre only 3 days away from 4cm! ( almost halfway! whoo)

i notice youre updating less, which must mean distraction has become routine/monotonous, and theres nothing new to report

keep up the good work!

Hey wannabeidol and brondo,
Apologies for being late in responding. I have had some tough days! ironically related to the last few posts we have had regarding addiction to Tramadol. I am doing better now. I will write the details shortly.

[StrydeNailChallenge]

Day 42 (Wed., Sept. 2nd) - 34.6 Taller
Day 43 (Thurs., Sept. 3rd) - 35.6 Taller
Day 44 (Fri., Sept. 4th) - 36.6 Taller
Day 45 (Sat., Sept. 5th) - 37.6 Taller

Tramadol Drama:
I take 3 to 4, 50 mg Tramadol pills per day. Found out on Wednesday that I would not have enough number of pills to survive, till Tuesday morning when I'll have my next appointment with Dr. M. I was short of about 2.5 days of supply.

I had a few options, including calling Dr. M.'s office to have them mail a prescription to me, or driving to their office to pick up the prescription myself (they had said for some reason they couldn't send any Tramadol or Norco prescription to pharmacies electronically). Instead, I decided to switch to Tylenol to save some pills for the last two days (Sunday and Monday) before my appt. with Dr. M. That was a big mistake! Man I suffered! my body is clearly addicted to Tramadol, no question about that!! That's not a surprise to me; cause I was certainly addicted to Norco after taking it for a couple weeks post-op and Tramadol is a more mild version, but still an addictive opioid.

I did some Tylenol replacement on Wednesday, Thursday and Saturday. If you have never been addicted and wanna know how bad it feels to be deprived of the supply just ask me        I think I can describe it as a combination of dull pain in legs, a general feeling that my body aches, shivering at times, feeling like my bones and body are cold, and mixed with anxiety and depression! my legs feel like two heavy rocks that I have hard time moving! worst part is that I cannot focus on any thing, neither work nor stretching nor anything even watching a movie or listening to a song!   my stretching quality was highly affected during the times I was not on Tramadol.   

I had tried so many different methods of pain management and finally found one that worked best: A combination of Tramadol, ointments for local pain relief, hot showers, and at times treating pain with ice packs. This is the lesson I learnt: don't mess up with the Tramadol part of it! I should make sure I would not run out of Tramadol until the distraction phase is over. I am going to ask Dr. M. to write two prescriptions if necessary, so I would not run out of it! Worst case I would drive to Seattle if I have to, just to be with you, my Tramadol

I will double check with Dr. M. that taking 3 to 4, 50 mg Tramadol pills for the next 45 to 60 days or so, would be okay with no long term side effects on my liver, etc. If he confirms, then I would not have much concern. I know I can fairly easily quit Tramadol after the distraction phase is over; as I could do in case of Norco immediately in one day. Worst case, I would let my body fade into it, by taking half pills for a couple days, then 1/4th for a couple days, then 1/8th .. and finally stop it completely.

I hope my bad experience helps others be more careful than me in handling their pain medicine.

PT Experience:
The PT was late for the Wednesday appt., therefore we postponed it to Friday. He showed up on time on Friday! nice guy! he asked me to do some moves! and then he said I was too good to be PT'ed at home! he advised me to do outpatient PT, especially now that I can drive. His point was that when I go to the PT facility, they have much better equipment and pain remedy devices that he could bring to my place. I will call my insurance once more tomorrow to schedule an outpatient visit. I am a bit worried about COVID-19, but will go there to see how risky it and decide whether I could continue based on that visit.

[StrydeNailChallenge]

Hi SNC,

Hope you're doing well. I have some questions about the pain killers. When do you hope to be completely off the pain killers? Is there a specific way to "step down" off the medication so that you don't get those withdrawal effects or is that just inevitable?

brondo, Bro,
I plan to quit on Tramadol a few days after the distraction is complete; when my pain is at low levels. I am very confident I can easily quite on Tramadol either immediately in one day, or if not gradually within a few days.  Based on my Norco experience, I prefer to quite immediately in one day as I think my body can handle it. I would suffer for a few hours I imagine, but since my distraction pain would be over by then, I would imagine, it would be something I could easily tolerate.

[ghkid2019]

Tapering down slowly is ideal. Dropping cold turkey won't happen at this point, 3-4 a day will make your body way too dependent on it, imagine in a month when it hurts more and how long you'll be on this. Cold turkey usually results in relapse and it'll just lengthen the weaning off process.

Tapering down slowly shouldn't be too much a problem. It's a good plan. Especially since after Lengthening phase, the pains will dramatically reduce at a quick rate, so you physically don't need as much anyways since less pain

Hot showers is a good idea, heat packs as well. Ice packs I would avoid if you aren't swollen.

You're almost at the half way point. You beaten the odds already at your age. Push through SNC, I beleiebe in uu

[StrydeNailChallenge]

Tapering down slowly is ideal. Dropping cold turkey won't happen at this point, 3-4 a day will make your body way too dependent on it, imagine in a month when it hurts more and how long you'll be on this. Cold turkey usually results in relapse and it'll just lengthen the weaning off process.

Tapering down slowly shouldn't be too much a problem. It's a good plan. Especially since after Lengthening phase, the pains will dramatically reduce at a quick rate, so you physically don't need as much anyways since less pain

Hot showers is a good idea, heat packs as well. Ice packs I would avoid if you aren't swollen.

You're almost at the half way point. You beaten the odds already at your age. Push through SNC, I beleiebe in uu

Thanks ghkid2019,
I take your advice, wannabeidol's and others very seriously. I will let you guys know how my experience goes with Tramadol and the quitting process.

Thanks for the kind words. My age is just really misleading!  I have people working with me that are in their 20s and I look younger, fitter and more energetic than them! I think depending on the body, someone could feel and be younger or older than he/she really is by decades. In my case I have been really lucky. A combination of good genes and healthy life style has made me the fittest I have seen among all my friends, and colleagues.  It's worth reading about biological age aka physiological age vs chronological age!
https://www.verywellhealth.com/what-is-chronological-age-2223384#:~:text=Chronological%20age%20is%20the%20number,habits%2C%20to%20name%20a%20few.

 I may be biologically a teenager There is a catch though! breeds like us die very young!  Therefore there is a good chance I would die in a few years, but I would die handsome

[brondo]

Thanks for responding SNC,

I was wondering why you were running low on medicine though? Was the pain overloading you and you decided to take more painkillers? Hope you get the meds from Dr. M and get through this safely. Rooting for you.

-brondo

[StrydeNailChallenge]

Thanks for responding SNC,

I was wondering why you were running low on medicine though? Was the pain overloading you and you decided to take more painkillers? Hope you get the meds from Dr. M and get through this safely. Rooting for you.

-brondo

I actually took less than what I was prescribed to take (which is one 50 mg pill every 6 hours). There was a couple times I took two every 4 hours at start [per Dr.'s advice that I could double the doze if pain is too high], but for many times I took a pill with longer periods than 6, e.g., many times every 8 hours or so.

I believe It was because the prescription was not enough for 21 days, which is exactly the number of days between my previous appointment and next one on Tuesday with Dr. M.
I will make sure this would not be repeated, as a simple issue like this made my life hell for days!

[Hagane]

hey SNC
sorry to  hear about your tramadol issues
a big issue with opiates is you can get Opioid-induced hyperalgesia, which paradoxically causes you to be MORE sensitive to pain
 

perhaps you may need to consider supplementing with nonpharmalogical modalities such as TENS (Transcutaneous Electrical Nerve Stimulation) and as silly as it sounds meditation. (there are many good programs out there im presonally a big fan of headspace)
also are you getting any nerve pain? like shooting pains? electrical shocks?
you might wanna look into medications like Carbamazepine (Tegretol) or Pregabalin (Lyrica)

[StrydeNailChallenge]

I actually took less than what I was prescribed to take (which is one 50 mg pill every 6 hours). There was a couple times I took two every 4 hours at start [per Dr.'s advice], but for many times I took a pill with longer periods than 6, e.g., many times every 8 hours or so.

I believe It was because the prescription was not enough for 21 days, which is exactly the number of days between my previous appointment and next one on Tuesday with Dr. M.
I will make sure this would not be repeated, as a simple issue like this made my life hell for days!

I am confirming what I said is correct. Just checked the Tramadol container and it reads Qty as 60 tablets. This means I had 15-day supply (4 per day, i.e., every 6 hours, per Dr.'s prescription) whereas I needed 21 days.

[StrydeNailChallenge]

hey SNC
sorry to  hear about your tramadol issues
a big issue with opiates is you can get Opioid-induced hyperalgesia, which paradoxically causes you to be MORE sensitive to pain
 

perhaps you may need to consider supplementing with nonpharmalogical modalities such as TENS (Transcutaneous Electrical Nerve Stimulation) and as silly as it sounds meditation. (there are many good programs out there im presonally a big fan of headspace)
also are you getting any nerve pain? like shooting pains? electrical shocks?
you might wanna look into medications like Carbamazepine (Tegretol) or Pregabalin (Lyrica)

wannabeidol, buddy! thanks a lot for letting me know. Meditation reminder is what I needed the most. I am going to start right away. I guess i will start with youtube and get some advice from you on how to get better at it.
 I will also note down the medications you mentioned here and discuss them with Dr. M. and if he gives me a green signal I will try them out.

I believe I started getting nerve pain episodes a while ago. They mostly appear around the knee area, but could appear randomly on any spot on my legs, even tibias. I don't get any nerve pain on the upper body.

[Hagane]

headspace also offers a 2 week free trial! so if you cancel before the 14 days you should be fine!

https://www.headspace.com/meditation/pain

[StrydeNailChallenge]

Tramadol Drama:
I take 3 to 4, 50 mg Tramadol pills per day. Found out on Wednesday that I would not have enough number of pills to survive, till Tuesday morning when I'll have my next appointment with Dr. M. I was short of about 2.5 days of supply.
.....

Pain Management Reminder:

Future CLL'er Brothers and Sisters,
I cannot stress enough the crucial role of pain management in the final outcome of the CLL process. I took this challenge, not only to pass it successfully, but also to hopefully learn something from it!

The number one lesson for me, so far is that pain management is the KING in this war!   

Last night I took two Tylenol PM pills before going to bed with a confused, anxious mind, and a body that I could hardly move. I skipped most of my stretching exercises while on Tylenol (and out the Tramadol).

I had 9 Tramadol pills left, therefore I knew I could resume taking Tramadol this morning and survive till Tuesday when I meed Dr. M. I took one at 5 am this morning, and within half an hour, I was back to feeling normal. I could resume my stretches and could achieve the levels I were at, before switching to Tylenol. This shows how important it is to stick with a winning pain management. It's been 8 hours and 15 minutes since I took Tramadol and I still feel normal with pain levels of 0-3 on my left and 0-1 on my right leg. I will probably take my next Tramadol shortly, in advance to my second distraction session of the day, just to be safe, but in general what I have found out is that I can take Tramadol with much longer periods than 6 hours.

It seems my average has been one 50 mg Tramadol pill every 8 hours.

I have also learnt through this process that I should not fight the pain! Trying to skip or stop pain killers, while tolerating pain is a bad idea. I tried quitting on pain killers, but I failed every time, cause my alternative plans (hot/ice packs, showers, more aggressive stretching, treating pain locally with ointments, distraction with watching/listening with video/audio material, going out, driving, etc.) failed.

Having pain and not doing much about it, would most likely force you to jeopardize the quality of your stretching sessions which are essential during distraction and consolidation phases. Of course we should keep looking for less harmful pain management solutions, but meanwhile, we should stick with the best we have found with the help of our Dr., and experiences others have had, but tolerating pain is not productive at all.

[StrydeNailChallenge]

headspace also offers a 2 week free trial! so if you cancel before the 14 days you should be fine!

https://www.headspace.com/meditation/pain

Great! thanks very much

[readyprecisestryde]

Hello, Doctor Robbins @ Paley institute prescribed me Gabapentin for nerve pain. It got rid of most of it and made it much more comfortable during the distraction phase. I was able to sleep while using Gabapentin. Safe dosage is 900mg daily. You may want to discuss this with the doctor in case you are still getting the nerve pain

[StrydeNailChallenge]

Hello, Doctor Robbins @ Paley institute prescribed me Gabapentin for nerve pain. It got rid of most of it and made it much more comfortable during the distraction phase. I was able to sleep while using Gabapentin. Safe dosage is 900mg daily. You may want to discuss this with the doctor in case you are still getting the nerve pain

Hi readyprecisestryde,
Thanks for this information.  I will certainly discuss this tomorrow with Dr. M.    I will try to find out tomorrow from him, if my pain is mostly categorized as nerve pain or if it's something else.

My night sleeps were terrible during the first two weeks or so, but quickly changed to be close to normal! It's been weeks since I started to get much better sleeps. In fact in the days I was out of Tramadol and trying to survive on Tylenol, I slept for a few hours during daytime and also for most of the night, cause when I sleep, I don't have pain even if I don't take any painkillers! However as I had noted in my diary before, for that to work, I have to sleep face down!!! It somehow suppresses the pain when I sleep on my thighs and knees! It's a weird habit I have had even before the surgery and now it comes handy!!

I am wondering if anyone else has found sleeping face down helpful in terms of pain management!

[StrydeNailChallenge]

Day 46 (Sun., Sep. 6) - 38.6 mm Taller
Day 47 (Mon., Sep. 7) - 39.6 mm Taller

Nothing out of the ordinary! Just that having resumed on Tramadol, pain was 0-3 on left and 0-1 on right.

Day 48 (Tue., Sep. -  Appt. with Dr. M.  - 41 mm Taller


The day started great! Dr. M. was very impressed with my walk. He also said that my x rays look excellent.
Best in Flexibility and Moves
Dr. M. also said that I am the best by far, among all the patients he has had, in terms of flexibility and moves    
 My goal has been to successfully complete this CLL challenge and getting some "best" titles out of it would be a great bonus

I asked Dr. M., if he thinks I am possibly the best overall in terms of quality of results and recovery. He repeated what he said during our first post-op appt., that it's too soon to tell and that I have tough competition (he once again mentioned a military guy from Hawaii and a teenager, both of whom apparently recovered exceptionally well).

Now here is the very surprising part: He said that the x rays are a bit too excellent for him! Then he clarified that in the spectrum of LL'ers recovering from the surgery, I am on one extreme end of the spectrum with my growth rate, exceptionally high, to a level that he is now a bit concerned that my bones may have an early consolidation. He thinks I must have a great diet and with all the vitamins and calcium and a very healthy body, my growth is exceptionally fast. He asked me to cut down on calcium!  He also instructed me to do 4 distractions sessions for two weeks to try to create some head space for the bones.  He also wanted me to try to cut down on Tramadol, however with 4 sessions, I don't see that happening for me!

I decided to add a 4th session starting today. That created some more pain that usual starting evening time and also some numbness, mostly on the left leg (tibia and foot).

 
Day 49 (Wed., Sep. 9) - 42.3 mm Taller


It was a painful day! I jumped into shower twice for a hot shower! I also took 3 Tramadols for the day. The feeling of numbness on my left leg started yesterday and got worsened today. I tried to mitigate it by doing more stretches and massages.

[brondo]

Great progress SNC! Just wondering how flexible are you actually if Dr. M said that? You can do full splits?

[Hagane]

congrats SNC!
did you get anything for your nerve pain?

[StrydeNailChallenge]

congrats SNC!
did you get anything for your nerve pain?

Dear wannabeidol,
He asked me some questions and determined that I have not yet developed nerve pain yet. The pain I have must be related to surgery (cause starting day 1 I had pain on left) plus the distraction pain.  The new numbness feeling may be changing the story. I have already emailed Dr. M. about the numbness, and I am waiting for his response.