Hi InFullStryde,
This is probably the best diary ever ! Thanks so much!
1) How heavy and big is the ERC device? Is it portable in a backpack?
2) Do you manage working during this adventure? I read you wanted to work from home
Quote from: Pilor on January 17, 2019, 08:33:51 AMHi InFullStryde,
This is probably the best diary ever ! Thanks so much!
1) How heavy and big is the ERC device? Is it portable in a backpack?
2) Do you manage working during this adventure? I read you wanted to work from home
The ERC Device is pretty good size. I'd say 
It's about 5 lbs or so and the company will provide you a rolling type case for it. It reminds me of a rolling brief case. So the device is portable; but its not "fun-sized". Its like carrying around a brief case.
I am working from home and 100% effective this way. Since getting home from hospital after a three day stay after surgery, I have worked an average of 8 hours per day. Stretching, PT, and lengthening are just done in between work.
Let me know if you have any further questions!
Day 14 - Little improvement each day; continues. [6.93mm Taller]
Time goes fast doesn't it? It was a little over two weeks ago since my surgery morning. One of my later life credence's is to place yourself into a process that will ultimately lead you to what you desire/want in your life. Once placed, it is only time and effort now that is needed to get you to that exact place. Well, here I am. I've placed myself into a process and time goes by so quickly...(where does the time go?) and I'm doing everything I can to succeed in this process. Today was a decent day. I did have dull pain in my legs again at about level 5...which is very comfortable. In a bit a daze as well, since I been using the Norco pills regularly; but I'm all out of them and I'm glad I am. The pain isn't too bad at the moment and I'm switching to Tramadol and Tylenol PM. My hope is that I can get my pain under control very soon. I understand that I'm still in the initial difficult weeks. The first 3 weeks of LL based upon the diaries and conversations I have read and had are the most challenging and they test you in ways you could have never imagined. Today, I worked a full 8 hours, I am transferring from bed to wheel chair to walker to bed on my own and I'm ready to take major "steps" forward in the up coming 3rd week. My left leg is still the "weaker" leg; but it gets better daily. I don't want to brag to much about my right leg; but I feel like I can kick field goals with it. All joking aside, it's recovering too; but feels great. Little by little my friends.
My status at end of week 2:
Pain Average:
1/10: 5%
2/10: 5%
3/10: 13%
4/10: 25%
5/10: 25%
6/10: 20%
7/10: 4%
8/10: 1%
9/10: 2%
10/10: 0%
Walking Status:
-Walking very slowly and carefully on a walker. Slightly favoring weaker left leg. Mostly fluid steps and full range of motion. Balance is still off and a bit wobbly. Will take some time; but should resolve shortly.
Flexibility and Strength:
-Can lift both legs to full extension while sitting down and laying down
-While sitting, can bend knees beyond 90 degrees up to about 110 degrees ( i think)
-While sitting, with bended knees can lift close to chest with no issue. Right leg is stronger than left however
-Need to work on bending knee while legs are lifted. Have not tried to bend leg to touch butt with foot yet. Advanced movement that I will introduce in week 3.
-Slow and safe side way, leg movements, and nice to see mobility returning with fwd , back, and sideways movement of legs. Ways to go; but it is returning.
-Overall Legs are still tender; but as I mentioned, improving every day and haven't pushed hard with PT yet (won't push for first 2 weeks), week 3, we start to go harder.
Guy's, other than that, just going day by day. Let me know if you have any questions. Onward and upward.
Best Regards,
Awesome Diary so far ! I'm going to be doing my surgery with Dr. Mahboubian as well since I reside in East LA!
Keep pushing! I'll be following your diary sending positive vibes and support
Very good diary!
Forgot to mention one tip that happened to myself and a couple of friends, later on during your lengthening we started missing cycles, and started having leg discrepancy.
I’m not sure why my friends had it, but for me, I stopped lengthening in the bed but rather started sitting in the chair. Well what happens when you do that is you flex your quadriceps. When this happens the magnet has less ability to make good contact. Toward the end I went 14 days on my right leg and only had 3 days worth of length. So advice, do it in bed and relax your quad for maximum contact, also give it slight pressure for good contact. If I had to guess, it happened in my friends because you start to regain your quadriceps and if you have big quadriceps magnet contact becomes an issue. Infant for me, immediately post op they had me lengthening from the side before going on top because I started out with big quads.
Quote from: superusercj1 on January 18, 2019, 08:50:01 AMVery good diary!
Forgot to mention one tip that happened to myself and a couple of friends, later on during your lengthening we started missing cycles, and started having leg discrepancy.
I’m not sure why my friends had it, but for me, I stopped lengthening in the bed but rather started sitting in the chair. Well what happens when you do that is you flex your quadriceps. When this happens the magnet has less ability to make good contact. Toward the end I went 14 days on my right leg and only had 3 days worth of length. So advice, do it in bed and relax your quad for maximum contact, also give it slight pressure for good contact. If I had to guess, it happened in my friends because you start to regain your quadriceps and if you have big quadriceps magnet contact becomes an issue. Infant for me, immediately post op they had me lengthening from the side before going on top because I started out with big quads.
This sounds like a great expert tip to me! I have been doing my lengthening, so far, from my chair, with partially straitened leg since the wheelchair had elevated foot rests. My quads are not large and I do apply a bit of pressure myself. That is so interesting that they had you lengthen by placing the device on the side! I suppose, that so long that the device is lined up properly that it will elongate regardless of where the ERC is placed. I place on top of the leg, central to the area where Dr. M drew the line on my legs. Friday, January 25th, will be x-ray day and I'll report back on if any issue occurred for me while lengthening and sitting!
Quote from: Movie on January 18, 2019, 06:50:00 AMAwesome Diary so far ! I'm going to be doing my surgery with Dr. Mahboubian as well since I reside in East LA!
Keep pushing! I'll be following your diary sending positive vibes and support
Awesome, man. I could use all the support available! So far, so good with Dr. M! Follow close and I'll be as detailed as possible. It's important that everyone knows what to expect when it comes to CLL. We can eventually connect over the phone to review once I'm deeper into the process here.
Day 15 - Walking taller and continuing to Stryde [7.92mm Taller]
I surely hope that each of you had a great week. My week was pretty decent and of course, it was like no other week I have experienced in my entire life.
Basic summary of the day...
-Worked a complete 8 hour work day.
-Had a great PT session
-My friend brought over some fish taco's yum
-Pain level was at average a 2 or 3! Tramadol worked much better for me then the Norco and I don't feel the harsh side effects that Norco brings
Highlight of my day...
Well that would definitely have to be the thrill of the PT Session. I assume that in another month or so the days are going to become quite routine and perhaps even boring; however, during the early stages of CLL, the CLL'er is always looking for every tiny glimpse of improvement. Today, at PT, i walked well over 100+ steps, with the walker...high knees, leg over leg... So that was great. One minor little issue at the moment however. My notorious left leg has a tendency of wanting to bend inward a bit and hence my feet are too close together when I walk. My right leg, is strong and no issue at all. This is just one of those post surgery things that should eventually go away once all the muscles reactivate, are strong, and ready to go. In talking to other LL'ers, who have experienced similar issues and hear that this typically goes away in and around week 4/5. The key is to keep walking and focus on keeping the leg outward. It's important to note that my leg isn't stuck inward; it just seems to want to go that way. I can keep it outward if I'm conscious about it. Either way, I'll have Dr. M look at it next Friday during my follow up visit.
All-in-All a good day guys. Lower pain, walking with the walker, getting stronger and mastering a routine hopefully that will allow me to gracefully glide through these next few 4-5 months in "Stryde". One other fun note. You have to love the new Stryde nail. I was fullly weight bearing on it, while on the walker. The walker mainly just kept me balance. It's a real workout for your legs when you can have that body weight bearing down on those legs. Once I am able to balance well enough on my legs I should be on crutches and cane. That could be 1 month from now, or 2, not sure; but just going to play it safe and focus on doing my part correctly.
As far as lengthening goes, I do feel tighter; but nothing major. I am massaging the soft tissue and continuing to stretch around the clock.
Okay, Guys...That is all I got for now but please feel free to ask questions.
Excellent to hear!
Bonus Update
Hi guys, just a bonus update. I woke up a bit ago and did my lengthening and all worked out well. I will still do my day 16 update later this evening; but I wanted to include this bonus update since its a positive thing to share. I finally got a good night sleep! My switching over to the pain medication, Tramadol, away from Norco, and taking 2 Tramadol's every 4 hours and then at about 1 hour before bed time, I took 2 Tylenol PMs'.....this combination provided for a rested night and my legs did not bother me much at all. I just wanted to share this, in case any current or future CLL'ers struggle with pain, especially within the first few weeks. My pain level, which had been on average between 4-6/7...is down to a 2/3..sometimes 1. It has only been 1 day; but I will let you all know if this trend continues; especially as I get into the 4th/5th cm.
I'll be back later with more update on how Day 16 went.
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