It’s sooooo exciting to read your diary 
Thank you very much for taking your time and effort to describe all details.
What Dr M says about walking rehab now?
I heard that Paley actually encouraged patients with Stryde to walk as soon as possible after surgery, but I totally agree with you guys taking it easy not giving too much load on broken bones for the first few weeks.
Quote from: TemakiSushi on January 14, 2019, 01:38:54 PMIt’s sooooo exciting to read your diary
Thank you very much for taking your time and effort to describe all details.
What Dr M says about walking rehab now?
I heard that Paley actually encouraged patients with Stryde to walk as soon as possible after surgery, but I totally agree with you guys taking it easy not giving too much load on broken bones for the first few weeks.
Hi Temaki! Dr. M is actually very strict on saying that he wants me weight bearing as soon as I can tolerate it; even if its just a few baby steps. Most if not all of his patients are able to weight bear and are out and about on their walker shortly after surgery. The first few days after surgery, I used the walker to take a few steps here and there; but I felt like the pain was extreme 9/10 level. Dr. M says that walking as much as tolerated is important because it helps promote healthy bone growth and also is good for mucles and soft tissue.
The primary issue with me is that I had the weak left leg that needed to catch up with my right leg. I'm going to re-introduce walking with the walker on Wednesday morning and hopefully this stays on permanent rehab option going forward. I'm actually excited to try since my leg is feeling a lot better than they did a week ago. Further more, once I can tolerate; the Styrde nails can hold my weight; so I will be working toward shedding any assistive device once its 100% safe.
I will keep you posted!
Congrats on your journey, 2019 will surely be exciting year for you!
I really enjoy reading your diary filled with many information, just one thing: how much have you spent so far in terms of the procedure and hospital expenses?
You may also want to substitute vitamin D for enriched whole food like sardine with bone-in and spinach, because vitamin supplements are synthetic drugs, or at least try to get ones from natural harvest food based vitamin.
I will be flying to Germany in mid May this year to have consultation with Dr. Betz and potentially going forth with procedure afterwards if i feel confident with what i hear and see overthere.
Thank you for the kind words, ShortPainLongGain, and the great advice. I'll be taking you up on this advice because it's definitely better to consume Vitamin D the natural way. I'll do this in addition to the supplements.
Day 11 - More of the Same, Subtle improvement in all areas - [3.30mm Taller]
Good day, my friends. I hope everyone had a productive day and for those of you out there currently in the LL process; I certainly hope you're coping with your day -to-day quite well. Today my legs felt less "dull" pain than the prior two days. I'm not sure what brought on these aches; but from what I have heard from other diaries, aches, cramps, spasms, etc...are par for course and normal for this type of procedure. Pain was down from what I would call a 6/7 to about a 4/5 which is a lot easier to tolerate. I am still staying consistent with my Norco; but I am going to conscientiously ween myself off of Norco and preserve this drug for night time sleeping if needed. I plan on switching over to Tylenol PM in the coming day and also incorporate "Icy Hot" cream in home to slow down the aches and better manage the pain. I do not want to experience any Norco complications related to addiction, etc; so I am going to be very careful.
Physical Therapy was good. Again, I emphasized to my professional home health PT that I prefer to wait until Wednesday before we start the walker again. The surgery pains are just about subsided...well they will linger, i know, but the major pains are much more under control and I do not want any set backs due to a walker related injury/extreme inflammation due to my inability to properly stabilize. I continue to lengthen little by little. Pain level is currently fine and I'm looking forward to hopefully being up to weight bare or at least partially weight bare on my walker this week. Everyone send me some good luck vibes!
One more note; I think after I am able to get on my walker okay I will likely do outpatient PT. I'd like to take advantage of everything a PT facility has to offer versus the convenience of staying at home. Plus, I'm really wanting to get out of the house more... So this may be a great choice for me. I'll keep everyone up to date on my status and will check in tomorrow. Have a great day!
Glad you’re doing so well! Can you tell me how much the cost of stryde is with Dr M? If someone is flying from another country can they go home & lengthen? And can you ask Dr M if an 8.5 mmm stryde nail will be releasing?
Quote from: Ayesha12345 on January 16, 2019, 01:13:22 AMGlad you’re doing so well! Can you tell me how much the cost of stryde is with Dr M? If someone is flying from another country can they go home & lengthen? And can you ask Dr M if an 8.5 mmm stryde nail will be releasing?
Hi Ayesha,
Private Message me when you can and I'll share details. One of the advantages and reasons I chose Dr. M was because he allows patients to lengthen and do physical therapy from home. This is important to me. He does require me to see him every 2 weeks for x-rays and assessment; however he may be flexible to you as long as you can provide him further detail on how you could manage providing x-rays etc from home. I'm not sure. Here is Dr. M's email. Please feel free to reach him. He responds to email fairly regularly to prospects and he answers his patients emails right away. Shahab Mahboubian <[email protected]>
I'll have today's update shortly.
Day 12 - Dull pain continues, left leg still behind right leg; but improvement, day-by-day we continue to grow. [4.62mm Taller]
It was a fairly typical Tuesday for me as far as typical goes in the post - op world of CLL. Highlights included a dul level 5/6 pain in both upper leg areas. I managed pain with Norco and stretching. I will continue to explore ways to conquer the pain issue. If I can over come the pain issue; this will get a lot simpler to handle. All in all; not terrible though. No cries or moans; just don't like to have it there; but I do understand why it is there. It's still early, only 11 days post - op. I'm almost 50% of 1 centimeter and I believe I can actually feel "something"... I can't say its tightness of course; because I have barely lengthened, but I do feel something happening in both femurs now after I do a lengthen. It's awake in there.
Other that this; everything is normal for CLL standards. I am able to lift my legs 180 degrees with pretty good authority at the moment and can bend my knees while sitting past 90 degrees with no issue. It's pretty tight and I'm working on it. I worked out my upper body again with cables. I'm just trying to maintain some upper body strength while I'm going through this stretch marathon. I did 3 - amateur PT sessions, 2 with myself and 1 with my sister. Guys, wish me luck..tomorrow I meet with my home health PT and he and I will bust out the walker and take some steps. If you have followed the diary so far; you have gotten an idea that my left leg has responded a bit more slowly as compared to my right. It's true; my left leg is just not that strong at this point; but it's doing much better since the surgery date. We'll start out with baby steps tomorrow and it is my hope that I can build upon this; daily until my legs are fully healed from surgical pain, reaction and inflammation.
No more updates available for today; but tomorrow I will have big news on my walker results.
Other items on my mind
-Looking forward to walking again
-Planning on going back to work in early February, so long that pain is under control and I'm walking okay via walker and/or crutches. I work remotely every day; but I miss my team and I want to go outside!
-In week 3 or 4, I will begin outpatient PT at a local PT clinic. I want to take advantage of all the facilities available to me. I also, just want to get outside more and interact with people and things.
-Looking forward to working out harder at gym beginning in a few weeks after surgery pain is under control.
-Thinking of ways to manage pain better. Norco isn't helping me very much. Some but not much. Any ideas are appreciated.
Have a great evening and I'll be in touch tomorrow.
Hi InFullStryde,
Best of luck tomorrow. I know it’s hard, but you can do it.
It’s awesome if you can give us a video as you walking on a walker or a picture of your legs. It will help us having better visualization how LLer doing after only 13 days post-op. Hopefully your pain level will go down soon as well.
Stay strong
Quote from: Bestrong on January 16, 2019, 06:06:00 PMHi InFullStryde,
Best of luck tomorrow. I know it’s hard, but you can do it.
It’s awesome if you can give us a video as you walking on a walker or a picture of your legs. It will help us having better visualization how LLer doing after only 13 days post-op. Hopefully your pain level will go down soon as well.
Stay strong
Hi Be Strong! Thanks for checking in. I like your screen name. It's a reminder of what we have to be during a life changing procedure like this one! I will definitely take some pictures and soon video. As reference with words, on day 13, my legs are barely have any redness, swelling or bruising at all. My stitches are removed, and only small little band-aids are covering the incision areas. Dr. M appears to have given me a clean cut or what they call a "Hollywood" scar in these parts. Ha Ha. No redness, No real tightness and just very little swellling, limited to my "upper and inner" thighs. I can even sit on my butt and lay on my side without feeling pain in these areas...which is surprising because mostly everyone I have read about through diaries struggle to sleep on sides and butt due to the nail site pain. I will add however, that I am still sleeping on my back because my legs aren't quite flexible or strong enough to sustain a position where I am on my side. My PT is in one hour where I will begin my build up toward walking again, first via walker. I'll update later this evening on the status and how all this goes.
Day 13 - Pain subsiding, left leg stronger, I took my first REAL steps in the Walker [5.61mm Taller]
Good Day LL'ers!
Today was a great day. It didn't start out great, however. I woke up early morning last night around 2:00am with 8 level pain in my right leg; but was able to extinguish the pain in about an hour or so with a Norco. I got past it; and when I woke up in the AM around 5:00am, the pain was hovering around a 5. It continued to mellow out and I was able to enjoy most the day at a pain level of 3. My left leg continues to feel better. My legs feel like they are coming back together. I mind you, right after CLL surgery, your leg isn't going to feel like your own legs. They are awkward feeling...They feel heavier, they feel like they are aligned differently, and your leg muscles are so very tight. Your hamstrings and quads are wound up so very tightly...and its just something you want to expect and be ready for so you don't take it as anything more than a temporary side effect of this life changing surgery. Once you begin PT, the next day, everything starts to build back to normal...but not only do you get to enjoy your legs returning to normal; you also get to enjoy added millimeters of height, each day! Today was a good day as I mentioned.
A big part of today's drama was.... Would I be able to take steps in a walker? I know that I need to take steps in order for the bone to grow back strong and fast... I know I need to take steps in order for me to return to normal walking gait and to have strong legs to match my new height... Week 3 is just around the corner; and I will be entering into my 1st new inch of height soon and I'll need to be pushing hard at my PT in order to get that 2nd and 3rd inch...so the pressure was on today. I wanted to walk so badly, but my left leg had bothered me so badly the first 10 days. Each day, I trained my left leg...I stretched it... I did muscle exercises and I remained positive. I told my self.... I CAN.... I WILL.... and I MUST.... My PT came into my apartment and we did some warm ups in my wheelchair and then he asks me. Are you ready? Let's walk. I said... "Let's go". He got the walker and instructed me on the proper way to deploy into the walker. I put both arms on my wheelchair handles, bent forward with my momentum facing the walker, and placed my right hand on the walker... I then postured and placed my left hand on the walker and I stood up straight. With some instruction, I begin to walk step-over-step....20 steps in all to my rest room and back. Then I walked to my living room and back twice. I took a total of nearly 50 steps. They were natural steps. Each step had a smooth knee bend and I was able to 100% weight bare on my shiny new Stryde nails while supporting my balance and weaker left leg with my walker. I did it! I walked and now I'm ready to take major steps...just in time for week 3. I was so proud to see myself come so far. It will take a week or few before I can shed the walker, but today was a major step forward!
As far as the rest of the day goes; I was able to work well remotely, ate normally, and listened to good music. My pain was lower than it had been in days and I have so much gratitude for this day and the opportunity to "Stryde".
Other thoughts
-I asked Dr. M for a suggestion on alternative pain medication for Norco and we both arrived at Tramadal. I'll start that up tomorrow and I think it may work pretty well. "MY Evolution", another LL'er on here said that the combination of Tramadal and Tylenol was a great help to him. I'm going to try that out!
-I have lengthened for 5 days straight now and, each time I lengthen, although I can't feel any stretching, while the ERC is running...i feel a dull pain immediately after. Does that mean it's working? lol.
-I'm looking forward to walking again. I will wait until my Pro Home PT session happens on Friday.
Have a great day guys. I'll keep you posted as time wears on and feel free to ask me any questions you might have.
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