Quote from: tiggy on May 29, 2019, 06:46:15 PMHey Alchemist,
1. Yes sleep is still the same
2. I am able to sit down and was always able to. On a chair the longest I've sat was probably around 10 min when doing PT. I'm sure I can sit much longer, I just never tried because I feel more comfortable sitting on my bed with legs extended. These days my butt is feeling more discomfort the longer I sit or even when laying down. This contributes to my taking longer to find a comfortable position to fall asleep in. I hope it starts getting better soon because frankly it's quite annoying!
3. I certainly do not need an aide 24/7. Mostly I just need help with meal preparation and for someone to bring the plates to me. I'm using a walker so there is no way for me to do any of that on my own since those require at least one of your hands to be free. Everything else I do on my own.
Hi Buddy, when the time comes - these helped me a ton.
Walker Trays - https://www.amazon.com/Miles-Kimball-4332479062-EasyComforts-Walker/dp/B00BJAC8R8/ref=sr_1_1_sspa?keywords=walker+tray&qid=1559162284&s=gateway&sr=8-1-spons&psc=1
Walker Bags - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_4?keywords=walker+bag&qid=1559162337&s=gateway&sr=8-4
Also, for the walker, concentrate on standing as straight up as possible. You may be doing this already which is golden. I had a tendency to fold over a bit and that again shortens the hip flexors. Stand straight as an arrow on the walker if you can.
Glad to hear things are going pretty darn good.
All The Best,
IFS
Rozbruch- Internal Femurs with Stryde
Quote from: InFullStryde on May 29, 2019, 08:40:14 PMHi Buddy, when the time comes - these helped me a ton.
Walker Trays - https://www.amazon.com/Miles-Kimball-4332479062-EasyComforts-Walker/dp/B00BJAC8R8/ref=sr_1_1_sspa?keywords=walker+tray&qid=1559162284&s=gateway&sr=8-1-spons&psc=1
Walker Bags - https://www.amazon.com/Walker-Bag-Vive-Accessory-Attachment/dp/B01AOBN78Q/ref=sr_1_4?keywords=walker+bag&qid=1559162337&s=gateway&sr=8-4
Also, for the walker, concentrate on standing as straight up as possible. You may be doing this already which is golden. I had a tendency to fold over a bit and that again shortens the hip flexors. Stand straight as an arrow on the walker if you can.
Glad to hear things are going pretty darn good.
All The Best,
IFS
Hey IFS,
It's as if you are reading my mind man! Just today as I was walking it suddenly hit me that I was hunching over while sticking my butt out. While this would speed up my walk I realized I must stand up straight. Doing so was actually very difficult. I first stood up straight for about 10 min to feel the stretch. Doing that made me realize that I was actually getting tight in that region. Walking up straight is also more difficult and I move much slower but I know that this is the correct way to do this. So thank you so much for looking out for me brother. I wish I could return the favor. Also thank you for the links above.
When were you able to be completely self sufficient in every respect?
Quote from: tiggy on May 29, 2019, 09:15:18 PMHey IFS,
It's as if you are reading my mind man! Just today as I was walking it suddenly hit me that I was hunching over while sticking my butt out. While this would speed up my walk I realized I must stand up straight. Doing so was actually very difficult. I first stood up straight for about 10 min to feel the stretch. Doing that made me realize that I was actually getting tight in that region. Walking up straight is also more difficult and I move much slower but I know that this is the correct way to do this. So thank you so much for looking out for me brother. I wish I could return the favor. Also thank you for the links above.
When were you able to be completely self sufficient in every respect?
Glad to assist, man. I would say toward the end of week 3 or 4, I was pretty much independent (in my apartment) meaning that I could go use the restroom, shower (when I really wanted to), make my self some food (Mainly microwavable) and just roam around as I needed to. I'll be honest, I still would give my self a break sometimes and wheelchair my self to get some food. I didn't feel like struggling and going, Ouch, bad word, bad word, ouch, lol, just because I wanted to make a sandwich. With all this in mind, week 3ish, 4ish..things really start to come under control for you, while inside the home. I still needed to be assisted to drive places and I was never really comfortable doing much alone throughout the lengthening process as it related to going outside to places. That is just me, but I relished the support of family. You're on about day 15, so around day 23..24...28ish..etc...things start to take shape. You're on your way!
Quote from: InFullStryde on May 29, 2019, 09:53:04 PMGlad to assist, man. I would say toward the end of week 3 or 4, I was pretty much independent (in my apartment) meaning that I could go use the restroom, shower (when I really wanted to), make my self some food (Mainly microwavable) and just roam around as I needed to. I'll be honest, I still would give my self a break sometimes and wheelchair my self to get some food. I didn't feel like struggling and going, Ouch, bad word, bad word, ouch, lol, just because I wanted to make a sandwich. With all this in mind, week 3ish, 4ish..things really start to come under control for you, while inside the home. I still needed to be assisted to drive places and I was never really comfortable doing much alone throughout the lengthening process as it related to going outside to places. That is just me, but I relished the support of family. You're on about day 15, so around day 23..24...28ish..etc...things start to take shape. You're on your way!
Sounds good, and when was it that you could get around without a walker?
Quote from: tiggy on May 29, 2019, 10:48:03 PMSounds good, and when was it that you could get around without a walker?
Hmm, for me, it was mid to late month 2. I honestly liked using the walker way more than the crutches. The walker allowed me use it as a stretching apparatus. Additionally, I could open doors, and use my hands with the walker. I resisted moving to crutches but eventually I did want to progress to the next stage... Walker --> Crutches --> Cane --> Unassisted.
I would say around week 6-8, I moved to crutches.
Quote from: InFullStryde on May 30, 2019, 02:53:09 AMHmm, for me, it was mid to late month 2. I honestly liked using the walker way more than the crutches. The walker allowed me use it as a stretching apparatus. Additionally, I could open doors, and use my hands with the walker. I resisted moving to crutches but eventually I did want to progress to the next stage... Walker --> Crutches --> Cane --> Unassisted.
I would say around week 6-8, I moved to crutches.
Well I too hate the crutches and feel much more secure with a walker. I wonder if I can just transition from walker to cane without getting on crutches. This would be a good question to ask my dr during next visit. Today I haven't taken any oxy as dr R urged me to get off them due to the risk for addiction. I won't be taking any tonight before bed just to see how I manage during the night. But the pain in my left leg at the incision site is quite pronounced right now. I just took Tylenol so hopefully that does the trick but I was wondering when that osteotomy site pain went away or significantly decreased for you.
Quote from: tiggy on May 30, 2019, 03:17:43 AMWell I too hate the crutches and feel much more secure with a walker. I wonder if I can just transition from walker to cane without getting on crutches. This would be a good question to ask my dr during next visit. Today I haven't taken any oxy as dr R urged me to get off them due to the risk for addiction. I won't be taking any tonight before bed just to see how I manage during the night. But the pain in my left leg at the incision site is quite pronounced right now. I just took Tylenol so hopefully that does the trick but I was wondering when that osteotomy site pain went away or significantly decreased for you.
It's interesting how I find that most CLL patients, including my self, hurt more with the left leg, post-surgery. You could actually go from walker to cane if you prefer. Here is one thing I used to do... I would use the Walker to function my everyday life around the apartment such as, use the restroom, get food, go into the shower, work out, etc. The walker allowed me to do much more on the functional side while my legs were still hurting too much to get around safely without assistance. When my left leg was ready and not hurting so much, I would then leverage the walker to get me to my "crutches" which were usually resting somewhere in my living room; which is large and had lots of room to walk. I would abandon my walker at this moment and then use my crutches to exercise and strengthen my legs. The crutches will force you to put more weight on your legs and it also helps you simulate a more normal walking gait, helps you in standing more straight up and down, etc. I would get up and "crutch-walk" 1 time every 40 minutes or so for at least 15 - 20 minutes. This helped me strengthen my legs. You will find that you're able to take unassisted steps very soon here, meaning, no walker, no crutches, etc; but just keep in mind that 2000 crutches steps are WAY more effective than taking 100 unassisted steps and getting too tired and/or risking injury. I can almost promise you that by the time you're done with lengthening that within a couple of weeks you will be walking and starting to shed all assistive devices...so you should feel no rush to graduate to crutches or cane. I know that its a common theme in the forum to try to rush to walking as quickly as possible; but the "robot duck" style of the walk has little benefit to us especially while we are stretching ourselves 1...2...goodness 3 inches! Ha ha. Let me know if you have any questions and you're doing great tiggy. You're right in line with where you need to be and actually sound like you're ahead of the game. Dr. R will likely confirm that again after your next appointment. I'll be here to help; just ping me as needed.
P.S. The pain in left leg (that nasty pain in the side of the leg) started to "chill-out" around week 5-6 for me. It was a lingering thing throughout my entire LL experience. It is completely gone now thankfully. It will go away. Another piece of advise... do not feel that you need to "hurt" your left leg in order to get through the pain. Try to avoid movements that are making you feel to much pain in the left leg. It's just naggy surgery pain. Take it slow.. be sure to put as much weight on the left as possible (even 100% if you can tolerate it).....and take careful steps. CLL in the first 4 week is NOT a "No pain, No Gain" proposition. If you ignite too much pain on the inflamamation areas it will preven you from performing the stretces you need with PT. Nothing is more important than the stretching at this phase.
Remember...
Quads / Hip flexors cause the duck ass (APT)
Hamstrings cause the knee straightening issue
One last thing, ha ha..go a bit further (just a bit) than you are comfortable with during stretching. You'll know why you did when you're all done with lengthening.
I'm here to help! reach out as needed
All the best,
IFS
Quote from: InFullStryde on May 30, 2019, 04:24:55 PMIt's interesting how I find that most CLL patients, including my self, hurt more with the left leg, post-surgery. You could actually go from walker to cane if you prefer. Here is one thing I used to do... I would use the Walker to function my everyday life around the apartment such as, use the restroom, get food, go into the shower, work out, etc. The walker allowed me to do much more on the functional side while my legs were still hurting too much to get around safely without assistance. When my left leg was ready and not hurting so much, I would then leverage the walker to get me to my "crutches" which were usually resting somewhere in my living room; which is large and had lots of room to walk. I would abandon my walker at this moment and then use my crutches to exercise and strengthen my legs. The crutches will force you to put more weight on your legs and it also helps you simulate a more normal walking gait, helps you in standing more straight up and down, etc. I would get up and "crutch-walk" 1 time every 40 minutes or so for at least 15 - 20 minutes. This helped me strengthen my legs. You will find that you're able to take unassisted steps very soon here, meaning, no walker, no crutches, etc; but just keep in mind that 2000 crutches steps are WAY more effective than taking 100 unassisted steps and getting too tired and/or risking injury. I can almost promise you that by the time you're done with lengthening that within a couple of weeks you will be walking and starting to shed all assistive devices...so you should feel no rush to graduate to crutches or cane. I know that its a common theme in the forum to try to rush to walking as quickly as possible; but the "robot duck" style of the walk has little benefit to us especially while we are stretching ourselves 1...2...goodness 3 inches! Ha ha. Let me know if you have any questions and you're doing great tiggy. You're right in line with where you need to be and actually sound like you're ahead of the game. Dr. R will likely confirm that again after your next appointment. I'll be here to help; just ping me as needed.
P.S. The pain in left leg (that nasty pain in the side of the leg) started to "chill-out" around week 5-6 for me. It was a lingering thing throughout my entire LL experience. It is completely gone now thankfully. It will go away. Another piece of advise... do not feel that you need to "hurt" your left leg in order to get through the pain. Try to avoid movements that are making you feel to much pain in the left leg. It's just naggy surgery pain. Take it slow.. be sure to put as much weight on the left as possible (even 100% if you can tolerate it).....and take careful steps. CLL in the first 4 week is NOT a "No pain, No Gain" proposition. If you ignite too much pain on the inflamamation areas it will preven you from performing the stretces you need with PT. Nothing is more important than the stretching at this phase.
Remember...
Quads / Hip flexors cause the duck ass (APT)
Hamstrings cause the knee straightening issue
One last thing, ha ha..go a bit further (just a bit) than you are comfortable with during stretching. You'll know why you did when you're all done with lengthening.
I'm here to help! reach out as needed
All the best,
IFS
Excellent reply IFS, as usual.
I can easily put full weight on my legs using the walker but what stops me is the paranoia that I will break the nails. I know the nails hold 200lb and I weigh 145 and technically there shouldn't be issues but again it's possible that the nail is defective or something of that nature and that's why I try to be extremely careful. Your suggestion about not hurting the legs too much is golden, I am also of the opinion that creatingr more unnecessary pain on the legs doesn't help the process along. This entire process is a delicate dance!
So far I'm working to fix the slight duck ass I had developed and so far I think I'm doing ok by keeping my posture straight as I walk. I don't have any knee bending issues just yet but I'm sure that's in store for me, after all I'm only hitting 15mm today and I'm still 10 days away from a full inch.
Anyway I'll continue on the walker for another week or so and see how that goes. Thanks again for your helpful and encouraging replies brother, it means the world!
Quote from: tiggy on May 30, 2019, 05:57:12 PMExcellent reply IFS, as usual.
I can easily put full weight on my legs using the walker but what stops me is the paranoia that I will break the nails. I know the nails hold 200lb and I weigh 145 and technically there shouldn't be issues but again it's possible that the nail is defective or something of that nature and that's why I try to be extremely careful. Your suggestion about not hurting the legs too much is golden, I am also of the opinion that creatingr more unnecessary pain on the legs doesn't help the process along. This entire process is a delicate dance!
So far I'm working to fix the slight duck ass I had developed and so far I think I'm doing ok by keeping my posture straight as I walk. I don't have any knee bending issues just yet but I'm sure that's in store for me, after all I'm only hitting 15mm today and I'm still 10 days away from a full inch.
Anyway I'll continue on the walker for another week or so and see how that goes. Thanks again for your helpful and encouraging replies brother, it means the world!
Glad to assist. Regarding Duck Ass; in addition to the quad and hip stretches, also see about incorporating some glute/lower ab exercises if not already. Whatever you can tolerate at this stage, of course. I know it can be painful.
I understand the paranoia. Rest assured, however; that the nails will not break. You're safe and secured on those metal rods.
Talk soon!
IFS
Can you walk up/down the stairs with the Stryde in your femurs? How soon, a week or two or within a month?
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