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Author Topic: New Stryde Diary 2018 - with Dr. Paley  (Read 8976 times)

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superusercj1

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New Stryde Diary 2018 - with Dr. Paley
« on: September 30, 2018, 05:26:31 PM »

Hi everyone,

Been a lurker since 2015 and now in the position to move forward with Stryde.  The forum has been extremely helpful and I hope that my Diary will help others as much as the past forum diaries have helped me.  I'm a very private person so I won't share much personal info (xrays, etc).

I will be having my femurs lengthened and will keep a very logical diary, one that I hope will be structured in a way that will help future LL'ers with their Journey :)

Stats: 5'3, looking to get to 5'6.  150lbs.

Pre-Procedure:
- Dr. Paley does not believe in stretching, however reading the forums, it just makes sense that if you're more flexible, you're going to have an easier time and higher success rate to reach your goal
- I bought a stretching cable, which can be found on amazon https://www.amazon.com/gp/product/B00065X222/  - it comes with a stretching guide and have been using this to extensively stretch my hamstrings, quadriceps, gluteus, etc to prepare for surgery
- I've been working out a lot, mainly weight lifting, no cardio
- overall I'm in good shape, I don't have a six pack, but am visibly fit.  In terms of flexibility, I am moderately flexible, I can touch my knuckles on the ground when I bend forward.  I hope to be able to palm my hands on the floor by the time I have surgery.

Plan During recovery:
- aggressive stretching on my own with the stretching cable above, I think this will be a huge advantage barring any unexpected pain.  I think that a lot of people didn't do this - or at least they didn't mention it,  and if it works, this may be very helpful for future LL'ers who are independent and wants an effective way to stretch on their own, will let you guys know how this works out for me.  I plan to stretch for 30 mins every 3 hours, every day.  I am very disciplined.  I will use my apple alarm to go off every 3 hours to remind me.
- In between stretching I plan to work or watch TV (a lot of it)
- I also have a lot of protein supplements.  Stretching destroys the muscle fibers.  I think there's a lot of focus on bone growth, etc, which is of course important, but I think we forget that the muscles are constantly having micro tears during stretching and needs nutrients to repair.  For this reason, I plan to follow a good high protein diet as well, to give my muscles maximum ability to recover during the intense stretching (this is in addition to what I'll be taking for the bones, whatever Dr. Paley gives me)
- daily pool therapy, I want to be on my feet as much as possible with stryde, early on, I will use a lot of pool therapy if pain control is good.  Then get off the pool asap so that my full weight can help maintain muscle mass
- take Tylenol daily in addition to Oxycodone.  NSAIDs have been shown to effect bone growth and also some think it inhibits healing, Tylenol on the other hand has not to the best of my knowledge

That's it for now.  Will keep you guys posted.  Please leave any comments or suggestions on my above plan.

Thanks everyone!
CJ

Current Mood: 90% excited, 10% scared, as in "wtf I am actually going to do this?"



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cool

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #1 on: September 30, 2018, 06:00:11 PM »

Good luck with your journey!

However without any proof, it will be hard for anyone to completely trust your diary. But whatever you're comfortable with :)
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Pilor

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #2 on: September 30, 2018, 06:20:40 PM »

Hi what is your age, and when are you going to have your surgery?

Best of luck
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #3 on: September 30, 2018, 08:32:57 PM »

Hi Pilor,

Late 30s, with Paley.

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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #4 on: September 30, 2018, 08:34:44 PM »

Thanks for the response @cool!

Maybe I'll post evidence later if I feel more comfortable.  Don't really mind if there are some out there who doesn't believe me, just hope that my journey can be helpful to those that do!
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Leggs

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #5 on: September 30, 2018, 10:32:39 PM »

superusercj1-

Videos where you block out your face on youtube are super easy to make, youtube provides the tools right on their website, nothing to download or figure out how to use. Posting a youtube video on this forum is as simple as copy and pasting the youtube link, that's it.

This method is completely anonymous, takes much less time than writing.

What is your surgery date?
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MyEvolution

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #6 on: October 07, 2018, 03:05:07 AM »

Best of luck dude!! I had my surgery on sep25th stryde, you got this!!
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #7 on: October 20, 2018, 12:21:29 AM »

Thanks everyone - updates soon!
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #8 on: October 26, 2018, 10:31:14 PM »

So here we go! 8)

I had my consultation with Dr. Paley two months prior and although he said stretching wasn’t important, I did it anyways as it made perfect sense to me that it could only help and not hurt.

2 months prior to surgery, the furthest I could stretch my hamstrings when standing straight and hanging forward, was my fingers being 4 inches off the ground.  Right before surgery, I was able to touch my knuckles to the ground - so stretching does improve flexibility! Who would of known ;)

I also bought stretching ropes to help my leg stretch in certain positions that requires two people. My goal was to also diet but I failed on that ;) so overall my stats didn’t change much - 5’3, 150lbs, “fit build” but no abs

Day of surgery, Post Op Day 0:
Mood: 80% excited 10% skeptical 10% nervous.

The morning of the surgery, you come in, you bring an overnight bag that they keep in a security locker for you.  They pop an IV into you, and you just lay there and wait to meet the anesthesiologist.  I opt’d for the spinal block vs. epidural because I didn’t want a Foley.

Surgery:
POD 0:
Everyones diaries were absolutely right.  The moment the anesthesiologist comes and pushes the Versed/relaxing medication, next thing you know it - you’re waking up in recovery.  When I first woke up, I had 0/10 pain, as a spinal block was used.  As the spinal block wore off the pain started but it was manageable with toradol (an IV NSAID) and Tylenol - but as the spinal block wore off more, they had to hit me with IV morphine.  When I don’t move my legs the pain is about 1/10, when I do it shoots to about 5/10 with pain medications on board.

I had a tiny bit of nausea post op but short lived, never vomited.  I was able to eat my entire hospital dinner that evening.  Bowel movement wise, I had one the morning of surgery so haven’t needed to go yet. 

The nurses, all staff, PAs have been incredible.  Paley’s nurse practitioner came POD 0 shortly after my surgery and said that I would start PT tomorrow.

POD 1 4am - pain has begun to creep up.  I’m getting about 2-4 hours of sleep before being awakened by an achy pain.  The incision sites themselves don’t hurt, it feels more like an internal annoying ache that runs between a 3/10 to 10/10 pain and fluctuates.  The pain does get better with the combination of Toradol, Morphine, Oxycodone, Tylenol. 

Of note both, of my thighs are super swollen and I suspect that the soft tissue swelling is contributing to a lot of discomfort (of course also because my femurs were broken).  Spirits are high, happy I did it,
No regrets, no concerns thus far.  Care has been excellent.  Just need to get over this pain hump. Separate note, with pain meds, my brain isn’t groggy at all, I can perfectly send email and work if I wanted to, but choosing to take it easy the next 1-2 days.  My biggest concern right now is when eventually I need to have a bowel movement, not sure if I will be able to adequately move my legs without a lot of pain. 

POD 1: This morning, starting to use less pain meds, pain hovers around 2/10, goes to 4/10 with movement with Toradol and Tylenol on board around the clock - which means I am having them give it to me regardless if I’m in bad pain or not, this is key so that the pain doesn’t get too out of control.

It’s very weak for me to bend my knees so what I’m doing is using my feet to push off one another, once my thigh is raised high enough doing this, I then use my hands to pull the rest of my legs to my chest - to get my knees to bend.  My thighs are still super swollen and tight, I suspect that my pain will go down drastically as this swelling goes down, which will probably take 1-2 days

Random Advice: Make sure you get long charging cables for your laptop and phone, I have the standard length so can’t use my phone while it’s charging, I just hangs above my head on the bed while plugged in.

POD 1: PT came by today. Man was it hard to move my legs. After a few repetitions of some PT guided movements, my legs started moving again, but definitely significantly decreased range of motion. The PT said that if your muscles are swollen from surgery, your muscle essentially shuts off and atrophy.  Anyways, I was able to ambulate on a walker and fully weight bear.  But I was only able to take small steps because of the discomfort and lack of range of motion. 

Advice: you NEED upper body strength. I’m fairly strong and still found it difficult because of the pain. Can’t imagine someone trying without upper body strength!!  The PT mentioned that a lot of lengtheners actually faints on their first day of PT.

POD2: 3am - woke up super hungry. Nurse brought me crackers and peanut butter.  My body is probably needing a lot of caloric intake to heal the wounds, the 3 meals a day they give you is not enough calories.  I wonder if the hospital allows us to bring in our own snacks, if so, next time when I do my Tibias I’m going to have a snack basket with protein bars for sure.   Other than this, all night I’ve been working on my range of motion. Muscles are super super weak still but I use my hands to get my legs to bend up to my chest and then help my knees bend and I would leave it there for 5 mins, then I’d straighten them out and repeat.  At first it was hard but It’s getting easier and easier.

POD 2: I had a bowel movement !! No issues at all, no constipation.  Also, the leg exercises must have helped! As I was able to use the walker on my own and made it to the bathroom and back without assistant - but taking really small steps.  PT today also went 100% better than yesterday. I was able to walk around the nursing station with no issues.  Theres a bunch of exercises that they teach you, definitely follow them.  I’m doing them in bed every hour, which causes muscle soreness but it’s a good “feeling” like after going to the gym. Today I only had to take Toradol for pain.  I still have to use my hands to help bend my legs into the right positions but I’m starting to feel my muscle strength come back as every time I do it, I try to use my own legs to do it without my hand’s help.

POD 3: big time improvements! My legs are starting to regain strength and I can see it with my bed exercises (leg raises against gravity etc) are getting easier and easier.  Don’t get me wrong, muscles are still really tight but the progress has been about 30% improvement everyday compared to the prior day.  I can now fully get out of bed and ambulate with the walker, use the rest room on my own, etc. my biggest advice through this whole ordeal is really do all the bed exercises your PT teaches you.  You will get your muscle function back quick and fast.  I only use Tylenol for pain, no more toradol - I think again, this is a result of constantly forcing my legs to move with my hands  - even if it was only small movements to help it generate blood flow and healing, those small movements became big movements after awhile

POD 3: I was discharged today. It was a whirl wind of a day. The process of being discharged and being placed into a wheelchair , then transfer to car, then transfer back to wheelchair from car was brutal.  I was in significant amount of pain by the time I got to the hotel.  For the first time in the last few days I had to take a narcotic - oxycodone.  For the first time , because of all the discomfort and how out of breath I was, I was starting to feel discouraged.  And went to take a nap.

Then something amazing happened. When I woke up, my legs were about 50% better than when I woke up this morning, more strength and more range of motion.  And the reason was because I was avoiding pain medication.  The soreness in my legs didn’t really bother me mentally, but what happens is the soreness intensifies when you walk, so it forces your body to use more upper body strength with the walker.  When I took the pain meds, I was able to rely more on my legs.

My mobility is much much better.  I’ve recorded a video of which I’ll post soon. Muscles are still 20% tight but that’s it!! Something else I think contributed was that I felt pretty dizzy and miserable being discharged mainly because the hospital does not give you nearly enough food so I was starving the entire time. When I got to the hotel, I ordered a chicken parmigiana sandwich and also drank a soylent before going to sleep. This was easily 1500 calories and I think that helped a bunch too.  Can’t wait for what tomorrow brings !  Note that I have not started lengthening yet - that starts 7 days from surgery.  Also, everyone I’ve talked to (PT and nurses) said that I progressed unusually fast.  Again I attribute this to all the bed exercises - refusing to let pain get in the way, using my hands to move my
legs so my legs wouldn’t freeze up, pushing myself and forcing my muscles to move throughout the night. 

Here are the bed exercises that was taught to me that I did probably every 1-2 hours while in the hospital (PT said to only do it 2-3 times a day!).

1. heel toe flex - you put your toes up and then down, and you pump 10 times
2. With Legs Straight out, extend knee so that it drops into bed, this causes your quadriceps to contract and stimulate blood flow for healing (essentially trying to touch the back of your knee to your bed with your leg straight laying on your back)
3. Using my hands to grab my thighs and pulling my legs towards me (legs could barely move cuz it was swollen) then when thigh was near me, I’d grab my lower leg and squeeze it to my thigh, to stretch my quads - this hurt like crazy but the more I did it the more loose I got
4. Leg raises going up and down, with legs straight (I couldn’t do this until pod 2), before then it was pretty painful and too weak
5. I also did quad pumps, pulled my thigh close to my body then as my Lower leg was hanging, I’d move my lower leg up and down
6. And last once you can do all the above, you then do a combination , laying flat on your bed, straight leg up and then bend your quadriceps to bring it to you, and straighten it again without touching the bed.  For #6 I was able to do this towards the end of pod 2, but it was super weak and my leg would drop. Today I can do it without all those issues but my flexibility still has issues with the quad flex , tomorrow we will see how it goes

I also showered today and had a big scare, got a little over confident and almost slipped , was able to grab a rail in time.  My muscles still locks up even tho I’m able to stand still without assistant. The big thing that sucks was putting on my underwear and shorts. I would grab them off the table, use my mouth to hold it, sit down , then put one foot in at a time and then repeat for the shorts.  Problem number 2 is that my shorts are too tight ! They actually fit me nicely but that’s not what you want. You want those super loose baggy ones, and for convenience, ditch the under wear and go commando.  It was super hard to put them on as the ability to raise and lower your leg is very weak this far out.  Having said this, the shower felt amazing !

POD 4: had PT yesterday and it hurt like crazy.  Right afterwards felt good and I was able to walk better for about an hour.  Woke up this morning and my entire leg is sore 🤦🏻‍♂️  unfortunately the rapid rate of getting better seems to be tapering off - my legs feel only slightly more mobile compared to yesterday. Hopefully it’s just a function of PT and inflammation from all the movements. Diet wise and mental wise I feel so so much better since being discharged and able to eat as much food as I want.  There was most def a caloric deficit while I was in hospital.  From here on out it seems pretty straight forward, will do another no update in the next couple weeks.

POD 5: woke up today sore. For the first time felt mentally weak.  Entire body is sore and legs are painful likely from PT and maybe pushing myself too hard. 

POD 5 11pm: holy crap, popped an oxycodone in and felt amazing - should have realized this already from when I left the hospital.  From now on I will be taking my pain meds to get my sleep, and also to take away the pain so I can do my stretches and exercise.  Side note: PT session today was great -  my aide is now helping me with stretches and the PT were also helpful and having her help so she can learn. My goal is to stretch 4 times a day .

POD 7 - started lengthening, nothing special, big machine you place over your leg, hit a button and it goes.  You don’t really feel it.

So here’s my basic summary of the journey thus far up to this point, POD 8:
- If you are considering this surgery, do it here, the care is phenomenal and you feel REALLY SAFE and everyone knows what they’re doing
- If I had to do this all over again, here are the things I’d do:
    - Buy tons of protein bars and put it in your overnight bag for hospital stay, you will be starving and this will save you big time
    - Stretch ropes that I recommended above has been amazing, def buy them
    - Also buy a stretching table (about $170 off Amazon) so you can do your home stretches, I ordered one after day one of PT, wished I did it earlier
    - Order a foam roller so you can place underneath your legs for leg raises (you’ll see they do the in PT)
    - Make sure your hotel room is handicap accessible
    - Stock your hotel room with: Tons of water bottles, meal replacement drinks (I am using Soylent), Protein Shakes, Cereal, and vitamins - I am taking Vitamin D 5000 IU, Magnesium, Calcium chewables, Iron (only for first two weeks to help regain my blood loss
- Hire an AIDE, you WILL need one.  You’ll need one 24 hours a day during your first 3-5 days after being discharged as you’re still too weak to do a lot of things.  Afterwards its more of a convenience thing.  If you are reading this and have your surgery in a couple months hit me up and I can give you my AIDE’s info and you can work out something with her.  I’m paying her $20/hr 8 hrs a day right now.
- This entire process will mentally test you.  All I can say is, KUDOS to those who didn’t have stryde, I could not imagine being able to do this wheelchair bound for 2-3 months.

More updates in the next couple weeks.
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CaptainAmerica

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #9 on: October 26, 2018, 10:42:34 PM »

5/10 pain? Sounds like you're doing well, especially after the first 2 weeks it seems with Stryde, that should be the worst of it.

Just curious, have you ever stumbled off the couch or just walked past a table and clumsily, at full force, accidentally bang your leg on the table? So like the pain is so excruciating for a few moments you nearly fall over? What would you describe that pain level as?
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #10 on: October 26, 2018, 10:58:32 PM »

lmao that pain would be a 12/10
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #11 on: October 31, 2018, 02:43:57 AM »

POD 9: spoke too soon. Woke up this morning and there’s an intense painful ache on the lateral portion of my thighs with left leg hurting more than right. I would call it an 8/10 ache.  Took an oxycodone and waiting for it to go down.  Also, it looks like all the internal bleeding is now surfacing.  My legs post procedure had some bruising but not a lot, today the entire lateral side of both legs are bruised and distinctly purple.  Also the thighs are more swollen today, when I push down on them it creates divots in my skin.  I’m assuming all this is normal because I actually can ambulate with walker fine.  Hopefully this is the peak of the swelling and it only goes down from here.  Otherwise appetite is good, eating 2000-2500 calories a day (my normal is 1500-2000) ,  not because I’m forcing myself to, but because I’m always hungry right now.  I’m also supplementing my food with the vitamins as described previously.

POS 10: strength is doing much better and I can walk somewhat normal without my walker.  The issue is I have weakness in my hips and that’s also where the pain is coming from.  When I lay on my side to Do lateral leg raises it hurts like crazy and that muscle is really weak.  My PT told
Me that once this muscle strengthens and loosens back up, it will normalize my gait. I am going to start working hard on this muscle.  The PT also told me that I am
Going to either be in crutches or transition to cane next week .

POD 11: there’s a constant 8/10 pain that’s on the lateral side of my leg and it’s brutal, super achy. My right legs has no pain. I’m using all my pain meds at my disposal.  I’m not sure if this is just my muscle being overworked, or I sprained something stretching. Have my follow up appointment coming up soon and will ask Dr. Paley then. Also I tried going to the gym today and it was a freaking disaster. I mainly did machines. Did chest, back, and arms.  I could only lift 60% of my pre surgical max, but what’s worse is I kept getting thirsty and all of a sudden I had full body sweat and almost fainted.  Guess my body wasn’t ready yet and all the energy is still going into my legs to recover.  The last two days has def been my worse pain days since surgery.

POD 12: holy crap pain pain pain. I think the last few days a lot of muscles are starting to be more active and causes an intense ache.  The worse are my ITBs and piriformis.  Having a lot of problems sleeping at night and I’m on oxycodone almost very 4 hours.. hopefully this past soon. My quads and hamstrings has zero pain, my “femur” pain if you will is zero as well, pain is more in my butt , hip muscles, ITB, and piriformis area.

POD 13: the intense pain is still present. The pain is only on my left leg, my right leg has zero pain. The pain is no longer located on the side of my leg or behind my leg, it’s now located in my inner thigh.  I can feel a muscle inside my leg that’s super tight and possibly in spasm - likely that’s the cause of the pain. I’m assuming that all this is just muscle pain and hopefully it’ll pass soon. As of right now I am taking 1000mg of tylenol as well as the prescribed oxycodone. This pain is worse than the post surgical pain. I just hope it’s not something more of an issue as my right leg feels completely normal.  I had my aide buy a bunch of those icy hot stickers along with cold packs, and this combo along with Tylenol and oxycodone has helped me a lot. I can’t wait for my left leg to feel like my right, this pain causes me to lose sleep

Summary:
- don’t forget to buy big baggy gym shorts, easier to put on when you have deceased mobility and soreness
- Although I’m now working from home I really only get in 3-4 hours a day max. Between PT (1.5 hours round trip), your own stretches 4x a day (1.5 hours) , using the lengthening machine, and just generally taking more time to do everything because you’re limited because of inability to walk.  So if you plan to work 9-5pm it’s really hard to given everything else you need to do for yourself.
- Wound care:  I’ve read all over the internet and consistently there’s one best way to prevent scars.  During the first two weeks you must keep the wound moist, which allows it to heal faster and better.  You do this by applying petroleum jelly to your wound.  Then cover it with bandaids.  Make sure you shower and clean the area with soap and water at least once every 1-2 days to prevent infection as covering the wound with a moist jelly will put it at risk for Infection .  Once initial healing is done, apply mederma anti scar cream to it to slow/prevent scar tissue formation.
- EASILY the best item that I’ve bought so far was a foldable laptop table stand for your bed, I eat on it, and also work from, it, you can lay down flag and tilt it, and place your MacBook on it.  I’m able to work super comfortably with this table.  Post op wise, when sitting in a chair, it irritates your leg, so this table allows me to lay down and prop my leg up on two pillows
- When you’re in the hospital, ask the nurse to put you on the “Polaris” cooler machine, it’s two cooling pads that wraps around your leg.  This will help reduce swelling,  you can also take it home.  It’s basically a machine that pumps ice water into the pads (you replace the ice water every 4 Hours) — really takes the pain away.  I’ve had to use it a few times since I got home.
- Buy ice packs and those icy hot sticker pads, super helpful for random muscle pain !
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cool

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #12 on: October 31, 2018, 04:28:09 AM »

Sounds harsh. Are you doing this by yourself?
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totallyred

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #13 on: October 31, 2018, 01:08:51 PM »

Sorry to hear that. Did you do something which caused this pain...my idea what it could be from?
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cheekycabs

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #14 on: October 31, 2018, 09:47:01 PM »

What kind of PT are you doing? I'm having troubles with my knees, it's like their frozen for a good 5 minutes until I get them warmed up to move. I'm also having limited range of motion when walking and going up/down stairs as they only bend a bit. I'm about 1 month in as well.
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Full External Ilizarov Surgery in Azerbaijan: http://www.limblengtheningforum.com/index.php?topic=9418.0

6 months in, 90% consolidation. 5.5cm. Frame removal in May

superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #15 on: November 01, 2018, 02:05:55 AM »

POD 14: Pain is completely gone.  I spoke to a lot of the PTs and they all said it was from muscle strain.  Other than some minor aches now (feels like you walked disney land all day and sore at the end of the day), I literally have 0 pain.  I'm also on crutches now...what a whirlwind the last 4-5 days.  I was just reading MyEvolution's diary and he's absolutely right, where he said week 1 was easy, week 2 as an absolute nightmare.  I'm starting week 3 now so hopefully none of the pain comes back.  For PT, i'm doing the regular Paley institute PT and a lot of stretching on my own at home using a stretching strap.  Everyday I see significant improvement in ROM.  Right now my knee has full flexion, my Hamstrings can go 90 degrees when I lay flat, but my IT Bands are horrid - laying flat, I can't bring my legs together, I can feel it really tight on both sides, I can't lay flat and put one leg over the other at my ankles either.  Also my hip rotators are super stiff, I can't sit with my legs crossed or "indian style." I am going to focus on these two muscle groups the next 1-2 weeks and hopefully it starts to give. 

In terms of ambulation, I feel like I'm going to be able to walk without crutches in less than a week, when they switched me to crutches, it felt really natural and easy to walk.  I have a feeling I'll be on a cane soon.  Keep you guys posted.

PS I see a lot of stryde patients at PT, and their gait looks completely normal, saw a guy at about 7cm and he was on the treadmill warming up, if he didn't have a cane I wouldn't be able to tell he had any surgery done, that's how normal his gait looks.
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #16 on: November 01, 2018, 02:32:34 AM »

Sounds harsh. Are you doing this by yourself?

Hey - no way, during my first 5 days out the hospital I had an aide 24 hours a day, now I just have a daytime aide.  I would say, the first week or so out the hospital you 100% need someone to be with you 24 hours a day, your legs are simply too weak to do anything yourself.  After that, it’s more for convenience.
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cool

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #17 on: November 01, 2018, 05:03:46 AM »

Ah ok. But you're still alone (like no family/friends?)

And can you please post a walking video and some picture perhaps? Thanks!
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cheekycabs

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #18 on: November 01, 2018, 09:14:02 AM »

What does the normal Paley PT entail? I'm just curious because I'm doing limited stretching, toe touches in bed, and achilles stretches on stairs. I'm trying leg raises as well but not showing too much improvement...
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #19 on: November 06, 2018, 02:06:32 PM »

What does the normal Paley PT entail? I'm just curious because I'm doing limited stretching, toe touches in bed, and achilles stretches on stairs. I'm trying leg raises as well but not showing too much improvement...

first 10 mins: they put you in a NuStep machine where you just push down with your legs, almost like a recliner stair stepper.  This warms up your quadricep

Next 30 mins: you do a series of exercises to warm up your muscle. 
1) Straight leg raise , one at a time , 3 sets of 10 laying flag
2) While sitting with your back straight, you kick out , 3 sets of 10 for each leg
3) Leg slides, you lay flat and they put a sliding board underneath your leg, and you go from laying flat to bending your knees, 3 sets of 10, each leg

Last 20 mins spent stretching:
1) Thomas Stretch (you can look this up)
2) Hamstring Stretch
3) Knee mobility stretch (you lay flat on your stomach and they behind your knee from the back)

The above changes as you progress, they are now doing side leg raises on me and we no longer do the knee mobility stretch (i still have to do it at home but not enough time to do it in the 1 hour PT session, so they want to focus on things you need during that 1 hour)

Good luck!
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #20 on: November 06, 2018, 02:15:29 PM »

POD 19:  Virtually pain free, other than some nuisances of soreness at night, zero pain.  Muscles getting stronger everyday.  I've also officially retired my Aide, as I no longer need her.  Probably could have retired her a few days ago.  Anyways, if anyone of you guys are planning to come to WPB for this and you need someone good, you can give her a ring (she let me post her # here).  I made her into the ultimate aide, forced her to learn and watch all the stretches at the Paley institute to work with me at home, knows to get me breakfast before coming up stairs at Homewood suites, automatically checks and organizes all my PT schedule, has a car to take me on Saturdays for PT as well, does my laundry at her house, etc etc.  Also when I leave here in a couple of months, I'll be donating my Stretching Table, my Foam roller, and all equipment I bought for this process to her so that the next person can benefit from it.  Anyways, hope she helps someone else in the future!  You can negotiate your rate with her -> Denise, 857-249-4442

in terms of ability to ambulate right now, if I didn't sway so much from having weak hip muscles (which I'm working on with lateral side leg raises) , I'd be able to walk completely normal (I think).

One thing I wished I knew before this surgery is, the most important muscle that will be hardest to recover are your hip muscles and your gluteus.  Tons of squats and that one machine that females typically use where you sit and push your legs laterally, would have helped big time - I think.  These are the muscle groups that recovers last.  Almost everyone I've seen in their later stages (5cm+) still sway with their gait.  The PT guys says that almost everyone gets their quadriceps and hamstrings back pretty fast, it's these two muscle groups that comes last.
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Cyj

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #21 on: November 12, 2018, 02:48:06 PM »

Hi,may I know how much you pay for this STYDRE?
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hotty

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #22 on: November 12, 2018, 03:37:17 PM »

Nice diary. Do you think you can post a video of walking, physio etc?
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #23 on: November 15, 2018, 11:59:34 PM »

POD 28:  Haven't posted in awhile.  Things are going pretty cruise control at this rate.  I know a lot of you guys want videos, and I'll try to make one.  One of the things that happens when you do this is that you get so busy with stretching and doing work online, or other things that you begin to neglect the forum.  I try to keep in mind that I was once on the other side looking for as much info as possible, so for that reason I'll try my best to get a video up soon. 

Here's an overall recap of everything thus far and my recommendations to date for everyone...if I had to do everything over again and knowing what I know now:

Pre-Op:
Get your Vitamin D levels checked, make sure its optimized, if not take Vitamin D Supplements
Work out your Gluteal muscles like you've never done before as you're gonna lose that big time
Work out your Hip ABductors. that will help with the swaying as you get your strength back
Stretch your hamstring to the max
Stretch your quads
Do daily "thomas stretch" (look it up)
ITB - not so much as they'll release it if you're doing at Paley
Pre book your room, homewood suites has been a great experience, book early and make sure they know you want a handicap accessible room, the folding seat to shower is money
Arrive 1-2 days early and fill your room up with TONS of water, Buy tylenol PM + regular tylenol extra strength for pain, Bandaids, Mederma, Aquaphore for wound care, buy those Icy Hot Sticker pads for pain, buy heating pads, buy cold packs (the one you can put in freezer and then place on areas of pain, buy snacks
Buy loose fitting clothes that you can easily put on and off
Buy this bed table (my favorite purchase as I can do everything from my bed):https://www.amazon.com/gp/product/B07FR4Z5GW/ -- nothing is more comfortable than working from your bed
Get an aide for at least 1 week, 24/7 and then you can determine more or less (i placed my aide's info in one of my threads above if you want)
buy a stretching strap to help you stretch
Buy Vitamin D, Magnesium, and Calcium Supplements to take daily
Buy meal replacement drinks (i did soylent)
Buy protein supplements and a magic bullet or equivalent (your muscles will be weak so you want to help it grow back fast asap)
Bring swiming trunks, you wanna do pool therapy as your cleared . it'll help you big time

Post Procedure (in hospital):
pack tons of extra snacks and food in your backpack, ask nurse if you can order uber eats or whatever, you're gonna be starving if not nauseous
try to move your legs early, your legs will essentially be non functional so try to use your hands to pull your legs and contract your knee, etc.  Since i wasn't too flexible, i used to use my toe on one another to slowly slide my heels up on the bed until i can grab the back of my leg and bend my knees, i think this helped a lot with my current flexibility of my knee

Post procedure day 3-4 (in hotel)
take it easy, don't overdo your stretches and try to force yourself, or you gonna be in TONS of pain, do the exercises PT gives you but nothing more.  Then starting week 3, you can start pushing yourself a bit more.  Get in the hot tub and relax your muscles, the sooner the better, LA fitness has hot tubs, etc, I also stretch a lot in the hot tub, it relaxes your muscles big time and makes i easier to stretch

Many days you'll find yourself just laying around, just keep moving your legs and stretching, you'll get stronger and stronger.  After week 2 it's not so much your surgery pain it's more muscle strain pain and usage pain as the muscles are weak and starts to come back to "life" if you will, just fight through it, it'll get better daily

Today, POD 28 I can say other than muscle soreness from working out and intense stretching I don't have pain, I still do take tylenol and ibuprofen but it's more for discomfort that feels like you worked out all day.

If you plan to work remotely, you realistically won't be able to until week 3 realistically.  I started week 1 and 2 but i could only be maybe 20-30% efficient, week 3 is when you can go full mode again

In terms of ambulation, I get around with a cane now, at home i walk without a cane.  My swaying due to week hip abductors is getting less and less everyday.  Sometimes right after PT when they really stretch me out, I can walk for a good 20 mins and you won't notice any issues with me gait at all.  For long distances I still use crutches as my gluteals again are super weak and get sore when I have to walk far.

Overall, I will tell you this has been a great experience.  A lot of diaries on here seems to have a lot of complications, so I consider myself lucky.  One thing I will tell you as well -- is that almost everyone I've met here is doing well.  Today I saw someone 3 weeks post op visit, 8cm femurs, the guy walked around completely NORMAL - no gait issues at all.  It was pretty incredible.

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MirinHeight

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #24 on: November 16, 2018, 02:18:15 AM »

POD 28:  Haven't posted in awhile.  Things are going pretty cruise control at this rate.  I know a lot of you guys want videos, and I'll try to make one.  One of the things that happens when you do this is that you get so busy with stretching and doing work online, or other things that you begin to neglect the forum.  I try to keep in mind that I was once on the other side looking for as much info as possible, so for that reason I'll try my best to get a video up soon. 

Here's an overall recap of everything thus far and my recommendations to date for everyone...if I had to do everything over again and knowing what I know now:

Pre-Op:
Get your Vitamin D levels checked, make sure its optimized, if not take Vitamin D Supplements
Work out your Gluteal muscles like you've never done before as you're gonna lose that big time
Work out your Hip ABductors. that will help with the swaying as you get your strength back
Stretch your hamstring to the max
Stretch your quads
Do daily "thomas stretch" (look it up)
ITB - not so much as they'll release it if you're doing at Paley
Pre book your room, homewood suites has been a great experience, book early and make sure they know you want a handicap accessible room, the folding seat to shower is money
Arrive 1-2 days early and fill your room up with TONS of water, Buy tylenol PM + regular tylenol extra strength for pain, Bandaids, Mederma, Aquaphore for wound care, buy those Icy Hot Sticker pads for pain, buy heating pads, buy cold packs (the one you can put in freezer and then place on areas of pain, buy snacks
Buy loose fitting clothes that you can easily put on and off
Buy this bed table (my favorite purchase as I can do everything from my bed):https://www.amazon.com/gp/product/B07FR4Z5GW/ -- nothing is more comfortable than working from your bed
Get an aide for at least 1 week, 24/7 and then you can determine more or less (i placed my aide's info in one of my threads above if you want)
buy a stretching strap to help you stretch
Buy Vitamin D, Magnesium, and Calcium Supplements to take daily
Buy meal replacement drinks (i did soylent)
Buy protein supplements and a magic bullet or equivalent (your muscles will be weak so you want to help it grow back fast asap)
Bring swiming trunks, you wanna do pool therapy as your cleared . it'll help you big time

Post Procedure (in hospital):
pack tons of extra snacks and food in your backpack, ask nurse if you can order uber eats or whatever, you're gonna be starving if not nauseous
try to move your legs early, your legs will essentially be non functional so try to use your hands to pull your legs and contract your knee, etc.  Since i wasn't too flexible, i used to use my toe on one another to slowly slide my heels up on the bed until i can grab the back of my leg and bend my knees, i think this helped a lot with my current flexibility of my knee

Post procedure day 3-4 (in hotel)
take it easy, don't overdo your stretches and try to force yourself, or you gonna be in TONS of pain, do the exercises PT gives you but nothing more.  Then starting week 3, you can start pushing yourself a bit more.  Get in the hot tub and relax your muscles, the sooner the better, LA fitness has hot tubs, etc, I also stretch a lot in the hot tub, it relaxes your muscles big time and makes i easier to stretch

Many days you'll find yourself just laying around, just keep moving your legs and stretching, you'll get stronger and stronger.  After week 2 it's not so much your surgery pain it's more muscle strain pain and usage pain as the muscles are weak and starts to come back to "life" if you will, just fight through it, it'll get better daily

Today, POD 28 I can say other than muscle soreness from working out and intense stretching I don't have pain, I still do take tylenol and ibuprofen but it's more for discomfort that feels like you worked out all day.

If you plan to work remotely, you realistically won't be able to until week 3 realistically.  I started week 1 and 2 but i could only be maybe 20-30% efficient, week 3 is when you can go full mode again

In terms of ambulation, I get around with a cane now, at home i walk without a cane.  My swaying due to week hip abductors is getting less and less everyday.  Sometimes right after PT when they really stretch me out, I can walk for a good 20 mins and you won't notice any issues with me gait at all.  For long distances I still use crutches as my gluteals again are super weak and get sore when I have to walk far.

Overall, I will tell you this has been a great experience.  A lot of diaries on here seems to have a lot of complications, so I consider myself lucky.  One thing I will tell you as well -- is that almost everyone I've met here is doing well.  Today I saw someone 3 weeks post op visit, 8cm femurs, the guy walked around completely NORMAL - no gait issues at all.  It was pretty incredible.

good to see you are doing well. Yeah a video will be very nice for pts to see who are looking to get operated with the stryde nail.

also, the pt you saw that was 3 weeks post op that was walking normal, you said he had 8 cm femurs. but he couldnt have lengthened that fast in 3 weeks. So I am a little confused by that. Can you please elaborate on this.

thank you
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currently 179 cm with a 6'2 wingspan
Goal: 182.5-184 cm
top 5 LL surgeons: Paley, Rozbruch, Mahboubian, Parihar, Birkholtz
new up and coming: Giotikas

superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #25 on: November 16, 2018, 06:49:51 AM »

good to see you are doing well. Yeah a video will be very nice for pts to see who are looking to get operated with the stryde nail.

also, the pt you saw that was 3 weeks post op that was walking normal, you said he had 8 cm femurs. but he couldnt have lengthened that fast in 3 weeks. So I am a little confused by that. Can you please elaborate on this.

thank you

Sorry I meant he finished his lengthening 3 weeks ago, still in consolidation phase but was walking normally.
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MirinHeight

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #26 on: November 16, 2018, 06:53:55 AM »

Sorry I meant he finished his lengthening 3 weeks ago, still in consolidation phase but was walking normally.

that makes perfect sense, thanks for the update man!
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currently 179 cm with a 6'2 wingspan
Goal: 182.5-184 cm
top 5 LL surgeons: Paley, Rozbruch, Mahboubian, Parihar, Birkholtz
new up and coming: Giotikas

Uphill

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #27 on: November 16, 2018, 03:24:52 PM »

Hi, Superuser

Very exciting diary!  Wish your lenthening and recovery a super smooth one.
I will have a consultation next month, and will stay at homewood for 2 nights. Hopefully I have chance to talk with you.
I have some questions:
1. Could you share the link where you bought your stretch table?
2. Where did you find your helper?

Thank you
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superusercj1

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #28 on: November 25, 2018, 04:49:56 AM »

POD 39: currently at about 3.2cm.  Just general tightness in my IT bands; hamstrings starting to get tight but nothing crazy yet.  Sore by the end of the day due to muscle fatigue.  Ambulation quality and gait continues to improve daily.  I did get a little lazy stretching which I would advise NOT to do.  Made my hamstrings go from 90 degrees to about 75 degrees. Going to work hard to get it back.. we’ll see.  Diet wise I’m drinking a lot of protein to try to rebuild muscle. Everything is pretty cruise control right now.  Getting 8-10 hrs of sleep every night on no medications.
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Trevor.P

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #29 on: November 27, 2018, 01:49:23 AM »

You say it looks like everyone is fine ...
Do you believe or see someone who is not well? have problems?
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Bastouille

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Re: New Stryde Diary 2018 - with Dr. Paley
« Reply #30 on: November 27, 2018, 07:59:44 PM »

God da_n, what a great read!  Keep it going man.  I had consultation 2 months ago and I'm going for Stryde too in March.

These nails look like game changers.  I wonder how they compare with Guichet's internal in Milan, other than you don't have to go through painful clicks.

How long, in hours, would you say you stretch or train every day?  Could you do all this PT at home if the trainer would come to your place?
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Going forward with Stryde nail in March 2019, in Canada.
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