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[Ghostfish]

Hi veriicalpush

I am so glad that you are doing fine.  Yes, you are doing just fine!  haha  Don't expect too much at this moment.  As far as I know, none was able to walk without walker around a week.  That is simply impossible and not even recommended.  Videos you have seen are not probably walking after 1-2 weeks of surgery.  The early time you can expect to walk without an aid is probably 3 weeks which is already great.  You may start to walk with crutches by now or a few days later and continue to practice walking with crutches 1-2 weeks before walking with a cane.  By 3-4 weeks, you may expect to walk with a cane.  Once you walk like that, you can continue to walk like that for a while until the last moment which is generally somewhere 5-6 cm.  This is a general progress so some people do a little better and others do worse.  But in the end, they all do similar.  I think stretching is more important than walking although both are very important. 

For Alchemist, I was also thinking to use my time during lengthening.  But it didn't happen and perhaps can't happen.  It is just so hard to do anything meaningful during lengthening, especially if you are alone.  All things like eating, washing, getting/preparing food, or even pooping become much tougher.  You also need to spend quite some time for PT.  In my case, I had overall quite some pain during the whole process so I couldn't sleep very well and was so exhausted for a whole day.  So I recommend you not to expect too much during this time and just focus on lengthening and going home.

[verticalpush]

Hi veriicalpush

I am so glad that you are doing fine.  Yes, you are doing just fine!  haha  Don't expect too much at this moment.  As far as I know, none was able to walk without walker around a week.  That is simply impossible and not even recommended.  Videos you have seen are not probably walking after 1-2 weeks of surgery.  The early time you can expect to walk without an aid is probably 3 weeks which is already great.  You may start to walk with crutches by now or a few days later and continue to practice walking with crutches 1-2 weeks before walking with a cane.  By 3-4 weeks, you may expect to walk with a cane.  Once you walk like that, you can continue to walk like that for a while until the last moment which is generally somewhere 5-6 cm.  This is a general progress so some people do a little better and others do worse.  But in the end, they all do similar.  I think stretching is more important than walking although both are very important. 

For Alchemist, I was also thinking to use my time during lengthening.  But it didn't happen and perhaps can't happen.  It is just so hard to do anything meaningful during lengthening, especially if you are alone.  All things like eating, washing, getting/preparing food, or even pooping become much tougher.  You also need to spend quite some time for PT.  In my case, I had overall quite some pain during the whole process so I couldn't sleep very well and was so exhausted for a whole day.  So I recommend you not to expect too much during this time and just focus on lengthening and going home.

Ghostfish, thank you for the amazing words of encouragement my friend. You are, of course, 100% correct in everything you wrote. In fact, after writing my last message I feel myself walking a little easier in the walker and getting up/down is getting much faster. I think things will continue to get better and I can't wait for that to happen! Part of the reason it has been so difficult is because I'm not using any aid/caretaker. That means I do need to push myself quite a bit. There are many times I feel I've already pushed my body to its limit yet I need to get up for some reason. As soon as I get to the point where I feel I can walk without a walker I'd be happy to post a video showing my gait - but like I said I feel there's some time to go before we get to that point.

I have seen several posts discussing things getting more difficult around the 6cm point. I'm curious if that means people are regressing back to walkers/wheelchairs around that point or if it simply means they're feeling tighter. I really don't want to regress and I also don't want to give up! Going the full 8cm is pretty important to me since I won't do this surgery ever again and I don't want to have regrets years later about giving up too early.

In 10 days from today I'll be heading home to continue lengthening! I cannot wait. I'll get another round of x-rays on June 12 and I will post those as soon as I get them in my hands.

What an experience this has been so far - it truly feels like a battle in every sense. If I were to say which parts have been the most difficult then it's clearly days 2-3 (especially transport) - every day afterwards has GRADUALLY become easier.

[Kenda]

Vertical, may i ask where are you staying in Las Vegas?
Is it the Hotels listed on Limbplastx website or an Airbnb or what exactly because honestly it’s impossible to find a airbnb thats not above 3k per month in this area!

2) Do the hospital staff that do the PT everyday offer transportation to and from the hospital or how does this work? Do you take Uber?

3) How long are you staying in Las vegas ? Or are you going home to lengthen by yourself?

 

[Ghostfish]

I have seen several posts discussing things getting more difficult around the 6cm point. I'm curious if that means people are regressing back to walkers/wheelchairs around that point or if it simply means they're feeling tighter. I really don't want to regress and I also don't want to give up! Going the full 8cm is pretty important to me since I won't do this surgery ever again and I don't want to have regrets years later about giving up too early.

Hi verticialpush
Actually you are amazing that you have been doing this all by yourself.  My wife stayed with me for the first 2 weeks and left for her job.  It was so hard for me to handle everything by myself.  Dr. Paley probably doesn't even allow you to be alone for the first 2 weeks so if you come alone, you need to hire a caregiver for the first 2 weeks.  but I may be wrong about it. 

Everyday life is not easy with two painful broken legs.  Eating, washing, cleaning dishes or whatever is so hard.  As time goes by, you will be quite exhausted mentally and physically.  Also you will miss your family and friends a lot and may become to regret to fall into CLL journey.  Around 2 months, many people feel that way and tightness gets worse and worse too. Some patients didn't do any PT and couldn't stretch legs so they had to stop lengthening at 5 cm or less.  So you need to stay focused and determined.  And be positive and optimistic.   

After 6 cm or so (It is different for every patient.), most of people feel quite tightness.  It gives you quite some discomfort and some pain too.  But it is not like unbearable.  Most of people I know went through this moment and were able to push a little further.  As for regressing, you probably do not need to go back to walker or wheelchair.  However, I also want to tell you that regressing is not that important actually.  It doesn't mean you can't lengthen or you have to give up on this. I used wheelchair almost until the end.  But it was just fine and I was able to lengthen as I planned. Of course, I walked a lot too as much as I could.  So I think you don't really need to give any symbolic meaning to walker/wheelchair.  They are just tools for your need.  You just need them for a short period of time during lengthening.  With that said, you probably can walk until the end of lengthening.  It should be doable with a cane.  I strongly recommend you to use a cane.  It is because of the safety.  You don't really need to rely on the cane but better to bring it to walk until you feel really confident to walk. 

Take care!

[verticalpush]

Vertical, may i ask where are you staying in Las Vegas?

Is it the Hotels listed on Limbplastx website or an Airbnb or what exactly because honestly it’s impossible to find a airbnb thats not above 3k per month in this area!

2) Do the hospital staff that do the PT everyday offer transportation to and from the hospital or how does this work? Do you take Uber?

3) How long are you staying in Las vegas ? Or are you going home to lengthen by yourself?

(1) Absolutely, Kenda! I'm staying at the Hampton Inn on (3245?) St Rose Parkway. That is one of the hotels listed on their web site. Overall I would say this hotel is meh. One morning I was hungry and asked if anyone would mind putting together a box of breakfast for me, and while they obliged to do that, they made it clear it was a one time deal. They also said they wouldn't mind delivering ONE order from Amazon or Walmart if I wanted things shipped to my room. I made friends with some of the folks working the night shift -- I split half of a pizza I ordered with Adrian the night clerk and he is very generous about opening the door for food delivery now! But as they mentioned a few times "this is not a full service hotel".

I'm switching to the Homewood Suites (South Henderson) on Thursday (10450 South Eastern Avenue Henderson Nevada 89052). According to Dr. D., this hotel has some special deal with Limbplastx and they'll do grocery runs with their hotel staff and will only charge you the actual cost. I'll note this hotel is also NOT full service, but it sounds like it'll be a step up. It also has a shuttle van but the shuttle is not wheelchair accessible. I'm hoping that by Thursday I won't need to be using the wheelchair to go to PT, however.

I'll be honest - I see very little advantage going with one of the three recommended hotels. You are only going back to LimbplastX one time after surgery - and that's to get a fresh set of x-rays before going home (if you plan to lengthen at home). I could've stayed at Sunset Station Casino, paid 1/3 of what I'm paying here, been physically closer to physical therapy where you go 3 times a week (Optimal Physical Therapy @ Paseo Verde Parkway #200, Henderson, NV) and would've had the ability to order room service and not mess around with uber eats / door dash, etc. If you plan to stay in Vegas for lengthening then the proximity to LimbplastX or the PT place matters even less. You can score some great hotel deals in Vegas.

(2) You're on your own for transportation and some days that can be quite a process getting from the hotel to PT. Uber and Lyft don't have wheelchair options turned on in Las Vegas yet so your only option is an app by the local cab companies called "Kabit". You can select a wheelchair accessible cab through that option. But it's not nearly as good as Uber. More than half of my pick up requests are cancelled until one finally isn't. It works in a pinch but I'm going to try to forego the wheelchair tomorrow or Wednesday and use a regular Lyft/Uber.

(3) I'm leaving Las Vegas in 10 days. I do feel myself getting quite a bit stronger the past couple of days so if everything continues at this rate that will be the perfect amount of time to have spent here. I'm dreading the logistics of how many bags I'll have to pack on the airline and then getting across the airport, but they have wheelchair service which I'll likely end up using.

Hi verticialpush
Actually you are amazing that you have been doing this all by yourself.  My wife stayed with me for the first 2 weeks and left for her job.  It was so hard for me to handle everything by myself.  Dr. Paley probably doesn't even allow you to be alone for the first 2 weeks so if you come alone, you need to hire a caregiver for the first 2 weeks.  but I may be wrong about it. 

Everyday life is not easy with two painful broken legs.  Eating, washing, cleaning dishes or whatever is so hard.  As time goes by, you will be quite exhausted mentally and physically.  Also you will miss your family and friends a lot and may become to regret to fall into CLL journey.  Around 2 months, many people feel that way and tightness gets worse and worse too. Some patients didn't do any PT and couldn't stretch legs so they had to stop lengthening at 5 cm or less.  So you need to stay focused and determined.  And be positive and optimistic.   

After 6 cm or so (It is different for every patient.), most of people feel quite tightness.  It gives you quite some discomfort and some pain too.  But it is not like unbearable.  Most of people I know went through this moment and were able to push a little further.  As for regressing, you probably do not need to go back to walker or wheelchair.  However, I also want to tell you that regressing is not that important actually.  It doesn't mean you can't lengthen or you have to give up on this. I used wheelchair almost until the end.  But it was just fine and I was able to lengthen as I planned. Of course, I walked a lot too as much as I could.  So I think you don't really need to give any symbolic meaning to walker/wheelchair.  They are just tools for your need.  You just need them for a short period of time during lengthening.  With that said, you probably can walk until the end of lengthening.  It should be doable with a cane.  I strongly recommend you to use a cane.  It is because of the safety.  You don't really need to rely on the cane but better to bring it to walk until you feel really confident to walk. 

Take care!

Thank you Ghostfish! Doing this by myself seemed like an INSANE idea. I had a few options on Sunday I was going to consider if I wasn't feeling 100%, but this ended up working out. Not having someone here with me forced me to use my walker when I know I wouldn't have used it. By now, more than a week post-surgery, I feel a caretaker would be a luxury item for almost Stryde patient. I have no problem getting around my hotel with the walker and transferring between wheelchair/bed/couch/walker doesn't take nearly as much time as it used to. Practice makes perfect! Something else you wrote couldn't be more true - be positive and optimistic! I find my mental attitude has so much to do with my progress.

Thank you so much for the preview of what to expect when I return home and continue lengthening! I'll make certain to continue to use PT when I get back. I've come this far - I have no intention to quit early if I can help it! I will need to buy a pair of crutches and a cane to complement my walker, but I hope I won't need a wheelchair once I return home. I'm so glad to hear that many of the people you knew did not need to go back to a walker or wheelchair as they pushed past 6cm! I'm hoping to get to the 8cm mark but I would be alright if I needed to stop a little shy of that.

[Kenda]

Wait so Did Dr D tell you how to lengthen and by how much , will he monitor your progress?

& if you are leaving vegas, i dont know where are you going but how will you do PT ? Will you pick any center in your home state ?

3 times a week , oh i thought PT was everyday.


The thing is i am not a US resident and its a must that i stay in the city i do the surgery in, because what if the ERC broke, what if complications happen, what if i need It band release, what if and what if,...... so everything count on the Dr, thats why i dont want no money hungry careless Dr, i want someone that checks up and monitors the lengthening process consistently in order for me to reach full 8cm gain in femurs, i dont know if Dr D is careless or what......but your diary is so useful and it will show if he is worth it or not...

[verticalpush]

Friends --

Getting to and from PT with a wheelchair using the only wheelchair-friendly app I'm familiar with (Kabit) is almost impossible.

I will not attempt to go to PT with a wheelchair again. Sadly, wheelchair transportation in Las Vegas leaves much to be desired. If you rely on it to get to/from your PT, prepare to wait a while if it does end up working. But more often than not it won't work. I present for your viewing pleasure my entire riding history with the Kabit app. None of the cancellations were from me, it was because they couldn't find a ride within 10 minutes. The only success I've had with Kabit has been calling the number (702-551-5151), but even that failed me today. Today I was fortunate to get a Kabit wheelchair accessible ride there but waited about an hour while the cab company was "searching" for a wheelchair compatible taxi. I had enough and called a Lyft. The Lyft driver was nice enough to fold my wheelchair which barely fit in her trunk and I got in the car.

If you're planning to do this on your own, do factor this in. There are specialized medical transport companies that will gladly transport you for a cool $100 unless you plan to use insurance, but file all of this under things to consider before surgery. You don't want to be worrying about this stuff when you're in pain! If you have a caretaker that drives then this doesn't apply.

Okay, soapbox off. Onto happier news. As of right I am 6.66 mm taller than I was before coming to Vegas! Walking with the walker is getting easier. I don't use the urinal anymore except if I have to pee in the middle of the night (I'll have to admit this is going to be a tough habit to break even when I can easily walk after I get back home!  ).

Teresa/Ronnie check on me every day. Ronnie was going to drive me to Costco to get the next round of pills (fortunately I won't be out for another few days because I've been taking half doses). Apparently he was bit by a dog this weekend so I told him not to worry. I change hotels on Thursday to their main recommended hotel. Next Wednesday I see Dr. D. for a follow up and x-rays.

Time at the hotel is passing by just fine. I've become closer with some older friends of mine.

Wait so Did Dr D tell you how to lengthen and by how much , will he monitor your progress?

& if you are leaving vegas, i dont know where are you going but how will you do PT ? Will you pick any center in your home state ?

3 times a week , oh i thought PT was everyday.


The thing is i am not a US resident and its a must that i stay in the city i do the surgery in, because what if the ERC broke, what if complications happen, what if i need It band release, what if and what if,...... so everything count on the Dr, thats why i dont want no money hungry careless Dr, i want someone that checks up and monitors the lengthening process consistently in order for me to reach full 8cm gain in femurs, i dont know if Dr D is careless or what......but your diary is so useful and it will show if he is worth it or not...

Dr. D. does not directly monitor my progress between scheduled appointments with him. The Nuvasive ERC machine keeps track of that stuff and won't let you lengthen more than .33mm in a session, and no more than 1mm in a day. It resets the counter at midnight, so if you miss that last session then you have to wait till the next day. The machine has no WiFi built in it so as far as I know Dr. D. can't communicate with the machine, but him wanting to see you every 2-3 weeks for x-rays will tell him if there's a problem with the machine (or with the user!).

Dr. D. is going to call some PT providers in my city when I leave. He's done that for past patients who left. For example, they have a really good PT they worked with in the Austin Texas area. He will speak directly to the PT and tell him or her what exercises he wants them to do with you.

If you are coming from out of the country I assure you that you'll be alright! Las Vegas is one of the top international destinations. But to repeat my advice earlier in the thread - there's almost no need to stay in one of the pre-recommended hotels. You might stay closer to downtown Las Vegas and find that the service industry employees cater more to international visitors closer to the strip/downtown than they do here in Henderson. They will certainly speak more languages than they speak here at the recommended hotels! If you stay in Vegas I'm sure Dr. D. will check on you every 2 weeks for x-rays. He also calls the PT clinic to make sure everything is going well with that. Yes, you only go to PT 3 times a week.

So far I have absolutely nothing negative to say about Dr. D. or the surgery. But I DO have some minor complaints about the hotel arrangements and transportation between PT sessions.

[ActionSpeaks]

Hi Vertical Push, it sounds like you are doing amazingly well considering things like transportation or lack of, hotels, food deliveries, and on your own too! You definitely have a strong and brave character. And Dr. D does sound very thorough, caring and professional, and his staff sound great too. Thank you for answering my previous questions, that is really helpful. Also for the location of PT clinic in Henderson in one of your posts~ I have checked out some vacation rentals/rooms nearby, like within a mile or less, and hope to circumvent those transport issues as much as possible. There are also some more affordable hotels near PT vs hotels listed on LimbplastX site. Now that I know the latter don't really have wheelchair accessible transport they are off my list. I hope each day is still gradually getting easier for you, and good luck with the 6cm 'hump', and I have no doubt that one day very soon you will reach your goal.

[verticalpush]

Well everyone we've reached day 12! So far the pain remains the soreness type you'd experience after really pushing yourself at the gym. It occurs in one of two spots - (1) about a 6 inch path behind my kneecap up to behind my leg, or (2) on the sides of my femurs. The very sharp pain I felt on the top ends of my femurs when I moved my legs is completely gone. I haven't felt that in at least 4 days. Pushing myself seems to be doing the trick. It is NOT easy but there's no doubt it's helping me to recover faster than I imagined I would.

Quick *TMI* story time. Many people stress the importance of stool softeners. You absolutely do need to take those. Every other day or so I also take a dulcolax. I took 2 last night, didn't get much action from it today so figured I'd take a third. I'll spare you the details but it was not one of my smarter decisions.

Sleeping is difficult. I'm a side sleeper and while I'm getting closer to the point where I can comfortably rest on my side for a while, eventually it becomes too uncomfortable. I've tried looking through other diaries to see when they could sleep on their sides - looks like I have a little ways to go.

The next set of x-rays come on the 12th. I'll ask Dr. D. to also get a video of me walking for me to post here.

Hi Vertical Push, it sounds like you are doing amazingly well considering things like transportation or lack of, hotels, food deliveries, and on your own too! You definitely have a strong and brave character. And Dr. D does sound very thorough, caring and professional, and his staff sound great too. Thank you for answering my previous questions, that is really helpful. Also for the location of PT clinic in Henderson in one of your posts~ I have checked out some vacation rentals/rooms nearby, like within a mile or less, and hope to circumvent those transport issues as much as possible. There are also some more affordable hotels near PT vs hotels listed on LimbplastX site. Now that I know the latter don't really have wheelchair accessible transport they are off my list. I hope each day is still gradually getting easier for you, and good luck with the 6cm 'hump', and I have no doubt that one day very soon you will reach your goal.

ActionSpeaks, thank you for such a positive message! One of the best features of keeping a diary is that we can encourage each other to keep pushing. I'm sure many of us don't tell too many family members or friends so in some ways we're the best support group we have!

Dr. D. has the deal with Optimal Physical Therapy but I specifically remember him saying you can choose any of their locations. The one here in Henderson is closest to the recommended hotels, but if you stayed closer to the strip you could use their central Las Vegas location (1341 S Rainbow Blvd, Las Vegas, NV 89146). If you've found some good affordable hotels close to the "main" Optimal Physical Therapy location in Henderson that offers wheelchair transportation go for it! Truth be told, it's frustrating not having a good option for wheelchair accessible transportation but it is something else FORCING me to push harder than I would've. Tomorrow I'll go to PT using just my walker, which is going to be a major challenge. I might use my wheelchair to wheel down the hallway to the hotel reception desk and ask them if I can leave it there until I come back - that would cut off a good bit of using the walker.

I really wish there was an "all inclusive" package where all of these details such as transportation, a caretaker, and groceries are worked out for you. AFAIK no U.S. doctors offer this but I think I've seen this from some international doctors.

[Kenda]

Vertical,
Do you think that you would need to add more Pt than the 55 times Dr D offers in the package? Because honestly most other Drs offer At Least 70 Times PT and i believe its everyday, so Can you ask him why only 55 times?

2) when you go to Optimal PT center do they have like a pool or special equipment or the PT is all about stretching ? Do you have to go to the gym and work on treadmill ?

3) Airbnb vs Hotel, for me personally i will be going with my mother to this surgery so she will accompany me and we Have to stay the whole 3.5 months there so if my budget is like 1600$ rent per month either its a hotel or airbnb , but unfortunately all the Airbnb in vegas are so so expensive! So can you give me an estimate of how much does a hotel extended stay cost for a month ?

[verticalpush]

Vertical,
Do you think that you would need to add more Pt than the 55 times Dr D offers in the package? Because honestly most other Drs offer At Least 70 Times PT and i believe its everyday, so Can you ask him why only 55 times?

2) when you go to Optimal PT center do they have like a pool or special equipment or the PT is all about stretching ? Do you have to go to the gym and work on treadmill ?

3) Airbnb vs Hotel, for me personally i will be going with my mother to this surgery so she will accompany me and we Have to stay the whole 3.5 months there so if my budget is like 1600$ rent per month either its a hotel or airbnb , but unfortunately all the Airbnb in vegas are so so expensive! So can you give me an estimate of how much does a hotel extended stay cost for a month ?

Hi again Kenda! I'm so glad my diary seems to be helping to give you an idea of what to expect. One thing I've noted on other diaries with other doctors is that (surprisingly) a lot of them only schedule you for 3 PT sessions a week. You can easily do most of the stretches you learn in PT on your days off, and in fact they encourage you to do that. Lifting your legs up and also sliding your feet back as far as they will go are two things I do every few hours. In my opinion, there's no substitute for actually walking on your walker. That's the best PT you can do. If your mother will be there (you have an awesome mother by the way!) then you can practice walking around with her. I'm not so sure extra PT sessions at the clinic would help you much more than doing these exercises at home.

If you still want more PT sessions, I'm sure you could pay extra. Kenda - you mentioned you are not a U.S. patient so if you DID want extra PT sessions you wouldn't be able to run those through insurance. One thing you might want to ask Dr. D. is if he would negotiate on your behalf for a 4th PT session each week. It never hurts to ask.

As for what to expect, I've only used the stationary bike and then a few stretching techniques in a doctor's office-style room. I can take some pictures of the place today if that would be helpful. The PT staff are very friendly. They have treadmills and other equipment there but I doubt that you'd use that -- at last not for the first month or so. There is no pool, but Dr. D. said he will allow you to use the hotel pool after a few weeks once your surgery wounds have fully healed. I can't wait till he lets me use the shower. I feel like I'm starting to cause the hotel's breakfast area to clear out when I roll in with my wheelchair.

Airbnb can be expensive depending on the time of year and you can easily find cheaper hotels than an airbnb. You can stay at a renovated casino hotel like The D for about $40 USD/night, which would work out to be $1200/month. Also don't forget that with an AirBNB you have cleaning costs, etc. A hotel gives you daily housecleaning service and stuff to do in the hotel. You also have a gym, which can help you if you want to do some extra PT on days off. All of those things you miss out on with an AirBNB. Will your mom be able to drive you? If so I would DEFINITELY not confine your search to the Henderson area. You can get between downtown Las Vegas and the PT clinic in a little over 20 minutes (maybe 30 minutes in traffic). Normally when I do long hotel stays I check the "express deals" section of Priceline and also Hotwire. You will find MUCH cheaper hotels. I'd advise you select 3 star hotels or higher though - you don't want to be stuck somewhere you don't like.

[Kenda]

Honestly your Diary & the way you explain everything in Detail is the most helpful thing ive come across this forum, Thank you truly!

Yeah you are so right that the hotel seems way better than airbnb......& i will search in the areas you told me about.

Keep going & keep updating us!

[Cas]

Hi verticalpush, hope you are recovering well!  I was wondering what the smallest stryde size that they have? And if Dr. D has used stryde on the tibias yet ? I am doing femurs first and I know that stryde works most for femur bones but what about tibias ?

[verticalpush]

Honestly your Diary & the way you explain everything in Detail is the most helpful thing ive come across this forum, Thank you truly!

Yeah you are so right that the hotel seems way better than airbnb......& i will search in the areas you told me about.

Keep going & keep updating us!

Thank you for the great words, Kenda! I switched hotels today from the Hampton Inn on his list of recommendations to the Homewood Suites. This hotel is much newer and far more up to date but would you believe the handicapped accessible suite is the FARTHEST room from the elevator?! I would not be surprised if that is intentional to force me to have more practice with the walker!

Absolutely, check hotels in the downtown Las Vegas area and also the strip. You will easily find good options for $50/night or less.

I can't wait to share with you guys my next set of x-rays once they're taken on Wednesday. I can take baby steps waddling like a penguin without a walker right now.

Hi verticalpush, hope you are recovering well!  I was wondering what the smallest stryde size that they have? And if Dr. D has used stryde on the tibias yet ? I am doing femurs first and I know that stryde works most for femur bones but what about tibias ?

Hi Cas! I thought I had fairly wide thighs but I'm using an 11.5mm inch Stryde nail. The nail they used with me is the medium option. I believe (don't quote me on this) that there is also a 10mm nail and a 13 mm nail.

I'm sorry I don't know about tibias. By far, most of the patients I've heard about did femurs.

[verticalpush]

Ok everyone, I posted a very short video of me walking unassisted at the PT clinic. This is 14 days post-surgery, and I've lengthened 1cm. I still have a LONG way to go, and I have the classic penguin walk. My gait is awful and will need a lot of work in the coming months. But to me, this is huge progress. Before today I took at most 2 steps unassisted. If this is the baseline after 14 days, I'll take it!

Short clip of me walking like a penguin

[Ghostfish]

Ok everyone, I posted a very short video of me walking unassisted at the PT clinic. This is 14 days post-surgery, and I've lengthened 1cm. I still have a LONG way to go, and I have the classic penguin walk. My gait is awful and will need a lot of work in the coming months. But to me, this is huge progress. Before today I took at most 2 steps unassisted. If this is the baseline after 14 days, I'll take it!

Short clip of me walking like a penguin

Wow! That is really awesome, man!  It is really a good walking just after 14 days.  It will be better and better.
Keep up the good work!

[verticalpush]

Wow! That is really awesome, man!  It is really a good walking just after 14 days.  It will be better and better.
Keep up the good work!

Thank you so much for the encouragement and the awesome words, ghostfish! That’s very true, my walking will continue to improve. This stryde nail is just amazing — walking after just two weeks!

I'm excited to keep everyone posted. Let’s hope the xrays on Wednesday look good! All the positivity on this thread has encouraged me to push myself even when my body wants to stop. Friends - those of you who will start your CLL journeys soon I will be on your threads encouraging you just as you're all encouraging me!

[BeYourBest]

Great video man!

I got a feeling you’ll recover relatively quick.

Keep going and always listen to your body.

[Movie]

Haha it is game changer, 2 weeks bro and you can do that ... awesome bro, rooting for you !

[ActionSpeaks]

Hi Vertical Push, WOW walking like that and only 14 days after surgery! You look great. Thank you for sharing this video. Amazing progress after only 14 days with Stryde. Congratulations, your progress is truly amazing! It is so encouraging and motivating to read all your updates.  I was in a 'take shoes off' situation last week and kept thinking of all your posts and how things like this would change too for me in the near future. All the best.

[TheAlchemist]

Ok everyone, I posted a very short video of me walking unassisted at the PT clinic. This is 14 days post-surgery, and I've lengthened 1cm. I still have a LONG way to go, and I have the classic penguin walk. My gait is awful and will need a lot of work in the coming months. But to me, this is huge progress. Before today I took at most 2 steps unassisted. If this is the baseline after 14 days, I'll take it!

Short clip of me walking like a penguin

Amazing. Just 2 weeks after surgery and already walking. Stryde is a game changer.This is very motivating. Awesome progress. Keep pushing verticalpush!

[MichaelJose]

Thank you so much for the encouragement and the awesome words, ghostfish! That’s very true, my walking will continue to improve. This stryde nail is just amazing — walking after just two weeks!

I'm excited to keep everyone posted. Let’s hope the xrays on Wednesday look good! All the positivity on this thread has encouraged me to push myself even when my body wants to stop. Friends - those of you who will start your CLL journeys soon I will be on your threads encouraging you just as you're all encouraging me!

Great job bro - keep going!

[Leggs]

Short clip of me walking like a penguin

verticalpush-

I've asked everyone who undergo's STRYDE lengthening to post videos throughout their process. This is exactly why, words can't accurately describe what a simple video reveals in a matter of seconds. Keep up with the excellent documentation you are providing about your experience.

[verticalpush]

BeYourBest, Movie, ActionSpeaks, TheAlchemist, MichaelJose, and Leggs --

Your words mean so much to me, thank you!!! This feels like a team effort and that we're all in this together. You guys (and really everyone on this thread) have encouraged me to go beyond where my mind wants me to stop. Your mind matters so much. Just as it can be your biggest ally, it can also be your biggest hurdle.

Realizing I could walk unassisted literally flipped a switch. Yesterday (Saturday) I walked around my hotel room as much as I could unassisted. I know the risk in doing this without a cane, which is why I will get one ASAP,.

I'm so excited to see what the x-rays show. I'm now at the 1.1 cm mark. I will say that when I do my third lengthening of the day in bed (I learned from other diaries that laying flat in bed while lengthening is the best) I'm starting to get a bit of pain during that last lengthening session. I'm sure that's normal, and it's nothing I can't handle.

For anyone else who's about to do this - don't see the wheelchair as your friend. See it as something you want to get out of ASAP. I borrowed one from Dr. D. -- I'm not going to have one with me when I return home on Wednesday. The transition from wheelchair to walker was far more difficult than going from walker to no walker. 

Thanks EVERYONE on this thread for your support - I'll keep pushing and will keep posting x-rays and updated walking videos.

[Leggs]

verticalpush-

If I remember correctly you are now back home or are in the process of traveling back home from Vegas. Hope all goes well for you during your travels. Probably won't be easy, but well worth it once you're back in the familiar and comfortable surroundings of your own home.

[verticalpush]

verticalpush-

If I remember correctly you are now back home or are in the process of traveling back home from Vegas. Hope all goes well for you during your travels. Probably won't be easy, but well worth it once you're back in the familiar and comfortable surroundings of your own home.

Thanks for remembering, Leggs! I actually started writing a diary post last night but fell asleep before posting.

As I write this, I am just over 1/2 an inch taller than I was when I started my journey. I'm also very comfortably writing this update from home. I'd be lying if I said the airport and flying experience was easy, but I'll get into that later.

On Wednesday June 12th, I had my follow up with Dr. D. Since I had borrowed the wheelchair, I left that back in Nevada but still had to manage lugging around 1 large checked bag for clothes, 1 surprisingly heavy checked bag for the ERC device, plus my backpack and walker. I managed to bring that all down to leave at the front desk while I took a Lyft to LimbplastX for my x-rays and follow up.

The big update is that I had my 2.5 weeks post-surgery x-rays done. Here are my x-rays -- it looks like I apparently have a zipper embedded near my pelvis  . I'm having problems pulling up the other 4 x-ray pictures right now but I'll update once I get that resolved. (Update: resolved! All x-rays are posted.) Dr. D. is happy with my progress so far, he says everything looks good and that new bone is starting to grow. I'll admit I haven't been taking many calcium pills - from reading a few other diaries I was afraid of pre-consolidation. I'll be sure to take my pills now! I expected to be in the office longer than I was - but it was just a little over an hour for x-rays and the consult. My next appointment is July 9, but he wants me to get x-rays done locally about midway between now and then. I was then off to the Costco pharmacy (I don't think I could've picked a pharmacy with a longer walk between the entrance and the pharmacy counter! Ouch!) to fill my scripts before returning to the hotel to collect my bags.

The Homewood suites offers a free van to the airport, which came in handy as the driver actually stepped out of the van to try to help me find a cart to put all my baggage on. I would've been overwhelmed if the driver left me there standing on the curb with an impossible amount of bags to navigate to the counter. With the baggage cart, I headed over to the airline counter and the associate was extremely friendly. She did not charge for the ERC (medical) device but I did pay for my one checked bag. The airport offers a free (plus tip) wheelchair service that takes you to the gate and she encouraged me to use it. Feeling overconfident at this point, I decided I'd just use my walker. You'd be amazed how many random strangers come up to you to give you an unexpected compliment "keep it up, young man! You're doing great!" but walking through a large airport the size of Las Vegas-McCarran with a walker is NOT something I'd do again a little after 2 weeks post surgery. I stopped at the Centurion lounge which was a few gates away from my flight and unfortunately they did not offer me any assistance, making it very difficult to actually relax. I had to waddle to get a tiny amount of food and it was very hard to find any space to sit. At this point my legs were beat and I'd say my pain level was around a 5-6.

The flight itself was pretty uneventful. After you're used to having your feet elevated, sitting in a normal airplane seat for over 2 hours isn't the most comfortable thing in the world. Once the plane landed I learned from my experience collecting bags from the Las Vegas airport and found one of the luggage carts. All of my bags arrived!

I caught another Lyft to get back home and pretty much avoided much walking the next day. I have PT lined up for Monday but I'm doing the exercises I learned back from the Las Vegas PT clinic.

I find being home puts me in such a better mood - I'm far more comfortable in my own bed and having my friends who can step in and help if I need it. Finally, being cleared to drive is going to be a game changer. I'm (so far) very pleased with my decision to lengthen at home, but boy let me tell you the airport experience was NOT pleasant. Note to others - use the wheelchair service!!

Remember that I did this entirely by myself. I want to be careful not to make it seem like that is something potential LLers should consider doing UNLESS they have no other choice. I had no caretaker to help me, no family member in town who could step in if there was an emergency, etc. The risk I took with those decisions is pretty insane now that I look back at it. I was LUCKY. But things that would've been relatively easy were exceedingly difficult. I'll close by saying it is POSSIBLE to do this by yourself but you need to be aware of what you're getting yourself into.

[TheAlchemist]

Congrats on that first 0.5 inch! Seems like time is flying by and great progress is being made. Glad you are home, nothing like settling in your own bed.

I am impressed with your determination and will to do all of this by yourself. Personally I'm hiring a caretaker for the first 7 days after leaving the hospital.

Looking back, if you had the option, ideally how long would you have a caretaker and for how long each day? The caretaker fees are huge, so trying to optimize risk and costs, I was thinking the first 3 days after the hospital, 24 hrs a day, and then the next 4 days 12 hours a day. Do you think that is enough or too much?

Couple of other questions:

1) How is pain management now?

2) How has sleep been? Any tips?

Thanks!

[verticalpush]

Looking back, if you had the option, ideally how long would you have a caretaker and for how long each day? The caretaker fees are huge, so trying to optimize risk and costs, I was thinking the first 3 days after the hospital, 24 hrs a day, and then the next 4 days 12 hours a day. Do you think that is enough or too much?

Couple of other questions:

1) How is pain management now?

2) How has sleep been? Any tips?

Thanks!

Thanks, TheAlchemist! I agree, time is moving so much faster now post-surgery.

I do think having a caretaker for the first week is beneficial. For me, it would have meant not needing to risk falling every time I needed to empty my urinal. I felt like I was taking my life in my hands every time I did that! Also, it's going to be a million times easier to get food. You won't have to plead with hotel staff to escort your delivery person into the room. The caretaker can also keep track of your medicine intake, which is certainly advantageous. Plus, if you can get a caretaker that has transportation, he/she can take you to/from PT which will certainly save you a bit of money.

Having said that, I don't know that having a caretaker is going to make a major difference for the 8 hours or so that you're sleeping. As long as you have your medicine within arm's reach, it would be hard for me to justify that cost especially after the first 24 hours.

I would probably advise 16 hours the first 2-3 days, followed by 10-12 hours days 4-7. After a week, you probably won't need a caretaker unless you are experiencing complications and can't bear weight. I will say this - you'll know just before you leave the hospital what degree of function you'll have the first few days. Many caretaker agencies, unfortunately, want you to commit upfront to "X" amount of hours per week, and it's very difficult to know how much you'll need to depend on the caretaker until you're out of the hospital.

Pain has honestly never been worse than a 5 or a 6 at tops. Of course, the more you use your legs, the more short term pain you'll have, but the faster recovery will be. So, you face a trade off with almost everything you do recover-wise. I was prescribed long term and short term pain medicine. I stopped taking the long term pain medicine after a day and only take half a dose of the short term pain medicine. With today being the end of week 3, I will start my transition into OTC Tylenol.

Sleep has sadly been a problem for me even before the surgery. I find that taking the short term pain medicine and the muscle relaxer makes me sleepy, but only for the short term. I take a benadryl tablet plus a time-release melatonin tablet and that seems to do the trick. The first couple of weeks you'll wake up a couple times each night not necessarily in pain but in discomfort from the current position you're in. I'm *almost* to the point where I can sleep on my side and I can tell that is going to be a major game-changer.

The important part about all of this is that every single day is better than the last day. You are literally always improving in every facet. Hope this helps!

[TheAlchemist]

Thanks vertical push! Super helpful, going to take your advice and book my care taker hours accordingly. Sorry I forgot to ask, with regards to flexibility, how important do you think building up flexibility is pre op? I can’t touch my toes and my op is 2 months away. How flexible were you before the op? Paley told me pre op flexibility is not a huge factor in putting the odds in my favor.

[verticalpush]

Thanks vertical push! Super helpful, going to take your advice and book my care taker hours accordingly. Sorry I forgot to ask, with regards to flexibility, how important do you think building up flexibility is pre op? I can’t touch my toes and my op is 2 months away. How flexible were you before the op? Paley told me pre op flexibility is not a huge factor in putting the odds in my favor.

I'll be honest - Dr. D. got on me about flexibility pre-op, encouraging me to do yoga, but I didn't take it that seriously. I think I read the same thing you read about Paley's advice re: flexibility not being as much of a factor (especially if you do cardio at the gym pretty regularly). During my in person consultation before surgery, Dr. D. takes measurements of how flexible you are. Needless to say, I was NOT that flexible.

Having said all that, it's possible this would be a bit easier if I was more flexible. But, given that my experience so far has been about as smooth as I could hope for, I'm really not that upset. Build up your stamina. Build up your tolerance by pushing yourself beyond your limit in the gym. I think those two things make an even bigger impact in PT, which ultimately makes the biggest impact in your recovery.

[OGfivesevener]

I'll be honest - Dr. D. got on me about flexibility pre-op, encouraging me to do yoga, but I didn't take it that seriously. I think I read the same thing you read about Paley's advice re: flexibility not being as much of a factor (especially if you do cardio at the gym pretty regularly). During my in person consultation before surgery, Dr. D. takes measurements of how flexible you are. Needless to say, I was NOT that flexible.

Having said all that, it's possible this would be a bit easier if I was more flexible. But, given that my experience so far has been about as smooth as I could hope for, I'm really not that upset. Build up your stamina. Build up your tolerance by pushing yourself beyond your limit in the gym. I think those two things make an even bigger impact in PT, which ultimately makes the biggest impact in your recovery.

Congrats so far Vertical. Best wishes onward man!