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Wait for Stryde

11 (50%)

Go for PRECICE

11 (50%)

Total Members Voted: 22

[randomperson]

So, as if right now, would people on here recommend going for PRECICE or Stryde? I understand Stryde's return is TBD. Someone else posted a poll on this earlier but I wanted to get a more recent read on people. Let's say you go with Paley.

[Masteryourlife]

 Depends on your needs and timings.
If you have time wait for stryde.
I did not go trough this but even with a super weight bearing nail with perfect mechanism etc. No corrosion and so on ,this is a tough journey .
Can't imagine with precice 2.2 ... so I would wait for it .
That is wait I am actually doing for myself so I suggest to wait if time is not an issue (I am in early 20s)

[SuchLL]

Hi randomperson, I did femurs with stryde last year, and I’m doing tibias with precice 2 now. Both were with Paley. Here’s my diary if you are interested: http://www.limblengtheningforum.com/index.php?topic=67400.0

My experience is, if you have someone helping you through the entire lengthening and consolidation phase (5-6 months), and you can take a few months off or you can wfh, then doing it with stryde or precice 2 won’t be so different. In my case my parents are taking good care of me, I’m taking 3 months off, I can also wfh during consolidation phase, so my experience with precice 2 is very smooth and relaxed. However if you have to do it alone, or you can’t have someone helping you 5-6 months, precice 2 will make entire process much harder. It’s still doable, just much harder. Last year I went shopping for 1 hour with stryde just 1 week after the surgery. If you do it with Paley you can even go to Disney, universal studios, etc… This is how convenient stryde is. You can do almost everything by yourself without feeling exhausted.

[Masteryourlife]

Hi randomperson, I did femurs with stryde last year, and I’m doing tibias with precice 2 now. Here’s my diary if you are interested: http://www.limblengtheningforum.com/index.php?topic=67400.0

My experience is, if you have someone helping you through the entire lengthening and consolidation process (5-6 months), and you can take a few months off or you can wfh, then doing it with stryde or precice 2 won’t be so different. In my case my parents are taking good care of me so my experience with precice 2 is very smooth and relaxed. However if you have to do it alone, or you can’t have someone helping you 5-6 months, precice 2 will make entire process much harder. It’s still doable, just much harder. Last year I went shopping for 1 hour with stryde just 1 week after the surgery. If you do it with Paley you can even go to Disney, universal studios, etc… This is how convenient stryde is. You can do almost everything by yourself without feeling exhausted.

The second part of your message kinda makes me want to wait for stryde even more lol  .
Hope the nitinail (since it's also testing it on humans) will turn out good and efficient so all Llers will be set by the end of 2022 /early 2023 with a wb nail ,hopefully .

[ryand2021]

I faced the similar struggle back in February and I eventually opted for P2.2 because I had a strong incentive to get it done before COVID ends. Yes it will be a sucky 6 months but once you make it through you will see the tangible benefits. COVID created a unique time window in which many can do LL without taking a huge hit on work and social life.

If height is something that haunts you everyday and creates lots of unhappiness and distraction on an hourly basis, I would just go for P2.2, get it done and move on. 6 months is not short, but it's not long either. If you can manage to wait for a year or two (or even longer) and accept the risk of uncertainty, you can wait.

[Jayjames]

I've been hearing from Dr interviews that it's unlikely Stryde comes back again in the next year so if you're likely to do it within a year or two I say just go for Precice. If you're further out or if you have no funds/family to assist in the lengthening and consolidation phase then wait for Stryde or another weight-bearing nail to come out in 1.5yrs or more.

[Siegfried]

Hi randomperson, I did femurs with stryde last year, and I’m doing tibias with precice 2 now. Both were with Paley. Here’s my diary if you are interested: http://www.limblengtheningforum.com/index.php?topic=67400.0

My experience is, if you have someone helping you through the entire lengthening and consolidation phase (5-6 months), and you can take a few months off or you can wfh, then doing it with stryde or precice 2 won’t be so different. In my case my parents are taking good care of me, I’m taking 3 months off, I can also wfh during consolidation phase, so my experience with precice 2 is very smooth and relaxed. However if you have to do it alone, or you can’t have someone helping you 5-6 months, precice 2 will make entire process much harder. It’s still doable, just much harder. Last year I went shopping for 1 hour with stryde just 1 week after the surgery. If you do it with Paley you can even go to Disney, universal studios, etc… This is how convenient stryde is. You can do almost everything by yourself without feeling exhausted.

I can second this, Im doing precise 2.2 right now and if you dont have a caretaker it will be nearly impossible to do it. Whereas with stryde or a weight-bearing-nail you could basically lead a normal life, even during the distraction phase. I still cant grasp all the stryde-diarys here that told us how hard it is...its just because they cant imagine what life with a non-weight-bearing nail would be like. Doing lengthening with a weight-bearing nail really isnt that much of a struggle. Apart from the first few weeks after surgery, where the pain should be identical.

[ReadRothbard]

I would honestly go for Guichet nail or Betzbone over Precice 2.

[zaozari]

If you want Stryde, wait for its return PLUS checking if it was animal tested, and 2 / 3 years of full cycle use in voluntary first patients/CLLs (insertion of nail, lenghtening,  consolidation, removal and a further suplementary period of bone "hardening"/full, heavy use).
After what so grossely happened to the nails, it's a necessary minimum precaution, I think.

[Masteryourlife]

If you want Stryde, wait for its return PLUS checking if it was animal tested, and 2 / 3 years of full cycle use in voluntary first patients/CLLs (insertion of nail, lenghtening,  consolidation, removal and a further suplementary period of bone "hardening"/full, heavy use).
After what so grossely happened to the nails, it's a necessary minimum precaution, I think.

I honestly hope for the best for the nitinail because its currently testing on humans and the period of study is also after nail removal ending in 2022 .
If it goes well, which I hope with my whole soul , we will have a safe magnetic wb nail !
Nuvasive proved that a big and known company does not equal good product .

[randomperson]

I have been thinking--how do people operate on their own with PRECISE during consolidation? Is it even possible? Let's say you finish the lengthening phase and return home, and you're alone--How are you suppose to get groceries, for instance? Drive? Go to the hospital?

Do you need to basically set your house up to operate like a disabled person? For instance, if you have only a bath/shower combo with a bath height of 16 inches, are you completely screwed for getting in and out of the tub? I'm having these questions. I don't know if you can do it alone during consolidation and after?

[Highest]

According to latest news from nuvasive Stryde or whatever it's replacement is called is minimum 2023 release date.

[SuchLL]

I have been thinking--how do people operate on their own with PRECISE during consolidation? Is it even possible? Let's say you finish the lengthening phase and return home, and you're alone--How are you suppose to get groceries, for instance? Drive? Go to the hospital?

Do you need to basically set your house up to operate like a disabled person? For instance, if you have only a bath/shower combo with a bath height of 16 inches, are you completely screwed for getting in and out of the tub? I'm having these questions. I don't know if you can do it alone during consolidation and after?

I know some people just stay in the hotel for another 2-3 months until fully consolidated and then go back home.

[ryand2021]

I have been thinking--how do people operate on their own with PRECISE during consolidation? Is it even possible? Let's say you finish the lengthening phase and return home, and you're alone--How are you suppose to get groceries, for instance? Drive? Go to the hospital?

Do you need to basically set your house up to operate like a disabled person? For instance, if you have only a bath/shower combo with a bath height of 16 inches, are you completely screwed for getting in and out of the tub? I'm having these questions. I don't know if you can do it alone during consolidation and after?

It's possible as long as you have money -

Stay in a hotel that has a shuttle service to the hospital and offers an accessible unit (at least at Paley).

Hire a caregiver 1-2 hours a day to perform housekeeping activities, clean up, etc.

Uber Eats all of your meals, which can be delivered to your door.

Avoid going anywhere except the hospital PT. Keep your daily schedule as routine as possible.

In general, once you learn how to use toilet independently and move in & out of hotel entrance on a walker (or wheelchair), you can live on your own.

[world]

It's possible as long as you have money -

Stay in a hotel that has a shuttle service to the hospital and offers an accessible unit (at least at Paley).

Hire a caregiver 1-2 hours a day to perform housekeeping activities, clean up, etc.

Uber Eats all of your meals, which can be delivered to your door.

Avoid going anywhere except the hospital PT. Keep your daily schedule as routine as possible.

In general, once you learn how to use toilet independently and move in & out of hotel entrance on a walker (or wheelchair), you can live on your own.

It will work unless something goes wrong. The caregiver doesn't come some day. Your phone gets broken. Your credit card expires or gets blocked for some reason. You get locked out of some online account.

If you have someone you can SOS call to help you then it's all good, but if you are truly by yourself then I dunno, all this detailed planning might not go as expected. At the end of the day you should be able to make some food for yourself and not starve.

[ryand2021]

It will work unless something goes wrong. The caregiver doesn't come some day. Your phone gets broken. Your credit card expires or gets blocked for some reason. You get locked out of some online account.

If you have someone you can SOS call to help you then it's all good, but if you are truly by yourself then I dunno, all this detailed planning might not go as expected. At the end of the day you should be able to make some food for yourself and not starve.

Your mobility is not "that bad". That being said, by week 4 you should have no problem performing easy tasks such as opening a door, microwaving food and taking something light from a fridge, as long as both legs are standing on the ground. You probably can't clean trash, but that's not a time-sensitive task.

I'm not sure about other doctors, but Paley works with a few caregiver companies and they are very professional and communicative. The hotel is also well experienced to host LL patients. Of course some sort of preparation is needed but unless a complete disaster happens (your walker is broken + cell phone is broken + hotel phone is broken + wheelchair is broken + hotel office chair is broken + laptop is broken all at the same time), you should have no problem getting attention.

Plenty of LL patients did P2.2 before 2018 on their own.