Topic: Quadrilateral Lengthening with Dr. Paley (Read 282844 times)

DoingItForMe · « **Reply #63 on:** November 23, 2015, 07:59:55 AM »

Quote from: Iamready on November 22, 2015, 11:43:01 AM

Unfortunately for someone like me, who is alone, having no handicap doors that open with a button or auto is a big issue and so is the carpeted and sloped flooring. Getting down the hall to my room could be an obstacle on American Ninja Gladiator.
Have a good one, hope I provided some value.

Get an electric wheelchair like I did if you have the money. I got a $2000 one called Smart Chair, but there are some cheaper brands. Works amazing. It's narrower, so you can fit in smaller spaces. And you control everything with just one arm instead of two, so it frees up one hand to open doors and close doors and hold plates. It's 50 lbs and foldable, so it can go into a car's trunk. Bring it home, because you're going to still need it when you go home. This lets me go almost anywhere, as I can put it in the trunk of my car, and then go almost anywhere, as long as there is someone to put it in and take it out of the trunk.

Iamready · « **Reply #64 on:** November 23, 2015, 10:29:06 PM »

I was going to get one but my PT recommended against getting one. Something about them being too heavy. I'll ask another PT about it tomorrow, Thanks

Penguinn · « **Reply #65 on:** November 23, 2015, 11:55:11 PM »

$2000 for a chair! God damn.

Ghostfish · « **Reply #66 on:** November 24, 2015, 12:42:26 AM »

Hi DoingItForMe

I think that is a good idea! Especially for QLL patients, it could be a saviour. I will definitely consider it when I will do ll in the future. Perhaps, it can be resold in a lower price once I finish it.

Thank Iamready for the update. Your X rays look great! It shows clearly you are getting taller! Hopefully, there is a better way to improve the comfort for your boots. I may also need to know it if I do tibia in the future.

Take care!

Iamready · « **Reply #67 on:** November 24, 2015, 02:30:20 AM »

I'll probably buy the wheelchair tonight. I remember almost falling backwards on the hill going from St. Mary's to the Kimmel building. It took all my strength to keep from falling. It's also very easy to tip over. I'm moving out of Homewood Suites and into an apartment at City Center. I was able to get a 6 month lease. After seeing the video of this wheelchair it's going to help me with all the taxi trips to the hospital and back with that convenient folding ability.

Iamready · « **Reply #68 on:** November 24, 2015, 02:33:39 AM »

http://www.amazon.com/Smart-Chair-Electric-Wheelchair/dp/B00EBXBC4K/ref=pd_sim_sbs_121_1?ie=UTF8&dpID=4107wqFTCKL&dpSrc=sims&preST=_AC_UL160_SR160%2C160_&refRID=1JMWM2W35TF7554HP7RM

This is it?

chineseguy · « **Reply #69 on:** November 24, 2015, 03:53:59 AM »

how is the pain? it is painful? how painful? can you sleep better?

Iamready · « **Reply #70 on:** November 24, 2015, 03:58:33 AM »

The pain when i wake up is excruciating. Other than that it's fantastic.

DoingItForMe · « **Reply #71 on:** November 24, 2015, 04:36:58 AM »

Quote from: Penguinn on November 23, 2015, 11:55:11 PM

$2000 for a chair! God damn.

There are cheaper ones. I went with one of the more expensive ones because of shipping time and features. The one I have has a long battery life. During day-to-day use, I only recharge maybe once every 2-3 weeks. It has a 10 hour battery life with a 3 mph speed limit. So that's about 30 miles in one charge.

This is the one I use:
http://www.amazon.com/gp/product/B00EBXBC4K/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00EBXBC4K&linkCode=as2&tag=lilefo-20&linkId=UBS36HE3JSS7JULD

It's the cheapest I can find for the foldable electric wheelchair. All of them seem to be built similarly from China, so I doubt that it matters which brand you buy. But this one was the cheapest version of it that I could find.

Although it comes with a small mesh basket underneath it, it doesn't have any cup holders, which is a necessity if the cup has no secured lid. This is the cup holder I have on mine:
http://www.amazon.com/gp/product/B001YJGDY8/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B001YJGDY8&linkCode=as2&tag=lilefo-20&linkId=2DQBYR6JXP35K2TB

Here's one that's $1400 that I saw someone else use. It needs to be disassembled to fit in a trunk, but it says that it's easy to disassemble. I asked that person how she liked it, and she said it worked great. It also has a 10 hour battery life.
http://www.amazon.com/gp/product/B00N501YSE/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00N501YSE&linkCode=as2&tag=lilefo-20&linkId=P5WGG54NGU4C2BMO

The above two ones are very small and have 360 motion. That's what I like about them. You can go almost anywhere a normal person can go without much trouble - except for stairs. The ones that I don't like are the ones where you have to back-up to make a 180 turn. It's very annoying in narrow aisles and hallways. And the loud beeping noises when you reverse is annoying. The ones above don't have annoying beeping noises.

Here's a $670 one that's requires disassembling to fit in the trunk and isn't as narrow and nimble as the other two:
http://www.amazon.com/gp/product/B00GPGKN4G/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00GPGKN4G&linkCode=as2&tag=lilefo-20&linkId=WNAUTYRO7VMGPTW5

Anyway, I wish I knew about these electric wheelchairs sooner, because I use them every day and they work great. Just freeing up one hand while moving in a wheelchair is a game changer, especially for doors that don't open by themselves. My standard wheelchair gets almost no use from me now.

DoingItForMe · « **Reply #72 on:** November 24, 2015, 04:44:43 AM »

Quote from: Iamready on November 24, 2015, 02:30:20 AM

After seeing the video of this wheelchair it's going to help me with all the taxi trips to the hospital and back with that convenient folding ability.

If you do end up getting the same chair I bought, here's some tips I learned for the past few months of using it: It doesn't fold and unfold that easily for newbies, so you have to teach them how to do it. You basically just have to tell them rotate the arms rests back, and to push the two black tabs in the back together to unlock the chair and make it foldable. When you unfold it, you just pull it apart without pushing any tabs or anything. Sometimes the smaller gray wheel gets stuck on the wheelchair while folded and prevents the wheelchair from unfolding. This confused a few of my taxi drivers. To fix it, you just have to move the grey wheel so that it is parallel to the chair. If it's slightly tilted, it might block the chair from unfolding.

Iamready · « **Reply #73 on:** November 24, 2015, 12:43:39 PM »

it's coming. next week

Iamready · « **Reply #74 on:** November 24, 2015, 08:55:25 PM »

Is there a way to keep people from stealing it? They leave our wheelchairs in the waiting room during PT and someone might like it too much and ride off with it. How did you deal with that? Take the battery out?

DoingItForMe · « **Reply #75 on:** November 24, 2015, 10:00:54 PM »

Quote from: Iamready on November 24, 2015, 08:55:25 PM

Is there a way to keep people from stealing it? They leave our wheelchairs in the waiting room during PT and someone might like it too much and ride off with it. How did you deal with that? Take the battery out?

People generally don't steal other people's wheelchairs. I've left a few things in that PT waiting room that's never been stolen before. There's security cameras in that building, and stealing a wheelchair from a handicap person would be a new low for any criminal. But if you want to be careful, I'd say that the battery is the most expensive part of the chair that's removable. There are two sticks of batteries on either side of the chair, and they can be easily removed. Only issue is that the batteries are pretty heavy so it's not like something you can just sling onto a backpack and walk. The easiest way to disable the chair and prevent it from being used is to just take out the joystick controller. It's really light and detachable.

Oh, and some more tips: Don't keep your feet and toes in front of the foot rest when you're close to a wall. There have been a few times when I've squished my toes between the foot rest and some wall, and it hurt a lot - like closing a door on your toe. In general, try not to drive so close to a wall, like in cases of elevators.

Also, the walker they give you isn't easy to carry around with the electric wheelchair. Instead, I have these:
http://www.amazon.com/gp/product/B005I5OP6M/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B005I5OP6M&linkCode=as2&tag=lilefo-20&linkId=U52XE3CULK7MI537

I was reluctant to use these crutches because I was scared of falling over, but after using these, I don't use the walker anymore. They're much lighter than the walker (a few ounces vs 9 lbs), and they fit underneath the smart chair. I can't go up and down stairs with the walker, but I can with crutches. Also, I move a bit faster with these crutches than the walker. By putting these crutches underneath my wheelchair, they also act as bumpers to keep myself from hitting the wall with my feet, since the crutches protrude out further than your feet do.

Iamready · « **Reply #76 on:** November 25, 2015, 03:23:10 AM »

thanks . pt always emphasizes that we keep our legs straight out instead of bended for a hamstring stretch. is this possible with the wheelchair?

DoingItForMe · « **Reply #77 on:** November 25, 2015, 04:38:28 AM »

Quote from: Iamready on November 25, 2015, 03:23:10 AM

thanks . pt always emphasizes that we keep our legs straight out instead of bended for a hamstring stretch. is this possible with the wheelchair?

Unfortunately no. I usually rest my legs on a table or chair when I need to keep them straight. I wouldn't recommend sitting on the wheelchair for long periods of time if you don't have a place to straighten out your legs. Usually you can rest your legs on the chairs inside or outside the PT waiting room and on the chairs in the dining hall if you're still at Homewood. Sometimes I rest my legs on one of the bars in the walker if I can't find a chair.

Iamready · « **Reply #78 on:** November 25, 2015, 05:41:22 AM »

good one. bars of the walker it is.

Iamready · « **Reply #79 on:** November 25, 2015, 08:17:38 PM »

Ok so I was able to rent the wheelchair in Miami for the week. There is a big design flaw. Do you have the version with the grey wheels or the black wheels? After closing up the wheel chair it takes way too much force to open itback up because the rims of the bulkier new grey wheels gets caught on the bottom frame of the chair and requires potentially damaging the battery casing and the frame of the chair. I'm guessing you have the older version with black wheels because when we tried that there were no issues closing and opening the chair. I simply can't drop this much money on something with such a poor design error. We had the owner of the shop open up another wheelchair and it had the same issue so it wasn't because of a single chair defect. Other than that the chair is fine but I might have to go with a more expensive one that is a bit better built.

Iamready · « **Reply #80 on:** November 25, 2015, 08:37:14 PM »

I think i'm convinced the manufacturer in China made a recent change to the front wheels of the wheelchair without thinking about how it would affect the opening and closing of the chair and how it fits with the frame. I'm going to give the main company a call- as opposed to the reseller they referred me to- on friday to see if I can get a unit with the old wheels that seem to open and close with no issue. Hopefully they still make units with the smaller black wheels.

DoingItForMe · « **Reply #81 on:** November 26, 2015, 05:45:42 AM »

Quote from: Iamready on November 25, 2015, 08:17:38 PM

Ok so I was able to rent the wheelchair in Miami for the week. There is a big design flaw. Do you have the version with the grey wheels or the black wheels? After closing up the wheel chair it takes way too much force to open itback up because the rims of the bulkier new grey wheels gets caught on the bottom frame of the chair and requires potentially damaging the battery casing and the frame of the chair. I'm guessing you have the older version with black wheels because when we tried that there were no issues closing and opening the chair. I simply can't drop this much money on something with such a poor design error. We had the owner of the shop open up another wheelchair and it had the same issue so it wasn't because of a single chair defect. Other than that the chair is fine but I might have to go with a more expensive one that is a bit better built.

Yea, I mentioned this in one of my previous replies. The grey wheel gets stuck if it's tilted, because the screw gets stuck. If it's stuck, the easiest fix is to just untilt the wheel until both of them are parallel again. Make sure that the screw for the grey wheel isn't touching the frame, and it'll unfold easily. The frame/battery won't get damaged.

Also if the chair doesn't fold fully, it's because you have the grey wheels backwards. Rotate them 180 degrees so that the longer part of the screw is on the outside rather than the inside. It's really not difficult to figure out once you know what's up. That's why I warned you that newbies will have trouble unfolding the chair.

I wouldn't recommend getting a smaller wheel. You want more traction. A smaller wheel might have more trouble getting over taller bumps.

Iamready · « **Reply #82 on:** November 27, 2015, 06:51:58 PM »

Ok thanks for the tips. I researched wheelchairs and there is nothing I can find that has as much positive feedback so I got a black friday special and will be returning my rental on Saturday. Did you tip the uber drivers extra for sotring the chair for you because I can imagine it being difficult to lift. BTW do you choose uber XL?

DoingItForMe · « **Reply #83 on:** November 27, 2015, 10:43:42 PM »

Quote from: Iamready on November 27, 2015, 06:51:58 PM

Ok thanks for the tips. I researched wheelchairs and there is nothing I can find that has as much positive feedback so I got a black friday special and will be returning my rental on Saturday. Did you tip the uber drivers extra for sotring the chair for you because I can imagine it being difficult to lift. BTW do you choose uber XL?

UberX is fine. The chair fits in most trunks once folded. You don't have to tip your Uber driver. It's already included in the fare, and Uber drivers are used to helping people put things in their trunk. The chair is only 50 lbs. That's around the same weight as a large checked-in luggage. If they can't lift it, you can remove the two batteries to separate the weight. If you want to be nice, you can tip your driver extra. They'll remember it if you ever get them again.

Iamready · « **Reply #84 on:** November 28, 2015, 02:30:19 AM »

I've been having some serious pain lately. Mostly muscle spasms in the left calf and nerve pain in the ankles. Sleeping more than 2 hours at a time is impossible for the past week. This is all coming back to the time I asked the doctors about a time release medicine. I don't think I should feel ashamed for asking for a time release medicine to get an uninterrupted sleep. I really wish Dr.Paley was who we met with on a bi weekly basis rather than his under studies. They even lowered my oxycodone dosage to 5mg every 6 hours from 5mg every 4 hours without warning me when I got my refill. It's irritating especially when your someone like me who plays everything by the book and has to deal with agony during the nights.

DoingItForMe · « **Reply #85 on:** November 28, 2015, 02:41:32 AM »

Quote from: Iamready on November 28, 2015, 02:30:19 AM

I've been having some serious pain lately. Mostly muscle spasms in the left calf and nerve pain in the ankles. Sleeping more than 2 hours at a time is impossible for the past week. This is all coming back to the time I asked the doctors about a time release medicine. I don't think I should feel ashamed for asking for a time release medicine to get an uninterrupted sleep. I really wish Dr.Paley was who we met with on a bi weekly basis rather than his under studies. They even lowered my oxycodone dosage to 5mg every 6 hours from 5mg every 4 hours without warning me when I got my refill. It's irritating especially when your someone like me who plays everything by the book and has to deal with agony during the nights.

No. You DON'T want Dr. Paley for the bi weekly meetings. Trust me on this. He's going to say the same stuff the other doctors will say anyway. But the difference is that Dr. Paley has a 3-6 hours wait. Yes, you heard me right. I had an appointment with him once at 2 pm. I didn't see him until around 6 pm. When I meet with Dr. Packer, it's usually less than an hour wait.

And yes, it sucked when they lowered my Oxy dosage as well. They're going to keep lowering it every 2 weeks. Savor your oxycodone. It's going to be more scarce as time goes on. Try to only take it when you can't bear the pain. For muscle spasms, take valium.

Lack of sleep is a common complaint in the diaries I've read. Sucks that they don't give you Oxycontin. That's what I used to help me sleep at night.

Iamready · « **Reply #86 on:** November 28, 2015, 02:48:23 AM »

The pain is real! Hah I guess I'm really in for the journey of a lifetime. What I don't understand is when I read peoples diaries like Agrios and he boasts about no pain and no problem sleeping. How is it possible we got the same surgery? There is definitely pain in the tibia lengthening and for me it all began during week 3 which was supposedly the time when pain was supposed to subside. All I can do is become a stronger person, it's tough and I just wish there were more tibia lengthening journals I could refer to for advice.

DoingItForMe · « **Reply #87 on:** November 28, 2015, 08:01:28 AM »

Quote from: Iamready on November 28, 2015, 02:48:23 AM

The pain is real! Hah I guess I'm really in for the journey of a lifetime. What I don't understand is when I read peoples diaries like Agrios and he boasts about no pain and no problem sleeping. How is it possible we got the same surgery? There is definitely pain in the tibia lengthening and for me it all began during week 3 which was supposedly the time when pain was supposed to subside. All I can do is become a stronger person, it's tough and I just wish there were more tibia lengthening journals I could refer to for advice.

I believe it's real. I went through the same pain. Never felt level 10 physical pain in my life until this surgery. And that includes getting hit by a car. Oxy was very rare for me as well, and I was popping those things while the other teenaged patients even STOPPED taking them. So my guess is that the younger you are, the less pain you feel. But even then, it depends on how your body reacts and how much your soft tissues allow you to stretch. Everybody's body is different. Anyway, talk to the doctors about it, and maybe they might let you keep the same dosage amount for the next prescription. Or maybe you'll get lucky and they'll increase your dosage.

Iamready · « **Reply #88 on:** November 28, 2015, 02:54:38 PM »

Hey by the way thanks for all the help. Just want to say I appreciate it.

DoingItForMe · « **Reply #89 on:** November 29, 2015, 01:42:00 AM »

Quote from: Iamready on November 28, 2015, 02:54:38 PM

Hey by the way thanks for all the help. Just want to say I appreciate it.

No problem. Hang in there. Just keep in mind that the pain will go away once you stop lengthening. Keeping that in the back of my mind was what got me through the whole lengthening. Also, enjoy the Oxy when you take them. You probably will never get any more for the rest of your life. They are some really good legalized highs. That's if euphoria is one of the side effects you have from taking 2 at a time. It was for me, and it was great.

Iamready · « **Reply #90 on:** November 29, 2015, 02:59:47 AM »

I get a bit pain relief but no high yet. maybe as the pain settles i'll start feeling it.

DoingItForMe · « **Reply #91 on:** November 29, 2015, 07:30:29 AM »

Quote from: Iamready on November 29, 2015, 02:59:47 AM

I get a bit pain relief but no high yet. maybe as the pain settles i'll start feeling it.

It's not a high like weed unless you take a high dosage. It's more like a high where you're just really happy and everything just feel alright. You might not notice it when you're high because you probably think it's normal. I only noticed it after I went cold turkey on Oxy - don't ever do that btw. The difference between when I was on Oxy and not was like night and day. When I'm off Oxy, it feels like everyone's against me and I have a very low tolerance for people's behaviors around me. When I'm on it, I feel like I'm in a happy Disney movie where everything's all wonderful and nice. Also to get the high, I took 2 Oxycodones at a time, plus one oxycontin, and plus 2 extra strength tylenols. Oxycontin is 10 mg, so combined with 2 Oxycodones, that's 40 mg total. So for you to get high on Oxy without Oxycontin, you'd probably have to take 3-4 5 mg Oxycodones at once. That might be why they don't give you so much Oxy. The stuff can be highly addictive because the high makes you feel so good. But if you have a high tolerance for it, then it probably will do nothing for you.

Iamready · « **Reply #92 on:** November 30, 2015, 09:32:27 PM »

I feel like I've failed. Today I went in for a check up after thanksgiving weekend and told Paley about my pain and he told me I was too tight and needed to slow down to .5mm a day until the next check up in 2 weeks. I also feel like the Paley Center has failed me by not communicating the proper exercises I should have been focusing on. I've been busting my ass and going through lots of pain and I deserve better communication between the physical therapy team and the doctors. There is a huge disconnect and it's absolutely frustrating to be in this position.

Limb Lengthening Forum

Author Topic: Quadrilateral Lengthening with Dr. Paley (Read 282844 times)