Topic: Quadrilateral Lengthening with Dr. Paley (Read 282845 times)

Iamready · « **Reply #31 on:** November 05, 2015, 03:27:40 AM »

I mentioned the Oxycodine to one of the doctors today and she told about how they won't prescribe it because it is highly addictive and etc etc. She just told me to add tylenol to the mix. Also since it's my first 2 weeks they want me to ride it out. Well, if the pain gets horrible about the time i'm lengthening my femurs and tibia's simultaneously i'll bring it up again but for now she mentioned I could use 2 pills instead of one if really needed. I'm really conservative with my pill usage because I can for see lots of pain after my femurs break. Doing a number 2 really takes a toll on my tibia's I feel shoots of lightning down the areas where the bones were broken. Does this happen with the femurs as well?? Thanks bud and a good recovery to you.

DoingItForMe · « **Reply #32 on:** November 05, 2015, 05:08:31 AM »

Shoots of lightning? No. That sounds like nerve pain, and you should definitely mention that to the doctors if you haven't already. I've only had nerve pain when overstretching during PT. I'm a bit lucky in that regard, because another patient had nerve pain in the Tibs as well, even though she did femurs. But eventually it went away when she slowed down the lengthening.

I'm not surprised that they didn't prescribe oxycontin to you. That stuff is really good. Addictive, but really good. But double up on Oxycodone if the pain is too much. You can always be more conservative with your pills later on. For example, for my first two weeks, I took 2 Oxycodones per 4 hours. Along with a Oxycontin per 12 hours. Along with 4 advils per 4 hours (don't take Advil like I did.).

Afterwards, I started taking only 2 Oxycodones only when I feel a lot of pain, and only take 1 all other times. Eventually towards the end, I only took one oxycodone, except for when I go to PT. And I stopped taking Oxy at night. Finally when I stopped lengthening, I quit all pain meds. A week after lengthening, almost all pain goes away.

As for Tylenol, I take a 8 hour release one. They're 650 mg each. You're allowed to take up to 4,000 mg per day. So I only take two pills per 8 hours (1,300 mg per 8 hours). Times 3, that's 3,900 mg per day.

Anyway, you're really brave to do all 4 sections at the same time. Man, I did only femurs and I already thought that that was too much.

PaleyPatient · « **Reply #33 on:** November 06, 2015, 04:44:18 AM »

Wow ur very brave to lengthen femur and tibia at the same time! I'm lengthening my tibia also with paley atm. I think I saw you a few times. I'm a private person so I prob won't initiate any convo, we'll have like a silent nod of acknowledgement lol. But if you have questions feel free to message me here.

As for the shooting pain, try to stand as much as you can while holding onto the crutches. My therapist told me the bone needs to get use to having the precise in there so the more you stand the faster you will adapt. Its going to hurt but trust me it gets easier.

The first week sucks. After that will be very little pain. I talked to 4 other ppl doing their tibia and we pretty much felt the same during the first weeks.

Iamready · « **Reply #34 on:** November 06, 2015, 01:48:34 PM »

Hi buddy. What nationality are you. It might help narrow you down next time I see you to speak to you. I'm quite reserved at first and I do not like disturbing people. If you don't feel like describing yourself here on the thread go and and pm me so we can initiate conversation. Your likely see me with my father since he's taking care of me till Tuesday. Thank you.

PaleyPatient · « **Reply #35 on:** November 06, 2015, 06:52:20 PM »

Quote from: Iamready on November 06, 2015, 01:48:34 PM

Hi buddy. What nationality are you. It might help narrow you down next time I see you to speak to you. I'm quite reserved at first and I do not like disturbing people. If you don't feel like describing yourself here on the thread go and and pm me so we can initiate conversation. Your likely see me with my father since he's taking care of me till Tuesday. Thank you.

gotcha will do.

DoingItForMe · « **Reply #36 on:** November 06, 2015, 08:35:29 PM »

I suggest making friends with other patients, because it's a long journey, and it would be much easier when you have support from other patients.

glenn · « **Reply #37 on:** November 07, 2015, 09:24:21 PM »

Quote from: Iamready on August 26, 2015, 09:11:37 PM

Hi, just a quick update. I had my consultation and I will my surgery will take place at the end of October. The first surgery will be for the tibial lengthening and will be followed by another surgery at the end of November for the lengthening of my femurs.

Hey fellow "Quadie"

I'm curious, is there a reason Paley recommended you do tibias first, then femurs, for quadrilateral lengthening?

I'm doing quads as well, but I opted to do cross-leg (one femur and the other tibia at the same time). I think it's worked out for me so far: when my femur hurt (from 1cm to 3cm), my tibia had no trouble; when I was battling ballerina (4cm to 5cm) my femurs were fine; from 5+ cm I worked my femur while my tibia was already finished and consolidating. So at each stage I was able to stagger my concentration on each affected part.

Do you think you might possibly stop doing quads if you feel you've gained enough with tibs alone?

Have a good recovery!

Ghostfish · « **Reply #38 on:** November 08, 2015, 02:14:23 AM »

Hi glenn

Are you doing Qll in Paley's hospital? If not, where are you doing it? I read that those doctors using Fitbone seem to do Qll in cross leg.
I am very glad that you have been doing great. Apparently you have gained quite a lot of height. How much did you increase your height?
Hope you recover very well.

glenn · « **Reply #39 on:** November 08, 2015, 02:49:12 AM »

Hi Ghostfish,

I don't want to hijack Iamready's thread, but to quickly answer your question: I am in the middle of first-stage doing quads with Dr. Monegal using Fitbone. I have done 5 cm in tibia and 6.4 cm so far in femur. If you have any questions for me please feel free to ask in my diary thread instead, thanks!

I am not a Paley patient. I was just asking Iamready for his perspective since he is doing quads, like me.

Ghostfish · « **Reply #40 on:** November 08, 2015, 04:04:28 AM »

Hi glenn

Thanks for telling me your story. I probably missed your diary, so if I have additional questions or comments about your journey, I will write it on your diary.

Good luck! glenn

Iamready · « **Reply #41 on:** November 09, 2015, 08:56:11 AM »

Hello readers. I am making fantastic progress. I've lengthened 5.5mm so far. My pain is much more manageable and I'm fully independent with one exception. I need to hire someone to help me work the ERC machine and align it properly 3 times a day. My boots may be defective so I'm going to speak to the team about their fit do I can get an optimal use from them. Moving from the hospital and into the paley institute is a complete change of culture. The paley employees are all accommodating,kind, knowledgeable and I look forward to each of session. It's time for sleep now so that's all. I usually nap in 3 hour increments throughout the day. Usually between lengthenings. It works great. Have a good one.

Ghostfish · « **Reply #42 on:** November 10, 2015, 04:15:15 AM »

Hi Iamready

It is so great to hear that you are making fantastic progress and your pain is manageable.
So do you need to wear the boots until you finish lengthening or even consolidation? What is the purpose of that boots? kind of support? Hope you get your boots fixed or changed.

Have a good day!!

inconel · « **Reply #43 on:** November 11, 2015, 07:08:47 PM »

I am also 1.65 cm in height that want to add 10cm trough both tibia and femur lengthening. I read in this forum(doesn't remember where but it was pinned thread) that doing all four limbs at the same time will end in a disaster and that most doctors won't even consider this. there is a change that made Quadrilateral Lengthening less dangerous? there is drawbacks for Quadrilateral Lengthening other than risks and costs?.

Iamready · « **Reply #44 on:** November 11, 2015, 07:55:57 PM »

those risk are for those who do all for segments during 1 surgery. my surgeries are scheduled 3.5 weeks apart.

inconel · « **Reply #45 on:** November 11, 2015, 09:33:49 PM »

Quote from: Iamready on November 11, 2015, 07:55:57 PM

those risk are for those who do all for segments during 1 surgery. my surgeries are scheduled 3.5 weeks apart.

how it goes? one surgery for both femur bones and than one for both tibia bones after 3 weeks?. and after that you lengthen all four bones at the same time?

Alu · « **Reply #46 on:** November 11, 2015, 09:38:26 PM »

Yes that's how it works, but it starts with Tibia first because lengthening of the tibia is slower. I would guess the reason Paley does it after 3 weeks I so that when you start lengthening your femurs they rapidly catch up to the tibia's length and therefore both bones could consolidate roughly around the same time to each other.

Iamready · « **Reply #47 on:** November 15, 2015, 02:39:07 AM »

Quick Update
Today I am 1 cm taller. Pain is manageable. I mainly use the pain medicine for night time because the boots are difficult to sleep with and wake me up every hour.

I will post x ray photos soon.

My father left about a week ago. I am doing physical therapy with the Paley team Monday-Saturday. Saturday therapy is extra but I want to do all that is in my power to do this correctly.

I also have a nurse that comes 3 times a day for 1.5 hours. She stretches me for 1 hour and then spends the rest of the time lengthening me with the ERC machine and cleaning up. Constipation is an issue. I won't go into details but I have been to the depths of Dante's Inferno.

Have a nice night all and stay strong and proud,

Ghostfish · « **Reply #48 on:** November 16, 2015, 04:22:04 AM »

Hi Iamready

Thanks for the update! Congrats on your achievement of 1 cm taller! 1 cm about 2 weeks seems quite good progress on tibia. Wish you continue this until the end of lengthening.
Sorry for your pain on the constipation. Is this a common problem in cll patients? Hope it goes away soon.

Take care!

Iamready · « **Reply #49 on:** November 16, 2015, 05:41:01 AM »

The constipation is a side of effect of pain killers. I take very little but still, it's enough to make me dread the number 2.

DoingItForMe · « **Reply #50 on:** November 16, 2015, 08:53:44 AM »

Quote from: Iamready on November 16, 2015, 05:41:01 AM

The constipation is a side of effect of pain killers. I take very little but still, it's enough to make me dread the number 2.

Are you taking any laxatives? Also, try to eat a lot of meat. You need the calories/fat/proteins to heal up faster anyway. I ate a lot of meat at the hotel, and skipped most of the salads. This ensured that I had a healthy flow of number 2. At one point it became too much, and ended up being diarrhea. That's when I put back more salads in my diet.

If you order take out on the weekends, I recommend the Tuna Melt from Pronto's Pizza. So good.

alps · « **Reply #51 on:** November 16, 2015, 12:53:33 PM »

is it possible to get pain killers before LLing to see how your body will react to it?

constipation *can* be a big deal. it can ruin your food intake which is very important. what happens if you laxatives constantly for 2-3 months? you will become slightly addicted to it, but it should eventually subside, shouldn't it?

DoingItForMe · « **Reply #52 on:** November 16, 2015, 07:31:14 PM »

Quote from: SAD on November 16, 2015, 12:53:33 PM

is it possible to get pain killers before LLing to see how your body will react to it?

constipation *can* be a big deal. it can ruin your food intake which is very important. what happens if you laxatives constantly for 2-3 months? you will become slightly addicted to it, but it should eventually subside, shouldn't it?

No, the pain killers given are narcotics, and illegal to prescribe unless medically necessary. You only need laxatives in the beginning, until your body gets used to the pain killers. I had a lot of weird side effects from the pain killers from the beginning like hallucinations. But it went away after a few weeks.

Iamready · « **Reply #53 on:** November 17, 2015, 03:42:35 PM »

I'm just taking the stool softener that they prescribed. I've got some laxatives on hand for an emergency situation.

There's been a slight change of plan. I have moved the date of my femur lengthening to February 18.
This was a decision I made after hearing from the doctors that my goal of 12-13cm would only be achievable by a miracle.
After asking a few of the physical therapists about quadrilateral patients they also concurred that the most anyone achieved was 9.75 inches and the rest below that number. It doesn't benefit me to pay double the cost to achieve the same amount of length that could be achieved in a single femur operation so I am bettering my chances by waiting until my tibia's are finished lengthening and then immediately lengthening my femurs. I'll keep you posted.

I'd also like to mention that Homewood Suites is not very Wheelchair friendly. There are no automatic doors, and the hallways are carpeted and sloped, making the long road to my room an unnecessary adventure. I will be looking for an apartment soon and will eat the cost of transportation.

glenn · « **Reply #54 on:** November 17, 2015, 03:50:24 PM »

Quote from: Iamready on November 17, 2015, 03:42:35 PM

There's been a slight change of plan. I have moved the date of my femur lengthening to February 18.
This was a decision I made after hearing from the doctors that my goal of 12-13cm would only be achievable by a miracle.
After asking a few of the physical therapists about quadrilateral patients they also concurred that the most anyone achieved was 9.75 inches and the rest below that number. It doesn't benefit me to pay double the cost to achieve the same amount of length that could be achieved in a single femur operation so I am bettering my chances by waiting until my tibia's are finished lengthening and then immediately lengthening my femurs. I'll keep you posted.

I'd also like to mention that Homewood Suites is not very Wheelchair friendly. There are no automatic doors, and the hallways are carpeted and sloped, making the long road to my room an unnecessary adventure. I will be looking for an apartment soon and will eat the cost of transportation.

Hi Iamready,

Is that a typo? "12-13cm would only be achievable by a miracle"... That doesn't sound right, does it? Or did they mean "12-13cm in one segment?"

I'm doing cross-leg quadrilateral and I've successfully done one tibia (5cm) and one femur (7.2cm) without incident. I have yet to do the remaining segments, though. Did they say where the bottlenecks are, that would prevent one from achieving "12-13cm" ? Is there something that people should watch out for if they aim for those types of gains?

Iamready · « **Reply #55 on:** November 17, 2015, 04:38:43 PM »

That's not a typo. It may be achievable with another doctor and nail system but the Paley Center is very conservative and strict when it comes to safety concerns. I'm not in a position to dispute with a doctors statement so I'm doing what is best for my safety and for my ultimate goal.

glenn · « **Reply #56 on:** November 17, 2015, 04:50:18 PM »

Hi Iamready,

I was just wondering if there's some bottleneck I should watch out for. Thank you for your reply! Good luck on the rest of the process!

Glenn

alps · « **Reply #57 on:** November 17, 2015, 05:32:32 PM »

Quote from: DoingItForMe on November 16, 2015, 07:31:14 PM

No, the pain killers given are narcotics, and illegal to prescribe unless medically necessary. You only need laxatives in the beginning, until your body gets used to the pain killers. I had a lot of weird side effects from the pain killers from the beginning like hallucinations. But it went away after a few weeks.

what are the narcotics prescribed?

are you sure the body will get used to pain killers?

Ghostfish · « **Reply #58 on:** November 18, 2015, 03:50:00 AM »

Quote from: glenn on November 17, 2015, 04:50:18 PM

Hi Iamready,

I was just wondering if there's some bottleneck I should watch out for. Thank you for your reply! Good luck on the rest of the process!

Glenn

Hi Glenn

I think there is something you need to remember about what Iamreaady is doing. Although both of you are doing QLL, the original time frame is different between yours and Iamready's. Iamready was originally planning on doing qll in about 3 months of lengthening which is a common period of lengthening for one segment. However, according to Paley center, he realized that it would be very hard or even not possible for him to achieve 12-13 cm which is his original goal "IN 3 Months", since most of qll patients achieved less than 10 cm. Therefore, he decided to finish tibia lengthening and go to femurs right after, meaning that he will need additional 3 months or so for femurs. So taken together, he may need to take 5-6 months, which becomes kind of similar to your time frame. As far as I remember, you are doing one cross segments lengthening for 2-3 months and do another cross segments after that. So you will also need to spend 5-6 months like Iamready's modified plan. So overall you and Iamready will take a similar amount of time of lengthening for 12-13 cm or perhaps Iamready may be able to get one month or so faster than you. I am quite impressed by the determination of Iamready. He will definitely achieve his goal!!

glenn · « **Reply #59 on:** November 18, 2015, 04:12:00 AM »

Hi Ghostfish,

Ah, ok.. Totally didn't see the 12-13cm "IN 3 months" context. Thank you for the clarification! Makes a lot more sense now.

DoingItForMe · « **Reply #60 on:** November 18, 2015, 04:26:09 AM »

Quote from: SAD on November 17, 2015, 05:32:32 PM

what are the narcotics prescribed?

are you sure the body will get used to pain killers?

Says in my diary and his diary. Mainly Oxycodone.

I'm not sure if everyone's body will get used to the pain killers. But over time, you'll have less pain and thus need to take less pain meds, which means less side effects.

Iamready · « **Reply #61 on:** November 22, 2015, 11:43:01 AM »

Hello. This morning I am 1.75 cm taller- .69 inches. It looks noticeable but my legs are skinnier so it may be an illusion.
I'm uploading last weeks x ray photos as we speak. Pain is mainly after physical therapy and from wearing the dorsiflexion boots all day. If anyone has tips for making the boots more bearable please feel free to chime in. I had to get rid of my nurse for not showing up for my last appointment and also using her phone too much during our sessions. I also felt being stretched 3 times a day for an hour.5 was overkill as it was causing strain on my body and limiting my own time to train and stretch on my own.
I go to Paley's therapy Monday- Saturday. Saturdays cost extra and i'm usually the only patient there. Sleep is gradually getting better. This morning I woke up after 4 hours instead of 2. Usually I wake up once the pain killers run out. My parents are visiting so it will be nice to leave the hotel and visit south beach. Besides the pain, weekends can be a bore; i'm about ready to leave homewood suites and find a nice condo that is handicap friendly. 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.

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Author Topic: Quadrilateral Lengthening with Dr. Paley (Read 282845 times)