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Author Topic: Quadrilateral lengthening @ the Paley Institute - tibias 4cm + femurs 6cm  (Read 13919 times)

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OverrideYourGenetics

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Hey everyone,

Three weeks ago I had the PRECICE 2 implanted in my tibias by Dr. Paley and Dr. Robbins. Today I'm going into surgery for the femurs. I'm about 1cm taller so far.

It took way longer than I wanted to post my diary, and I do want to mention one of the factors - post-op, I wasn't really myself due to the constant pain, medication, and horrible sleep. Oxycodone gets some people high, but it has made me drowsy, foggy, and apathetic. Nothing was really interesting any more. Due to the pain and uncomfortable dorsiflexion boots that tibia patients must wear 22 hours/day in order to prevent drop foot ("ballerina"), I've been lucky to get a total of 3 hours of sleep, out of staying 12 hours in bed.

At some point around 2 weeks post-op, things did start to improve. Pain has decreased, so I needed less oxycodone. I got clearance to go into the pool, which made me feel more bipedal again. So here I am, catching up on my diary.

STATS
  • Male, late 30s, 5'5", 165 lbs - more about me and the motivation for undergoing CLL
  • Goal: 4cms in the tibias + 6cms in the femurs (4" total), or until stretching becomes too painful
  • Living in Silicon Valley, so getting CLL wasn't a problem, culturally speaking
  • I've even considered going public - see this background post for more details
  • Funded the surgery through loans
  • Bench press 1RM 205lbs
  • Squat 275lbs x 3

I've been doing a lot of research that I want to share here, but spreading it over many posts in a long thread isn't a good option. Since posts can't really be edited later, I've been summing up the research on my blog - https://overrideyourgenetics.com. I also have an Instagram feed with photos at https://instagram.com/overrideyourgenetics.

Stay tuned - I'll add X-rays after the femurs surgery today, and more details about how these first three weeks went. Any questions, feel free to ask!

PS: Here's a photo from my farewell party before the surgery, with my best friends.

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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

FormerKidd

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Congratulations.  I'm a current patient there too, although only doing femurs.  I wonder if I've seen you at PT.
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myloginacct

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It's here!

I hope everything goes smoothly with your femoral surgery, and that the next two weeks pass by faster.

Best of luck with everything, and remain strong.
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LAGrowin

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Love the blog OYG!   Glad to see you did so much research. You nailed everything.

Wish you the very best in recovery. Two simultaneous surgeries must be incredibly hard. I hope that all goes well with the femurs today.

I'm just about to hit 7 CM in the femurs with Dr. M., the added
height is great.  Time will pass before you know it.  The last phase has been tough for me. I can't wait until it's a very distant memory.

Please keep us posted, I know it gets hard at times.  Hope you're feeling well.
« Last Edit: April 05, 2018, 07:08:57 PM by LAGrowin »
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Android

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Excellent start, thanks for catching us up! Hope that your second surgery went well.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Optimistic1

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OverrideYourGenetics,

Congrats on finishing up the surgeries. I know it’s tough because I’m doing the same thing you’re doing. My surgeries were a month a part (2/15/18 & 3/15/18). I experienced none bone growth in my Tib/fib so I had to stop lengthening for 2 weeks. The reason for the none bone growth was because I was taking Ibuprofen without my doctor’s knowledge or approval. I didn’t know either and it was prescribed by my primary care doctor back at home. I’m taking my third x-ray on my Tib/Fib tomorrow so I’m hoping to see some bone growth. I’ve been worried.

The pain is getting better for me but I still can only sleep a total of 1-2 hours each night due to the pain on my left thigh. It’s so intense at night. My legs are so tight already and I’ve only lengthened less than 2 inches in total so far. How are you feeling now? Any nerve pain? Are you still on Hydrocodone or have already switched to OTC meds. I wish you the best and hope to hear from you and exchange tips with you so we can both get through this successfully.

Optimistic1
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The Dreamer

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OYG,good luck for your femur surgery
Finally a patient with verifications
Thanks a lot for documenting your experience with pics and videos,here there is the need for more true patients like you
Nice also the idea of Instagram account and blog
Keep us tunned
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●Do LL but do not let it obsess you

myloginacct

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Also, great idea of going for 4cm tibias and 6cm femurs, instead of 5cm+5cm, as I remember this being your plan before.
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MirinHeight

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wow this is great, looking forward to this diary

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

OverrideYourGenetics

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Dealing with pain
« Reply #9 on: April 09, 2018, 01:08:30 PM »

Thanks everyone for the encouragements! Feels good to be engaged with a community of folks who care.

I'm recovering from the femurs surgery and hope to be discharged today. The hospital stay has been less pleasant than for after the tibias, for all sorts of reasons. For example, I asked for exactly the same anesthesia protocol (caudal block) that worked great on the tibs. Got something else, where I remember being in the OR and bending over to receive a shot in my back. The IVs were placed worse, the food had ants in it one time (oh well, it's Florida) etc. But overall, the nurses were very nice. However, I've has some horrible pain episodes, in the tibias (pain 9/10), which I didn't have the first time. Probably because I continued lengthening but couldn't do any real PT?

@myloginacct: nice find! I'll definitely keep to 4+6 (or 4+5 to be super safe).

OverrideYourGenetics,

The pain is getting better for me but I still can only sleep a total of 1-2 hours each night due to the pain on my left thigh. It’s so intense at night. My legs are so tight already and I’ve only lengthened less than 2 inches in total so far. How are you feeling now? Any nerve pain? Are you still on Hydrocodone or have already switched to OTC meds. I wish you the best and hope to hear from you and exchange tips with you so we can both get through this successfully.

Same here - I've been getting very poor sleep after the tibias surgery, though I reached 4-5 hours in the two night prior to the femurs surgery. In the hospital it's been better thanks to the super comfortable bed, but I lost count of how much I slept.

I've had a lot of extremely intense nerve pain, that only toradol could reduce (I didn't bring CBD to the hospital). Problem with toradol is that it burns when they inject it via IV, it's not good for bone growth, and they don't prescribe it after discharge. So I'm prepared to have more extreme nerve pain episodes once I get to the hotel.

Speaking of tips, I've put together my research on pain - types and solutions. I'll paste it below but because this forum doesn't support rich text pasting, images and links will be lost. You can find the full and up-to-date version at

https://overrideyourgenetics.com/pain

--- raw text paste follows, refer to the link above for the full version ---
My biggest worries while deciding to undergo leg lengthening were the cost, the downtime, and the pain. LL Forum members have described the pain in rather scary terms:

"Never felt level 10 physical pain in my life until this surgery. And that includes getting hit by a car." -- DIFM

I can vouch for that. During the first two weeks after the tibias surgery, I've had several episodes of pain of such intensity that I cried and shivered, and no prescription or alternative meds would help. The only way around the pain was through it - letting it pass, sometimes for half an hour of level 9 pain.

I'm now in the hospital, recovering from the femurs surgery. I have access to, in theory, the latest in pain management from the leading American clinic specialized in orthopedic surgery. Yet, I've had two episodes of atrocious pain while in the hospital, one after lengthening the tibias, and another a couple hours ago, when my right leg started to hurt in places that were not operated on - right under the toes and up to the top of the foot. Nerve pain of such intensity that, with tears in my eyes, I asked the nurse if I could hold her hand while the toradol IV made its way into my system. The nurse was out of ideas. There was nothing more they could do. During the first episode, I ended up taking morphine.

If you asked me at that point, "Is this the best you could do for your life with $175k and 6 months of time off?", the answer would be "Absolutely NOT!". But the human brain (or at least mine) has this (in)ability to remember extreme pain as a so-called "declarative memory", e.g. "I broke my leg when I was 10, and the pain was very intense". But we can't really experience and truly feel that pain again on demand.

So if you ask me now, as I'm writing this a couple hours after that excruciating pain episode, "Knowing what you know now, would you still choose to do leg lengthening?", my answer would be more moderate: "Maybe not, now that I know how bad pain can get, and that I have to spend 4 months with pain episodes like that, and sleep horribly every night".

And if you asked me if I'd do it in 3 months from now, when the distraction phase ended and the pain went away (save for PT), I might even say "Yes, I'd do it". Funny how the mind works.

The moral of the pain story

While deciding to undergo CLL, ask yourself if you want to do it in a moment of really bad pain. Write the answer down. If you do undergo CLL, remember than pain does pass, and it becomes a theoretical memory of the past.

Types of pain and how to cope with them

So far in my quadrilateral leg lengthening journey, I've encountered a few different types of pain.

Muscle/bone/tendon pain

These come from your bones being fractured, and from the soft tissue recovering and lengthening. They're relieved pretty well by opioids (narcotic) analgesics like Oxycodone, Dilaudid, or combinations of opioids and non-opioids (acetaminophen) like Norco or Percocet.

These medications are available by prescription only, and carry a set of side effects. Oxycodone for example has made me constipated and apathetic (and in combination with other types of pain it doesn't touch, borderline depressed). You can also build tolerance, and there is a small risk of addiction (see this study, which concludes that

"The clinical studies referred to above indicate that opiate addicts and pain patients are largely separate populations and that opiate addiction due to appropriate medical management of pain is rare."

Unfortunately, this risk has been blown out of proportion and misinterpreted, such that the Paley Institute is reluctant to prescribe too many opioids, and plain refused to prescribe me extended-release oxycodone (aka Oxycontin - which is what helped LL Forum member DIFM get decent sleep at night when he did LL in 2015).

Another problem with these opioids is that they take at least 30 minutes to kick in (and up to one hour), and only last for 3-5 hours. In the hospital, I was able to request a 4-hour schedule for Dilaudid, but beware that if you report a low pain level (e.g. 2) when the nurse comes to offer the pain killer 4 hours after the previous administration, they're obligated to delay it until your pain level increases. Thus it makes sense to pay close attention to your pain level, and call the nurse as soon as it starts going up. Remember, it takes at least 30 minutes for the medication to start working, and you don't want to spend those 30 minutes in pain level 6-7.

Once you're discharged from the hospital, you can administer the meds on your own schedule, but beware that,

* You'll have a limited supply (I had about 40 pills for 3 weeks),
* The pain reduction only lasts for about 4 hours, so at night you'll have to either wake yourself up to stay ahead of the pain, or wake up in pain
* Painkillers ruin appetite, which will slow your recovery due to reduced caloric intake. See the Diet page.
* Opioids don't work on nerve pain.
* Opioids stress your liver.

Opioid tips

Try to get off opioids as soon as possible, but not before two weeks post-surgery.

Different people respond differently to various opioids. Dilaudid seems to work better for me than oxycodone. Ask your care team to try different formulations and see which one cuts most pain for you.

It might be interesting to also alternate them, so as to not build tolerance to a particular pill. This is TBD but is similar to the recommendation to alternate kratom strains.

Avoid Ibuprofen and other NSAIDs

Ibuprofen has been found to interfere with bone formation. Use Tylenol instead. It won't do much (it only alleviates mild pain), but it won't mess with your bones.

Nerve pain

This pain is caused by nerves being stimulated in unfamiliar ways (e.g. after the peroneal nerve decompression that Paley performs preventively) and of course by lengthening. It feels like a burning sensation, and often in places that were not touched by the surgery. IAmReady described it as an electric burn in his tibias journal, and it felt somewhat similar to me, albeit fortunately less intense on an ongoing basis, probably thanks to a new medication that the Paley team put me on: Neurontin. I've been taking 600mg every 8 hours and still had several excruciating episodes of nerve pain, but who knows how much worse I would've been without it.

Do ask your doctor about it. The Paley team typically prescribes it to only 10% of CLL patients, but I made sure to emphasize that I had a pretty low pain tolerance. After two weeks, my evening dose was upped to 900mg after I complained of burning pain in one shin. I can't yet tell if this has improved things.

Skin hypersensitivity

This one was unexpected to me, but caused an enormous deal of distress while trying to sleep. Before surgery, my legs were shaved. As the hair on the shins grew post-op, anything that touched the shins, especially going against the grain, was extremely uncomfortable. Even soft satin pajama pants were annoying. My shins were burning, as if I had sunburned them. What helped:

* Wet towels (at room temperature, or warmer; cold compresses made the sensation worse)
* Wearing long, semi-loose socks (compression socks were too difficult to get onto swollen shins) that formed a "second skin"
* Cool smooth bed sheets. Satin would've been great probably, but the hotel just had regular cotton sheets.

The splints (ankle dorsiflexion boots)

For tibia lengthening patients, Dr. Paley wants patients to wear splints 22 hours per day in order to prevent "contracture" (TBD - ballerina foot?)

Dorsiflexion-boot-splints

The problem with these splints is that, despite being custom made based on molds of my legs, they are extremely uncomfortable to wear at night. The shell is made of hard plastic, and I feel it touches in all the wrong spots, given the goal is to keep the ankle at 90 degrees. Here's my ankle bruised by the boot:

Another LLer called these "torture devices". I'm not sure how anyone can honestly score 22 hours per day wearing them.

Solution: look into "night-time splints". Those are actually designed to be worn at night, and only cost around $50. I've ordered a pair of MEDSPEC PHANTOM DORSAL NIGHT SPLINT and I'll report on what it feels like to wear them, and what PTs think of them.

Removing IVs

If you're used to waxing your hair off, you can skip this section. But if you're not keen on the idea of ripping your hair off, read on.

For reasons I can't fathom, men aren't advised in the pre-surgery instructions to simply shave their hair where IV lines might come in. This means the back of the palm, and perhaps some forearm areas if you want an IV there. Note: don't ask for an IV to be placed in the antecubital fossa (inside of the elbow, where they typically draw blood from; inexperienced nurses might do that, but it's a bad idea. Anyway, the problem with IVs is that they need to be stabilized against the hand/arm, and some nurses use excessive amounts of tape that sticks to your hair (maybe being female, they don't really relate to men having hair on their paws) and hurts like hell to have removed.

I've found three solutions for this:

* Detachol - a medical grade product especially for removing medical tape. Unfortunately I didn't have time to order it, and * St. Mary's hospital hadn't heard of it.
* Baby oil - people swear by it. Again, not available at St. Mary's.
* Coconut oil - this worked. Minimal pain while removing two IVs, though it took about 10 minutes of gently rubbing the oil at the base of the tape while peeling it off.

Sleep

Related to pain is the problem of "hellish nights of poor sleep", as one LL Forum member put it. Lack of sleep screws you up in all sorts of ways, including with decreased pain tolerance and increased irritability.

Since painkillers only las for a few hours, you're unlikely to get decent sleep. LL Forum members and fellow patients I've met report very poor sleep throughout the distraction period. The opioids prescribed to patients have their own impact on sleep[1], but more importantly, they tend to cause addiction, so doctors prescribe less and less as time goes on - which means you'll be in pain more often.

"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." - DIFM

So far (tibia and femurs surgeries done three weeks apart), I've been lucky to get 4 hours of sleep out of spending 12 hours in bed.

I'm afraid I don't have good solutions for this yet, but I hope that the night-time splints I've ordered will make it more comfortable to sleep with dorsiflexion boots. However, I've read that patients who only did femurs still had terrible sleep.

Kratom seemed to help, by putting me to sleep, but the effect only lasted for two hours or so, until shin skin hypersensitivity would wake me up.

Non-opioid pain reduction

Unless you want to risk jail and obtain your own opioids (and increase the risk of addiction), it's worth looking into alternatives. Several promising ones came to light during my research.

Cannabis

Marijuana has been caught up in the silly (and ineffective) "War on drugs" in the US, and as such, research into its medicinal benefits has been limited. However, there is high-quality international research (such as this study showing that CBD markedly enhances callus formation), and there's also a very large amount of anecdotal evidence for the anti-inflammatory and analgesic effects of cannabis - including my own experience.

John Robb, PA in the Paley team, recommended using CBD. It seems to help with nerve pain, though I still need to determine the dosage, reduction amount, and effect duration.

STAY TUNED I'll drop a lot more research in this section.

Kratom

Kratom is a tree that grows in South-East Asia. Certain strains appear to have pain killing effects. It's mostly legal in the US. I've purchased 23 different varieties and will report back.

Among the Paley team, Erica Boliak, PA, suggested kratom was OK to take, but it has a short half-life, so it won't help for more than a couple hours.

Agmatine

Agmatine is one fascinating substance, widely used in bodybuilding, with nootropic properties, and which was also found to potentiate the effect of many other drugs, including opioids. This means you need less oxycodone and oxycontin to keep pain away. It's also fully legal. It also was found to decrease tolerance to opioids. It does sound too good to be true, and to date, nobody on either forum appears to have used it (!).

I tried 1g a couple times with oxycodone, and it was unclear if it enhanced its effect. It did seem to make my mood more volatile though.

Collagen
While it doesn't have a direct influence on pain, collagen has been widely used in cosmetic surgery, tissue regeneration, bone grafts, and reconstructive surgery. It's also used as an oral supplement. Having more flexible tendons should mean less pain during PT, so I've ordered myself the most promising collagen supplement approved by ConsumerLab, containing the following ingredients:

* Boswellia serrata Extract (resin) - analgesic
* Turmeric Root 4:1 Extract (curcumin) - anti-inflammatory
* Undenatured Type II Collagen
* White Willow Bark - analgesic

Before the femurs surgery, my Range of Motion was evaluated as "excellent" - 14 (104) degrees for the ankle dorsiflexion, and 140 degrees for knee bends. Obviously, I can't attribute this to 2 weeks of collage supplementation, but I've never been a particularly flexible person.

------raw paste above, refer to https://overrideyourgenetics.com/pain for the full version ------
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

doomsday

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Hold on buddy! I know its hard but once you finished the extra height feels absolutely awesome. Being in the crowd and being taller than women is just good , it's in our DNA.
 I have say though that the price is freaking huge. $175K  is ridiculous. I guess Paley's demand is soaring.
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myloginacct

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If you asked me at that point, "Is this the best you could do for your life with $175k and 6 months of time off?", the answer would be "Absolutely NOT!". But the human brain (or at least mine) has this (in)ability to remember extreme pain as a so-called "declarative memory", e.g. "I broke my leg when I was 10, and the pain was very intense". But we can't really experience and truly feel that pain again on demand.

So if you ask me now, as I'm writing this a couple hours after that excruciating pain episode, "Knowing what you know now, would you still choose to do leg lengthening?", my answer would be more moderate: "Maybe not, now that I know how bad pain can get, and that I have to spend 4 months with pain episodes like that, and sleep horribly every night".

Remember what you are doing: you are overriding your genetics with the earliest method, but best technology, our scientific knowledge currently allows. No pain, no gain. The change is forever, and you are in hands of the best.

You are changing every inch of your perception, and those of the ones around you - quite literally at that. That will come at huge costs. The fact you're there battling your own nature already speaks volumes. Don't risk your legs more than you need to, but push through!
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Oh So Arrogant

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Nothing beats not having to wear those bulky fixators on your legs. Sleeping and showering would be a nightmare with those things.

How are you holding up? Where are you at in your lengthening?

No matter what hang in there, if you can safely get 5cm on the tibias and 6.5cm on the femurs go for it. Dr. Paley would never let you harm yourself for extra length. Even if it feels like it's not worth it now, it will be when it's all over. Trust me, you won't regret it for a second.
« Last Edit: May 10, 2018, 11:39:38 PM by Oh So Arrogant »
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Oh So Arrogant

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After you finish lengthening and get to take these braces off, your legs will feel like a million bucks. You'll sleep like a baby. I know life sucks now, but it's all worth it in the end my friend.
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Bruce Wayne

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Hey man, did Paley specifically tell you that you need to put only 5cm in femurs in order to be super safe? Or is it just the safe number for those who do both segments? Because Paley allows 8cm in general on femurs.
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FormerKidd

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Hey man, did Paley specifically tell you that you need to put only 5cm in femurs in order to be super safe? Or is it just the safe number for those who do both segments? Because Paley allows 8cm in general on femurs.
Generally, the limits are lower if you do them simultaneously. (See here)
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0184946

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Wish you a speedy recovery! I learned so much already by you sharing your thoughts with me. Awesome, brother. Keep going strong.
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AnotherLevel

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Hey, glad things are going well for you, one thing I’ve not seen you mention in your posts. What was your flexibility like before the op?

I’ve been trying to work on mine for a long period but I’m really struggling to improve it. What’s dr paleys view on this, did he discuss it with you?
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FormerKidd

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Hey, glad things are going well for you, one thing I’ve not seen you mention in your posts. What was your flexibility like before the op?

I’ve been trying to work on mine for a long period but I’m really struggling to improve it. What’s dr paleys view on this, did he discuss it with you?
I'm curious to hear his answer on this, but I thought I'd provide my own in case you're curious.  (I'm also a patient of Paley's, but femurs only.)

I was not very flexible coming in, and due to my tightness, I had to slow down my rate of lengthening. Paley will tell you he doesn't think it makes a difference, but the physical therapists who work there will tell you that people who are more flexible have an easier time, and I do believe that.  My advice to anyone considering this is to work on your flexibility well in advance.
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AnotherLevel

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Thank you very much for your reply, could you touch your toes? I spend time stretching and feel an improvement, then if I stop for a while I get tougher than ever, I think the fact I spend 9 hours a day driving makes my back stiff which hinders my flexibility!

I still can not touch my toes, what does paley think about this? How much have you lengthened? I’m looking at 6cm femurs max only too.
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myloginacct

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I was not very flexible coming in, and due to my tightness, I had to slow down my rate of lengthening. Paley will tell you he doesn't think it makes a difference, but the physical therapists who work there will tell you that people who are more flexible have an easier time, and I do believe that.  My advice to anyone considering this is to work on your flexibility well in advance.

I'm not a doctor, so this is just a random opinion on the internet. But it does seem to make sense to me.

In the case of gymnasts and dancers, their genetics lent themselves to a predisposition towards those careers. Those same genetics might allow them to have an easier time compared to others doing LL, specially if the lengthened amount is low.

When I think about it, considering you don't get any of the big scares of CLL (nonunion, mal-union, bone infection, DVT/PE/FES, refractures, nail breakage), then all that is left is for your bones to grow back, heal, and consolidate well. All that will happen at some point if you didn't have complications. However, as the bones grow back, they unnaturally stretch your soft tissues. Wouldn't it make sense that people who already have an easier time stretching their tissues on their own have an easier time and recovery with CLL, granted they limited themselves to safer, lower lengthening amounts? A lot is related to stretching.

OYG: I'm glad your journey is almost over. I'm also sorry that you had to go through so much pain for it.

EDIT: Wording.
« Last Edit: May 26, 2018, 03:00:30 PM by myloginacct »
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FormerKidd

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Thank you very much for your reply, could you touch your toes? I spend time stretching and feel an improvement, then if I stop for a while I get tougher than ever, I think the fact I spend 9 hours a day driving makes my back stiff which hinders my flexibility!

I still can not touch my toes, what does paley think about this? How much have you lengthened? I’m looking at 6cm femurs max only too.
I could not touch my toes without bending my legs a little bit.  I'm not sure this is an important metric, though.

Usually most people start having tightness around 5cm (in my case, closer to 4cm) and they have to slow down the rate of growth.  The number of PT sessions included only covers 8cm at 1mm/day, so any tightness may result you in having to buy extra PT if you don't reach your goal by then - and it's not cheap.

6cm I would guess most people can do in that time period, but for anything more, I would advise a lot of stretching beforehand.

Btw, OYG I wasn't able to catch you the other day at PT, I sent you some messages when you get a chance.
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doomsday

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are you going for full 10 cm?
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OverrideYourGenetics

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Last week of my journey
« Reply #23 on: June 02, 2018, 04:03:07 AM »

OK, time to hijack back my thread :-P

I've been debating posting my actual diary given that STRYDE is available now and is indeed a complete game changer. After reading some posts from others trying to decide between PRECICE and STRYDE, I've decided to not post my diary, because I can't in good conscience advise anyone to use the PRECICE 2.2, when STRYDE is only <10% more expensive, but you save 4+ months of not being a likely depressed cripple in a wheelchair. So what I've been through will mostly not apply to STRYDE patients.

For example, I had very little appetite for the first two months, and I lost 20lbs, mostly muscle, including in the upper body (despite using the wheelchair and/or walker every day). I lost 2cms in my bicep circumference. The STRYDE patient though, started regaining muscle by the end of week 2, and no longer has an appetite problem.

Just a couple highlights that still apply to STRYDE:

I did quadrilateral, which I don't regret because I wouldn't expose myself to this PRECICE ordeal twice, and wanted to keep the healthy 0.8 tibia:femur ratio. The lengthening amounts are indeed smaller, BUT if you are unusually flexible (as one patient I met is) or disciplined, you can lengthen up to 5+8cm. That does require serious discipline and a massive amount of PT - the girl in question has always been into yoga and very flexible (supporting myloginacct's point that if you're genetically flexible, you might naturally end up doing yoga or the like, and the underlying factor is your genetics), has been doing two PT sessions per day at the Institute, plus 3 sessions at home (at least half hour each) plus pool. Apparently she wasn't affected by the apathy side-effect.

The surgery experiences were VERY different. The first surgery (tibias) and hospital recovery were pretty great. I chose a "caudal block" as the anesthesia method, and they used ketamine (a drug that makes you happy and can cure depression, but of course, is highly regulated), which was nice. During the recovery in the hospital bed I exaggerated my pain a little in order to get painkillers before the pain actually struck, which worked great. Toradol was very effective against nerve pain, and the other IV drug (I forgot) against muscle/bone pain.

The second surgery (femurs) and recovery however were way worse. Even though I asked for the same type of anesthesia, I got something else - I remember being in the OR and looking at the lights while they bent me over and put an epidural in. You do NOT want to remember being in the OR. When I woke up I felt miserable and threw up several times. I was in the hospital for 4 days or so, during which I reached pain level 9 or 10 - so bad I asked a nurse to hold her hand while I was crying in pain because morphine didn't help. A drug called dilaudid did help.

The first two weeks after each surgery were pretty terrible. Pain level 7-8 at least once a day, which medication helped more or less with. (Hint: THC helps, and it's not actually dangerous for your bones). By the end of week 3 after tibias, I was doing pretty well, but then the femurs surgery reset everything.

Sleep was horrible until I thought of buying a latex foam mattress (about 3 weeks after femurs), which has been a game changer - it doubled the amount of sleep I got from 3 hours (at most) to 5-6 hours.

Still, I wasn't able to do any productive work more complicated than paying bills - which should not be a problem with STRYDE because you'll be weight-bearing, which has neurological benefits.

After you finish lengthening and get to take these braces off, your legs will feel like a million bucks. You'll sleep like a baby.

I stopped being able to tolerate the braces at night after the femurs surgery, so I gave up on wearing them. Still, couldn't sleep like a baby as a result (see above). Of course, I don't advise doing this - do wear the braces. I didn't, and combined with my natural lack of flexibility, I had to stop lengthening the tibias at 3.5cm (estimated; 3.75cm measured on the x-rays). My initial dorsiflexion was 15 degrees, and I stopped when PTs said I should - at 8 degrees. It's slowly coming back after lots of standing in the walker on an incline board - 10 degrees now).

I also have tight hamstrings and have developed a really annoying (and limiting) nerve pain on the inside of the left leg, from the calf to the knee up to the groin. It burned whenever I tried to do a knee extension. That limited the amount of PT I could do on my own, and made PT sessions at the Institute extremely painful. At that point (~5 weeks after the femurs surgery, at about 3cm of length), I decided that being able to walk again was more important than 1 extra cm (which is what PTs said I could reasonably tolerate) and wound down the lengthening. I'm at 3.75cm in the femurs as well, but ended up with a discrepancy of 7mm - the left leg is shorter.

Here's a piece of advice: address the discrepancy AS YOU GO, not at the end of the lengthening, no matter what the doctors tell you. Calculate how much you need to extra lengthen the shorter segment, and throw in one extra turn per day for a number of days. I didn't do that and got screwed in two ways when we measured the discrepancy last week: the tibias have started consolidating, so there's nothing I can do about the 4mm shorter tibia; and now I'd have to overlengthen the left femur to make up for that - which not only takes 2-3 extra weeks (because I'm supposed to do 2 turns max per day now, vs. 4 in the beginning), but means I'll have a longer left femur and a longer right tibia. And 2-3 extra weeks before I can start consolidating the shorter leg.  :-[

Another piece of advice: watch your x-rays like a hawk. Ask to get access to them, online or on a CD - whatever. Do your own measurements. Make sure both nails lengthen at the same rate. Look for signs of fractures. Etc. At the Paley Institute in particular, this is easiest if you remain in the room after the consult with the doctor, and go to the computer that shows your x-ray. Take the mouse, right click, and choose the "Distance" menu item. Draw lines on both bones from the top to the bottom of the epyphyses. Keep in mind that there's a magnification factor. Ask about it. At Paley, it's 4%, so in reality, things are 4% smaller - e.g. the 39mm of lengthening in the right nail is actually 0.96 *39 = ~37.44mm.



PT. It's painful. I can't deny that if I did more PT at home, I would've probably been able to lengthen more. The problem is that you need to overcome pain you're inflicting on yourself and can stop at any time. When a therapist inflicts pain on you, you grin and bear it. When you inflict it, you can stop at at time, or reduce the pain. This makes DIY PT sessions necessarily less effective. Plan on that. Get someone else to inflict the pain. Take pain meds (nothing really works on me for some reason). Hopefully PT will be a lot easier with STRYDE, since you can walk, and walking is the best PT.

Anyway, at 75% of my original 10cm goal, I'm satisfied. I'm no longer in pain when stationary; only when stretching or lying on my left side (due to the hip screws; that might not go away until I take them out a year from now. #FML)

I'll be flying back at the end of next week, starting the next chapter in the long slow journey of being able to walk again.
« Last Edit: June 02, 2018, 04:32:10 AM by OverrideYourGenetics »
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

Great321

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Thanks for your update! I think you made the right decision.

How is that discrepency possible with Precise. I thought that lengthening machine ensures the exact lengthening rate.

Could you please give me an example what the "healthy 0.8 tibi:femur ratio" means if for exampe someone's tibia is 35cm and his femur about 39cm.
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OverrideYourGenetics

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How is that discrepency possible with Precise. I thought that lengthening machine ensures the exact lengthening rate.

I started out with a shorter left leg. This was seen in the first x-rays, when I had the first consultation to Dr. Paley, discussing LL options.

Could you please give me an example what the "healthy 0.8 tibi:femur ratio" means if for exampe someone's tibia is 35cm and his femur about 39cm.

Before lengthening, my tibias were ~34.5cm and the femurs were ~43.5cm. If you divide the first number by the second, you get an original ratio of ~0.79.

After lengthening each segment by about 37mm, I have a tibia:femur ratio of ~38:~47, which is 0.8.

If you're 35:39 pre-CLL, that's a 0.89 tibia:femur ratio, so you should lengthen the femurs quite a bit more than the tibias. For example, +3cm in the tibias and +6 in the femurs would bring you to 38:45, which is 0.84. Or you could do only 5cm in the femurs and be at 0.795.

In any case, read that study and see if it's more important to you to have the best ratio, or to gain more height (e.g. if you do 6 or 7cm in the femurs).
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

Great321

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Did you plan to lengthen your left leg more than the right on? My left leg is also half a centimeter shorter and it actually causes pain in my right hip and foot (I wear a lift for that now)

Thanks for the explanation:) My tibias seem to be too long  ???

My minimum goal is 10cm. My legs will be measured soon by a doctor. The 35/39cm are not the exact numbers. I will ask him about the 0.8 ratio and what he recommends for lengthening.

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doomsday

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you should do at least 6 cm on femurs if you cant push tibias any more. 170k and not being 5'9 would be a total failure and regret in the future
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myloginacc

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you should do at least 6 cm on femurs if you cant push tibias any more. 170k and not being 5'9 would be a total failure and regret in the future

I'm pretty sure whatever he ends up doing, there's no way someone who went through 10/10 pain levels, and 3 hours of sleep almost everyday, just to overcome what nature and his environment gave him, can, or will, think of himself or his result as any sort of a failure - specially because of a 3cm difference. :)

OYG and his doctors will know what is best for himself. From what he wrote too, it seems he decided and is about done with lengthening.

In the eventuality that much later down the road your conjecture could turn to a reality, rebreaking bones is a technical possibility - but I doubt it'll come to that.
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Formerly myloginacct; had issues with my login account.
Yes I do want to add, before doing this surgery, ask yourself if you have optimized your life to the fullest extent possible (job/career, personality, etc).

OverrideYourGenetics

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I'm done with the lengthening
« Reply #29 on: June 06, 2018, 06:38:21 AM »

Thanks for the support, myloginacc.

OYG and his doctors will know what is best for himself. From what he wrote too, it seems he decided and is about done with lengthening.

I forgot to mention another issue: I've been having reduced sensitivity in the left lower leg for about two weeks now. Motor control is fine, but the skin from the ankle to the knee has only about half the sensation I used to have. I stopped lengthening the tibias a month ago, and I've been distracting the left femur at only 0.5mm/day, so this is another worrying fact and reason I decided to stop.

In the eventuality that much later down the road your conjecture could turn to a reality, rebreaking bones is a technical possibility - but I doubt it'll come to that.

Rebreaking is an option indeed. I should be able to gain 2 more inches. But I definitely won't be subjecting myself to the PRECISE downtime again.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

Racurz

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Where would you rank your pain on a 1-10 scale also do you plan on doing more surgeries ie femurs and hopefully you get full feeling back pretty soon
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