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).
Quote from: Optimistic1 on April 05, 2018, 08:19:53 PMOverrideYourGenetics,
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
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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.
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