Many prospective limb lengtheners are (understandably) concerned about pain. I did internals with my femur (Stryde nail) in 2019 and then externals on my tibia (Taylor Spatial Frames LATN) a few years later. Both surgeries with
Giotikas in Greece. Since I have experience with both internals and externals, I feel I can speak to this issue quite well.
Pain with internal nails Let’s start with internals, which most of you will use for femurs. First of all, the pain on internals is rarely (I would say pretty much never) an 8/10 screaming type pain. It is usually more so a dull/ low grade pain that is about a 2/10 or 3/10 (at its worst times). Those ‘worst times’ are usually in the evening/ night time. But remember that this
dull ache comes and goes. In my case, I essentially felt zero pain throughout the morning/ afternoon/ early evening. Especially if I was actively involved in something else, going outside, leaving my apartment, and mingling with other people. This helps a lot. A lot of people spent all day sitting in their apartments and the only human interaction they had was with the other lengthening patients during PT. Bad idea in my opinion. You need to periodically
take your mind off height/ limb lengthening or you will drive yourself insane. Most of the diaries on here that complain of constant pain, boredom and depression are folks that (in my opinion) didn't manage their time very well. If they had a painful complication, that's a different story. Those people are in pain because a surgeon botched their procedure or something went terribly wrong. However, I am referring to healthy patients that just feel like every day of this process is some kind of torture. Honestly, it doesn't have to be if you adopt the right mindset (
http://www.limblengtheningforum.com/index.php?topic=85093.msg273169#msg273169), get into a good daily routine, and get the fundamentals right. I can discuss
how to maximize your free time and set up a solid daily routine while undergoing LL in another post later.
Many patients feel pain during physical therapy because the physical therapists push them. This is a good thing. You need to be stretched/ pushed out of your comfort zone. In my case, I did feel some pain during the stretching but it was a good feeling. Like the feeling you get in the gym when your body has been worked out well. I should add that I was flexible in my thighs before my femur LL. I was able to do the full sideways split. I do feel this was very helpful and yes, it gave me an advantage during femur lengthening. However, I know several patients in Greece who were able to
reach 8.2 cms on their femurs even though they were not flexible at all. So don't worry if you are not flexible. On my tibias/ calves, I had no flexibility advantage. My flexibility was average (at best) and I still reached 6.2 cm on tibias with the externals.
Externals Externals were challenging, but not as bad as I thought they would be. The physical pain was minimal (in fact it was LESS painful than internal Stryde femurs). With the externals, I rarely (if ever) felt any physical pain inside my tibias. I also felt almost no pain at the pinsites themselves. Having a surgeon who KNOWS how to properly attach the pins/ rods is critical if you do externals. Your doctor can put the
pins/ fixators on in such a way that it minimizes the discomfort and pain to the patient. This is something that Giotikas knows how to do quite well due to his
experience with treating orthopedic trauma patients. So if you do externals, ask your surgeon how experienced he is with putting these on. Ask to speak to his patients who are using externals and find out if they are in pain all the time (
Hint- they should not be).
The main challenge with the externals is the discomfort. Your body never truly gets used to having frames (essentially cages) on your legs, especially at night while you sleep. However, I found myself being able to fall asleep quite well. The biggest thing that helped was propping my legs up with pillows underneath the frames. Then sleeping becomes much easier.
SleepWhether you use externals or internals, you will probably wake up at night due to discomfort. Perfectly normal. I don't know a single patient who didn't have some sleep challenges during this process. My advice is to get up, do some quick stretches, adjust your body position, and lay back down in bed. And take a pain killer if need be (which your doctor will provide you many of, at least in Greece). In Greece, the pain killers/ blood thinners/ other medications/ Vitamin D supplements are all included in the cost of the surgery package. Please check with your surgeon if medication is included in the price, as this could be a high additional “hidden cost” if you have to pay out of pocket for pain medications.
So again, 'uncomfortable' is the word I would use to describe frames. It was not painful (at least not to me). Luckily I also had no infections. But I was also very thorough about
keeping my pin sites clean. I might make a post here on the forum later about best practices for cleaning pinsites for LON/ LATN patients.
Mindset to Overcome Pain/ Discomfort/ BoredomAnother reason why the pain/ discomfort was truly not that big of a deal to me was because I adopted the correct mindset throughout this process. This is as important (if not more important) than the physical conditioning in my opinion. Here is my recent post regarding the mindset/ mental conditioning subject-
http://www.limblengtheningforum.com/index.php?topic=85093.msg273169#msg273169ComplicationsMany things could go wrong during limb lengthening. Be aware of all the possible complications and make sure your doctor gives you a thorough description of likely complications. Ask him how he/she typically handles those complications. Ask him how many patients he has treated with your lengthening method (Quadrilaterals, Precice, G-Nail, externals, whatever). Ask him what complications they had. Ask how many of their patients reached their full lengthening goals (for the method you are interested in). Don't be shy about asking these questions, even if you think you are going to a doctor who is very 'top tier.'
Top-tier doctors have complications as well because a lot of this process is based on how the patient responds to treatment (i.e. how quickly bones heal, how well patient follows orders, whether a Precice patient accidentally walks too much and ends up bending his nail, whether a patient does stretching on his own in addition to the mandatory physical therapy, etc). These are all factors that doctors don't have total control over because they are not watching you 24/7.
I had no complications on my femurs in 2019. The only complication I had when I did tibias was some moderate ballerina foot. But fortunately, the ballerina resolved (basically on its own) around 2-3 months into my consolidation phase. Every week I just noticed it getting better and better (until it essentially disappeared) and eventually I was able to place my feet all the way down the ground with no effort. Now I am walking completely normal; zero ballerina foot.
Final ThoughtsPain is very subjective. Your experience will likely be much different than mine (or many of the diaries on here). But it is always good to have a rough idea of what to expect.
Feel free to post your questions here on this thread and/or
reach out to me via DM if you need help.
Author
Topic: How bad is the pain? (Advice from Veteran) (Read 929 times)