When I came to this forum(what seems like yesterday) I was pretty ignorant and really didn't know what to expect from LL, even lying back with an IV in me minutes before my surgery. And from what I've learned, and many other LL'ers will attest to- you really can't know what to expect, or totally prepare yourself. But I wanted to share some of what I've learned to add some clarity going into such an intimidating process. Keep in mind I did internal femurs for 8 CM, though some of this I'm sure applies to externals and tibia.
Good:
On the plus side, adjusting to wheelchair life is easy, and both myself and others were surprised by how little not having proper use of our legs. This is probably because you get to walk around using crutches and a walker, so you never feel totally grounded, and if you have access to a pool(Which hopefully you do) swimming is easy. If not for wanting to return home asap without having the operation be obvious this would basically be a total non factor to me.
On that note, mobility was better than I thought- with me being able to get myself in the shower, onto the toilet, and all that fun stuff pretty easily as early as around a week and a half post op.
Lengthening itself is totally painless, even when my device started vibrating in my leg(which no one here has ever heard of happening, Paley included). The only time it was terrible was when they did 2mm in one session, which was insanely painful not only in the moment but all day. This is only relevant if you have a large discrepancy, usually from thick thighs.
This will vary largely depending on where you stay, but the community here with Paley is excellent. The hotel staff knows the patients and the drivers, the drivers know everyone, the PT know the patients etc. etc. Its sort of a mini society. From my experience most LL'ers you will meet are very friendly people with good heads on their shoulders
The average:
On the so-so side, for me PT was always bearable, though for some I could see the pain being harsh. Though it is very painful at times and can make you see stars during some stretches, these are fleeting and never came close to ruining my day. One PT commented that the more muscular lengtheners tend to do better from having a good pain threshold/endurance. I think most will be able to endure this, especially if you are acceptably loose to begin with- The only people I've seen really struggle are a 50 year old who didn't get IT band release and stopped at 5 CM, a 50 year old who complains even with the easiest PT, and a younger patient who was very tight to begin with but is improving. For me, it was pretty much what I was optimistically expecting.
General comfort isn't so bad after the beginning- when you are tight you will notice your legs have a mind of their own, though this typically won't be too uncomfortable, but eventually you will be able to play games or watch something like normal. But even into the second month you will feel a little something off that might pull your focus, this mainly interfered with reading books. I had twenty or so ready to read but could only read one.
The awful:
You can read pretty much any diary to tell you this- but the days after surgery are truly hell. This, and the first two weeks are the "regret" phase, where you aren't really any taller, are in a lot of pain constantly with every move. This in particular was worse than I could have ever prepared for(read my journal for tips on how to avoid my experience though). The first month in general is painful, you feel pitifully weak, and can't even do simple thing like lift a leg in a certain direction or lie on your side. But the good news is as terrible as this phase is- it ends. Before long it is a distant memory. And the other pains you feel later in the process will seem like nothing in contrast. One of the best feelings is getting your strength back- My fondest memory is going from heaving and grunting to barely lift my leg while on my side... While someone was helping me- To easily doing it for reps.
For me something that ended up being somewhat big, albeit ultimately irrelevant, was the unsureness of the precice properly lengthening after my initial discrepancy. The weird sounds from my left leg only added to this. It may seem petty but when lengthening IS your life and defines your every day, these doubts can get to you. My last two x rays for example I was positive there was an issue. Not really awful, but it was an unexpected negative.
One of the worst things ended up being me coming alone. I'd advise anyone to bring someone for the first month. Something I didn't account for was how you pre op and post op are two different people. I may have not been nervous, been strong, and not cared about being florida alone for a few months beforehand- But afterwards, with all the pain constantly, sleepless nights, making your own food, people texting you assuming you are having a blast on vacation, it ends up bothering you. Towards the end it doesn't matter, though having companionship is nice, and bringing girls to my hotel helped, though thats not really viable month one.
But, if you've followed my diary you know the absolute worst thing is the sleep. The pain from the hospital is temporary, the poor sleep is constant, every night and unrelenting. When couple with the pain and medicate nearly on it results in hallucinations and weird half sleep. For the first two months or so it will be mostly broken up and you will definitely be poorly rested... And thats WITH sleep aids. Later it gets a bit better and now I usually sleep more or less through the night but get woken after 5 or so hours. After the initial pain, if this was decent, the whole process I would honestly say isn't that bad. But this drove me crazy, since when you are poorly rested EVERYTHING gets harder. Early on you will need heating pads for sure so pick those up.
Other:
My biggest advice about tackling this process is that you either need to abandon your fears, reservations, everything and just take the plunge asap, or just forget you ever heard about the surgery and move on. I know it can be hard for a lot of people to make the time and all that- But if you can't make it happen and are clinging to the fantasy it will just eat you up.
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Topic: The most unexpectedly easy/difficult things about LL and general advice (Read 2461 times)