Made a journal before, but just wanted to consolidate it now that I'm at 52mm and lost the password to my old account.
Me
I'm a 26 y/o techie from the Bay Area with flexible work from home option. I am 5'8.5 (174cm) prior to the surgery with the goal of gaining 8 cm on the femur to 5'11.65(182cm) 155 pounds. I had a breakup late last year so I'm in this period of my life where I have no commitments. Made it a great time to work on myself. While I'm not "short", this is all relative to the shoes YOU are in. If I have a chance to better myself, I'm going to. I have no regrets so far.
Doctor Choice
Money is not an issue in my personal life and this surgery cost me practically nothing overall, but that doesn't mean I'm going to throw money away for the same end result so I did factor in the cost. Femur is an obvious choice if you're only intending on doing one surgery. Three doctors I considered were
- Dr D (Las Vegas)
- Dr Assagya (Baltimore)
- Dr. M (LA)
Honestly, it's not that hard of a surgery. Speaking specifically for internal femur, any of the famous US doctors that does this will have pretty much all the same surgical result, and that includes Paley. If anything, it's the aftercare that might be different. Dr D and Dr A are both about $70k, while Dr. M is prob 10-20k more expensive. From SF, the east coast is a bit too annoying to get to, so that left me with Dr D. There's a lot of negative feeling towards him on here because he does a lot of TV shows or some will say "advertises". But he told me he really just wants to bring awareness of limb lengthening and change how the world sees people who undergoes it. He's a Harvard trained surgeon who primarily works on non cosmetic patients for spinal issues. Only 20% of his patients are CLL. I don't think there needs to be any doubts about his skillset.
Prior to Surgery
I drove 8 hours down to Vegas 5 days prior to the surgery and checked in to an Airbnb 20 mins away from the clinic. It was a large house with 3 bedrooms for only around $2k/mo, much cheaper than any hotel. It's also way larger so I have space to wheelchair around. I set up all the stuff I needed post surgery. Grocery shopped at Costco, and hit the strip club for my last good bye to my legs. Picked up meds and did bloodwork, and also had my in person consultation with the Doctor all in that week (while working not a single day off).
Surgery
Surgery day was Friday. The only day I took off from work. Arrived 5:30 am at the hospital. Surgery started around 8 am. Prob took 1-2 hours but I woke up at 12pm as was the first thing I remembered. They immediately wheeled me into my recovery room maybe 20 mins after I woke up. On that floor they set me up with everything I needed, nurses came with meds every now and then. Food was great, and just all a really good experience. They emptied my pee from my catheter use very often cause I chug water. The nurses on that floor deals with Dr. D's patients all the time so they know how to take care of you. The PT during the hospital stay also knows what to do, you start walking the day of surgery on a walker. Doctor came to check in on me once every day until I got discharged on Sunday. Yes, the first 2 days sucked and I wanted to leave that hospital so bad. IV in the arm for 48 hours isn't pleasant. Pain is more so a consistent discomfort, but it's never a 10. Like stubbing your toe will hurt more than any more of the surgery. Mostly because you're on pain killers, so take them. But this is a 2 day ordeal, it'll pass. And you wont even remember much of it since it's so quick. You're going to struggle on the 6-8 month journey of recovering, not the 2 day hospital stay.
0-10mm
This is the first week and a half. I did PT 3-4 times a week (included) for the first 3 weeks. No care taker EVER throughout my time, and it is 100% doable. I used a wheelchair primarily, and a walker in areas with steps or narrow doors (bathroom, garage for laundry). Food, I mainly microwaved. I cooked a few times for fun, like steak and veggies. Ramen was also something I did a lot. Bagel and PB&J almost every breakfast. Painkillers kept this part reasonable. You're also in the initial euphoria of lengthening and you're not too tired of it yet. I mean you're walking just a few days ago so this really isn't even that bad. Getting in and out of Ubers to go to PT was probably the hardest part of my day. Again, 0 days off from work, but I'll say my productivity wasn't that high. We have unlimited paid time off anyways, so I didn't really care if I really wanted time off from work. But my manager knew I just had surgery.
10-20mm
Not too much different from 0-10mm. Same routine, still in Vegas alone. Pain just gets less and less discomfortable, but nothing has changed. I had my first shower after the Doctor removed my bandages for my 2 week post surgery visit. I realized my lower right calf was partially loss of sensation. Not completely lost, but just felt very different. Doctor said that was normal, your saphenous nerve will be the main one that gets affected for femur lengthening. Doctor also cleared me to drive after 2 weeks post surgery. So I started driving myself to PT instead of Ubering.
20-30mm
My family flew down to Vegas. They stayed for the weekend then my mom and I drove back during the week after I did another doctors visit. Went out to eat a lot and just enjoyed being outdoors a bit after a long time. They didnt know I did the surgery until they got to Vegas. But back at home, with the support of my family, it's really not too much different. It's just there's people to help me deal with food and stuff. Which I think is helpful since I stopped using my wheelchair now that I'm back at home, so it makes things like cooking impossible. I only use my walker now. Doctor recommends that for faster bone healing. I also do PT entirely on my own back at home. The Bay Area PT is really expensive, like $100+/30 mins, and they don't know how to take care of a CLL patient. I bought massage tables, all the weights and resistance bands, bike, rowing machine, and have a lot more stuff than their clinics. I just stretch on my own 40 mins 3x a day and one 30 min strengthening exercise. Haven't had an issue so far on 52mm.
30-40mm
Probably the worst period. Nerve pains were terrible on my legs. Had 2-3 days where I barely got sleep. Doc got me on Gabapentin 300mg, starting from 3x/day but ramped up to 4x/day. It takes like 2 weeks for it to really help but it eventually helped. I slowed down to 0.75mm/day but that's not a big deal. It ends up being 2 weeks longer for lengthening, and it doesn't change the final consolidation day I'll be able to weight bear since bone will be forming at the same rate. But this period mentally sucks because you're not half way and you're just super tired of the whole journey.
40-50mm
Probably the easiest out of what I've done so far. Hitting the half way mark is a great mental barrier relief. Your stretches and exercise routine is integrated into your daily life. Sleeping/waking up sucks, but no pain throughout the day besides that. I use 5mg of Percocet when I sleep and 2.5 mg of Valium. I've had some muscle weirdness going on in my right leg, but doc said not to think too much of it right now, most likely tendons or muscle rubbing against the nail as it gets tight and lengthen. X-rays all looks good so just wait it out.
I'll do another update after I hit 80mm for the 50-80mm journey. And maybe another update after I consolidate to be able to weight bear. Overall, tough tough journey. But my finance and job makes it pretty easy to get through. I wake up 11am and do my first stretching and lengthening session usually. And then another one 4-5 hours later, and then another one 4-5 hours later. I have 5 more weeks left and already starting to count down the days.
People won't agree with a lot of my advice on not needing a care taker at ALL, or not going to PT and doing it yourself. But I can 100% tell you it works. I stretch myself better than any PT does and know all the exercises I need. It's not even the money, it's not worth the drive for me to go to someone who does a worse job than me. If you have accountability to do it yourself, you dont need one, if you dont have accountability, then you need one.
Feel free to ask questions, but please no stupid questions you can find on google or just stupid questions in general which doesnt take much logic to figure out what the answer is.