Week 1-2:
So I suffered this constant rollercoaster of pain (goes down to 3, and then jumps up to 9-10 every 2 hours) for several days. I had trouble sleeping at night because the pain would wake me up. I realized now why other patients had trouble sleeping at night. I asked another doctor friend of mine for his opinion. He told me to get Oxycontin which is a slow release version of Oxycodone and was wondering why they were not giving me Oxycontin. Oxycodone is 10 mg per 4 hours. Oxycontin is 10 mg per 12 hours. This way, I would not have a rollercoaster ride of pain. I emailed Dr. Paley who emailed the other doctors. At first, they were pissed that I asked an outside doctor for a second opinion. But in the end, they agreed with him, and they told me to get Oxycontin and Ibuprofen (Advil). So I was to take Oxycontin every 12 hours and Advil 800 mg (4 pills), every 6 hours. The Advil actually causes stomach ulcers (bleeding) if taken with the blood thinner that I was already prescribed. So it's dangerous to take Advil with it. But, the combination of Advil and Oxycontin worked. I no longer had the rollercoaster ride of pain. I had a base level of pain around 1-3. And when I go too long without pain meds (like if I slept for a long time), I sometimes get back to level 8 pain or so, but two pills of Oxycodone stops that immediately an hour after taking it. I decided at this point to only take Oxycodone when I needed it, such as an hour before PT start. This is because I was developing a tolerance for Oxycodone, so it wore off quicker and didn't have as much of an effect. So I found it more wise to only use it when needed, so that impact of it was stronger. It was so strong after not using it for a whole day that when you take two pills before PT, you feel euphoric and happy and don't feel ANY pain at all. This made PT a breeze for me. So this setup of one 10-mg Oxycontin per 12 hours, four 200-mg of Ibuprofen (Advil) per 6 hours, and one or two 5-mg of Oxycodone when pain level 0 is desired (only once or twice per day) works great for me, and I would recommend this pain med setup to anyone who had the same rollercoaster of pain and/or trouble sleeping at night.
Trying to get off Advil
One time I tried going cold turkey on the Advil (i.e. stop taking any at all) and used only Oxycontin/Oxycodone, because I was scared of getting stomach bleeding. That was dumb of me. Don't go cold turkey on pain meds. I went cold turkey for two days and suffered level 7 pain constantly during those two days. As soon as I got back to the Oxycontin/Advil combo, I was back to pain level 3 and below. I sleep the full night now with this setup and can do pretty much anything, like use the walker for long periods of time. I used my walker so often the first week out the hospital that I developed bruises on my palms. They have trouble healing, because I keep hurting that bruise over and over again when I use the walker at the hotel and during PT. I recommend getting a wrist guard and some gloves to soften your palms when holding the walker. I put about 70 lbs on my palms when using the walkers according the scales. I regret not getting the gloves sooner and bruising my palms. Don't make the same mistake as me.
Physical Therapy
By the way, they start you on PT 5 days a week immediately and PT happens at the Paley institute within the hospital. The days/times are randomly assigned to you at the end of each week. Some of those times and days are times when the Paley free transport don't operate. That's when I use the hotel's free shuttle to get there. But the hotel's shuttle doesn't have wheelchair access (it's just a red minivan), so I have to use the walker with it. But if the hotel shuttle is only from 8 am to 8 pm, so if your PT is at 7 am, you have to pay for that $8 taxi. PT for me is a breeze. I have excellent flexibility. I can touch my butt with my ankles. I have spread my legs 45 degrees to the side. I can put my knees straight to 0 degrees. PT is also fun when you crack jokes with the PT. The hour goes by very quickly, and I actually enjoy going to PT everyday. You get a random PT, so it's not always the same person. From what I heard, "big Mike" is the guy who really pushes you (i.e. makes you hurt but gives you good stretch results) and is the best PT. I haven't had him yet, so I can't comment. But all the other PT patients say that he's the best. I've only had the female PTs so far, and all have been very nice to me. They focus on your weak spots. For me, that's my hamstrings. Everything else is loose and flexible except for my hamstrings.
Tips I learned
1. When on the wheelchair, always keep your legs straight or dangling. Don't put your knees up on your chair. I was told that this makes your muscles tighter and hard to extend your legs later.
2. Don't sleep on your side. That's where your pins are and it hurts a lot when you wake up. I tried it once. Never again.
3. You need help for the first few weeks. It helps a lot. It's very hard to do much on your own. It can be done, but it's very hard. Things like opening doors are frustrating without help. Things like picking things up and putting it somewhere else are time consuming, because you have to get back on the wheelchair. It's hard to do these things while on a walker in your first few weeks, because of the pain. Hired caretakers are $250 per day (24 hours) and want their own room ($70/night), so try to find a friend/family to do it or you'll be spending a lot of money.
4. Put some towels or put a box/stool under your feet when you poop. This keeps the pressure off your femurs when you sit there for a long time. This reduces your pain and helps keep your blood flowing in your legs. I might use this trick when I get better, too, because my feet tend to fall asleep when pooping for half an hour.
5. Instead of using the weird gel-like cushion on the wheelchair, use the hotel pillow instead. The weird gel cushion feels like you're sitting on a hard rubber that keeps moving around. Pillow is much better feeling.
6. Try to get into the pool as soon as the doctors let you - usually 2 weeks after surgery. Being able to walk in the pool makes you feel normal, and the pool is usually warm. It's usually cold on rainy days, but mostly warm, because it's heated to around 78-80 degrees or so. On a sunny day, it feel likes 85 degrees in the water, which feels really nice. I usually swim at night (pool closes at 10 pm), because I don't want to get sun burnt, which can happen easily in Florida. Also night time is when there are less people, which is nice, because some of the kids (non-patients) that go in the pool are pretty rowdy and dive/splash water, even when they're not supposed to.
7. Try to get prescriptions earlier. The pharmacies nearby keep running out of drugs (Oxycodone and Oxycontin to be specific) and they don't really deliver except for Garden Drugs. Walgreens delivers to the hospital, though. So try to get them about a week in advance before you run out, because it takes about 1-2 weeks before they get their next shipments in each pharmacy I called.
8. They mark your leg where you're supposed to put the magnetic machine to do the distraction. The distraction machine is easy to use. First you plug in the machine to an outlet. Then you align the pill shaped hole in the distractor with the rectangle mark on your leg. Then press F1 to start the machine. It displays the distraction while you're doing it, and it lasts about 2 minutes. Then when it's done, the top-left arrow blinks and you press it to reset it back to 0. Then you put the machine on the other leg, and press F1 to start it again. Then you press the same top-left arrow to reset it. Finally you unplug the machine.
9. So here's a tip about the mark on your leg with distraction. They put a sticker over the mark, but that sticker comes off easily if you shower. So bring a black and silver sharpie. The black wears off faster but I use it to fill the inside of the rectangle. The silver sharpie lasts longer and I use it as the outline of the rectangle. I also drew a line with the silver sharpie around the distractor when placed in the position. You can't see the pill-shaped hole yourself, so you can't align the distractor yourself through that. Instead, get someone to align it for you and then draw an outline of the whole machine on your leg. Then you can just align the machine based on that outline instead of the rectangular maker. I get a bunch of clear stickers from the doctors to put over this to protect it from water. It lasts about 3-7 days. I should be able to distract myself using this method. I haven't tried yet, because I currently have a care taker doing it for me.
10. I shower after I poop, so I don't have to wipe. It also means that I only have to go to the bathroom once or twice a day.
11. I brush my teeth in the shower. It's hard to brush your teeth while standing, and I don't recommend it. Do it while sitting in the shower. They give you a chair to sit in the shower, and a chair to sit in for the toilet - with handle bars on each side to help you get up.
Day 16:
This is when you get your first X-ray and first doctor report on how well you're doing. My X-rays came back fine, and everything is going well. So I have nothing to report here. Distracted 16 mm on each leg as expected.
Week 2-3:
I'm in that "honey moon" phase that they speak of (i.e. not much surgerical pains, and lengthening pains haven't started yet). They say lengthening pain happens after 6 cm and continues to 8 cm. I plan to flex and stretch as much as possible before then so that I can prepare myself for the 6-8 cm stretch. Distraction/lengthening itself feels like nothing. You can't even tell that it's happening. You do only .25 mm each time and four times a day. I've met with the other patients here at the hotel. Everyone's very friendly. I set up card games, buy take out food for everyone, and hold Friday movie nights in my room to make the other patients feel more at home. I brought my PC and connected to the hotel TV via HDMI. The hotel TV sucks. I brought my own external speakers as well to help. But the TV is 1080p, but looks like 720p and is only 27 inches or so. Picture quality looks like something from 15 years ago.
Complaints about Dr. Paley
Everything actually runs very well and almost everything you need is given to you. There are a few things I didn't like, like the PT forgetting to tell me that they changed my time, so I ended missing a PT session. But most of that stuff is minor. The only real complaint is that they didn't give me Oxycontin/Advil idea to begin with and only started me off with Oxycodone. If they had me on Oxycontin/Advil to begin with, I probably wouldn't have had that level 10 pain in the first few days out of the hospital.
Other costs
So I already mentioned the costs before. So here are additional costs: Oxycontin is $200 for 60 pills. I was forced to get this from Garden Drugs, because they were the only ones who still had it in stock and I was in a rush to get them, since I was in that rollercoaster of pain. So it might be cheaper at the other pharmacies, but they might not be in stock. The other drugs combined is around $343 (again, don't use Garden Drugs if possible - they tried to charge me $660 or so for all of them). There was also a separate bill for the x-ray lab that went to my house that I didn't know about. It was for $170. That surprised me, because they never mentioned this to me when I paid $300 for the x-ray during the consultation. So the consultation with Dr. Paley is actually $750 (Dr. Paley) +$300 (xray) +$170 (xray lab) +$77 (vit D test) = $1,297 in total and not $1,000.
Okay, that's about all I have to report. Things are going well. And I think everything will be the same for the next few weeks/months. I'm actually a pretty busy guy with lots of work to do, so I will report back when things change. I doubt that YogiBear will update her diary. She's not doing as well as me. She's on that rollercoaster of pain that I told you guys about. I told her about my med setup and am trying to get her to get on it. Hopefully that will help her out. I don't think I should be talking about her situation, but I just wanted you guys to know why she hasn't been updating her diary. So don't blame her to for not updating her diary. I actually feel bad that she's not doing as well as I am with recovery, and would actually be surprised if she started writing in her diary again.
Author
Topic: DoingItForMe's Precice 2 Internal Femurs with Dr. Paley (Read 258318 times)