Day Zero, recovery to now
Pain level: 3/10. I should add the pain is really stiffness - think of it as having gone really hard on leg day and you're sore AF a day later. If you're not moving, you're fine.
You wake up kind of not knowing where you are, then the fog starts to lift. As soon as you're awake nurses begin to check on you. The first thing they want to see is how far along the nerve block is. You don't leave the recovery room until the nerve block fully loses effect. This took at least a couple of hours. You're asked to wiggle your toes, push a pedal, "can you feel anything" while they touch your feet. Initially the answer is no. You know something is down there, but nothing happens. Then gradually, you begin to regain motion and feeling in your legs and feet.
You have pain management options post-anesthesia, from Tylenol to opioids. I opted very light on opioids but was warned I would need some before morning to manage the pain. You also get inflating cuffs put on your tibias that inflate/deflate every several seconds as additional help against blood clots. You can finally have water and eat!! I suggest asking for food because in a busy recovery room, they tend to forget - I ate very late. You start with Jell-O and work up to a sandwich, or at least that's what I wanted. You're given whatever meds you use for sleep but in lower doses, given the fact that you have anesthesia in your system and opioids. Once the nerve block is gone and they deem you ready to leave recovery, you're wheeled off to a private room, which is where I am currently.
After the operation, your belongings follow you. They bring you a little sanitation kit with toothbrush/toothpaste, etc. I asked about showering and they prefer you do not shower until you leave the hospital. Strong emphasis on prefer. You pee in a urinal container designed to collect in bed. Wasn't really a problem. They insist you do this before you go up to your room, and when I said I don't know if I can, they ultra-sounded my bladder and showed me it was nearly full.
Sleep: You're not going to sleep the first night. If you do, consider yourself beyond lucky. I'm in a state of zombie like tiredness, and I'm obviously blogging at 4:51 AM and not sleeping. The PA said it's very common on the first night and just sleep when you can. This is the part that sucks the most.
Thus far: the professionalism, demeanor and overall logistics/cleanliness/safety of HSS and the folks that work here has been outstanding. Everyone is incredibly nice. At this point I have no reason to believe that Dr. Rozbruch did anything other than an excellent job, as one would expect. My legs feel like they weigh a ton each but seem otherwise fine for post-op conditions. They're heavily bandaged, so I can't see the incisions yet.
People check in on you constantly. If you push the red "I need help" button, you get someone fairly fast. The only thing that's been slow has been the PA with the meds. At this point I expect to just pass out when my body finally collapses, so not really worried about it.
I had no anxiety up to the surgery, not even the night before. I had a TON of anxiety in the hospital. It becomes real very quickly. At this point, I am VERY VERY glad I did this. Even coming out of the OR, I feel like a giant stone that's been there for decades has been lifted off my mind, and I'm only starting. I also feel great about my decision regarding Dr. Rozbruch and HSS.
If I couldn't afford either Dr. Rozbruch or Dr. Paley, I would have worked a side gig, Uber, DoorDash, anything, and saved until I could. For those that would say they can't, I met a handicapped Uber driver a year ago who has a government job and drives for Uber in the evenings so he can pay off the 3 bedroom house he and his family live in. Interestingly what convinced me to only do this with these two surgeons were the horror stories on this forum. I wanted to/still want to avoid being a statistic at all possible costs.
(Gentle note: above on surgeon/cost choice is my opinion obviously. Everyone will make the choice that fits them best. I won't engage in debate about this, I just wish everyone luck no matter what, and do your best to avoid known surgeons/facilities with risk)
I'll do my best to write comprehensively so these posts are hopefully useful and productive to those considering the surgery. I don't know how much time I'll have to answer questions, but I'll do my best. Physical Therapy apparently starts making rounds in 3 hours or. God I hope I get some sleep before then.
Precise 2.2 CLL (femurs) with Dr. Rozbruch - February 2023
Very detailed posts. Appreciate your diary. Good luck with everything.
Great start to your diary, hopefully you can keep it up 
I'm also a Rozbruch patient, feel free to reach out if you have any questions about what lies ahead or anything else 
Man it's not gonna be easy . Thanks a lot for your support, as well as everyone else!
Day One, in hospital
Pain level: 5/10 - 10/10
At about 7:30 AM, you start getting a throng of visitors. One of Dr. Rozbruch's fellows, acute pain MD, the MD that cleared me came to check in - everything from doctors to housekeeping to the TV people (seriously). Everyone is super attentive, but all I wanted to do was sleep.
The acute pain doctor said one thing that bears repeating. When the nerve block comes off, the pain block is the last to go, and you'll know it when that happens. It's absolutely true. I didn't take enough Oxy because I didn't feel like I needed it. BIG mistake. When the nerve block wears off, it's like jumping off (or up??) a cliff in terms of pain.
A lot of people, myself included, wonder how painful this gets. It's the most painful thing I've ever been through, flat out. You will hurt, badly, and it's part of the process. I could have done better if I managed to prevent, and had to catch up all day. The slightest movement will send pain through your body that is so intense you'll feel like passing out. I now chuckle at the folks that wonder how soon they can walk and weight bear, because one day in, I can't even move my legs without feeling like I've entered a VIP room in hell.
PT came in to assess. I clearly failed, I could not get off the side of the bed because I was screaming in pain. Again, this is on me, and results should be different today. The higher Oxy doses and muscle relaxer are controlling the pain nicely right now.
Dr. Rozbruch came in to visit and lit into me a little for not managing the pain. PT also left this device that just moves your leg up and down, that I did for two hours each leg yesterday. That wasn't enough and he wants me to do more. I started early this morning, it's actually great for mobility since I can't lift my leg up on my own yet.
Nuvasive rep is going to come teach me how to use the distraction machine today. I think I lengthen a little in the process but don't know how much, certainly nothing significant. That starts next week.
If all goes well, looking at discharge tomorrow. Finally slept last night - my body just gave out. Once I leave the hospital I think I'll sleep for a week.
Oh man, don't try to be a hero! You have to remember your body went through a very very very traumatic experience and it'll take weeks to subside. Personally I stopped oxy and some of the other pain meds after 5-6 days but you should do it gradually and don't rush it. Remember that not being in pain will help you move more which is important for your recovery.
Don't worry about that first PT visit. I was barely able to stand, did 2 steps to the chair and back to bed. It was so tough, I puked and almost fainted 
The next day was already much better. It was still tough but way more manageable, so hang in there. Also that device that moves your leg is great, I really liked it! It's nice to have your legs moving and was kinda fun, felt like a mini PT session (that lasts for a while). I tried to use it for a few hours on each leg.
If you want to sleep well definitely stay on your meds or you'll wake up in the pain throughout the nightÂ
Day two, in hospital
Pain level: 4/10
Switched meds and it's night/day difference. Was able to get off the bed and "walk" a few steps to the high chair. Just getting out of bed seemed like a massive accomplishment.
Another thing I've seen that really hasn't been addressed: "What exercises do you need to do prior to LL?". Dips. Lots and lots of dips. Totally serious. You will have to post up and scoot A LOT. Make sure your upper body is prepared. Also pull-ups. I'm lucky because I'm active and do both as part of my workout routine. I would legit be screwed otherwise, especially if I could not be able to use my arms and chest to support my bodyweight.
The new meds gave me the undesired effect of not being able to pee, so they used a catheter. Slept as well as you can sleep in a hospital that checks on you this regularly. Learned to use the traction device - it's super easy and I didn't feel a thing. You have to break up the distractions into 4 per day, and if you miss one you have to let Dr. Rozbruch know. Yesterday was .2 mm on each side, but only to learn. I start distracting in earnest next week.
Waiting for PT to arrive - hopefully I clear today and get to leave. I feel much more optimistic given my new meds. I went from "I can't even twitch a single muscle" to moving around the bed and getting to the side of the bed completely unassisted last night, and I can pick up my legs this morning, so I should be OK.
One step at a time, glad you're feeling better.
What pain meds are you using now, and which meds were you using beforehand? Do you think your first day would have been significantly better had you taken the meds you are now?
Best
Quote from: stretched on February 09, 2023, 02:10:40 PMOne step at a time, glad you're feeling better.
What pain meds are you using now, and which meds were you using beforehand? Do you think your first day would have been significantly better had you taken the meds you are now?
Really appreciate that, thank you!!
I took Oxycodone, 10 mg, a muscle relaxer and Tylenol. I switched from Oxycodone to Dilaudid, 2 mg, with up to 4 mg as needed.
Short of anesthesia, nothing was going to make the first day post-op better. Everyone warned me the first day after surgery was going to be horrible, from the acute pain MD to the physical therapist. When the pain part of the nerve block comes off, it's literally like flipping a switch, but in a really bad way. You have to just grit through it.
This is a really painful surgery, and hippo60 said it best:
"You have to remember your body went through a very very very traumatic experience and it'll take weeks to subside."
This is very true, and matches accounts of patients I have spoken to prior to the surgery, as well as youtube video from Cyborg4Life where he took several polls on how bad the pain is and how it de-volves over time, under normal conditions. It just sucks and all I can do is follow Dr. Rozbruch's instructions to the letter to see my way out of the pain as quickly as possible.
Day three, discharged from the hospital in the evening
Pain level: 4/10
The Dilaudid is definitely more potent that the Oxy, but the side effects are very noticeable, especially at 4 MG. I'm doing my best to take 2 MG and space out more and more. Independent pain management is a big deal of getting through this without an opioid addiction, which I'm certainly not going to have.
Today was all about clearing to leave. PT clears you first, then medical. I went through PT just fine, even with compliments. Medical was totally fine.
I did 3 hours each leg on the CPM machine (for those wondering, it's like this guy:
https://www.healthproductsforyou.com/p-kinetec-spectra-essential-knee-cpm-machine.html
But better padded/nicer. I seriously wish I had one.
Swelling: my legs are about 2x the size of normal
Movement: gets better every day, even with low doses of the Dilaudid. It is simply tiring to move because my legs feel like they have concrete blocks attached to them. I turned on my stomach (which is what Dr. Rozbruch and his fellow wanted), stood up on my own (and by that I mean posted up on the walker, took a few steps, etc., sat in the wheelchair). That's really all you can do and what's expected at this point.
What helps: getting your quads to fire again. Nothing more important. I'm doing air leg raises off the side of the bed, and an exercise where you lie flat on your back and drive the back of your knee into the mattress, and hold it for several seconds. The latter I got from PT staff, I can do 10 reps every hour.
What really helps: having functional hip flexors. This is a problem. After lying on my back for most of my stay, my hip flexors are dead and they HURT THE MOST, especially when I try to turn. The only thing I can do is do a few stretches, including when I'm on my stomach. But I'm taking my instructions seriously and came into the surgery in really good shape, which is helping.
The hospital staff was super nice and incredibly competent. No complaints other than the bed was pretty uncomfortable, but we made it work with a ton of pillows and a pillow that molds to you, which I took with me . That lived under my butt since late day one, and I would have been in really bad shape without this.
Crashing for about 24 hours .
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