Hi Everyone,
12th day post surgery: It's getting better every day. Whenever I don't want to deal with the pain, I take 2 pills Norco but I'm afraid I might run out. I was prescribed and filled 80 pills but I'm down to only 16 now. I just emailed Dr. M's assistant to ask for more. I don't know if he's going to prescribe me more. If he doesn't, I'll be screwed. I think it's healing at the incision sites so it's really itchy and I can't stop scratching. I put on some cream and it helps for a couple of hours. I'll be getting my stitches out tomorrow.
I've been doing PT exercises prescribed by the intake PT person on my own. I will be officially working with my PT today at 11:00 am. I relayed to the intake PT person about my condition and asked that she send someone who truly understands what I am going to. She said she would send someone good. She said she has never heard of, let alone worked with, someone with my condition. CLL is relatively a new concept. Let's see if my PT guy knows what's he's doing. I'll test him and if he fails, I'll get someone else. This is important so I leave no room for error.
I went to work yesterday for 3 hours. It wasn't too bad and I forgot about the pain the moment I started working. I only brought 1 Norco so when I started feeling tire, I had to call my sister. All I did at work yesterday was going through my mails, endorsing checks, and signing documents. Very easy work but I was still exhausted because the pain came back. I also had a staff meeting and everyone kept telling me how skinny I'm and that I needed to go home. Employees love it when the boss is not around so I will try to go to work whether or not I can do anything.
I've lost so much weight. I haven't weighed myself but it's possible that I lost between 15-20 lbs. I'm getting better thanks to my mom's fantastic cooking. I started working out on my upper body again now. I'll consult with my PT on what I can or can't do. I feel a little more ready for my bilateral femurs procedure day after day. Hopefully, I can be both physically and mentally ready soon. I'm still lengthening 3x a day at .25 mm each time. I don't know if the machine is working properly or not. The Tib/Fib procedure involves breaking 4 bones, not just 2, so it's more complicated. I have read diaries from other LL where the fibula bone consolidate faster than the tibia bone. I'm not getting my x-ray until March 1 so I'm worried every day. I think this is typical for other LLs as well. I'll update everyone with anything new.
Android,
Thank you for the best wishes and you're correct that no one can cook like mom. You need to pursue your dream. We only have one life to live so live it. When you did you have your CLL done or have you had it yet? What doctor did you have your CLL with? While money is important, it's not the only factor when it comes to CLL. Many CLL focuses so much on the costs. Just give yourself time and save up a lot of money. For me, it was finding the right time to do it because of my work schedule and other life matters. Good luck and let me know if you have any questions.
LAGrowin,
I don't like bothering anyone but sometime when they offer and you really need, you just have to take it. This is an important procedure so I leave no room for error. Currently, I'm lengthening 3 times a day and .75 mm each time. Today is my 5th day of lengthening. I haven't noticed anything so I don't know if it's working properly. I think this is the one concern that many LLs have and hopefully there will be some way to tell whether or not the person is lengthening properly in the future even before taking the first x-ray. How's everything with you? Are you feeling any pain still? Are you back to work?
Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.
Hi everyone,
13th day post surgery: I had my first official PT session yesterday. The guy is nice and experience but said he had never worked on CLL patients before. He said the concept is similar to other types of injury recovery and he had heard of LL for limb deformity correction, not for cosmetic reason. I told him to do some more research about CLL.
He said I improved a lot from the report the intake PT person gave him. I told him I have been exercising religiously. I do 5 exercises before each lengthening session. I was able to use my exercise bike yesterday for the first time for 10 minutes but I was very slow. I did 2 more sets on all the exercises and 20 more minutes (10 minutes each) on the bike after he left.
He said there are 2 types of patients: 1 he has to push them and 2 he has to tell them to slow down and I belong to the latter group. He said 2x a week of manual PT is sufficient and allows my tissues to heal and I can do the exercises myself at home. Therefore, we scheduled my PT sessions for 2x week.
Last night, I woke up at 2:00 am with some pain and it was manageable so I didn't take any pain meds. I woke up again at 4:00 am in a lot pain. I think it was from the strenuous amount of exercise I did the day before. It was so bad that my mom has to massage my feet until the pain meds kick in. I was able to fall asleep about 30 minutes after. I woke up this morning with some pain so I took 1 Norco before the scheduled time. I just did my 5 exercises and lengthened .25 mm. I'll ride my exercise bike for 10 minutes, take a shower, and head to work. I have an appointment with my primary care doctor today to have my stitches removed. I'll update everyone with something new later.
Quote from: Optimistic1 on February 27, 2018, 06:12:00 PMAndroid,
Thank you for the best wishes and you're correct that no one can cook like mom. You need to pursue your dream. We only have one life to live so live it. When you did you have your CLL done or have you had it yet? What doctor did you have your CLL with? While money is important, it's not the only factor when it comes to CLL. Many CLL focuses so much on the costs. Just give yourself time and save up a lot of money. For me, it was finding the right time to do it because of my work schedule and other life matters. Good luck and let me know if you have any questions.
Definitely will turn dream into reality soon, gears are in motion. Haven't started my journey yet, but will talk more about it soon once it's set in stone. As for timing I'm quitting my job and taking a year off; not planning on moving back to the city I'm in now since I'm kinda over it anyway.
Glad that PT it going smoothly, I think it's good that you're in the latter group. Mentally easier to cut back than ramp up!
Quote from: Optimistic1 on February 27, 2018, 06:12:00 PM
LAGrowin,
I don't like bothering anyone but sometime when they offer and you really need, you just have to take it. This is an important procedure so I leave no room for error. Currently, I'm lengthening 3 times a day and .75 mm each time. Today is my 5th day of lengthening. I haven't noticed anything so I don't know if it's working properly. I think this is the one concern that many LLs have and hopefully there will be some way to tell whether or not the person is lengthening properly in the future even before taking the first x-ray. How's everything with you? Are you feeling any pain still? Are you back to work?
Hi Optimistic1,
Happy to read that you are slowly progressing.
I am still feeling pain, but nothing too bad, it's day by day, the days where PT is more aggressive naturally leaves me in more pain through the day and night. I am starting to get out to my office for only 3-4 hours per week and then handling certain things from home. It is challenging but my work set up has made it doable.
You're blessed to have your mother helping you. It is amazing that even in my forties with my condition my mother has stopped by to massage my feet while I fall asleep. It is times like these we realize how important family is.
Again, happy to hear that things are moving positively for you. It certainly gets better with every passing week.
16th day post-surgery: I'm feeling better every day. I no longer experience the pain and pressure in my legs when I put them down onto the floor while transporting myself from my bed to the wheelchair. I don't experience a lot of pain waking up in the morning after a long night of sleep without any pain meds. I'm taking 1 Norco every 4 hours plus half a pill of Ibuprofen. This really helps with the pain after every PT session. I have PT every Tuesday and Thursday. My PT guy said it's better to have it 2x a week and let the legs heal first plus I exercise 3-4x a day on my own so it should be sufficient. I've been coming to work for 3-4 hours and it's not easy. I think it will get much better soon but then I will be having my femurs done around that time. I haven't done my femurs and my experience with tib/fib is not too bad.
Day 9 of lengthening and so far so good but I still don't know if everything is good as I haven't taken my x-ray. Dr. M said I should take it on March 8, 3 weeks after surgery. I don't know what my bone consolidation rate is in either the tibia bone or fibula bone. As I have previously provided, Dr. M. stated that the tibia bone takes at least 4 weeks to show any sign of consolidation. However, I have read diaries on here and the old forum where some CLL experienced early consolidation in the tibia bone. Let's hope I don't have this problem. Currently, I'm taking Vitamin D3 2000iu, Calcium 600 mg, Vitamin C 1000mg, Vitamin B12 5000mcg, and Biotin 10,000 mcg. I also resume taking my Fish Oil and Viviscal (to promote hair growth). You don't have to take all of these. I used to take all of these even before CLL.
I think because I'm still in my very early stage of lengthening to experience any sign of ballerina feet and other issues. I do experience stiffness but maybe because of the swelling and the effect of the surgery. My PT said my flexibility is very good and almost as a normal person. I will continue to stretch and eat healthy. I do experience some breakout on my face. I think it is because I'm taking a pain meds every day. Please feel free to ask me any questions you might have. I will try my very best to provide you with as much information as possible so may adequately prepare for your own journey. I'd like to thank those who posted their diaries on the forum and provided me with a huge amount of information about CLL. Of course, you should always do your own research.
Hey Optimistic, sounds like you're doing really well. I just had my femurs done by Dr. Mahboubian on March 1st, and everything went well. I did not experience the extreme pain that some people do. I'm very happy with Dr. Mahboubian so far, good luck on your femurs.
Hi Short2tall,
Thank you and congrats on your femurs. Have you been released from the hospital? Today is your third day so you should have been released by now. There’s another gentleman by the name LAGrowin who just got his femurs done not so long ago. He’s put together a very detailed journal. I think everyone reacts differently to these procedures. Some experience more pain while others can tolerate it pretty well.
It’s not so bad for me on the tib/fib. The biggest problem I had while I was in the hospital was that I couldn’t use the portable urinal or commode so I had to constantly walking to the restroom and spending hours in there trying to pee. If I didn’t have this problem, it wouldn’t have been so tough. I’ve been practicing peeing in the urinal for my femurs. I’m improving so far.
What’s your pain level now? How many Norco are you taking now and how often? What are the biggest problems you’re facing now? What tips do you have coming into this procedure? Are you having problems sitting on the toilet? Are you living by yourself or having help? Sorry for asking so many questions. I hope I should be 60-70% recovered by the time I do my femurs. Thank you.
Hey, no problem, ask away. And yes, I've been following LAGrowin's diary as well. I was actually released after the first night because I was doing so well. I didn't have an issue using the urinal, but the catheter removal certainly was painful. I have yet to try to sit on the toilet but I intend to at least practice lowering myself down onto it. As far as my caretaker situation, I got really lucky. I found someone who is both a caretaker and a physical therapist. She's been great so far, and is spending about 4 hrs a day with me right now. I'm from the east coast and I'm staying in a hotel here in LA for the duration of the process. So far the only painful part of the femur surgery has been the screws holding the precise 2 in the upper part of my right femur, near my hip. I can sometimes feel a sharp pain there, especially when I first stand up with the walker. You have to be very careful when making any kind of turning motion, as Dr. M will tell you, so at least the pain reminds me to take it really easy when turning or transferring. I have been taking one Norco when I wake up, maybe one more during the day, and then one before bed. I also tend to take one if I wake up in the middle of the night to help me go back to sleep. Sleep has been pretty good. Are you worried about experiencing any additional swelling or anything in your lower legs after you get the femurs done? I've seen where some others have mentioned blood flow,etc, to the still broken tibias could be compromised when you have the femurs done afterward?
"Are you worried about experiencing any additional swelling or anything in your lower legs after you get the femurs done? I've seen where some others have mentioned blood flow,etc, to the still broken tibias could be compromised when you have the femurs done afterward?"
short2tall,
Yes. This is one of my main concerns in additions to the double pain from the recovering tib/fib and the incoming pain from the femurs. Also, I don't know how weak my legs will be when both my tib/fib and femurs are broken.
The swelling in my legs are almost gone, except for the bruises. I stopped icing and/or sleeping with pillows elevating my legs anymore. I don't know anyone who had done tib/fib and femurs within a month period for me to consult about the possible problems. I've sent Dr. M an email about this. I hope that my swelling in my lower legs will be completely gone by the time I do my femurs. I read your journal. Thank you for sharing your experience with us. Let me know if you have any questions and do keep us posted. We want to hear how you do.
Optimistic1
17th day post surgery: I feel more pain now than before. I think maybe because I've been overworking myself with PT and riding the exercise bike. I do 20 minutes on the exercise bike 3 times a day. I drive to and from work and other places. I also do 6 different exercises 3 times a day. By night time, I'm all exhausted and in pain. Instead of taking 2 Norco, I take 1 plus half a pill of Ibuprofen. This helps a little bit but I still experience some mild pain in the left region of my right knee.
I don't know if I'm overworking myself but I like exercising. My flexibility is much better now and I can ride my exercise bike comfortably with no pain. I read about ballerina feet and duck a** problems as the lengthening passes certain centimeters. Some LL didn't experience this and I'm trying my best to avoid this if I can. If anyone of you have any tips, please share. Thank you in advance.
I woke up with a lot of pain this morning so I took 1 Norco plus half a pill of Ibuprofen. My mom massaged my feet for about 30 minutes. I took a shower then took her out for breakfast then we went grocery shopping. Yes. I drove my mom around today. I've been driving to and from work for several days now. I only live about 15 minutes from work. When I got home, I was exhausted and in pain so I took a Norco before my scheduled time.
Everything else is good. I'm still lengthening 3x a day and .25 mm each. I haven't noticed changes. I can't wait to take my x-ray on March 8 which is this Thursday. Hopefully everything is fine. I will try to find a way to post my x-ray on here. One thing, when I was transferring from my wheelchair to my car today in the parking lot, my left hand slipped because I didn't tape down my cushion so I almost fell. I put my left leg onto the pavement and applied a lot of weight to it to prevent myself from falling. I experienced some light pain for a couple minutes in my left calf. I hope I didn't break the rod in my left tib/fib bone. I'll update everyone with new information soon.
Just a minor thing. Many of you on here are very nice and polite when asking questions. Please keep up the good work. Remember, we don't have to do this and we're not getting paid doing it. It increases my pain when I sit in front of my computer typing my journal but because I want to help I try not to think about it. I truly appreciate those before me who underwent their procedures and shared their first hand experience. They are my source of encouragement. I feel I owed them to pass on the torch. I haven't experienced first hand anything bad about Dr. M. My surgery went well and I'm recovering properly. Even if I hear something bad, which I haven't, I still have to investigate and perform my own research before reaching a conclusion.
Optimistic1
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