Wow, you're a trooper. Glad that taking the ibuprofen didn't lead to any complications. It can be a difficult decision when timing is a big factor. Hope that your pain becomes manageable in the coming days.
Thank you, Android. I exercised so much at the hospital that some of the incision sites started to bleed again. I wanted to be able to move so bad that I tried really hard and to the point where the physical therapist had to step in to stop me. I will try to keep everyone posted every step of the way so any potential CLL who wants to do both bilateral tib/fib and bilateral femurs at the same time can gain from my experience before having to go through with it.
I know the tightness is going to be very bad as I’m lengthening both regions at the same time. However, I will try my best to deal with the extreme tightness. Dr. M said the reason I was experiencing slow or non bone growth was due to me taking the Ibuprofen. The point to take away here is do not take Ibuprofen and listen to your CLL dr., not your primary care dr. Lol.
Hell Optimistic1, glad to hear that you're well overall and that you were able to get through that obstacle caused by the ibuprofen.
What you're doing is admirable. I can't even imagine, but as you know time flies and before your know it you'll have passed the more difficult weeks.
Good to know you have family with you.
Call me if you like when you're up to it and I'll share some tips I learned. Things will get much easier between weeks 2-3.
Get some rest and keep us posted when possible. Congratulations!
Hi LAGrowin,
Thank you. I have been reading your diary over and over to understand and know what to expect for my condition. Thank you very much for taking the time to put it together. People like you and those who came before us really laid the foundation for a stronger CLL community. I truly appreciate it.
I'll be in Burbank until this Saturday. I'll let you know if I need anything. Thank you and good luck to you on reaching 2 inches. I'll update everyone on here about my condition now.
5th day post-op (Surgery was on 3/15/18): I have been dealing with the pain and immobility since the surgery so I didn't really have the energy to do anything or to continue this diary. I feel better today and was able to get off the bed last night with less effort than before. I having a locked knees condition now. It started since yesterday morning. I notice that whenever I sleep for over 4 hours straight, I experience the symptom. Therefore, if you want to avoid experiencing this condition, try to sleep only about 2-3 hours at the time. I think the drawback from this is your body won't heal as fast compared to if you're able to sleep longer.
I am having regular bowl movements now. I notice that eating oranges, strawberries, and drinking milk in addition to taking stool softener helps with the bowl movement. I have locked knees every morning now and I spend about 30 to 45 minutes to stretch and it would go away. I haven't regained much of my flexibility but enough for me to move around. I exercise every time I have a chance and I take a norco before I do that. This helps with the pain. My pain is much more manageable now. I don't want to jinx it but I don't feel much pain in my tib/fib region anymore. I haven't experienced any double attacks from both my tib/fib and femurs at the same time for the last 2 days. My tib/fib have been good to me. I still experience some pain when moving in and out of the wheelchair, in and out of bed and onto the toilet. However, I feel this pain will go away soon. My appetite is not completely back yet. I'm back lengthening 3x a day at .25mm on my tib/fib now. I'll see Dr. M this Friday for my femurs first post-op. Let me know if you have any questions now.
Thanks for updating even with all the pain and discomfort.
If you can manage to do it, maybe you can change your sleeping habits a bit, like biphasic sleep. Could tough when you have appointments to keep, not to mention the unpredictable cycles of pain. Glad that your tibias are manageable now.
Hi Android,
I think I know what you're talking about. I saw a video clip on YouTube about it as well. I don't think I have the energy or the will power to do that now but it's something worth considering when this is all set and done. Thank you for the information.
Optimistic1
10th day post-op: I had my first post-op appointment on March 23th for my femurs and flew back home on March 24th. I was given the ERC machine and instructed to lengthen 4x a week and .33 mm each time. After that, I will go down to 3x a week and also at .33 mm each time. My pain is getting better but every time I move around in a car or fly around, it aggravates and taking Norco doesn't really help much. I have more pain on the right of my right thigh. It seems to be constant and I try to stay still to not aggravate it. My thighs are still really tight and stretching does bring pain but I have to stretch to get rid of the tightness. Fortunately, I don't feel much pain in my tib/fib anymore.
I also had my x-ray for my tib/fib at the post-op and I continued to have no bone growth in this region. Dr. M attributed this 100% to me taking Ibuprofen for 3 weeks immediately after the surgery. I did some research and it's true that taking Ibuprofen blocks the production of prostaglandins, which are chemicals made by the body to help the healing of broken bones. When these chemicals are blocked, theoretically, bone healing can be delayed. I have to stop lengthening my tib/fib for 5 days then go back to 2x a day. Dr. M recommended taking Silica in addition to Vit. D and Calcium. I'm still researching the right one. Now that I'm home, I will try to eat health and have a more consistent diet plus taking all the recommended supplements. That's pretty much all the updates so far.
Bilateral lengthening is a very bad choice.
It puts great stress to the body and to soft tissues and it is orobably the reason why you have poor bone growth.
Even 1 segment LL is very stressful for the body, 4 fractures at the same time is too much.
I thought that Mahboubian was a good doctor but doing 2 segment LL at the same time means he cares more for money than for safe results.
After that I put him out of my list for my second LL.
Anyway I hope you'll become better.
Keep strong.
18th day post op: It's been awhile since I last updated my journal due to the constant pain I am experiencing after I had my femurs done. I think because my body was substantially weakened after my tib/fib procedure (February 15, 2018), I experience more pain when I underwent another surgery (March 15, 2018) almost immediately right after. PLEASE DO NOT DO WHAT I DID. Only do one surgery at a time, completely recovery, and then do another one. I can't afford to do that. I own and run a company. I'm at the peak of my career. I have to take major losses every day that I don't work. Therefore, I cannot afford anymore downtime. If you're working and have to take a break or quit your job, do it. It's not that bad except that you might not have enough money to carry on with life thereafter. My point is you should do this surgery as soon as possible. You don't know where you'll end up in life and you might be in a position where money is no longer an issue but you just can't set aside 4-6 months to do this surgery.
In addition to financial losses, I have staffing problem at my company the last couple of weeks. My manager decided to quit and only gave me two weeks to find a replacement. He's a very intelligent employee so it's going to be tough to find someone like him in such a short period of time. My other manager will be taking her maternity leave soon so I have to hire someone to do her work while she's gone. I've been reviewing resumes and interviewing candidates for these two positions. To make matters worse, I got hit with 3 HOA bills: 2016, 2017, and 2018 for a total of almost $20,000.00. I own a new building where my company is operating in and never got the bill in 2016 or 2017. All of the sudden, they demanded that pay all 3 years together. I did pay but realized that they inflated many charges and some of the charges are don't even exist. I proposed that all owners meet to resolve all issues together. My birthday was last week so I'm 34 now and it wasn't a good birthday as you can see. It's very difficult for me to handle these issues due to the constant pain I'm experiencing. I'm in my third week of my femur procedure but Norco doesn't work that good anymore. I still experience pain with pain meds. The pain level with pain meds is still around 3-4 whereas it was 0-1 before the femur procedure.
I feel a little better today and the nerve pain on the right side of my right thigh is not so bad with pain meds. I resumed lengthening my tib/fib a couple of days ago and I went down to 3x a day on my femurs. Nighttime is the worst and especially when I exercise (PT) during the day. I can only sleep 1-2 hours at night and 1-2 hours during the day due to the constant severe pain in my thighs. My mom massages my feet for hours during the day and at night to help with the pain. It helps a little. My mom is getting tired doing it so my female friend is taking over. I think foot massage is very helpful with pain and especially when you're waiting for the pain meds to kick in.
My appetite is somewhat okay now but not as good as before when I had my tib/fib procedure done. I have gained about 1 inch in my tib/fib and .5 inch in my femurs. My legs look so long now. I think part of it is because my legs got so skinny so they give the impression that they are much longer than they really are. I'm happy to see my legs getting longer. I don't feel the tightness in my tib/fib and calf muscles yet. I feel a lot of tightness in my thighs and I think it's the effect of the surgery as I've only lengthened less than .5 inch in that region. I'm really worried that they will get tight soon and since I'm lengthening both regions at the same time, my lengthening will be substantially limited. However, at least my proportion will be better compared to if I only lengthen 1 region. The other concern I have is the lack of bone growth. I didn't have much bone growth based on my last x-ray. I stopped taking Ibuprofen (main culprit) about 3 weeks ago and have been taking Vitamin D and Calcium religiously. I am hoping to see some bone growth at the next post op with Dr. M. I have already booked my flight and will be flying back home after the post-op in the same day.
Tips:
1. Try not to move your legs so much unless you need to. It's okay to exercise but when you're done, rest and get some sleep so the muscles can heal.
2. If you can pee in the urinal, do so to limit the amount of times you have to get in and out of bed.
3. Get foot massages but only at the bottom of your feet. My calves are still sore from the tib/fib surgery.
4. Don't wait for your pain to get to so high before doing something about it. Rectify it right away because it will take longer to bring down your pain when it's at 8 or 9.
5. If you can only sleep a couple of hours at night, get some sleep during the day.
Any questions, please feel free to ask me.
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