Yes, you are right. I looked at Jim's diary again, it was hexapod installed ring. Jim told me that you were on blood thinner in order to reduce fat embolism risk. But once it happens, it can lead to death as far as I know.
Are u currently alone there? I mean Is there anyone ( (relative or friend) there helping you to do daily staffs?
You are really a courageous person, having 2 bulky frames around femur should be something that affects negatively your mental health. But it is the case that happens when someone can't afford internal lengthening method and want to save time by not doing unilateral lengthening.
In terms of staying in hospital, if you stay there during whole lengthening process, it will cost you around 6000$ which is the way more expensive than the surgery itself. how would you describe your situation if you choose to lengthen your each femur separately? Would you still stay in the hospital for a month?
Bilateral Femur Lengthening with Dr. Kulesh & Dr. Solomin
I'm glad you decided to share your journey with us. We're all lucky to have detailed diaries with pictures.
I hope we can contribute back in some way, have you ever have a time of need, like when wanting opinions on x-rays/other CLL aspects, or if feeling down.
Quote from: Pope on June 16, 2018, 03:24:22 PMAnd this LL route is definitely not for everyone. I like to think that I have a lot more psychological endurance and willpower than most people.
Great to hear it. Your health will obviously take a hit, but I hope it endures and stays as good as your mental fortitude!
Nice to hear you've been in contact with Jim, too.
Quote from: Pope on June 16, 2018, 03:24:22 PMI really appreciate it, thank you! I was well aware on how difficult bilateral external femurs would be even before Dr. Kulesh and Dr. Solomin warned me.
Good! That makes me more relieved. You are aware of the risks, and will probably deal better with any obstacle.
Quote from: Johnson1111 on June 16, 2018, 04:13:44 PMThe first couple weeks how did you get around with both femurs operated on? What was your strategy and how did you do it?
You're right about the private clinic being much more expensive and I also had 20 days there listed which is alot. I also was doing 3 surgeries with LATN opposed to 2 (Not sure if that factors in)
The first day after my operation I was bed ridden and still had the catheter on. I didn’t really have a reason to get out of bed and I wasn’t sure if I could get up anyway. I was only able to sit up and move myself around different parts of the bed. I could barely move my legs at the time, they felt really heavy, so I had to move my legs with my hands to move around on the bed. Once my physical trainer came in with my walker, I quickly taught myself to use it and walk to the bathroom. It’s easier (for obvious reasons) for me to move my legs perpendicular to the ground than parallel when I’m on the bed. To get off the bed I need to bring down my legs one at a time. I would then spread my legs apart so the frames won’t hit each other or the walker as I walk. I mentally prepare myself cause there’s no going back once you’re up. You quickly get tired so there’s no time to think, you just have to keep going. After I decide I’m ready, I pick myself up with both hands on the walker (I have a lot of upper body strength so this might not be as easy for everyone) then very slowly walk towards the bathroom door. The annoying part is that once I get to the door, I have to turn around, walk backwards slowly so that I can mount my ass on the toilet and use the walker to help bring myself down.
Quote from: Tiger9898 on June 16, 2018, 04:30:27 PMYes, you are right. I looked at Jim's diary again, it was hexapod installed ring. Jim told me that you were on blood thinner in order to reduce fat embolism risk. But once it happens, it can lead to death as far as I know.
Are u currently alone there? I mean Is there anyone ( (relative or friend) there helping you to do daily staffs?
You are really a courageous person, having 2 bulky frames around femur should be something that affects negatively your mental health. But it is the case that happens when someone can't afford internal lengthening method and want to save time by not doing unilateral lengthening.
In terms of staying in hospital, if you stay there during whole lengthening process, it will cost you around 6000$ which is the way more expensive than the surgery itself. how would you describe your situation if you choose to lengthen your each femur separately? Would you still stay in the hospital for a month?
I’m alone here and only told one person just so they could send me my money through Western Union. I’m at the hospital so the staff here can help me do daily things such as serve me my food, unnecessarily clean my room everyday, empty my pee container, etc. To be honest, my mental health is fine. I’m not depressed or regret anything thus far but I am EXTREMELY BORED lol. As I’ve stated before, this surgery isn’t for everyone but I truly felt this was something I personally could endure.
Yes, staying at the hospital this long even at the municipal clinic definitely adds up but I was financially prepared if I had to do it this way. Lengthening each femur seperately would definitely be many times easier, if you have at least one fully functioning leg while lengthening the other. I’d be 100% sure that I’d be out of the hospital on my own if this was the case. But I have obligations back home so I wouldn’t be able to be gone long enough to lengthen each femur seperately. You can actually lengthen one femur, get the nail in, go home, and come back again to do the other. But the idea of having a discrepancy for that long really bothered me. One alternative Dr. Kulesh suggested doing one leg at a time was:
1st surgery - external fixation for 1st femur
lengthening, correction of the 1st femur
2nd surgery - nailing of 1st femur, external fixation of 2nd femur
lengthening, correction of the 2nd femur
3rd surgery - nailing of 2nd femur
Quote from: myloginacc on June 16, 2018, 04:33:49 PMI'm glad you decided to share your journey with us. We're all lucky to have detailed diaries with pictures.
I hope we can contribute back in some way, have you ever have a time of need, like when wanting opinions on x-rays/other CLL aspects, or if feeling down.
Great to hear it. Your health will obviously take a hit, but I hope it endures and stays as good as your mental fortitude!
Nice to hear you've been in contact with Jim, too.
Good! That makes me more relieved. You are aware of the risks, and will probably deal better with any obstacle.
Yeah, I definitely saw that it could be beneficial for me to see other people’s opinions on my x-rays and experiences! I know there’s a lot I could learn from people on this forum, especially the veterans.
I’ve definitely lost weight since I got here but I’m motivated to sustain as much as I can and recover what I’ve lost as efficiently as I can. I don’t want to rush anything, I’m just trusting the process 
Thanks for starting this thread, Pope. Clear, concise, and good photos to boot. Looking forward to more, best of luck!
The bright side is that your lengthening and finishing time will be much shorter lived than if you did unilateral. However do you think consolidation and time walking would have been faster with unilateral as by the time you pinned your second leg the second one would have already been about consolidated?
Sorry I have alot of questions in my head for you and as I spent months talking back and forth through email to both of the doctors in Russia and almost pulled the trigger at one point.
Quote from: Android on June 16, 2018, 05:13:53 PMThanks for starting this thread, Pope. Clear, concise, and good photos to boot. Looking forward to more, best of luck!
Thank you
Quote from: Johnson1111 on June 16, 2018, 05:25:29 PMThe bright side is that your lengthening and finishing time will be much shorter lived than if you did unilateral. However do you think consolidation and time walking would have been faster with unilateral as by the time you pinned your second leg the second one would have already been about consolidated?
Sorry I have alot of questions in my head for you and as I spent months talking back and forth through email to both of the doctors in Russia and almost pulled the trigger at one point.
I can’t answer that with complete confidence but theoretically it should be quicker to consolidate one bone at a time, I’m not sure by how much though. Everyone is different and regenerates bone at different speeds as well. One thing I’m sure about however, is that working on the recovery of one leg at a time would be much easier. But we should also consider that after nailing your first leg, and getting the frames on the 2nd leg, you technically have two broken bones that you’re regenerating, so no, your 1st leg most likely will not have consolidated by the time you install the frame on the 2nd leg. If it was already consolidated, why even bother going through the trauma of nailing? Specifically addressing your question whether bilateral or unilateral will be quicker to get you back to walking on two feet, I’m not really sure- there’s so many components to consider and possible complications, whether major or minor, that it would be difficult for even a competent doctor to answer. At the end of the day though, it’s obvious that unilateral lengthening is a much safer route to go.
So the price for external is basically 2630 USD. Can someone tell me why it's even 5x cheaper than Parihar?
Quote from: Bruce Wayne on June 16, 2018, 05:56:54 PMSo the price for external is basically 2630 USD. Can someone tell me why it's even 5x cheaper than Parihar?
That’s just the first surgery. It also costs money to do corrections (About 27.000 Rubles). And then you need to have the frames removed (About 70.000 Rubles in the municipal clinic). I also recall that Dr. Parihar offers a package so I believe there’s other things that come with his price. I’m sure even then, it’s still cheaper here. Though, I want to point out that the price is also a lot more when the procedure is done at a private clinic. I’m not sure whether or not doctors will get paid more if they operate there. And although I can’t answer your question, I could give my best opinion based off what I’ve observed. So in Russia, doctors make much less compared to other countries. I haven’t asked my doctors how much they make because thats rude but I’ve had a nurse openly tell me that he only makes about $400 a month and my physical therapist who only makes about $500-$600 a month. This is just to give an idea on how much people here make. I’ve also read that people, on average, make $500 a month here. Another thing I’ve observed was that everything is much cheaper- cost of living like food, transportation, hotels, etc. In the center of the city here I could get a good meal for $5. At the center of NYC it would cost $20+ for a meal equivalent to what I can get in St. Petersburg for $5. I want to again restate that this is just my guess- but I believe it’s a combination of the government, unclear tax guidelines, and the low cost of living.
You must be logged in to post a reply.