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[crimsontide]

dudee.... i feel the same way

i thought id be walking fine in a few months...  if someones doing external.... man... if you do over 7 cm... youre looking at like 14 to 15 months until you sort of walk normally... thats the reality

sux!!!

[KiloKAHN]

It's why I wouldn't recommend doing another segment without a huge break in between. After I get walking normally, I'd at least want 2 or 3 years of feeling normal before I decide to handicap myself again. Doing two segments at once, you'll probably feel like crap in the recovery period.

[KiloKAHN]

My local doctor responded to the e-mail I sent him that had Dr Parihar's response to me about not removing the frames. He wants me to get a third opinion with a separate otho at the same office. I just told one of the staff who notified me of it that instead of getting a third opinion I'd rather just wait until both doctors (local and Parihar) are in agreement about frame removal.

It would be nice to remove the frames now and if I were a more impatient person I'd book the removal appointment right away. But if Dr Parihar says the risk of the regenerate bending or refracture is too high, then if he's correct and it does happen I could probably be faced with a number of problems, such as having to put a frame back on or even losing height that I gained.

Kind of sucks having doctors in the same field telling you completely different things, though. It would be nice if their reccommendations were the exact same so I didn't have to make my own decision on who to listen to. 

[crimsontide]

do you try to walk without a walker or crutches?

[KiloKAHN]

I haven't been brave enough to try walking unaided. I get the feeling my muscles are still too weak to hold myself up.

[YellowSpike]

I haven't been brave enough to try walking unaided. I get the feeling my muscles are still too weak to hold myself up.

I know what you mean. That's what held me back for a while, even though my doctor was telling me I could walk. You will get there my friend!

Does your doctor believe you can walk unaided now?

[Smallguy]

Kilokahn,

It's always better to be safe than sorry. Make sure you take those frames off only when the doctor absolutely say that you can.

What about the calcium tablets (vegan variety), multivitamins, and greens? Have you been taking those? I believe they aid with bone formation. I would recommend that you perform daily physical activities, which will help with circulating those blood to the calf areas.

Personally, I did 200 sit-ups daily plus a variety of other exercises routines while I was in India. Is there a gym where you stay? Inactivity will lead to muscle atrophy and hinder recovery. Make sure you exercise whenever possible, though I know the frames and the pain will make it difficult to move around.

It's also good to have a LL buddy or a roommate, so you guys can encourage and advise one another.

And I don't know about the place where you are stay, but mine was close to the mall. I used it make it a habit of going there every day (even in frames) for a cup of coffee or for lunch. You'll be surprised by the number of Indian women who are interested in you just because you are a foreigner.

I had a nurse who said she liked me (while I was laying in a hospital bed going for my 4th surgery) and a few contacts at the mall (while I was in wheelchair). Life is short, make sure you have fun whenever possible.

Cheers,

[KiloKAHN]

I know what you mean. That's what held me back for a while, even though my doctor was telling me I could walk. You will get there my friend!

Does your doctor believe you can walk unaided now?

I haven't asked him, but my body is telling me the answer is no. Freaking tibias, man...

Kilokahn,

It's always better to be safe than sorry. Make sure you take those frames off only when the doctor absolutely say that you can.

What about the calcium tablets (vegan variety), multivitamins, and greens? Have you been taking those? I believe they aid with bone formation. I would recommend that you perform daily physical activities, which will help with circulating those blood to the calf areas.

Personally, I did 200 sit-ups daily plus a variety of other exercises routines while I was in India. Is there a gym where you stay? Inactivity will lead to muscle atrophy and hinder recovery. Make sure you exercise whenever possible, though I know the frames and the pain will make it difficult to move around.

It's also good to have a LL buddy or a roommate, so you guys can encourage and advise one another.

And I don't know about the place where you are stay, but mine was close to the mall. I used it make it a habit of going there every day (even in frames) for a cup of coffee or for lunch. You'll be surprised by the number of Indian women who are interested in you just because you are a foreigner.

I had a nurse who said she liked me (while I was laying in a hospital bed going for my 4th surgery) and a few contacts at the mall (while I was in wheelchair). Life is short, make sure you have fun whenever possible.

Cheers,

Most of my exercise consists of walking in a circle over and over in my office. According to Dr Parihar you need to walk around and not just back and forth, although I didn't ask him why one is better than the other. I've been taking oyster shell calcium, zinc, vitamin D and vitamin C. I get a lot of protein too b/c I eat a lot of red meat.

There is a gym at my apartment complex but I feel too vulnerable going outside with my frames still on. I think I'll be able to do a lot more exercises once these frames are off because I'll have more ROM in my ankles. These wires impede a lot of movement just because of the pain they cause.

When I was in India I didn't like talking to any of the women there outside of my physiotherapists. Was too nervous about making a cultural faux pas. I get the feeling that most women there aren't into flings and would want to attach herself long-term to any guy they get physical with.

[samruddhi]

Hey , Bud  was reading about you, actually i too want to go through LL, its hard but from this suffering,
where are you now in which hospital of india, coz i am also from India want see what exactly the procedures is about,
It will also boost you as i am a very happy go lucky guy.
please replay.

[alps]

Most of my exercise consists of walking in a circle over and over in my office. According to Dr Parihar you need to walk around and not just back and forth, although I didn't ask him why one is better than the other.

Walking in circles involves a constant change in directions which obviously is more challenging.

[crimsontide]

walking really is the only thing that gets you better


i  did the same thing you did in my apt... walked a lot the other day...then got very sore

today my calves are not toght at all, and feeling much better

[crimsontide]

I haven't asked him, but my body is telling me the answer is no. Freaking tibias, man...

Most of my exercise consists of walking in a circle over and over in my office. According to Dr Parihar you need to walk around and not just back and forth, although I didn't ask him why one is better than the other. I've been taking oyster shell calcium, zinc, vitamin D and vitamin C. I get a lot of protein too b/c I eat a lot of red meat.

There is a gym at my apartment complex but I feel too vulnerable going outside with my frames still on. I think I'll be able to do a lot more exercises once these frames are off because I'll have more ROM in my ankles. These wires impede a lot of movement just because of the pain they cause.

When I was in India I didn't like talking to any of the women there outside of my physiotherapists. Was too nervous about making a cultural faux pas. I get the feeling that most women there aren't into flings and would want to attach herself long-term to any guy they get physical with.

thats another negative to externals... the damn ankle ring  definitely contributes to the ballerina issues... my ankles were swollen until i had frames removed

realistically, to be able to walk unaided normally, 5 or 6 months should do it for you

[KiloKAHN]

Hey , Bud  was reading about you, actually i too want to go through LL, its hard but from this suffering,
where are you now in which hospital of india, coz i am also from India want see what exactly the procedures is about,
It will also boost you as i am a very happy go lucky guy.
please replay.

Hi,

I left India way back in October. Now I'm healing back home. I did my surgery at Mangal Anand Hospital in Chembur, Mumbai with Dr. Mangal Parihar.

Walking in circles involves a constant change in directions which obviously is more challenging.

I guess the constant shifting puts more pressure on the bone than just walking straight constantly.

thats another negative to externals... the damn ankle ring  definitely contributes to the ballerina issues... my ankles were swollen until i had frames removed

realistically, to be able to walk unaided normally, 5 or 6 months should do it for you

The funny thing is the ankle ring didn't bother me at all while I was lengthening, but during consolidation it's quickly become the most bothersome. I wouldn't mind having to continue wearing this if it weren't for the ankle ring. My physiotherapist said he doesn't want me to come back until my frames are removed because the ankle ring prevents him from doing a lot of stretching exercises on me.

[crimsontide]

yes, the ring and pins suck!!!!!


i could not do a thing with the frames on...they limit motion...

life will be easier oce the fixator is off

[maximize]

Congratulations on your awesome journey. It looks like you really planned this out well and have got the process down to a text book response so far. No major complications. Good follow up by your doctors. Good consolidation so far. Playing it safe. Really fantastic. You seem like a very even-keeled, calm, and measured person which has served you well.

I have a few comments/questions.

1) First, I might have missed something, but I didn't see how you came to decide between Dr. Dhawan and Dr. Parihar. Both offered Hexapod and had similar concepts of how to fix the fibula. What made your choice Dr. Parihar?

2) In all of your research, did you come across any surgeons who struck you as reputable and were using the Hexapod in North America or Europe?

3) One of the things that struck me reading your diary, especially in the context of the other discussion we were having about methods to avoid chronic joint pain and OA in LL, is that of all the pains you describe in this thread, none of them seemed to be deep joint ankle/knee pain. Most of the pain you experience seems to be related to stretching of the soft tissues and nerves, as well as perhaps pressure from the pins themselves. Calf pain, equinus pain, below the knee pain, etc.

Understanding that you are still in your frames and thus can't truly test them yet, how do your joints themselves feel? Besides the stiffness externally from the muscles and ligaments, do the axes "feel" correct? Does the front/back motion feel natural? Do you have any sense of a "catching" or "clicking" or "internal friction/grinding"? I know it will be hard to get a clear answer on what I'm asking. Even children with growing pains can get a deep joint ache as everything stretches, and it doesn't mean there's anything wrong inside their joints. But still I'm curious for your perspective.

4) I agree with your idea that if you can avoid drilling into the tibia it may be ideal. This sort of Ilizarov with Hexapod you chose is really as "minimally invasive" a leg lengthening as can be performed while maintaining good alignment.

I wonder if an even better alignment (with the risk of more skin scarring) could have been attained via adding the middle pins from the start. I didn't do a before/after comparison, but your tibias appeared a bit curved in the post op. I don't think this will be a problem. Lots of people seem to have a bit of curvature to their tibias. The most important aspects of alignment seem to be whether your joint lines are horizontal in plane, and whether your vertical axis measured from top of tibia to bottom of tibia is good. But for those of us who don't care what our skin looks like, I wonder if the middle pin option from the start would add greater stability and thus lower risk of deformity.

If you're talking to Dr. Parihar and can ask him his opinion on this, I'd appreciate it.

5) Lastly, have you experienced any psychological benefits from the new height yet? I know as you said you are not yet again socially active, but even with the crutches/walkers, have you noticed yourself taller back home around family and how has it felt if so?

Keep up the good work. If I can have as relatively uneventful a journey as you have when my time comes, I will consider myself very lucky! 

[KiloKAHN]

Congratulations on your awesome journey. It looks like you really planned this out well and have got the process down to a text book response so far. No major complications. Good follow up by your doctors. Good consolidation so far. Playing it safe. Really fantastic. You seem like a very even-keeled, calm, and measured person which has served you well.

I have a few comments/questions.

1) First, I might have missed something, but I didn't see how you came to decide between Dr. Dhawan and Dr. Parihar. Both offered Hexapod and had similar concepts of how to fix the fibula. What made your choice Dr. Parihar?

- It was a combination of things. Having been a fellow of Dr Paley certainly helped, as well as his greater amount of experience (he's been doing this since 1991). He's also just got a really good vibe about him. I really got a feeling during our consultation that I would be in good hands. He's also constantly leading workshops on Ilizarov surgeries, probably more than anyone else in India.

2) In all of your research, did you come across any surgeons who struck you as reputable and were using the Hexapod in North America or Europe?

I found some doctors that use a TSF as standard practice, but most would respond that they absolutely do not perform cosmetic lengthening. I think there are maybe 5 surgeons in the USA that will do it, and all of them seem to prefer or insist doing internals, which were out of my budget.

3) One of the things that struck me reading your diary, especially in the context of the other discussion we were having about methods to avoid chronic joint pain and OA in LL, is that of all the pains you describe in this thread, none of them seemed to be deep joint ankle/knee pain. Most of the pain you experience seems to be related to stretching of the soft tissues and nerves, as well as perhaps pressure from the pins themselves. Calf pain, equinus pain, below the knee pain, etc.

Understanding that you are still in your frames and thus can't truly test them yet, how do your joints themselves feel? Besides the stiffness externally from the muscles and ligaments, do the axes "feel" correct? Does the front/back motion feel natural? Do you have any sense of a "catching" or "clicking" or "internal friction/grinding"? I know it will be hard to get a clear answer on what I'm asking. Even children with growing pains can get a deep joint ache as everything stretches, and it doesn't mean there's anything wrong inside their joints. But still I'm curious for your perspective.

I don't have any of those odd sensation that you mention. As far as I know everything is normal in my joints. I just continue to have some muscle pain which I assume will go away once I get these frames off and stretch my muscles out some more.

4) I agree with your idea that if you can avoid drilling into the tibia it may be ideal. This sort of Ilizarov with Hexapod you chose is really as "minimally invasive" a leg lengthening as can be performed while maintaining good alignment.

I wonder if an even better alignment (with the risk of more skin scarring) could have been attained via adding the middle pins from the start. I didn't do a before/after comparison, but your tibias appeared a bit curved in the post op. I don't think this will be a problem. Lots of people seem to have a bit of curvature to their tibias. The most important aspects of alignment seem to be whether your joint lines are horizontal in plane, and whether your vertical axis measured from top of tibia to bottom of tibia is good. But for those of us who don't care what our skin looks like, I wonder if the middle pin option from the start would add greater stability and thus lower risk of deformity.

If you're talking to Dr. Parihar and can ask him his opinion on this, I'd appreciate it.

If the pins were added in the middle at the get go there would have been greater stability. Probably wouldn't have needed a hexapod to correct the alignment later if those were there first. But from what I was told, there's no difference in the final alignment between adding the pins first or adding them at the end like was done to me. My tibias had a natural curvature about them from the beginning:

From what I've been told, lengthening just makes the curve look a little more pronunced simply because you're stretching the ends further apart. But from the x-rays Dr Parihar said my alignment was good and that opinion's been repeated by my local ortho and radiologist reports.

5) Lastly, have you experienced any psychological benefits from the new height yet? I know as you said you are not yet again socially active, but even with the crutches/walkers, have you noticed yourself taller back home around family and how has it felt if so?

I've had comments from family members and friends that make it seem like th added 6 cm was a dramatic difference. That alone has done a lot to help my self-esteem.

[maximize]

Thanks for the xrays. It's hard to see your femoral heads exactly on my monitor and this is just a crude drawing so it may be off, but looks like you have a subtle bit of varus to your knees to begin with. If you still want a few inches more after you're done and the price of internal femoral nails comes down as expected, you might be a good candidate for it. It will be interesting to see your post lengthening alignment.

Did they ask you to stand with a bit of intoeing for that xray (particularly to the left foot) or do you normally stand that way on your own? I'm not sure if that throws off the axis measurement.

When are you and Dr. Parihar expecting you'll be able to walk without the fixators or walkers/canes and semi-normally?

Also how old are you (approx)?

[crimsontide]

too  much info requested

anyway

kilo, its been about 10 months???  im feeling a bit better... though wont be really good until left leg is fixed... takes forever to heal

youre very realistic about all this though,  and seem to have the right attitude

do you have any ballerina?

[KiloKAHN]

Did they ask you to stand with a bit of intoeing for that xray (particularly to the left foot) or do you normally stand that way on your own? I'm not sure if that throws off the axis measurement.

They made me position my feet that way for the x-ray. It felt unnatural to me and isn't how I usually stand but it's the position they take all their x-rays in.

When are you and Dr. Parihar expecting you'll be able to walk without the fixators or walkers/canes and semi-normally?

He hasn't given me a date, just updates me on my healing progress as determined by the x-rays. I expect it will be a few more months until I can walk unaided but I'm not at all sure.

Also how old are you (approx)?

24.

too  much info requested

anyway

kilo, its been about 10 months???  im feeling a bit better... though wont be really good until left leg is fixed... takes forever to heal

youre very realistic about all this though,  and seem to have the right attitude

do you have any ballerina?

9.5 months as of now. That's good you're feeling better. Any date set on when you're going to get your leg looked at?

I have a small degree of ballerina left but with around 5 minutes of walking my feet go completely neutral. I think I'll make my next big step in progress as far as loosening the muscle goes once I get these frames off and can walk without the ankle wires bothering me.

[crimsontide]

getting leg fixed in may or june 1

im feeling ok, but def not 100% but i dont think thats possible until left leg is fixed... disturbs the endtire body

when u eventually take frames off, then eventuall walk without walker, your feet might feel odd

mine do, but  again, might be caused by my left leg... i definitely dont experience pain though  as i see others post.. just cant walk  normally yet

[KiloKAHN]

Update: 4/24/2015
Tomorrow is the 10 month anniversary of my operation date. Hard to believe the surgery was that long ago. I've been walking a lot more, but with the added walking came more frequent pin site infections. I currently have two infections, one on each leg. They're both at an upper wire close to the knee where most of the movement takes place. I had to drain them today and it did not feel good. I'm taking the oral antibiotics so they should be gone soon but I'll expect more to pop up before I get these frames off.

I saw my orthopedist on April 14th. He still thinks I should be okay to take the frames off now, but he's going to wait until Dr Parihar says it's okay since I'm uncomfortable with removing them before that. He thinks Dr Parihar probably just wants to have the frames removed at the one year mark so I'll have 2 months per cm of consolidation. However, he did say that if Dr Parihar says something like "remove them in September" then he'll start to feel uncomfortable, because he said that although thinking about consolidation is important, the longer I wear the frames the longer it will take for me in rehab because my muscles will continue to get tighter and we're continuing to delay restoration of full ROM and muscle strength. He said that once we're ready to take these off he'll still want to loosen the pins first just to see how my bones feel with the added load and then he'll want me to wear walking braces for some more months to be safe.

Latest X-Rays (4/14/2015)
 

[Melan_sprint]

Update: 4/24/2015
Tomorrow is the 10 month anniversary of my operation date. Hard to believe the surgery was that long ago. I've been walking a lot more, but with the added walking came more frequent pin site infections. I currently have two infections, one on each leg. They're both at an upper wire close to the knee where most of the movement takes place. I had to drain them today and it did not feel good. I'm taking the oral antibiotics so they should be gone soon but I'll expect more to pop up before I get these frames off.

I saw my orthopedist on April 14th. He still thinks I should be okay to take the frames off now, but he's going to wait until Dr Parihar says it's okay since I'm uncomfortable with removing them before that. He thinks Dr Parihar probably just wants to have the frames removed at the one year mark so I'll have 2 months per cm of consolidation. However, he did say that if Dr Parihar says something like "remove them in September" then he'll start to feel uncomfortable, because he said that although thinking about consolidation is important, the longer I wear the frames the longer it will take for me in rehab because my muscles will continue to get tighter and we're continuing to delay restoration of full ROM and muscle strength. He said that once we're ready to take these off he'll still want to loosen the pins first just to see how my bones feel with the added load and then he'll want me to wear walking braces for some more months to be safe.

Latest X-Rays (4/14/2015)
 

Why did you fail a succesfull LL procedure? so i can avoid it in the future. Doing femurs.

[crimsontide]

i dont think anything went wrong with his surgery


it takes a while when you go exfix

this is the reality... i love this diary, because kilo's experience is really the average one... its not a bad one... people here just dont like seeing the reality of how long it takes to recover,especially when you dont have nails to take some of the load off

[Melan_sprint]

i dont think anything went wrong with his surgery


it takes a while when you go exfix

this is the reality... i love this diary, because kilo's experience is really the average one... its not a bad one... people here just dont like seeing the reality of how long it takes to recover,especially when you dont have nails to take some of the load off

This is the average procedure? His leg leaking?. Yeah i dont know about this surgery now..if this is kinda normal.

[crimsontide]

not leaking

he  had 2 infections, which had to be drained

and yes... infections while wearing fixartors  happens around 99% of the time

[just_me]

KiloKAHN, Do you use crutches as aid when you walk or do you use zimmerframe or maybe both?

[jfk]

not leaking

he  had 2 infections, which had to be drained

and yes... infections while wearing fixartors  happens around 99% of the time

and no in Volgograd with dr. Barinov infections happen very rarely.

[crimsontide]

yes.... with barinov, infections happen too

case in point... rgkey.... he  posted photos of his infections

no dr is immune to pinsite infections... if you wear fixators, you will almost always  have pinsite infections

[jfk]

yes.... with barinov, infections happen too

case in point... rgkey.... he  posted photos of his infections

no dr is immune to pinsite infections... if you wear fixators, you will almost always  have pinsite infections

Man I just told you that it RARELY happens with Dr. Barinov! I did not say it is not happening at all. Am I talking spanish?
I have seen about 15 patients and only one guy had a pinsite infection.

Yes Rgkey had an infection. Does that mean almost everybody has it? No! What kind of argumentation is that?

It rarely happens here. I am here. I see it.

[crimsontide]

it means ive seen 1 diary of barinov

and an infection

and there have been studies on this.... vast majority get pinsite infections... not a big deal, but happens with external fixators...

theres  multiple foreign objects creating open wounds for months

[KiloKAHN]

Infections are just part of the process while wearing frames. I got infections rarely in Mumbai too, maybe twice or so from what I remember. Once you start walking around a lot more you'll get infections more often because you're continuously irritating the skin around the pin sites.