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[3dtxpg2]

hey Kilo, I am a newbie here. First of all, I need to say Thank You So Much! Your diaries are very informative and I have to admit, you are so patient and helpful to all the LLers. I am impressed with your decision over the exfix, one year with the frames... dude, you are the man! I honestly don't think I could do it, though I am also determined to gain height, one year is such a pain in the neck!

I am considering LL, and definitely Dr Parihar if I am to go to India. At the moment, I need some information to work out a plan and start saving for it. I would appreciate much if you could share some of your experience on below questions:

1. I am about your pre-op height, 138lb. I remember you were saying that muscular calves would provide better blood supply and hence lead to better recovery. But, I read on others' diaries that muscular calves would indeed, make the distraction more painful, and limit the stretching. Since you have completed the procedure, I would like to know your thought on this. Should I put on more weight/muscles or my current weight is actually an advantage for early weight bearing if I am to go for the LON tibiae? I really want to avoid having equinus, ballerina foot, duckass, knee pain and other complications.
 
2. Why did you decide to go for the tibiae instead of femur? Given the fact that tibiae has longer recovery rate, possibility of knee pain (I know you were worried about this and it made you chose external) and safe limit of 6cm rather than 8cm.

3. Does it different much on the surgery cost between LON femur and LON tibiae? You had 3months for 6cm on 0.75mm/day, is it possible to have 8cm on LON femur with 1mm/day within 3 months?

4. You mentioned you would have gone for the LON tibiae, does that mean that you will need to travel all the way to India again for the third surgery or you are allowed to remove it at the local hospital? Would the third surgery be another additional cost if you were to travel to India?

5. If you happened to have higher budget. Would you go to Dr Aimin Peng in China or you would go to Dr Parihar for Precise2?

Thanks in advance, mate.

By the way, you look fantastic with your new look 

[3dtxpg2]

Have you tried swimming instead? It works all of the same muscles as running without the impact pain you seem to be experiencing.

Read DoingItForMe's diaries, swimming definitely the best and most effective physio 

[Morgenst.]

Read DoingItForMe's diaries, swimming definitely the best and most effective physio

Why are you telling me my own advice? I know this

[3dtxpg2]

No no, I Read (past tense). I agree with your advice.

[KiloKAHN]

hey Kilo, I am a newbie here. First of all, I need to say Thank You So Much! Your diaries are very informative and I have to admit, you are so patient and helpful to all the LLers. I am impressed with your decision over the exfix, one year with the frames... dude, you are the man! I honestly don't think I could do it, though I am also determined to gain height, one year is such a pain in the neck!

I am considering LL, and definitely Dr Parihar if I am to go to India. At the moment, I need some information to work out a plan and start saving for it. I would appreciate much if you could share some of your experience on below questions:

1. I am about your pre-op height, 138lb. I remember you were saying that muscular calves would provide better blood supply and hence lead to better recovery. But, I read on others' diaries that muscular calves would indeed, make the distraction more painful, and limit the stretching. Since you have completed the procedure, I would like to know your thought on this. Should I put on more weight/muscles or my current weight is actually an advantage for early weight bearing if I am to go for the LON tibiae? I really want to avoid having equinus, ballerina foot, duckass, knee pain and other complications.

Some surgeons said that muscular calves would help because it would increase blood flow to the area. My surgeon isn't convinced one way or the other on muscles being a good or bad thing, however he's a big proponent of regular stretching and physiotherapy. I think it's better to focus on stretching and not worry about trying to add bulk to your legs. They'll atrophy a lot no matter what you do, but improving your flexibility before surgery can only help.
 

2. Why did you decide to go for the tibiae instead of femur? Given the fact that tibiae has longer recovery rate, possibility of knee pain (I know you were worried about this and it made you chose external) and safe limit of 6cm rather than 8cm.

The most basic reason for choosing tibiae lengthening instead of femur lengthening is that I couldn't afford surgery with an internal nail, and there's no way I'll be willing to put myself through external femur lengthening.

3. Does it different much on the surgery cost between LON femur and LON tibiae? You had 3months for 6cm on 0.75mm/day, is it possible to have 8cm on LON femur with 1mm/day within 3 months?

My guess is there would be a slight difference in cost between LON femurs and LON tibiae, but not major. Dr Parihar is very reluctant to do external femurs (he might flat out say no) for any amount for cosmetic cases due to the scarring and higher risk of knee stiffness that comes with exfix or LON femurs. Bluebarbie and Dozer would be in better position to tell you what to expect for femur lengthening with a frame or a bar.

4. You mentioned you would have gone for the LON tibiae, does that mean that you will need to travel all the way to India again for the third surgery or you are allowed to remove it at the local hospital? Would the third surgery be another additional cost if you were to travel to India?

You don't have to get the nails removed by the surgeon that put them in, although there are instances where it made the most sense for people to get the nails taken out by the same doctor. Because of my company insurance, if I did LON with Dr Parihar I could have gotten the nails taken out by my local traumatologist for only $250 USD. Nail removal wouldn't be included in the surgery cost. I didn't ask for the price but it would be cheap considering the initial surgery was roughly $15,000.

5. If you happened to have higher budget. Would you go to Dr Aimin Peng in China or you would go to Dr Parihar for Precise2?

My experience with Dr Parihar was very positive. If I were to do internal femurs I'd choose him to do it because I've already been a patient of his and that eliminates the guesswork on whether I can trust my surgeon or not. I'm not sure that Dr Peng has access to Precice nails for internal lengthening. Have you heard from him about that being an option at his clinic?

Thanks in advance, mate.

By the way, you look fantastic with your new look 

Thanks 

[3dtxpg2]

Yo mate, thanks for the prompt reply, very useful.

One very stupid question, please correct me if I am wrong.
There are basically two main types of lengthening surgical procedure, the internal and external. Internal may refer to the Precise while External can be either LON/LATN or ex fix. You were paying $15000 for the ex fix, so LON tibiae may cost even higher since there will be an installation of the intramedullary nails?

It has been nearly 8 months since your frame removal, do you still experience any discomfort at all? Have you get used to your new height, and feel "short"? We are on the same boat, have tall siblings and relatives.

Regarding Dr Peng, I haven't heard much about him, haven't even started reading Medium's diaries yet. The cost is definitely an issue, which means I may need to postpone the surgery to another year, not ideal. And, I really like the sound of Dr Parihar, a little bit of old-school, safe and put patients' safety as the priority based on his said, "function over length". People may feel reluctant to seek medical treatment from developing country due to the stereotypical views, but there are good/bad doctors everywhere, just like there are good/bad patients. So, I would say, wise choice 

[KiloKAHN]

Yo mate, thanks for the prompt reply, very useful.

One very stupid question, please correct me if I am wrong.
There are basically two main types of lengthening surgical procedure, the internal and external. Internal may refer to the Precise while External can be either LON/LATN or ex fix. You were paying $15000 for the ex fix, so LON tibiae may cost even higher since there will be an installation of the intramedullary nails?

The 900,000 INR quote is the price for LON and includes the nails. After I decided on exfix only, Dr Parihar recommended I pay the LON amount because of how he planned to do the follow ups. It covered the additional surgery I needed to correct some misalignment and add the middle pins for stability, the changing of the rods to hexapod struts to improve alignment, and the extra hospital stay that I needed for that second surgery.

It has been nearly 8 months since your frame removal, do you still experience any discomfort at all? Have you get used to your new height, and feel "short"? We are on the same boat, have tall siblings and relatives.

 
I've reached recovery to the point where I have no discomfort walking or going up and down stairs. The only discomfort I now get has to do with pressure in the calves while running. If it doesn't get any better within the next few months I'm going to go back to my local ortho and test for CECS.

I still recognize that I'm shorter than average, but now I rarely come across a woman who is taller than me and I feel more normal than I did previously. There were cases where people would blurt out matter-of-factly how short I was, but since the surgery I've yet to have my height mentioned by strangers. I could live at 5'7. Any extra height would be considered a luxury that I'd only do if I came across a lot of time and money to spend.

Regarding Dr Peng, I haven't heard much about him, haven't even started reading Medium's diaries yet. The cost is definitely an issue, which means I may need to postpone the surgery to another year, not ideal. And, I really like the sound of Dr Parihar, a little bit of old-school, safe and put patients' safety as the priority based on his said, "function over length". People may feel reluctant to seek medical treatment from developing country due to the stereotypical views, but there are good/bad doctors everywhere, just like there are good/bad patients. So, I would say, wise choice 

Dr Parihar definitely has a safety first attitude and he never gave me the "don't worry, no problem" response that other docs in India have given patients when they were worried about something. In fact, there was one visit where I was walking into the lobby with the zimmer frame, very exhausted and breathing heavily, and he immediately had me get my chest x-rayed to make sure I didn't have any issues. Turns out it was just fatigue, but he never ignored me when I had a concern. I'd say the difficulty of doing surgery with Dr Parihar primarily lies in being in a foreign country and not having much opportunity for social interaction outside of the hospital - all of his patients are Indian and I was the only person going to him for CLL at the time. However, if you're willing to spend the money for a long term stay at a hotel, it's very comfortable under the circumstances. 

[3dtxpg2]

The 900,000 INR quote is the price for LON and includes the nails. After I decided on exfix only, Dr Parihar recommended I pay the LON amount because of how he planned to do the follow ups. It covered the additional surgery I needed to correct some misalignment and add the middle pins for stability, the changing of the rods to hexapod struts to improve alignment, and the extra hospital stay that I needed for that second surgery.

So, I suppose I will need to pay extra if I am to have LON and additional surgery for the misalignment? Or the LON itself reduce the chances of misaligment?

 
I've reached recovery to the point where I have no discomfort walking or going up and down stairs. The only discomfort I now get has to do with pressure in the calves while running. If it doesn't get any better within the next few months I'm going to go back to my local ortho and test for CECS.

Yea, give them a wee bit more time, they are still baby muscles.


I still recognize that I'm shorter than average, but now I rarely come across a woman who is taller than me and I feel more normal than I did previously. There were cases where people would blurt out matter-of-factly how short I was, but since the surgery I've yet to have my height mentioned by strangers. I could live at 5'7. Any extra height would be considered a luxury that I'd only do if I came across a lot of time and money to spend.

I've always thought US is an easy-making money country, or it is just a misconception? I am from the UK by the way.


Dr Parihar definitely has a safety first attitude and he never gave me the "don't worry, no problem" response that other docs in India have given patients when they were worried about something. In fact, there was one visit where I was walking into the lobby with the zimmer frame, very exhausted and breathing heavily, and he immediately had me get my chest x-rayed to make sure I didn't have any issues. Turns out it was just fatigue, but he never ignored me when I had a concern. I'd say the difficulty of doing surgery with Dr Parihar primarily lies in being in a foreign country and not having much opportunity for social interaction outside of the hospital - all of his patients are Indian and I was the only person going to him for CLL at the time. However, if you're willing to spend the money for a long term stay at a hotel, it's very comfortable under the circumstances.

Do you think if Dr Parihar may go up to 6.5cm if the patient seems fit and potential?

[KiloKAHN]

Do you think if Dr Parihar may go up to 6.5cm if the patient seems fit and potential?

I think if your condition is fine then he may let you push it that extra half centimeter, but if you have significant knee bend and equinus way before that then he'll advise against it. He mainly has a 6 cm limit for tibiae lengthening because by that point almost every patient has issues they need to correct, and the complications increase exponentially the more you lengthen beyond it.

[3dtxpg2]

The 900,000 INR quote is the price for LON and includes the nails. After I decided on exfix only, Dr Parihar recommended I pay the LON amount because of how he planned to do the follow ups. It covered the additional surgery I needed to correct some misalignment and add the middle pins for stability, the changing of the rods to hexapod struts to improve alignment, and the extra hospital stay that I needed for that second surgery.

So, I suppose I will have to pay extra if I am to have LON and need additional surgery for the misalignment? Or the LON itself reduces the chances of misalignment?

Tried to insert multiple quotes in one post, end up I screwed up lol! Please allow me to ask some previous question again.

What about gym activities like leg presses? Can you manage at this stage?

[KiloKAHN]

So, I suppose I will have to pay extra if I am to have LON and need additional surgery for the misalignment? Or the LON itself reduces the chances of misalignment?

What about gym activities like leg presses? Can you manage at this stage?

LON helps prevent misalignments in the bone. If Dr Parihar put the middle pins in during the initial surgery it would have helped prevent misalignment as well, but it would have left a long scar in the middle of my legs after distraction so he decided to add them after the lengthening phase was completed. I'm not sure about the costs for correcting complications if you decide to go the LON route. Best to e-mail him directly about that.

I'm allowed to do leg presses now, but I'm just doing them light at 110 lbs. My leg muscles got a lot weaker.

[alps]

Does he do femur lengthenings on a regular basis. Non cosmetic I mean. All his videos seem to be about tibiae.

Also what's his email? Thanks

[KiloKAHN]

Does he do femur lengthenings on a regular basis. Non cosmetic I mean. All his videos seem to be about tibiae.

Also what's his email? Thanks

He has instructional videos on his channel about applying fixators to femurs. I think they start with 'Sawbones Workshop'. I saw a number of patients in his lobby with all kinds of external fixators throughout my visits to the hospital for checkups and physio. I saw some wearing the unilateral fixator on one femur and some wearing the half-ring.

You can e-mail him at mangalparihar@parihar.net or Dr Ahuja at divya@parihar.net

[Dreamtaller]

Helloo
are there chances of height compression or we will get the full height turned?

[KiloKAHN]

Helloo
are there chances of height compression or we will get the full height turned?

Once the bone has been lengthened and locked into position then there is no real compression. At most a couple mm. Dr Parihar told me that articles showing a difference between amount lengthemed on x-rays and total height actually gained is due to magnification of the x-rays not being taken into consideration and measurement errors.

[OregonMade]

I take fentanyl patches mixed with a little bit of Hashish, and I go to sleep, and sleep like a baby.  I have everyday since my surgery.  The hashish was right after I left the hospital though.  I plan on switching to Coconut oil hash oil for sleep.  I am from US, and we believe Marijuana to be a healthier alternative to pain.  And sleep problems. 

Update: 7/30/2014
This last week has been so damn frustrating.  Every night it takes me longer than the night before to mange to get a moment's sleep. I have bags under my eyes and am dead tired but the discomfort and pain prevents any chance of dozing off. If I find one comfortable position, that same position is no longer comfortable the next night. I can't lie with a pillow between my frames, can't fan my legs out, can't have my legs straight and my upper body sitting up, nothing works and I'm even taking sleeping pills. Walking is still impossible and standing makes my legs hurt now. At this point I don't care if a stronger pain killer will be injurious to my liver. I just don't want to be up another week. Takes me up to 8 hours just to doze off for a half hour and when I wake from that there's no going to sleep again.

[OregonMade]

I just start distraction like 4 days ago.  I was able to walk just fine.  But Now when ever I walk, my bones pop right around the area of where the bones broke, so it has made me skeptical about walking, and fearful of it. 

I am doing it with Dr. Dhawan. 

I just got a reply from Dr Parihar after telling him about the pain issue. He wants me to go back to .75 mm per day each day instead of alternating days between .75 mm and 1 mm. He said if that does not help with the pain then he will consider adding the two pins to the middle ring early to improve stability instead of adding them once distraction is complete. It would mean a scar in the middle that goes the length of how much left I have to distract, but he said the longer scar is probably preferable to the pain I'm experiencing now. I have to update him in a few days and he's going to have someone get in touch with me to deliver a wheelchair here so I don't have to be stuck in bed all day and can at least wheel out to the lounge or something for a change of scenery.

I took that for a bit but they took me off it. I'll ask about taking it again next time I see him.

[KiloKAHN]

I take fentanyl patches mixed with a little bit of Hashish, and I go to sleep, and sleep like a baby.  I have everyday since my surgery.  The hashish was right after I left the hospital though.  I plan on switching to Coconut oil hash oil for sleep.  I am from US, and we believe Marijuana to be a healthier alternative to pain.  And sleep problems.

Weed probably would have helped with pain, but if you do lengthening in Mumbai you'd need some sort of connection to help you get it. I know for sure the hotel management wouldn't get any for me and the hospital definitely wouldn't if you asked them. At most it's some NSAID in the first couple weeks and then you're moved to a light pain medication. It's possible that prolonged use of NSAIDS can negatively affect bone healing and Dr Parihar doesn't like to give out anything that can affect your mental state too much, like norco or morphine. I do like that prescription drugs are very inexpensive in India. Spent maybe $40 on them for my entire stay, IIRC.

I just start distraction like 4 days ago.  I was able to walk just fine.  But Now when ever I walk, my bones pop right around the area of where the bones broke, so it has made me skeptical about walking, and fearful of it. 

I am doing it with Dr. Dhawan. 

Is Dr Dhawan telling you to walk? When I consulted with him he told me that I should not make myself walk during distraction, but once lengthening is complete he'd encourage gradual weight bearing depending on the bone strength. From my own experience, I don't think forcing yourself to walk early is all that beneficial, and if you accidentally fall (which I did a couple times) it could cause problems. A lot of stretching and physio exercises would benefit, and to help prevent equinus you should wear the foot splints and stand as much as possible with your back against a wall to prevent your hips from sticking back and minimizing the stretch.

[KiloKAHN]

So I've received a couple messages regarding concern over the shape of my tibiae. I decided to post my response here because it would likely be something others are curious about. Below from left to right is a closeup of my tibiae on my pre-op x-ray, the final x-ray for the right tibia and the final x-ray for the left tibia. I rotated the latter two using lunapic and they may not be perfectly straight up, but it's close enough I think.



You'll notice that my tibiae are not straight like a nail and have a bend to them. I was a little curious about it after my first x-ray, but I didn't pay much attention to it. After I received more than one message asking about their shape, I started to wonder why neither Dr Parihar or my local ortho, or any of the radiologists who saw my x-rays said anything about something that was clearly noticeable to others. I e-mailed Dr Parihar and Dr Paley about this, pointing out that my tibiae aren't as straight as other people's in x-rays I have seen, and asked if the curves could be an issue later down the line.

The response from both of them is that a bend in the tibia like seen in my x-rays is a normal variation. They do not cause functional issues or increase the risk of arthritis, etc. Tibia alignment is what matters, not the straightness of the tibial shaft. As long as the center of the femoral head, knee, and ankle are in one straight line in a standing x-ray, and the knee joint and ankle joint are more or less perpendicular to the floor, bends in the tibia are no problem. I was sent x-rays of other cosmetic patients with tibiae of similar shape, confirming that it's not uncommon.

A tibia shaped like mine does affect whether or not a patient qualifies for doing LON, however. A tibia with a bend similar to mine is in many instances unable to accommodate the nail used in LON and prospective LON patients have been told for this reason that they can only do externals.

[KiloKAHN]

Realized above I put "the knee joint and ankle joint are more or less perpendicular to the floor". That's incorrect. I should have said "parallel to the floor".

[jaymorgan712]

I actually just looked at my current X-RAY and your old X-RAYS and compared them both to your new X-RAY and it actually looks fine. I was one of the worry warts who thought it looked bent at first but it's not bent at all from what I can see. And your walking seems fine.

Paley and Parihar definitely would know a bent bone when they see one, so if they say it's fine then it's fine!

Hope you've been recovering well KIlokahn!

[ppatient]

Normal variation indeed. Nothing to worry about, KK.

[KiloKAHN]

Going skydiving in a half hour. Will let you guys know if my legs withstand the landing lol.

[applesandoranges]

Going skydiving in a half hour. Will let you guys know if my legs withstand the landing lol.

Sounds great!

[alps]

don't lose any height from the landing.

[Peaceout]

Going skydiving in a half hour. Will let you guys know if my legs withstand the landing lol.

Good luck man.Where will you do it?Please tell us what it feels like,i really want to do it someday

[crimsonfag]

Going skydiving in a half hour. Will let you guys know if my legs withstand the landing lol.

no way dude! as per crimson, youre supposed to have a bad outcome. youre not even supposed to be walking. kek  only elites can do those


anyways goodluck man

[KiloKAHN]

Should be ready to make a running video within the next two weeks. As of now the only pain I have left is in one of the pin sites, which is still pretty sensitive and hurts if I get hit there. Wondering if that will go away.

Good luck man.Where will you do it?Please tell us what it feels like,i really want to do it someday

There's a popular skydiving location in Southern California at Lake Elsinore. The experience was really fun. You don't get that sensation of butterflies in your stomach when dropping and it's really peaceful after you deploy the parachute and you coast to the ground. The most nerve wracking part of it is when the plane reaches its 16,000 ft elevation and starts coasting. That's when you realize "Oh man, I'm really about to do this". The jump itself is much less scary than bungee jumping though. The most uncomfortable thing is that the harness wraps tight around your thighs and you get a little rope burn from it.

don't lose any height from the landing.

Turns out that when you land you're supposed to do so on your butt, so no impact on the legs.

[TIBIKE200]

How would you describe your recovery in terms of %? how much % are you from your pre LL self?

[KiloKAHN]

Hard to say. I haven't gained back the muscle in the thighs that I lost from this whole thing, and I haven't yet tried to run any faster than a mild jog.

[Dreamtaller]

hello bro ..how are u now?