No More Mal-Kahn-Tent - External Tibias - Dr Parihar

Kilokahn Is Going To India

It is almost a shock that I am finally able to get started on writing this patient experience after so many unexpected events led me to postponing my trip. My landlord kicked all the tenants out of our building suddenly, followed by projects stalling me at work that required me to stay and take care of them. My planned September, 2013 flight to India was postponed indefinitely as a result. Fortunately, after keeping my mind on working and taking care of my priorities, I am now booked for a flight early June and will be heading to India to change my life permanently.

I suppose people will think I am nuts for deciding to go to India even after everything that has been discovered by the online CLL community about particular doctors there, and I can't say I blame them. But I do think there is a good doctor to be found out there, maybe even a few. One of the reasons I decided to start writing this experience now rather than after I've already done the surgery is that I plan to consult with many doctors and post summaries of my consultations in detail within this thread. I think it will be good information for those who still see India as an option for their particular needs.

These are the doctors that I will be consulting with:

New Delhi

• Dr B.S. Murthy - http://www.limblengtheningforum.com/index.php?topic=253.0
• Doctors located at Indian Spinal Injuries Center http://www.limblengtheningforum.com/index.php?topic=305.0
• Dr Naveen Talwar and Dr Gurdeep Singh Ratra http://www.limblengtheningforum.com/index.php?topic=469.0
• Dr Manish Dhawan http://www.limblengtheningindia.com/
• Dr Punit Jain http://www.drpunitjain.in/

Mumbai

• Dr Suhas Shah http://www.suhasshah.com/
• Dr Mangal Parihar http://www.limblengtheningforum.com/index.php?topic=87.0

I won't be consulting with Dr Sringari or Dr Sarin, as I really see no point in doing so. However, rest assured that I will post my thoughts on each doctor I consult with. My goal is to make this patient experience as neutral as possible, as my goal is to give realistic expectations to any prospective patient for India, not try to sell anyone here on going.

Why Do I Want Limb Lengthening?
To be taller, duh. 

Okay that's not the whole story, haha. Yes I want to be taller, but it's not so much a want as a need in my opinion. We've all seen the studies correlating height with potential success in multiple areas of life. Even more so, many of us have been personally affected by heightist bigotry from the tall guys who just don't get what short men have to go through, and even outright distaste from those who think we deserve to be treated differently because of our stature. There are specific instances I can recall where my height has been a barrier - I was fired from a sales position after there was a change in upper management and the new boss thought I couldn't represent the quality of their product with my stature, was left without a prom date my senior year of high school because the girl I asked canceled last minute and said she didn't want to wear a dress where she couldn't wear heels, have a mom who cried in front of other parents at the endocrinologist's office when they said I wasn't going to grow anymore at age 15, had been excluded from group activities, etc. The biggest blow was that I realized I couldn't be a really successful professional wrestler among the greats like Hulk Hogan because of my stature, and a pro wrestler was something I had wanted to become since I was a kid.

Hitting the gym and dressing nice didn't really change these things for me or the way I feel about my height all that much. Now I'm not saying that if you're short, you've got no hope. I've known quite a lot of short men who seem to be unaffected by their height or at least are very good at showing they're not bothered by it. I've even known some who are quite popular and have no apparent problems with the ladies. If you ask me, I'd tell you that unless you're absolutely miserable over your height, know all the risks with CLL, and cannot attribute your unhappiness to other factors that are not height-related, then CLL is not for you. With me, CLL is something that's been on my mind for 8 years and it's not going to go away until I do it. Unfortunately I do not think I can move on until this leg lengthening is dealt with. 

My next post will detail all the necessities I'm packing and the medications I've been prescribed by my doctor for stay in India. I hope this patient experience ends up helping many.


Special Thanks (in no particular order):
Dameon - for creating this forum and giving us a place where nobody is afraid to speak out on issues pertaining to limb lengthening.
All those who have done or are currently going through CLL and have chosen to share their experience with others.
All members of LL Forum who continue to make this a community I'm happy to be part of.

Edit: Realized my title was too similar to someone else's so I decided to change it. Curse this OCD of mine.

Quote from: BilateralDamage on May 10, 2014, 02:02:31 AMWoooo grats Kilo! 

I know you'll make the right decision on your doctor, and you'll even pave the way for others to do LL in India with some peace of mind.

Thanks. Choosing a doc is going to be tough I think, at least among three of them.

Quote from: Tall on May 10, 2014, 02:03:27 AMThanks for this post! The sense of anticipation, excitement, and suspense I feel regarding your imminent journey is forcing me to go grab some popcorn (I can't help myself, lol)  : But, on a more serious note, I want to sincerely say thanks so much for offering to share your thoughts and recollections of all of these interviews with us. It means a ton that, on your personal journey, you are doing so much to help others in the same boat, when you have no obligation to. Congratulations on making it to this point, the point so many people on this forum only currently dream of. You're truly an inspiration. I wish you all the luck in the world and hope that LL will be as meaningful and rewarding as possible for you.

Thanks, Tall. Hopefully I can help people with this. I think the biggest worry of mine is catching something while abroad. Hopefully the meds work.

Quote from: Übermensch on May 10, 2014, 02:49:13 AMBest of luck for you Kilokahn!!

Thanks Ubermensch

Quote from: Medium Drink Of Water on May 10, 2014, 03:16:37 AMIt's good to see you're going to give the other Indian doctors a chance in hopes that you'll find a good one (or more than one).  It could bring hope to a lot of the short guys who can't afford the more expensive clinics.  You're going to have a lot of people hanging on your every word in here from now on.  Best of luck to you.  I already can tell this will be one of the best or the best LL diary ever.

That's been on my mind for a while. I don't want to lead anyone with false expectations so I want to make this as unbiased as possible. Thanks for the encouragement.

Thanks for the well wishes guys. I'll update more as I get things ready. I'm just going to relax today though

Quote from: PrettyTall on May 10, 2014, 11:13:36 AMReally good post hope you find the fiest Dr         how about mesuration ?

My Measurements
Total Height: 165 cm
Sitting height: 89 cm
Wingspan: 170 cm

Quote from: kusop on May 10, 2014, 01:12:58 PMwhats ur height and goal

I'm shooting for 5.5 cm on tibias. That'll get me just over 170 cm.

Quote from: Disobedient on May 10, 2014, 04:40:54 PMGood luck kilo, but who is mal khan tent???

It's a manipulation of the word malcontent.
 1. mal·con·tent noun \ˌmal-kən-ˈtent\
- a person who is always or often unhappy or angry about something
- one who bears a grudge from a sense of grievance or thwarted ambition

The definition fits my thoughts about me thinking that my height has always prevented me from doing things, both by my own psychological barrier that I put on myself and from others who thought my height made it so I wasn't 'allowed' to do things the taller guys could, so to speak.

I just replaced 'con' with 'Kahn' from my username to make the title more personal.

Quote from: Gichelu on May 11, 2014, 03:20:29 AMNo offense but I think it's a really bad choice to only do 5.5 cm for lengthening when spending so much money. You should go for 8 cm and be 173 for one surgery. Also do Russia instead of India. Everyone there gets f***ed up.

None taken. I just think getting from 5'5 to 5'7 with one surgery is good enough and that my recovery will go a lot smoother at that amount as opposed to three inches on tibs, and if I decide to lengthen femurs in the future I'll be better off. If I do two surgeries I don't want to go beyond 11.5 cm, and I believe 5.5 cm on tibs followed by 5.5 or 6 cm on femurs would be better from a biomechanical standpoint than 8 cm on tibias followed by 3.5 cm on femurs. It would also mean that I'm paying a lot more per cm for the second surgery if I lengthen a lot on tibs and decide to go for a second surgery for the added 3 to 4 cm. Besides, lengthening both segments closer to the same amount would probably look a lot better aesthetically.

Quote from: Cannibal on May 12, 2014, 06:55:45 PMYou have to be a complete moron to go to any Indian doctor at this point. Have all the cases of people getting messed up not communicated well enough that India is a country best avoided for this kind of procedure? Not to mention that going from 5'5 to 5'7 you're still going to be short anyway.

I love you, too! 

Serously though, it's silly to dismiss an entire country because of the results of two doctors who were both affiliated with the same webmaster and had most of the same staff. I don't think it's a huge surprise that the problems carried over to the second doctor especially when you can't find anything related to Ilizarov surgeries when you look up his credentials.

Quote from: Tall on May 13, 2014, 03:40:06 AMWhat a mean comment. You're suggesting that, just because he'll never be subjectively "tall" according to you, he should just give up. Well, news flash: not everyone is as lucky/narcissistic as you to start LL at average height. You have no idea what 5'5 people have to put up with through no fault of their own. LL is not about beauty for them, it's about being treated fairly. Honestly, I think that there should be a "social rights movement" for shorter folks. Surely you'll agree that Kilo will be treated better at 5'7 than 5'5. I know that I'd take being 5'7 over 5'5 any day without a doubt. I know at least ten times more 5'7 people than 5'5 people, so, Kilokahn, I honestly feel that you'll be much more normal looking at 5'7. Your height will no longer stand out, it will just look slightly bellow average but perfectly normal and common. Don't let the haters grind you down 

Although I won't be tall even if I decide to do two surgeries, it's still an improvement and my I won't be nearly as held back psychologically. I think my proportions will look better after one surgery as well. As it is my shoulders are very wide and my upper body is a decent enough length. My legs are where it's noticeably shorter than others. On the wrestling team half the quips I got about my body were height jokes, the other half were on my short legs in particular.

Flight is in 11 days. Time for another update.

Medical Visa Requirements For India
Those thinking of going to India for CLL are recommended to obtain a Medical Treatment visa before entering the country rather than a Tourist visa and trying to extend their stay or switch to a Medical Treatment visa later. This will give you peace of mind and just make everything easier in the long run, as Medical Treatment visas (at least in the USA) are valid for an entire year from the date of issue. The easiest way to obtain a Medical Treatment visa is to send an e-mail to a hospital you are considering for surgery and tell them that you desire to have CLL and wish to have a Medical Treatment visa for entry. The hospital should have no problem writing a letter addressed to your nearest Indian Embassy/Consulate General of India Office and e-mailing it back for you to include with other documents to send in to the appropriate visa application center. I submitted my application to BLS International Services of San Francisco, which handled all applications for California and other parts of the Pacific Coast. They were a royal pain to deal with, mainly due to their haphazardly placed and contradictory information on appropriate fees to send in and what documents were really required, but fortunately they are no longer authorized to handle applications as of May 21, 2014. The Embassy of India has given the new contract for providing Visa applications to Cox & Kings Global Services, and based on their website it looks like their process is much more straightforward.

http://www.in.ckgs.us/visa/type-of-visa/medical-visa.crapml

If you are able to have attendants with you, you can bring two people under Medical Attendant visas that have the same validity as a medical tourist visa. If you have close friends or family who you trust and can bring with you, I'd highly recommend it so you don't have to be alone.

Awkward Doctor Visit
In order to obtain a Medical Visa I not only required a letter from a hospital in India, but also needed a letter from my primary physician to accompany my other documents. I got to my doctor's office in the early morning and after a brief wait in the lobby had my height, weight, and blood pressure checked by a nurse before my doctor came in. Out stepped the nurse and now I had to try and get that letter of recommendation from my doctor that would okay me for treatment in India. The following is how I remember our conversation going down.

Doc: Hey, how's it going?
Kilokahn: Good. How about yourself?
Doc: Not bad, not bad. So what's going on today? The nurse said you're going on a trip. Where to?
Kilokahn: India.
Doc: Wow, okay. Why India? Business, vacation?
Kilokahn: Well...not exactly. It's actually for a cosmetic surgery. Can't really afford the top doctors in the States for it so I found some doctors over there within my price range that have the credentials. Reason I came today is that in order to get this done I need a recommendation letter from you giving me the green light so I can get a Medical visa.
Doc: Interesting. What kind of cosmetic surgery is this?
Kilokahn: *jokingly* An elective one.
Doc: Hah, well what's this cosmetic surgery that you're electing to have done?

I had planned on keeping the real purpose of my trip to India a secret from everyone, including my physician, but it just wasn't going to work out that way.

Kilokahn: *after pausing a bit* Limb lengthening. To get taller.
Doc: I see. How does that work?

I then proceed to describe what I had learned about the process of limb lengthening, from placement of the fixators, to distraction, to consolidation and fixator removal.

Doc: That sounds scary. What would make you want to do that to yourself?
Kilokahn: It's something I can't get out of my mind. After years of being the butt of jokes, getting fired from a job because my new boss thought I wasn't tall enough, and having to deal with the social stigma that made me miserable in times parents tell their kids they should be happy, like prom, college, etc, I figure that if I can change how I look at myself and how others look at me, then I might as well go for it, then put it behind me and try to enjoy my life from that point.

My doctor didn't say anything for a while and looked deep in thought. It was awkward for me, not only because I had just revealed to him that I had height neurosis, but because my doctor also wasn't much taller than me. I didn't know if he was personally insulted, was thinking that he knew what I was going through, or was thinking that I'm like one of those anorexic women who think they're too fat and would recommend me to a psychologist. He finally spoke after what seemed like minutes of silence.

Doc: Well look, I understand what you're saying. Certainly there are settings where stature is advantageous, and I know there are women who can get picky about height. But I can't just write you a recommendation to go and get your legs pulled apart in a foreign country. Kaiser prefers that we don't recommend people get procedures elsewhere, especially elective ones. And with something like this, I wouldn't be comfortable giving you a recommendation in writing that you get this done to yourself.

As soon as my doctor said this I thought my goal was finished before it even started.

Kilokahn: But I'm not saying for sure that I'll absolutely get it, you know? I just want to be able to talk to some of these doctors at least, see what sort of practice they have going on there, get their opinions and all that. Honestly, if I saw things there that were sketchy or alarming I'd forget about it and come right back home. But this is one of those things where if I don't at least go over and talk to them I'll be thinking about this constantly and I'll just be stressed day in, day out.

This was all true. If none of the doctors in India seem any good, I will decide to do the surgery elsewhere.

Doc: Hmm... if that's what you want to do, then by all means. I still can't personally recommend they do this, though. The best I can do is write you something worded in a way that says I am not prohibiting you from seeking medical treatment over there. Will that do?

Kilokahn: Yes, that's fine. I just need something saying I saw you and you're not against it.
Doc: Okay I'll write you something up real quick. Good luck over there and remember to call our international travel clinic before you go so we can get you medication before you enter the country.

I wasn't exactly sure if that type of letter would suffice, but fortunately BLS International accepted it. The letter itself didn't mention anything about cosmetic leg lengthening and just said that I wasn't prohibited from seeking medical treatment in India.

Medications for India
After my doctor visit I was prescribed three medications for use in India.


Left: Vivotif Berna Vaccine - For typhoid fever. Taken once every other day starting two weeks before departure date.
Middle: Atovaquone-Proguanil - Anti-malarial medication. Taken once daily starting one day before entering India.
Right: Ciprofloxacin - Antibiotic for bacterial infections. Taken twice a day with food for up to three days while symptoms persist.

You definitely don't want to contract any of these things while lengthening, so go to your doctor and get prescriptions necessary for international travel to India, should you decide to do your lengthening in the country.

Btw guys, if you have any questions in mind that you want me to ask these doctors, then PM me and I can make a list. I have questions of my own but maybe you'd like to know something specific like their opinion on weight bearing, how they would address a specific issue, accommodation options, etc.

My cirst consultatin is in 4 days 

Hi Machine,

Thanks for your advice. I agree about your list for the three most relevant to CLL, but I do think Dr Talwar might possibly be a good option as well. I have not met him yet and from what Polycrates said from meeting him, by Dr Talwar's own admission Ilizarov is not his primary interest/business. However, I do think he is worth checking out due to his overseas training. His experience is kind of similar to Dr Parihar in the sense that they've both had fellowships with Dr Paley and trained under the same joint replacement specialists overseas.

First Moments In Delhi
I arrived at Indira Gandhi International Airport this morning at 3 am after two long flights that took a total of 17 hours. The guy who examined my passport and Visa looked at me and asked how often I work out, along with what supplements I take because his son is trying to bulk up. I told him that every once in a while I take whey protein powder but nothing aside from that. After I got my bag at the terminal I was supposed to go to customs to declare that I had brought more than 10,000 INR but customs was closed or busy with other stuff apparently because they just told me to go on through and didn't even take the card I filled out on the plane. I was supposed to meet a representative from Rockland Hospital who would take me to Rockland Hotel or Rockland Inn, but I was unable to find him. Some locals came up and asked me if I was staying at a hotel and if I needed a taxi.

I was a little suspicious, but because some of the roads were closed by Delhi police due to some sort of incident I figured I may as well go with them because I had no luck finding the Rockland representative. The guys wanted 3,000 INR to take me to Rockland Hotel and because I had no other choice at the time I went ahead and paid. One guy left after a short while and the driver continued on to the destination. As I was pulling up the Rockland Hotel address my phone powered down and I couldn’t remember it. The driver ended up taking me to a hotel that he knew of nearby, which coincidentally happened to be Hotel Indira that was mentioned by Rockland Hospital's representative.

I thought I had a break because Indira International Inn is supposed to be a pretty good hotel for a cheap price of about $22 nightly, including breakfast. However, after the guy behind the counter woke up and I registered for a room, the guy told me it would be 11,850 INR for two nights ($200 USD). I told him that that's way higher than what I was told the price is and he told me that at most he could give me a discount price of 10,500 INR aka $178 USD. With no working phone and it being 3:00 am, I thought I had no other choice and paid the fee. I followed another employee to my room on the third floor, which itself looked fine. Including cable TV, a large bed, fridge, bathroom, closet, a high powered air conditioner, and wifi, the room was more than adequate for my taste. I went to bed irritated at how my first moments off the plane started out. At least I was able to watch Stephen Spielberg's "Hook" in English before I fell asleep.

First Morning In Delhi
I woke up a little before 8:00 am despite going to bed around 4:00 am. Got changed and went to the hotel lobby where I used the wi-fi to check emails, Facebook, etc. I saw an e-mail from Mr Maini expressing concern because he had a representative waiting for me at the airport and he was unable to find me. I sent him an e-mail explaining the situation of the roadblocks, phone powering down, and being unable to find the guy. Also told him how Indira International Inn charged me $180 USD for two nights. After my e-mail I then asked the guy at the front desk for the location of an ATM machine. I walked outside and saw a black cow chained next to a building, which I took a picture of. I wanted to pet it but a guy was looking at me and I figured it was his cow. Walked a short way to the ATM, noticing the stares from locals, and after withdrawing money from the ATM came back to the hotel and got a reply from Mr Maini, who expressed his apologies for the way the night turned out. He told me that he will try and get me my refund and said to go to the lobby at Rockland Qutab’s reception area where they will also assist me in getting a sim card.

A short while afterward I used III’s taxi service to get to Dr Dhawan’s clinic, which was maybe only 7 to 8 minutes away in traffic. Unfortunately he was not there but the receptionist took down my name and set me up for an 8:00 pm appointment. She told me to arrive at 7:15 because it’s first come first serve and I might not have to wait as long if I arrive earlier than expected. I found out that I couldn’t just go see him at Sir Ganga Ram hospital as he schedules surgeries at the private clinic and only does his consultations there. Spent a long time walking back because I had not yet gone to get a local sim card for my cell that would allow me to call III's taxi service. I thought "what the hell" and decided to walk the opposite way I came from just to get a look of the city. On the streets I was stared at by practically everybody. I noticed that just about everything was in a state of disrepair, and even the cosmetic clinics and dental offices were in buildings that looked run down from the outside, but presumably the insides looked a little better.

I had my hair tied up and was wearing a black t-shirt and black knee-length shorts, which made the summer heat feel even hotter. It really made me appreciate the southern California summers a lot more. It wasn't the first time being exposed to this kind of heat and humidity though, as South Carolina has a very similar climate in the summer. Just as I felt I was going to die of heat stroke, I found a large mall about 4 stories tall. I went inside just to get away from the heat for a little bit and had to go through a security scanner as I walked in. I noticed that many of the office spaces had not been filled with businesses yet but I did see a dominoes and KFC inside. I walked inside a large store in the back that went up three stories and purchased a travel adapter for 505 INR (much cheaper than the 10 Euro it cost at the airport) and three pairs of ankle socks for 297 INR. I gave the guy at the register 500 INR and the funny thing is he gave me 200 INR and three pieces of chocolate candy that the register was filled with as change. He explained to me that they didn’t have small change to make up for the 3 INR that was left so he gave me a piece of candy for each one.

Went back to the first floor into a restaurant that was styled in such a way that was new to me. They had various sweets, desserts, drinks and sandwiches, and you ordered everything you wanted at the front desk so they could give you your receipt that you would show to the employees working the other sections of the restaurant. I didn’t feel like risking dysentery especially after not having found a taxi yet, so I skipped the solid food items and just got an iced tea and a scoop of vanilla ice cream. I’m not sure how they make their ice cream but it tastes different from the kind in the States. It’s hard to describe, I guess it’s more milky if anything, but still good. The iced tea was great. It took them about 5 minutes to make but it had large round ice cubes in it, a fresh squeezed lemon, mint leaves, and a straw with an umbrella top. It was probably the best iced tea I’ve ever had, or maybe it seemed that way because I was dying of thirst.

Once I left the mall I became surrounded by guys who got out of green taxi carts. I told them that I wanted to go to Hotel Indira and gave one of them the address and asked how much. I thought he said 100 INR so I agreed. That's like $1.70 USD. Imagine getting taxi service that cheap in the USA. I was so nervous in the back of the car because Delhi traffic regulations are apparently non-existent. So many times I thought the guy was going to crash into someone or someone was going to crash into him. I made it safely to the front of the hotel and gave the driver the 100 INR and he looked at me disappointed saying “Only 100?”. I responded “That’s the price you told me. How much did you want?” He cked his head once to the right and said “I said 200 please”. I wasn't sure if that's really what he said or if he changed his mind, but he saved me a lot of time looking for a taxi so I gave him the extra 100 INR and went back to my room to bathe, rest, and charge my phone.

The front desk called my room a few minutes later and transferred me to reception at Rockland Hospital Qutab. The receptionist asked if I had received Mr Maini's e-mail and wondered when they could expect my arrival for a consultation. I told her that I'd be there in about 20 minutes and got Indira Hotel's taxi driver named Chacha to drive me. He first took me to a local photographer so I could get more passport photos for my sim card, but the owner of the shop wasn't there and the teen behind the desk was unable to do the photos himself, so I decided to just come back for it later. Chacha proceeded to drive me to Rockland Qutab.

Thoughts On My Day
I've had two consultations today and though I felt good about the first one, the second one really made me take a good long look at whether or not I really wanted to do cosmetic lengthening, in addition to how vastly different the online CLL community views lengthening compared to certain orthopedic surgeons. I can also say with certainty now that I will not consult with some of the doctors I planned to consult with after all, due to the results of my second consultation today. Rather than post each consultation one after the other, I've decided to post them all together once after I complete them. I check out at 12 noon tomorrow and will be taking the railway station to Mumbai, where I will also meet with Dr Suhas Shah and Dr Mangal Parihar.

Lastly, I want to point out that the reason for the apparent price inflation at Indira International Inn, according to another at the front desk, is that bookings for a very short period of time are significantly more expensive than bookings for extended stays. If you were to book a room for a few months you could look at a price of around $20 something dollars per day, but not when only staying for a couple nights.

Photos of the Day
 

The consultations were borderline hilarious in hindsight after the second doctor completely disagreed with some of the things the first one said. I'm in Mumbai now, two days early for my consultation with Dr Parihar. I just e-mailed him and asked if I could move up my consultation to tomorrow. I drove by his clinic and I have to say that the photos in that diary from the other site make it look much worse than it actually is, at least from the exterior as its all I saw up close. Right now I'm staying at a pretty awesome hotel nearby. It would be too expensive to stay here the entire duration of the lengthening if I choose to go with Dr Parihar, but I'm going to see if they have a discounted rate. Another hotel not far from this one offered me a special tariff when I sent an e-mail explaining that I'll be disabled the whole time and won't be able to fully enjoy their facilities because of it.

Quote from: BilateralDamage on June 11, 2014, 05:03:05 AMBtw, can you speak the language of the locals?  And are you treated just as a regular tourist?

Nope. I can speak a good deal of Mandarin but that won't help me, although I've seen a good amount of people who look like they could pass for a local in China - they all spoke Hindi though. I think I'm treated like any other tourist, perhaps I get a few more stares because I have this undercut where my hair is long and tied back but shaved bald all around the sides. They probably find it weird.