I know many folks are considering India for Limb Lengthening, however the reality of what goes on during the process has not been disclosed properly, leaving new patients caught out by surprise.
As many are aware, Dr Sarin was infamously added and then removed from the Recommended List, leaving question marks about what really went on. Therefore the purpose of this thread is to give everyone the truth as much as possible, without censorship.
The following is from a conversation with a ex patient about his experience at Dr Sarin's guesthouse
Q: Will you be starting a diary to detail your overall experience in India?
A: "I might if I can summon up the motivation. The loss of motor abilities (ie paralysis), believe it or not is quite common occurrence in the guesthouse, almost everyone have it, or had it in the past. A lot have been resolved and heals, others not so lucky / still waiting.
I've heard from LL Vets here that complications happen, and to expect the unexpected.
There's a guy here with a condition similar to mine, except way worst; I should consider myself lucky compared to him lol.
Everyone, except 1 lucky bastard, has some sort of complication that they're dealing with; a lot can be resolved with time and care.
The only thing is most are not reported on old forum .
Actually, what people see on old forum is only a small portion of what LL life is, until you actually experience it you'll know. Most patients dont write on old forum because they lack the motivation, or too preoccupied dealing with their own condition / everyday duties to even bother. And the general casual attitude of health professions here, compared to the stricter, more serious attitude of Western health professions...
This surgery has its benefits, but also lots of risks too, just like any other surgery. Just don't be naive and think this surgery is all cake and ice cream all the time."
More to come........
Limb Lengthening In India With Dr Sarin - A Ongoing Thread
Part 2
This will be updated everyday with a new entry. The purpose is to give everyone an idea about the reality of Limb Lengthening and possible complications and situations that could come up.
Q: What do you think about the situation with Patient A (name changed for privacy)
A: Patient A's been having lots of problems for a long time that have been glazed over by the Doc and Doc assistant / health staff for a long, long time. It may take some time for me to describe the all, so I'll describe 2 that it seems he's been having for a long time.
Originally, when he did his initial surgery to install the frames, one of the pins was, not installed properly. And his habits during the journey may have also contributed to his problems.
Patient A was trying to lengthen too fast so he can go home faster and still get his desired height. He would take massive amounts of supplements and calcium in order to speed up the process. This, coupled with the fact that he was not flexible of physically fit before, AND after the surgery may have contributed to his complication.
There was a lot of stress placed on the pin, and also coupled with the pin not being installed properly initially, made it bend and eventually the pin became so loose from that it finally "broke off" and whenever he lengthened the pin would retract into him/bend further and not allow anymore lengthening.
He had to complain to the doctor several times (because the first few times they said he would be ok with time, just keep lengthening etc.)
When he got his second surgery, the doc replaced the pin with a new one and installed a new one. As well as added a 3rd pin for stability. But something was obliviously not done right so he lengthened for 1 month and still nothing.
To be continued....
Part 2 Continued
The other complication is not for the faint of heart. Patient A scabs on his pin sites looks like an infections, but he says he feels no pain. The doc said not to worry. It looks like rotting mold that would sometime ooze out pus.
Originally, he only had it on his one pin site on his right leg (something concerning this was posted on old forum , but after some arguments, it was removed). Now there's a huge one on his left ankle. It does not look natural. And his other scabs look white, not the usual red like other people.
His legs kind of look like they were a little "rotten." the color and texture changed. As well, there is a discrepancy between the lengths of his legs.
The MAIN reasons he (and most people) don't post this bad stuff on old forum , is because Patient A feared bad repercussion from the Health Staff / Doc. That's why he ONLY wanted to post good Information.
He had so many problems but said he did not want to post them and only wanted to post good stuff - again, I believe at that time also,because he fear negative repurcussion, because he may have felt helpless and entrusted in the heads of other people. If he spoke out, he was afraid they would get back at him.)
The other MAIN reason People don't post on here is because they are dealing with so much or in so much pain and simply lack the motivation to do so. I fall in this category, because detailing everyone's issues or detailing / editing my journey entirely till now requires so much time and energy, and I'm already dealing with a lot.
--- This is just what I've experienced or heard from other LL patients. My overall journey may be different because the journey is not over yet.
But some areas seem to be universal:
In India, the general attitude is casual, the things just happen spontaneously. Like procrastinating until the last minute.
Indian- born and raised patients here say that in India, there is so much poverty and population that needs treatment and not resources. They say that as long as you're alive, then you're OKAY.
Conversations and treatment also seem rushed. But we require precision and careful detail and attention.
I believe people, at least where we are being treated have good intentions, but sometimes may be careless and make silly mistakes...or, not educated high enough to deal with issues.
For example, the Assistant who has been treating / looking after us aftercare does not have proper medical degree / education. And doesn't answer questions that we know the answers to, properly.
Also, according to several LL vets, complication rates are higher here versus other places; most are treatable , but it took the LL patients MUCH more time to complete the LL journey in India).
NO ONE here has completed their LL journey successfully (when going for 7.5cm in 3 months or less). There are so many patients here who have been here for 8 months, 10 months.... Recovery and lengthening takes LOTS of time.
Part 3
That's why when you see all these people / kids thinking they can rush all this in 3 months...and lot of these people may NOT even be physically fit. There are some guys planning to come here to play video games for the whole time...seriously?
From the experiences here, these sedentary guys may be in for a whole world of "surprises". Sedentary guys paid for it and in the end, only served to extend the time here instead of saving time.
People who took things seriously and went slow when needed, such as Patient B suffered fewer complications. He was physically fit and flexible before the surgery, and trained well during LL, therefore he had relatively smooth time....in fact, we joke and said all the things he is facing IS NOT related to LL at all, such as getting headaches, fevers, diarrhea. Not so much LL related complications, little Ballerina / knee bend and little pin loss.
Regarding my complications, I asked Dr. Sarin weeks ago for tests but Dr. Sarin says there's no need. After further pushing he said in 2-3 weeks.
After that I ask Dr. Sarin again...but this time he said 6 weeks...Then rushed out. Most meetings with him are very rushed, it's not just me, everyone experiences this. I think he has too many patients and is over extending himself (LL patients, clinic patients, and surgery patients in 2 hospitals)...anyway I called him back and asked him I NEED to do these test and will happily pay.
But he says there is no use doing the test yet because he believes there is still Internal damage that we cannot see. Everyone in the end has to listen to the doc, so even if I was willing to personally rush and for it, it still not likely I would get support from doc to do so. Therefore, I have to wait further.
Other doctors I contacted thought this was very weird. But they also mentioned that I may be lucky because these conditions tend to heal on its own in a few months . But the tests are better done to be safe then sorry, because what the docs are doing is basically making an educated guess based upon my described Sydromes...only official tests will confirm.
Part 4
A UK patient here went through a lot of craziness through his 10 month journey here. Listening to him regale the days of the beginning of LL to now shows so much improvement and positive changes to the Guesthouse situation. But there still needs lots of improvements. He is leaving soon (he hopes) and he wants treatment for the things that are still wrong with him in the UK because the expertise of the doctors and because treatment is free in the UK.
He was intending to do a second LL in India, but now, his mind has changed. He says that even to this day, he still has not had a PROPER answer to what is wrong with him, so he is getting frustrated, but also fighting and keeping a positive attitude. He's been here for 10+ months and dealt with unimaginable complications and pain and loss.
Even to this day he cannot lift his ankle and its basically paralyzed, its known as "foot drop." That condition developed after he had some skin issues and had chunks of flesh from his ankle removed. After seeing him I felt lucky with my situation because my situation seems a lot better / curable on its own.
As of today, almost everyone has problems now. Some had severe, but it fortunate to know that the patients who had complications, the majority of them recovered after some long time.
I was speaking with a bunch of patients and they get pissed off at old forum site because the Infomation on their is NOT ACCURRATE to reflect the majority of patients. old forum is a small, biased view, generally with people who are doing better and does not reflect the general statuses of the majority of the patients.
Part 4 Continued
1) My room mate has pin cuts / burning pains that keeps him up at night. Moving around to go to the bathroom is extremely painful and he almost fainted a few times this week from going. My roomie loss 10 mm and 14mm after lengthening 25 mm (this was 2 weeks ago).
2) my two neighbors have severe pin wounds and ankle cuts.
1 of them could not do physio today due to knee pains, the other guy had to stop lengthening for 7 days due to descrepancy of one one leg, and pain from knee to shin to ankle.
1 of them loss 10mm and 15 mm in his legs after lengthening 45 mm, so he only has 35 mm and 30 mm gained.
The other lost 20 mm on his left leg and 10 mm on his right.
What's funny is old forum does not report the real Pin loss experienced, and makes very light of it such as one only loses 5 mm during the WHOLE journey...very inaccurate.
3) Another patient is sick with a bad fever again. His room mate had to come get fever pills because he is looking awful.
4) His room mate is doing cross lengthening. The break in his left femur is not clean and the bone is curved / crooked.
5) New guy from Australia came, he is drenched in sweat and pain.
6) Another guy is a lengthening / bow leg correction patients. His bone / frame malfunctioned. When the physio pushed back on his leg, the two points where the fracture site occurred broke apart, so it was like pushing the leg apart from the fracture site. Eventually, skin started growing in the gap from his fracture site. So imagine a tibia, then a cavity where the fracture site occurred that skin grows into.
He is super shy and felt uncomfortable asking too many times for Dr. Sarin to fix it because he didn't want to disturb Dr. Sarin, which is ridiculous. It's your legs you're dealing with and you have to live with the results for your whole life...why are you letting it get screwed up simply because you are insecure about repeatedly reminding Dr. Sarin to fix it?
Dr. Sarin is a very busy man so he can't be expected to remember everything. Apparently he does 120 surgeries a month (approx 4 a day) divided into 3 hospitals and his clinic.
7) This patient is one of the few that is doing well with little to no complications.
8-) A guy downstairs had his fibula fuse premately when he lengthened 4-5 cm, so he may have to rebreak it, or accept the height.
9) There are 3 guys waiting for their callus to form. Their frames have been removed. 1 of them did cross lengthening and 2 did Tibias. There were a lot of pain and complication for the cross lengthener, but with time it was resolved and he has begun walking on his own after 8 months here.
One of the tibia guy had a lot of complications with massive pin cuts (at one time some were so large, that after removing the pus and fluid, you could literally see muscle tissue underneath the 3cm long gashes. But after being for 8 months, he finally recovered and just recently started walking unsupported. So time and patients and proper care can heal.
The third guy looks like he is doing well and just waiting on his callus to form.
10) There is a guy who is waiting on passport issues to go home. He is the guy who stayed here for 10 months. He is mentioned above earlier.
11) finally, I'm here, I have mainly pin / nerve pains and stiffness. Whenever I get out to move about or leave the room, I pay for it later with swelling, pin / nerve pains all day and night, and ankle pains.
The overall atmosphere here is positive in terms of attitude, but high in terms of the REAL reality of LL JOURNEY. Like the patients here mentioned, surgery is easy, but the real work starts on the LL journey. The healthier and fitter you are before surgery, the easier, smoother and less complications you will have.
The Doctor, I believe is too overextended that getting time with him is difficult and short, and he takes concerns and problems brought up by patients as too casual sometimes...unless you're on the brink of dying, then compared to other patients Dr. Sarin see, you are essentially "fine."
The biggest complaint I get from the guys on my floor is that they get annoyed when they bring up an issue only to hear," Don't worry, it's fine" without much explanation. They say the Doc treats the LL surgery like any other surgery he does (he does a lot of surgeries) and is sometimes too casual about things, possibly because he sees cases that are WAYYYYY worse then us Cosmetic Limb lengtheners.
Part 5
The majority of people develop complications. It's not as much as Patient A, but not as little as Patient B.
Patient B;s journey has been overall smoother and more positive then the MAJORITY of people here, for reasons mentioned earlier.
The caretaker who is responsible for the upper 2 floors is an 18 yr old kid. He is cool, but also reckless, forgetful and cuts corners at times, his work ethic needs some boosting - think of how a typical teenager at work behaves.
Whereas, downstairs, there is a professional man who used to be a Ward in the hospital for several years before working at the guesthouse.
When the 18 yr old kid left for a 2 week vacation, the older caretaker downstairs took care of everyone on the top floors as well, and people wish he would continue looking after the top floor patients (approx 10-11) with frames that need him, instead of the downstairs patients (only 5-6) who already took off their frames or are doing better.
Yes, Doctor Sarin's schedule is always busy. Getting a decent amount of time with him can be difficult. There are LL vets here who been here 8 months and 10 months respectively who say they've only spoken to Doctor Sarin, in total, for maybe 5-10 minutes. Well, maybe it's their exaggeration, or maybe it's reality. My personal experience also suggest it's not easy to speak to the doctor in person due to time constraints.
Most patients are bed ridden. Things needed to properly facilitate movement is lacking. Or, patients are, in some cases, too sick / in pain to move.
I move around to socialize occasionally, but I suffer from rapid swelling of my left leg, and lightheadedness (blood rushing down to legs) that if I sit up or move around too long, I feel like fainting and when I get back to Bed, I basically collapse from exhaustion. This is NOT typical of me, since I'm have an athletic background and my work typically involves being on my feet and moving all day.
Part 5 Continued
Regarding additional news on complications. The guy with his fibula fusing early at 2 cm (while his tibia was lengthened to 5-6cm) he went to the hospital to break the fibula. He was worried that the 3-4 cm sudden gap would lead to non-union.
He was surprised this was NOT noticed earlier. Also, since the Tibia is being lengthened, but fibula was not, wouldn't there have been a bent in the leg that the doctor or X-ray would have picked up?
He may require a Bone Graft - taking bone from one area of the body and transferring it to the fibula.
Anyway, he didn't get a bone graft, and went to the hospital to break the fibula. He was frustrated at the lack of answers he was getting. He was not properly informed in what was going to be done with him in the OT beforehand, or briefed properly on what was done after beside hearing that they broke his fibula.
AND, the thing that REALLY worried him, his room mate, the other patients and personnel here, was that they did NOT take an X-Ray of his leg AFTER the surgery was performed.
So he has to wait a few weeks for the round of regular X-Rays to know.
Also, there are a few other guys with other conditions.
This guy downstairs loss the use of ALL 10 of his toes, and both ankles, during his LL journey. He was extremely worried but still lengthened 7.5 cm. He removed his frames approx. 1 month ago and just recently, started getting some motor ability in his right leg back.
Part 6
Now, I'm not one to be overly critical about little things here and there such as power outages or minor inconveniences or uncleaniliess (for the most part) but when it comes to patient's health and overall well being, that's not something that should be toyed with or taken lightly.
Improvements have been made, but I believe the first priority should be on addressing and preventing health issues and making sure patients are better off then when they came. A full time nurse was hired because there were some patients that suffered from ailments such as infection and had to be treated.
But other things need to be worked on, such as who is really in charge of the management at the guesthouse. Before, the head manager was suppose to be in charge / have the final say, but now it's becoming more unorganized. There are 3 managers and there is a lot of confusion, miscommunication, or passing on responsibility) and now, apparently when I was speaking to one of the caretakers here about getting something fixed, he said I have to talk to the nurse because the nurse is now apparently the 4th manager?!!
I think Dr Sarin needs to put priority focus on Patients overall well being first, and not passing on responsibility to others, or focusing on smaller things like menu concerns (which is better left to the staff here to take care of).
And finally, and most importantly, the ALOFT, sometimes apathetic ATTITUDE of people here really needs to change, in particular when people bring up serious concerns only to have them passed over is really concerning AND needs to change. In Indian, at least from the experience I went through, attention to detail and precision is NOT priority.
Surprisingly, this has been confirmed by ALL of the current Indian born patients here as well.
In India, there's a lot of poverty, deformity, sickness and death. So in the hospital setting, as long as you're alive then you're consider OK. Getting you to OK or almost OK is the goal, not like in Western countries where they demand a high level of perfection and precision.
Hey Daemon.
I dont mean to horn in on your thread. Your info is invaluable. its awesome! Please keep it up. We need good stories.
In my opinion there is more than one way to skin a cat so to speak.
If Sarin is 'cutting corners' , then lets realize he is also ULTRA cheap in pricing compared to the west. So we have lots of room to bump up the pricing a bit in return for hiring an extra intern or two.
Get the xtra intern at 4k per month (which would bump up the price $1k per person for the 3 months). This guy would spend the entire day wandering the guest house answering patients questions and generally doting on the patients.
This would no doubt resolve most issues. The intern can prescribe mickey mouse diagnosis and certainly take an xr-ray or two. Another option is to INSIST on an x ray anytime they want, if the patient pays for it via debit or whatnot. If the xray shows a problem, its free.
The biggest issue is the ballerina. If Sarin has to tweak his priing slightly to deal with this issue, its well worth it in my opinon to get the guys moving around.
In the end I am no doctor nor have I had any operations so please consider that and have mercy for my potentially ignorant suggestions. 
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