Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: -- on May 08, 2015, 05:23:27 PM
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Surgery Type: External Tibias with TSF Frames
Doctor: Dr. Manish Dhawan
Location: New Delhi, INDIA
Diagnosis: Bow leg Correction and Limb Lengthening
Age: 29 yrs
Pre-Op height: 165 cms (Night) , 167 cms (Morning)
Target height: +5cms
Cost Of Surgery: Rs 9.5 Lakhs / $15000 (approx) (For surgery and stay in hospital for a week)
Date of Surgery: April 16th 2015
Distraction Start Date: April 26th 2015
Special Thanks to itzRammi for the tremendous support during this crucial phase of my life.
Also, I want to thank KiloKhan for his diary, which helped me in choosing the doctor, and giving me the confidence that India is a good destination for LL.
Finally I want to thank the Admin and creator of this forum for giving me a platform to share my experiences and get help in turn.
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From my childhood, I knew there is something wrong with my legs. I always wondered why my knees don’t touch each other, like many of my friends’. When I grew up, I came to know they are called bowlegs, and studying about it a bit more, I could now understand the reason for all the leg pain I have every night, knee pains if I walk a lot, why I couldn’t do skating for long when all my friends were doing it easily, and why my friends used to comment on my crooked walk.
After doing a lot of study, I went to a local doctor to determine if my bowlegs are severe, and if there is any other way of correction. He confirmed my doubt that my legs are a bit crooked, and I will need a correction surgery, and as I don’t really have any big immediate problems with my knees, I could delay the surgery, but ultimately that might lead to knee replacement surgery or other issues if untreated. So, I decided to go ahead with the bowleg correction surgery before my knee turns completely useless.
If I go with bowleg correction, generally it is done one leg at a time; 3 months for each leg, and a month break in between. So, It will be 7 months all together and I will be partially crippled most of the time. And I am sure I will not go out and work, or be active in that period, with a frame on my leg. I was not really ready to go through all that hell of breaking leg and all, just to get straight legs.
I figured, the better way is to do two legs at the same time, and also lengthen 4 to 5 cms in the same 7 to 8 months. This way I have some kind of incentive to go through this procedure, and still be happy at the end for doing it.
From the time I have mentally decided to do CLL, my life is on hold. Every decision I take, every path I go is affected by a possible future LL. I cannot reveal my personal matters, but my decision to do LL will also decide my complete future, whether or not I will have my life as I planned from long back, or possibly go back to square one, which I have to rebuild. This made my decision more difficult.
But I ultimately decided it is now or never, and started to wait for the right moment. From a couple of years I was tied down due to family commitments and my own inability to take a firm stand. A point came, when the frustration peaked, and in a moments decision I just left the job, booked the tickets, and I was at the doorstep of my parents’ home. Yea, they were surprised and happy to find me there. My friends too liked the surprise. Then came the question from every one.. “WHY?” For which I don’t have any answer.
I just got rid of my professional life commitments, but it’s hard to put my personal life on hold. I knew that, so I wanted to make sure none of my personal life needs me during my CLL hibernation. I was not going to tell about my CLL to anyone. So, I waited, just waited for a month at my parents’ doing all the stuff, tying loose ends, planning my CLL, working on the possible doctors, devising strategies to hide my career break from others, and make it as convincing as possible. Once I am sure my personal life will wait for me for a year, then it started.. My LL Journey.
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I took off to Mumbai on March 14th. Felt a bit emotional when I was leaving my parents. I used AirBnb to find an accommodation, when I went to the apartment, it was on 3rd floor, and no lift. I had 2 big Bags; I had to carry them upstairs. That was when I realized, how crowded Mumbai is, and how small the apartments are. Apartment was good though.
As it was not really planned ahead, I did not take Dr. Parihar’s appointment. So, next day early morning, I went to the hospital directly. I came to know he comes only in the evening, and the next day he is going out of country for a week. It happens to me all the time, I am generally lazy, so I am used to such last minute surprises. I did what I do best, knocked all the possible doors and managed to get an appointment same day evening.
Evening, I waited outside, and initially I was called into Dr. Divya’s cabin. He was a nice guy. I told him about my bow leg, and why I need CLL. He tried to correct me saying bow leg correction and CLL are two different things. I said I know, and I came here to know the extent of my defect and if surgery is the only alternative. If so, I am ready for it, If not, I am OK to think about the alternatives too.
He checked my legs, tapped them on the knees and around, to see extent of existing damage, then asked me to walk across the room, to see if it is crooked, then requested me to take few X-Rays.
I went downstairs to get the X-Rays, this is the first time in my life I ever got an X-Ray, and he took not one, but in 5 or 6 different positions (My legs and knees in multiple positions). After that, I waited, they called me in again, but this time into DR. Parihar’s cabin. Dr. Parihar was sitting in the chair, and he offered me a patient chair. Sitting before him, I realized, he was towering over me, he should be really tall. He again asked me everything and I repeated what ever I told Dr. Divya. Dr. Parihar had a soft copy of my X-Rays on his computer. He looked at them, and confirmed I have Bowlegs, but he was pointing to the fact that both my legs are not equally deformed. My left leg has 8 degree curvature, and my right leg has 5 degrees. That explains the fact that I have more pain in right leg than the left, may be because I tend to put all my weight on my right leg when I stand, due to its lesser deformity.
Ultimately, he suggested me to go through the surgery, but he didn’t give me a deadline. He asked me to do it when I am ready, and only after I tell my parents about it, as he explained, LL is not a very easy journey, and we need loved ones through ups and downs.
I was already decided not to tell my parents or any others about my LL, and want to do it alone, so I didn’t ask him if he will allow me to still do it without my parents. If it comes to that, I just wanted to keep that option open to just lie to him that I informed my parents, but they cannot come here during my surgery dates due to some blah blah reason.. :)
After that I went back to the apartment. Next day I wanted to meet LowerVilliers from this forum. He was in Mumbai at that time, and we had a chat before, and I told him I will meet him when I come to Mumbai. But as we all want to be anonymous, we didn’t really exchange names or contact numbers. He informed me before that he is in a hotel nearby the hospital.
But, I couldn’t contact him from the time I came to Mumbai, he didn’t respond to my messages, so I thought of giving it a try. I went to his hotel, and tried to talk to the hotel staff, to find me a foreigner… LOL. I explained them how I am Dr. Parihar’s patient, and I am here to meet another patient, and I don’t know his name or contact number or his room number. As expected, it was a flop. . I couldn’t meet him.
Next day, I started figuring out what to do. I was determined to do the surgery. I had confidence in Dr. Parihar, he was going above my budget, but I was still ok to do my surgery with him, especially after reading kilokhan’s diary. But, I was somehow not so comfortable in a very big city like Mumbai. I wanted to do it together with some other LLer, and LowerVilliers was the only one planning to do his surgery in Mumbai then, but he was not responding to my messages, and I was not comfortable doing it all alone.
I started checking for Hotels or apartments for stay during LL and the cost of living is too much, as I wanted to stay near doctor for the whole lengthening and consolidation.
Because of these multiple issues, my own undecided mind, and on itzRammi’s suggestion, I decided to meet someother doctor too, before taking a decision. I ruled out Dr. Shah, So I decided to go to Delhi to meet Dr. Dhawan.
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Again, overnight, I booked air tickets to delhi and landed in the airport next day morning. Didn’t yet decide on accommodation, so I booked a hotel online. It was a bit far from Sir Gangaram Hospital, where Dr. Dhawan works. I then tried to take Dr. Dhawan’s appointment, and called on his mobile directly. As usual, no surprise, He said he is away, and so I have to wait two more days to get his appointment. Great!! History repeats.
I took the opportunity to look around the city. I liked Delhi instantly. It is not as big and crowded as Mumbai, and there is a feel of history where ever I go. Lot of parks, lot of activity.. Not that I will be able to enjoy any of them during my LL phase.
Next day morning, I contacted itzrammi and he came to meet me at the hotel. He was very excited to meet a fellow LLer. I was happy too, as I was feeling lost and alone in my LL journey already, and I just got some one who can understand my issues. He is very silent at first, but quickly we became friends. You will know in future how lucky I am to just stumble upon him.
I shifted from the hotel, and moved near the hospital, and itzrammi helped me with the luggage, and also took me around the city, I was happy to use the Delhi Metro, and visit places like cannaught place, palika bazar etc.,
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March 25th morning, I took an appointment with Dr. Dhawan. Waited for itzrammi, and after meeting we went to consultation together. It is a very big corporate hospital, with lot of blocks, that made it difficult to find Dr. Dhawan’s cabin.
Unlike Dr Parihar’s hospital, here Dr. Dhawan is one among many doctors, so there are thousands of patients; there is always a line outside Dr. Dhawan’s cabin. We waited our turn, and we went in. We sat down before Dr. Dhawan. He was looking at someother patient, then he came to us.
Dr : Tell me what is your problem?
Me : bow leg correction and lengthening.
Dr: where are you from?
Me: I answered him.
He was surprised ..
Dr: Why did you come this far? And how did you get to know about me?
Me: I told him about the Forum, the ASAMI Board, etc, and how I shortlisted Dr. Parihar and him.
I showed him the XRays taken at DR. Parihar’s clinic. He checked them, and asked me to come with him. We went to a different room which was a bit spacious. He ordered everyone else to go outside, and after closing the door, he asked me to take off the pants and walk across the room. I kept walking. He stopped me..
Dr: your walking pattern is crooked, and your legs need correction.
Me: Is there any alternative other than surgery? I don’t want to go through the ilizarov surgery if there are any alternatives.
Dr: No, Correction surgery is the only way. We put frames around your leg one at a time. Each leg takes 3 months to heal, and there will be a 1 month break in between. So all together it will take 3+1+3 i.e., 7 months.
Me: If that is the case, I will go with leg lengthening too, and do both the legs together, so I can get some height too in the same time period.
Dr. OK, that can be done. We use Hexapod frames in that case. They use software to get proper angular correction, so they will be accurate. In your case externals is the only possible way.
Me: How much will it cost?
Dr: It might cost around 4.5L.
Discussion again went towards forum. He was happy to know that there is a forum, and something good is written about him in it. He enquired about other doctors on forum. I told him about Dr. Talwar, Dr. Parihar, Dr. Milind Chaudhay, Dr. Sarin, and Dr. Sringari.
As expected, many of Dr. Sarin’s and Dr. Sringari’s patients came to him with issues, and he knows enough about their business model. He is not happy about them. Apart from that he made no comments on other doctors.
Later itzRammi too told him about his issue, and Dr. Dhawan immediately confirmed that his height can be increased easily.
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We went back to the hotel. By now LowerVilliers had confirmed his surgery is delayed, so there is no fellow LLer in Mumbai, and I was hesitant to do LL in Mumbai alone as it is a big crazy city and people are too busy to care about one another. But I was Ok with being alone in Delhi during LL as the city is comparatively small and people are a bit nice. And itzRammi would be here for a month or so, so he will be around during my surgery, which was crucial for me. Apart from that, I was comfortable with both Dr. Dhawan and Dr. Parihar for externals.
I thought for a while and decided to go ahead with the surgery with Dr. Dhawan, as my situation is now or never.. In the meanwhile, I informed my younger brother about my decision, and asked him not to tell anyone else. He laughed at first, thought I was crazy, then he realized I am serious, so he tried to convince me not to do it now, or at least inform my parents, but ultimately he realized that this is a done decision, and he cannot change me, so he agreed.
I did not want to live in a hotel during my LL, I wanted a freedom of my own apartment, So I spent the whole next week checking apartments and talking to dealers, seeing the apartments. Every dealer was giving me good offers, but on second or third floor, without elevator, which doesn’t suit me. I had to explain my situation to everyone, so that they can understand my problem, and show apartments accordingly.
Finally I finalized on an apartment, which is on the ground floor; No steps what so ever. Rent was Rs 20,000 per month and electricity extra. Rent is more considering the location and the facilities offered, but I didn’t have many choices. Also, the owners’ family was friendly and they offered to help me in any way they can during my LL. That was a big thing in itself for me.
Next, I moved-in to the apartment, and then purchased an orthopedic mattress, a TV, and some kitchen utensils. Also, went around the locality and collected contact numbers of all the restaurants, pharmacy stores etc., which offer home delivery. Also I hired a maid for Rs 3000 per month, who cleans the apartment daily, washes my clothes, and do the dishes, and cook food for me. She will also go get groceries if needed.
Once I am settled–in, I called Dr. Dhawan to setup a surgery date. He gave me the date on April 16th. Also he asked me to come and meet him at the hospital. I went, and he asked me to give my X-Ray. He checked it again, and asked me if I am willing to go with TSF instead of Hexapod. He explained me the pros are, immediate full weight bearing, less rings, compact and strong. The only issue is it will be costly; the total might come to Rs. 6.5 Lakhs. That is 2 Lakhs more than Hexapod. But, I didn’t hesitate and confirmed that I will go with TSF.
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On April 15th, a day before surgery, itzRammi and I went to Sir Gangaram Hospital, to get admitted. It is a very big corporate hospital. They made us wait for 2 hrs before allotting a room. The room was clean, all the facilities are top notch. We just waited for them to come and take blood and urine samples for a lot of tests which are mandatory before the surgery.
Once it is done, I got a feeling that I will not be able to walk again properly for a year or so, and I wanted to go out and roam on the roads for one last time. I am usually not that kind of a person, but something happened, and I want to go out at any cost. As I was admitted, and I am the patient, I am not supposed to go out technically till I am discharged. But, as I am still in my regular clothes, I first tried to sneak out, but the guard somehow suspected, and stopped me, then I tried to talk to nurse, to let me out, which she didn’t allow. I got pissed off, and called Dr. Dhawan, he said I can go out if I want. But nurses were clearly not happy at me for putting them in that position, which require taking a decision on their own. They clearly follow the rulebook, no free will. So she found an easy way out for herself; I can go only if the duty doctor for that night allows me to. I waited, and when duty doctor arrived, I told him all the stories I can, with a fair bit of emotions and compelled him to allow me to go out. At last he gave me permission, and we went out. I was so happy to be out there, I walked a bit on the roads for an hour or so, and came back to the hospital. Immediately after coming back, they gave me the patient clothes, and they put a band around my wrist so that I can’t try to sneak out again.
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On Surgery day, they woke me up early in the morning, for an X-Ray. Though I could have walked there myself, the ward boy insisted I go in a wheel chair. He is just following his rulebook; any patient should be taken in a wheel chair. I felt funny, but I obliged. itzRammi came with us too. The guy took an X-Ray of my chest. I was confused, and I was sure he took a wrong X-Ray. I told him I have a leg surgery and not a heart surgery. He smiled, and told me this was required for giving Anesthesia to me. I felt like a kid, who doesn’t know anything. After the X-Rays, we returned to the room. At around 10:30am nurse and the ward boy came for me to take me to the operation theatre. They put me on a stretcher, and took me to the waiting room, where we came to know my surgery is still 2 hrs away, I was asked to wait. I used the time to go to the restroom and clear my stomach before the surgery. Then I waited, almost slept for a while. Then a guy came and checked my reports. I figured he came to knock me out before surgery. I was right. He just took me into a room, it looked nothing like an operation theater which I only saw in the movies. I was still admiring the beauty of the room; when he suddenly held my arm, put a strip around it, something like they do for BP check up. Then he took a pipe from the nearest machine, and put it under my sheets, and then held my wrist, found a nerve, and inserted a needle, which was connected to a bottle with some mysterious liquid in it. No idea what it was, but in hardly 10 mins I felt dizzy.
I opened my eyes, and I was no longer in that room, I was back at the same place from where the anesthesia guy took me. I didn’t understand at first, but I know the only way to check if my surgery is already done, or I am still waiting for my turn, is to check my legs. I immediately removed the sheets from my body, Vola!! The first thing I notice is I am nude waist down! Great! I immediately covered my self again, as fast as I could. My reflexes made sure I didn’t loose my modesty in front of a room full of patients and nurses. Also I still didn’t get a peek at my legs. Now, I removed the sheets from my legs instead. Its like what they show in movies; the slow motion shot. There they were, in all their glory, black and shining, around my legs. They looked good in fact, but I knew they are not jewels, but very expensive leg cuffs. I am unable to move my legs or toes. That seems to be my fate for an year or so..
Next thing I noticed is the Urine Pack. Upon some groping I found a tube hanging from my precious private part. That made me really annoyed, some one doing that to me when I was unconscious, without even letting me know before hand. Now I know it is a part of the surgery, but then at that moment I felt like I was abused.. ☺
Also, I was not able to put my legs properly due to those rings, there is no good way, my ankle was in air and it was paining. I had to call the nurse, and she did fold some sheets, and put it under my ankles for support. It was better after that.
After they brought me back to the room, at 6:30pm, I found itzRammi sitting there. From him I came to know that I was away for 8 hrs, the surgery itself was for 6 hrs. itzRammi was sitting in the room all that time, as the nurses told him to be in the room just in case they might need him during surgery. He was even ready to give his blood if needed during surgery. Thankfully extra blood was not needed, But the fact that he was ready to give blood made me realize how lucky I am and how much I owe him. You will see this is just the beginning, and I cannot repay all that he has done to me in the next 15 days. I didn’t see Dr. Dhawan the whole day. But the nurses started giving medications 4 times a day.
My left ankle was stiff and painful, and few of my pinsites were bleeding. They said its normal.
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Second day (17th Apil), liquid diet was given, while continuing the medication. No sign of Dr. Dhawan, but many doctors who are part of Dr. Dhawan’s team are coming to me regularly to check my status. But I am getting a feeling that they are just coming out of curiosity to know my story and check my frames. I am becoming more like a caged animal in a zoo for all the patients, ward boys, attenders, nurses, and everyone to see.
Finally Dr. Dhawan came to me. He was so happy looking at me, and said my surgery is a grand success. He suddenly pulled off the sheets from my legs. My reflexes again saved my modesty, I was still not wearing anything waist down. I did purchase few loose fitting shorts before, but I am sure they will not fit over those rings, and I was not in a position to move my legs, let alone wear anything. He checked the legs, and with one finger around the ring, he suddenly lifted my whole leg, to show how light-weight the ring is. My leg is in air, and I am like, what the F**k! And before I realize, he just left it from there, and my leg fell on the bed. I was so angry, but surprised that I didn’t get any pain. Then he went to my ankles, and started moving them in all the directions possible, with all the pressure he could apply. It pained a bit, but not really as much as I feared. Next he told me, a physiotherapist will come to make you walk now. I said no way I am going to walk today, I am not ready for it mentally and physically. He told me not to worry, and said, TSF frames are tough enough to handle your weight, and you should walk as much as you can daily, else if you are just bed ridden, you will be like that for the rest of your life. I am sure he did all that just to give me confidence to walk and show that my leg is lot tougher than I think. It actually did help! I was not even moving my toes till then, and after that visit, I started moving my leg a bit, and folding the leg at the knee. Later, a physio came to make me walk, but I just lied to him that Dr. Dhawan asked me to walk from tomorrow (Dr. Dhawan did say if you are not really ready, walk from tomorrow, but you should start walking ASAP! so technically its not a lie). He went away, and I was happy to have averted that walking thing for a day!
From morning I was not so comfortable. First I wanted to go to the toilet, but they wouldn’t let me. They offered a bed pan instead, But I declined, not ready for such a thing. They had a mobile potty kind of thing, a chair with a potty attached to it. I said I just want to use a real toilet. Nurses were worried if anything happens while helping me to the toilet, they will loose their jobs. A ward boy came forward to help, but once he saw my frames, he never came back. Taking a sh*t was not the priority, the main problem was with the Urine Pack. The feeling of having a Urine pack is itself very unnerving, you loose control on your piss and it becomes involuntary, over that, it was kinda getting messy, sticky around private parts, and I had to clean the area with water. The whole day nothing else was on my mind. I even tried to check if its possible to pull it off, but was afraid of doing it without permission.
Slight bleeding in pinsites continued, but ankle pain resided, but still it was stiff.
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Third day (18th April) onwards normal diet was given to me. I was getting used to my frames, and I was able to move my toes, and legs a bit. itzRammi was helping me a lot in arranging support for my ankle, moving my legs when ever I misplaced them, pay the hospital bills with my card, do all the other stuff required.
First thing I did in the morning was I called Dr. Dhawan, like a kid in a day care, I asked him permission to go to toilet, and also complained about the nurses for not letting me use, what seemed like my basic human right.. He just laughed, and said he is giving me all the permissions in the world to do everything I want. He is so confident on my frames. But still nurses and ward boys were not helpful. Infact they were even avoiding me. So, I decided, I don’t need anyone’s approval for it, and I should do it myself. Discussed the plan with itzRammi, and as he was looking at how desperate I was from two days, he agreed.
Then came the physio again, now with a beautiful girl, she is a trainee I suppose. I kinda hated them for coming so early, but seriously, I was very afraid to walk. As I told you, I am not wearing anything except a shirt, so I put a towel around my waist and tied it together before they came. So, when they asked me to get up, I removed the sheets, and tried to sit on the edge of the bed, but couldn’t really move my legs all the way. So, the physio helped me put my legs on the floor, helped me wear some slippers on. Then both of them on each side held my arms, and lifted me. I was holding the walker. I was standing with their support on both sides. Now I realized my towel was slipping slowly, and the knot I made was apparently loose. I suddenly left the walker, and held the towel in place. If they were not holding me properly, it would have been a disaster. The physio told me not to worry about the towel, and said it’s a hospital, so that’s nothing, just leave it, or if I wanted he will hold it for me. Apparently, he was asking me to walk nude, as no one cares if a patient is wearing anything at all.. lol
I asked him to just hold my towel in place. Then I held the walker again. They made me stand properly. Legs were paining, but I managed. With the whole body weight on my hands, they made me take my first step. It was very painful. I couldn’t do it, but some how I managed two steps forward, then two steps backwards and some steps side ways, and then sat down on the bed. It was like I went to a war and won. It drained all my energy away, I couldn’t do anything else for atleast a couple of hours. I just slept.
Dressing is done today, and they showed me pinsite care. We paid hospital bills, as nurse gave my discharge date for tomorrow.
In the meanwhile Physio came again in evening. This time I made sure my towel doesn’t need any external help. I used a pin to hold it together. but realized its too early to be able to walk all the way to the toilet, so got back and sat down on the bed. I sat there fo 15 mins, with foot on the floor. After that I forgot about going to the toilet, and was just happy at my new found ability to walk.
But later Dr. Dhawan visited me, and told me he needs to take an X-Ray on Monday, which will be used to feed information to the TSF Software, and get distraction sheet. So, effectively my discharge date was delayed by 2 days. We didn’t understand why there was a misunderstanding.
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After the initial discharge news, I thought, I need not use the toilet here, and instead go home and be at peace. But, after it is postponed, its finally time to go to the toilet. I was sure I cannot walk to the toilet. Getting a wheel chair was out of question without support from Nurses or ward boys. So, we waited for everyone to sleep, so nurses would be done with their duty and will not disturb us. Then I sent itzRammi to check if the path is clear, we waited for around an hour to make sure no one is watching. Then I got up, sat on the edge of the bed. itzRammi brought a wooden chair near me. That was my vehicle for the day. I was worried if there will be any noise, so itzRammi sat on the chair, and I pushed it to check its noise level. It was well with in the limits, so with his help, I slowly sat in the chair. Now itzRammi pushed the chair slowly across the room. It was making a lot of squeaking noise, but we pushed it anyway. Then opened the toilet door, and pushed it in. We realized the chair has a handle, so I cant just slide across onto the commode, and due to limited space, I have to almost stand up and turn and sit down on the commode. It took some time to figure out how to do it, after a lot of planning, and considering all the angles, and support I will require in the future steps, we calculated a optimum solution, and using his shoulder and chair handle as supports, I successfully sat on the commode safely. It felt as the best moment of my life after the surgery. I was so happy. I cleaned up myself; there was a lot of betadine all over my thighs and legs from surgery. And after everything, I called itzRammi from my phone, and he came back and helped me back into the chair. When we opened the toilet door, our neighbor was standing outside, and he was looking at us like we are two weird people, doing a stunt. But he stood there and held the door open, and waited till we reached the bed. Then I got into bed, and was so relieved.. The toilet was hardly 7 steps away, but I had to do all this just to reach it. I was determined to learn walking asap and be independent.
I had backache whole day possibly due to wrong bed position, or lying in same position all day. I realized that and changed the bed position often, using the remote, so the backache reduced.
I had a sound sleep that night. No pain .
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Fourth day (19th April), today physio came in the morning, After my toilet episode yesterday, I was so desperate to be independent ASAP. So, I brought up all my energy, and courage, and I actually asked him to make me walk till the toilet, and instructed him not to support me unless needed. I want to do it on my own. That was in a way my measure for freedom and independence. I was surprised when I actually did reach the toilet, with no one supporting me. He was just standing beside me to catch me just in case I couldn’t hold myself. I came back, and sat down on the bed.
I learnt the technique to properly support myself and distribute weight between my hands and legs, to walk properly. I didn’t really get it yesterday when they were trying to teach me. But, once I really wanted to do it, I miraculously know how to do it. It did use up all my energy, but I was so happy, I didn’t really feel that helpless feeling I got yesterday after walking.
I spent almost the whole day sleeping. Nurses were disturbing me in the sleep every now and then, giving me salines, injections, and what not. But, I kept sleeping nothing can disturb me today. I was getting all kinds of weird dreams, mostly I am very powerful in those dreams with some kinds of super powers. I accept, I watch a lot of sci-fi and fantasy movies, but I never usually get such dreams where I am the hero. I think its mostly my mind trying to console itself and come out of the helpless feeling it is in. It is nature’s way of at least giving me false hope.
itzRammi was sleeping whole day too, he was tired and exhausted. He had to be there with me all day, and also do all the other tasks outside, when I was just lying on bed sleeping or watching TV.
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Fifth Day (20th April), I went to take X-Ray in the morning. Dr. Dhawan came there and helped us take the X-Rays in the proper format, as they will be used to calculate the exact distraction sheet. Later we spent the whole day paying hospital bills and waiting to get discharged. But, as the X-Ray got delayed and we already had to pay that day’s charges too, so on doctor’s advise, we decided to get discharged on the next day.
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Sixth Day (21st April), we realized that doctor has added TSF frame cost to the hospital bill, and the final bill came to Rs 9.5Lakhs. That was 3 Lakhs more than that was informed by the doctor. I am sure paid everything and finalized in the morning. Once we got a go ahead for discharge from finance department, we booked an ambulance, to go home. Coming out of the hospital felt so awesome. When we reached home, it was difficult to carry the stretcher inside the house. But, ambulance driver, itzrammi, my house owners helped in carrying me inside and dumped me on the bed.
I felt so happy being at home finally.
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itzRammi, the man whom I can’t thank enough. He is a good person, a friend and my LL Brother. He was there with me when I needed a person the most in my life. When I started my LL journey, I was alone, there was no one to share my issues with. I somehow contacted him in this forum, and I need to thank this forum for that. He was kind enough to share his contact number, listen to my problems, and then guide me in the right direction. He is a veteran on LL, he knows a lot of stuff, and that helped me a lot. When I came to delhi, he met me, took me around the city, helped me in setting up my apartment, he was there through out my surgery, 7 whole days in hospital with me.
He did everything a family could do to someone in a hospital. He was even ready to donate his blood for me if needed during surgery. He helped me set up my food tray everyday, he helped me position my ankle properly in times when they used to get stuck in weird positions, and I could not move them. He helped me in going to the toilet, when the whole hospital staff was not willing to help. He collected the information of all the medicines the nurses were giving me, googled them, and used to tell me what they were for. He used to make me forget the pain by being funny and giving me company. He literally wrote a diary of my day-to-day activities in a book, so that it would be easy for me to remember when I am writing a diary on this forum. He is the one who is making sure I write this diary by reminding me regularly. Even after coming back from hospital, he helped me for 10 more days at my apartment, before moving out of the city for his personal work. Even after, he keeps calling me, to know how my pain is, how I am handling things, if I am taking medicines etc. and gives me any tips that can help me.
He did everything I could ask for at this time of my life and more. I was literally begging him to stop being that good to me, as every passing day, I was going into his debt, which I am sure, I will never be able to repay.
I am just happy I found a good friend for life..!!
I did not make this post to idolize some one, or to show my respect towards itzRammi. I am posting this to show how much we can help each other as a group and how helpful this forum can be in our life, especially during LL phase. My special thanks to the admin and moderators of this forum for creating this platform.
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Informative and a awesome start to your diary!
I'm surprised that the TSF only cost you around $15K.
I might be in India mid-2015 to consult both Dr.Dhawan and Dr.Parihar for external tibias. However I'm still undecided whether I want another surgery.
It's nice to read that Itzrammi has been helping you during the process.
Anyway, thanks for sharing the first Dr.Dhawan diary and I wish you all the best in achieving your target.
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Thank you TRS.
The surgery cost depends on a lot of factors. Dr. Dhawan did not give me any standard package. I just got admitted in the hospital, and all the charges summed up to that amount. So, it will change depending on the type of room you choose, number of days you are in hospital and number of visits a doctor makes to your bed per day, physiotherapy, and if you are a Indian citizen or a foreign national. But, whatever, the final tally will be plus or minus $2k I suppose.
If possible, let me know when you come to Delhi.
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Great start to your diary, Phoenix. That's pretty cool that you were able to get TSF's at that price. If you were to go with the hexapod it might have been around $10,000 but TSF's seem to be more sturdy for weight bearing. Dr Parihar didn't have any TSF's when I was there, although he's used them before when friends of his in the UK donated some to him. I suppose that's the benefit of having your surgery done in a large public hospital like Sir Ganga Ram instead of a small private hospital like Mangal Anand.
How often do you see Dr Dhawan for followups? And when you see him, do you do so at his private clinic or at Sir Ganga Ram? I'm assuming you've started distraction now. Are you going at a rate of .75 mm per day or 1 mm per day?
It would be cool to see some pictures of your apartment or the hospital and x-rays if you have any. You're sure saving a lot of money by getting an apartment to stay in. $300 a month sure beats the close to $1500 a month I spent on the hotel in Mumbai lol.
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I need to thank you KiloKahn.. Your diary was the inspiration. Without that I might not have dared to do LL in India!!
Dr. Dhawan seems to have directly got the TSF frames from the company. Before surgery, he told me he was discussing with the manufacturers to get me the exact quote. And as my legs were thin, I requested for smaller frames, and he got me smaller 155mm frames, which are good for me.
I saw Dr. Dhawan 15 days after my discharge, when I went to take my X-Rays. He asked me to come back after around 10 days. So, the frequency of visit is every 10 to 15 days. And, as I took my apartment near Sir Gangaram Hospital, I go there for consultation. I never visited his private clinic.
I am distracting at 1mm per day. I started it on April 26th. so I am 1 cm taller already :) Pain is bearable till now. I am not taking pain killers from a week. Having physiotherapy everyday, so that might be helping too. Not sure how long I can keep that up..
Sure, I have some pictures, I will post in a few days.
Delhi is cheaper than Mumbai any day.. But, the key is, I stayed here for 20 days before surgery, and I checked hotel and apartment rates, and took the decision.
For my Apartment, Rent, other expenses, grocery, maid etc., together cost me around $500 per month
When I checked Hotel stay, they offered me Rs 25000 per month, and Rs 9000 for food, which comes to around $600 per month.
Not a big difference, But, as I will stay here for 8 to 9 months, I felt apartment is better, feels like home!!
Great start to your diary, Phoenix. That's pretty cool that you were able to get TSF's at that price. If you were to go with the hexapod it might have been around $10,000 but TSF's seem to be more sturdy for weight bearing. Dr Parihar didn't have any TSF's when I was there, although he's used them before when friends of his in the UK donated some to him. I suppose that's the benefit of having your surgery done in a large public hospital like Sir Ganga Ram instead of a small private hospital like Mangal Anand.
How often do you see Dr Dhawan for followups? And when you see him, do you do so at his private clinic or at Sir Ganga Ram? I'm assuming you've started distraction now. Are you going at a rate of .75 mm per day or 1 mm per day?
It would be cool to see some pictures of your apartment or the hospital and x-rays if you have any. You're sure saving a lot of money by getting an apartment to stay in. $300 a month sure beats the close to $1500 a month I spent on the hotel in Mumbai lol.
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:) God Bless You Son ;) lol :P
I actually need to be more thankful to you now I don't fear even a bit to undergo LL , They are really so proud moments to me you trusted me a lot from the day we met tbh I felt myself so special and happy to help an LL Legend , I have never wondered i would meet up with an LL aspirant so quick but it's you who made my dream come true ;D :D :) and happy to say that I have got a chance to visit Delhi again in the next week yay HIP HIP HURRAAAAH we're meeting again !!
Me after 20 years :: Phoenix has been acknowledged as a legend in my lifetime.
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Hey phoenix!
Great to read your diary....I live near Delhi... was also considering doing ll with either Dr. parihar or dhawan in india... would be great if i could meet you and learn more from your experience.. could help you if you need something aswell.. do tell... send me a PM... looking forward to hear from you....
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Hey phoenix thank you for share your experience with us. I think that TSF is a really good option . Hope your journey goes perfect ;)
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Thank you bro..
Cool .. I am eagerly waiting to meet you in a few days.. !!
Legend.. LOL.. That's a big word.. I didn't win a war.. I just got my legs broken.. :D :D
:) God Bless You Son ;) lol :P
I actually need to be more thankful to you now I don't fear even a bit to undergo LL , They are really so proud moments to me you trusted me a lot from the day we met tbh I felt myself so special and happy to help an LL Legend , I have never wondered i would meet up with an LL aspirant so quick but it's you who made my dream come true ;D :D :) and happy to say that I have got a chance to visit Delhi again in the next week yay HIP HIP HURRAAAAH we're meeting again !!
Me after 20 years :: Phoenix has been acknowledged as a legend in my lifetime.
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Wow.. Nice.. I would like to meet you too bro..
I will PM you my contact number.
Hey phoenix!
Great to read your diary....I live near Delhi... was also considering doing ll with either Dr. parihar or dhawan in india... would be great if i could meet you and learn more from your experience.. could help you if you need something aswell.. do tell... send me a PM... looking forward to hear from you....
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Yea, I think TSF is good option too. Atleast it is bit more comfortable than classic ilizarov or hexapod.
Hey phoenix thank you for share your experience with us. I think that TSF is a really good option . Hope your journey goes perfect ;)
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Hi Phoenix , how are u and thanks for sharing your experience with us ....
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why was it so hard to get in contact with parihar when you got to india??
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Hi Phoenix , how are u and thanks for sharing your experience with us ....
Hey Boxer, I am good. There is a bit of pain, but that is mostly due to me, as I don't take pain killers unless it is really necessary.
Apart from that everything is as expected.
why was it so hard to get in contact with parihar when you got to india??
Hi crimsontide, I did not really plan this ahead, and was not sure about my exact mumbai travel date, so did not take Dr. Parihar's appointment before hand. Otherwise, they respond to emails quickly. I don't think it is a problem contacting him.
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phoenix, ty
btw, how many rings on the tsf? i think for correction, only 2 rings.
thats a very good price for tsf, really good
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phoenix, ty
btw, how many rings on the tsf? i think for correction, only 2 rings.
thats a very good price for tsf, really good
Its for correction and 5 cms lengthening. There are only 2 rings, in the upper half of my tibia. I will post some pictures shortly.
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Hi Phoenix ,How are you these days , What is your daily routine generally and can you post some pics of your legs bro?
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Hi Phoenix ,How are you these days , What is your daily routine generally and can you post some pics of your legs bro?
I am good. I will try to post weekly update from now on.
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Weekly Updates:
22nd Apr to 25th Apr
Coming home from hospital feels good. My life is back to normal. I know it cannot be normal for a year, so I just trained my mind to pretend frames are my new normal, and deal with it.
In my apartment, bathroom is just adjacent to my bed, so I used a chair to go to bathroom, with itzRammi’s help. He used to push the chair into the bathroom, and I could just move onto the potty myself.
Started walking from April 23rd. It was difficult, but managed it. Now I can use walker to go to the bathroom and sit on potty. But getting up is difficult, as I need to put a lot of pressure on my knees to getup. Getting up from bed is different, as the height of the bed is same as my knee level. But potty height is below my knee level and its very difficult. Still need some help in getting up from potty.
I started taking bath. I cover my frames with towels so that they do not get wet.
The whole week was fun, as itzRammi was there to help me out, and not much pain as I am taking painkillers this week. Did not face any big problems.
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26th Apr to May 2nd :
I stopped taking painkillers from starting of this week. Will take when needed.
I started distraction on April 26th . 1 mm per day (0.25mm rotation 4 times in a day) for the next 30 days, then for 10 days I will do bowleg correction. itzRammi was so excited, so I let him do my first distraction. Initially, we were really not sure how much we should rotate to get 0.25mm. There is no indication; we have to do it approximately. Initially it was difficult, but after a couple of days, it became very easy. It hardly takes one minute to distract both the legs.
On April 29th, I compared the stud values to the distraction schedule sheet that Dr. Dhawan gave me and marked what is complete. I should have checked the sheets properly before. My left leg starts distraction on April 25th, one day before my right leg, but I didn’t notice it and started distracting both on April 26th. So, I am behind schedule on one leg. Also, I was distracting approximately and I am going behind on 1 mm rotations, and was not really following the sheet exactly.
As I was behind schedule due to initial confusion, over the next three days, I distracted more than 1 mm to reach the schedule. I know this will bring on some pain, but I wanted to come back on schedule. Ultimately I brought everything on schedule over 3 days, but it increased pain.
Initially, there was no pain; I was walking fine. But, on May 1st the pain started, mostly due to distracting over the 1 mm limit, and it was really difficult to walk, so I stopped walking.
In this week, itzRammi had to go away due to his personal tasks. Now I started being alone, and doing things independently. After many attempts, now I am able to getup from the potty too. ☺
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May 3rd to May 9th
On May 4th, Dr. Dhawan sent his house boy, Hansraj, to do dressing, and also remove the stitches. Happy to get rid of the stitches, I am just waiting for them to heal completely to see if I will need a laser scar removal, or not.
My first doctor visit, post surgery, was on May 5th. It is the 10th day of distraction, so 1 cm growth on paper. The hospital is very near to my apartment. On the advice of Hansraj, I hired an electric rickshaw to take me to the hospital. It seems that is the preferred mode of transportation for someone like me. When it came to pick me up, I realized it was the best mode of transport for me. It has very low seats, and it was mostly open on the sides, so it was easy for me to get into it. My apartment landlord accompanied me to the hospital. It is very difficult to go to the hospital alone, as it is a very big hospital with hundreds of people and going alone on a wheel chair is impossible.
At the hospital, initially I did not cover my frames. When they were taking me on wheel chair for X-Ray, few people screamed, and some were looking at me like a freak. So, on my way back from X-Ray, I covered my frames with a towel.
We took some new X-Rays, and visited the doctor. He said the distraction looks good. Not much callus formation, but it is expected. He gave me calcium and vitamin supplements.
Also, I was not walking from a few days now, but had to walk a lot today. But did not really experience any pain.
On May 7th, I started Physiotherapy sessions with Dr. Arvind. He comes to my apartment everyday, and charges Rs 600 (Approx $10) per visit. I transfer money to his bank account every week or so.
He first uses an electrical instrument and places its cords (Not sure what they are called) around my knees for around 10 mins to send electrical pulses. It helps in muscle growth and stretching. Then he helps me do some ankle stretching, and some leg exercises. That’s his daily routine. Altogether he stays for 30 to 40 minutes.
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May 10th to May 16th :
Physiotherapy is going on everyday. I am not walking from my last doctor visit. Doctor has asked me to walk as much as possible. But, unlike before, I am really not that confident or enthusiastic to walk. Nothing happened which can shatter my confidence, but slowly I stopped walking unless it is needed. I can walk, but I loose a lot of energy due to it and I feel helpless after that. So, I found ways to get things done with out walking, like using a chair to go around. So, practically I don’t find any need to walk. But sometimes I stand up for few minutes and weight bear. I know I should walk, in future I will try to walk more.
On May 11th I started experiencing severe pain at the outer side of left ankle-tibia joint. Physio Arvind was not able to recognize the reason for the pain. He was advising me to take painkillers. But, I was not willing to take them, as it will just numb the pain, and I will not get a chance to know the real reason for pain. If it was a pin site pain, I have no option but to take painkillers. But as it looks like a joint pain, I expect it to be resolved by physiotherapy. At least my physio should be able to identify the cause.
I did not take painkillers for 2 days, and hence did not get sleep for 2 nights. The pain level was not high, but it was recurring every few minutes. I just forget about pain when I was watching movies or doing something else. But, once I plan to sleep, my brain has nothing to think about, and my concentration goes towards the pain, and I will involuntarily move around my leg to reduce the pain, but that actually increases it, and once this happens, I loose sleep and I return to doing something else. This happened both the nights. I was taking short naps during day.
So, after 2 days of bearing pain, I figured out the reason for pain at that particular location. I am just lengthening my legs right now. My legs are still bowed. And left leg has 8 degree bend. By increasing the tibia length at an angle, I am actually changing the angle of tibia ankle joint and that is putting a lot of pressure on outer side of the ankle- tibia joint. I can feel the nerves are bulged, and lot of pain at that location. I am sure physiotherapy cannot fix this issue completely, only bowleg correction can.
Now I have 2 ways to deal with this issue. First is to stop lengthening, and talk to Dr. Dhawan and start bowleg correction immediately, and then later restart the lengthening. Second is to just take painkillers and follow the schedule, as after 10 more days, I have bowleg correction already scheduled.
I decided to go with second option, as rescheduling bowleg correction is a big task; I need to go to hospital and take new X-Rays, and Dr. Dhawan needs to check the new X-Rays and redo all the calculations. I figured I could just wait 10 more days, take painkillers, and do not put more weight on ankles. I am not walking much, so that is not a problem.
May 14th evening itzRammi came to visit me. It's always good to have a friend to talk to. I took a painkiller in the night and had a sound sleep.
May 15th, I reached 2 cm distraction on paper.
itzRammi will be with me till the weekend, so its fun. Also I just kept taking painkillers when ever needed.
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My Landlord and their family:
My Landlords’ family has 6 members; an old couple, a single daughter and a married daughter, who lives there with her husband and a kid. They all are very good. My landlord came to hospital couple of times when I was admitted for surgery just to check on me. His wife is a bit tough to handle, but she is good at heart. The old couple own a tailor shop downstairs beside my apartment. So, they keep walking in front of my room all the time. My front door has an extra grill door for security. As it is very difficult for me to open the door all the time for my maid, physiotherapist, or anyone else, In the day, I just let them lock the grill door from outside and keep my actual door open. So, I can see who ever are passing by my door, and whenever anyone from their family passes by, they talk to me. They check on me if I am eating properly, they offer tea or food or fruits sometimes. They help me in everything I ask them of. Their unmarried daughter is very funny; she gives me company, watches movies or game of thrones with me. The married daughter too is very sweet. She calls me a brother, and actually treats me like one. She is pregnant, but still she comes and talks to me almost every day; she is fun to talk to.
Whenever I talk to her, I can see many uncanny similarities between pregnant women and LLers. She walks slowly; she needs to sleep straight on the back, eat good nutritious food, take lot of medicines, visit doctor regularly, and bare a lot of pain for many months. She has many sleepless nights and struggles to sleep. Except the pregnancy part, almost all the other issues are very similar to any LLer. End result in both the cases is also a new life and a new beginning.
Her kid comes everyday to play video games. He is a good distraction for me from being alone, but he makes a mess out of my house if left untamed. So, I discourage him from coming often. Her husband is a very good guy, and he gets me money from ATM when needed, or brings in service men to fix any issues in my apartment.
Being in touch with their family is making me forget the fact that I am alone in an alien place.
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That's great you have people around you for support. One of the most difficult parts for me was having barely social interaction at the hotel I stayed in because I was the only foreigner there. How long is Dr Dhawan saying you need to keep your frames on?
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Yea, Man there you go 8) ..... you are making a grate dairy with full of details ..keep it up ,
26th Apr to May 2nd :
I stopped taking painkillers from starting of this week. Will take when needed.
I started distraction on April 26th . 1 mm per day (0.25mm rotation 4 times in a day) for the next 30 days, then for 10 days I will do bowleg correction. itzRammi was so excited, so I let him do my first distraction. Initially, we were really not sure how much we should rotate to get 0.25mm. There is no indication; we have to do it approximately. Initially it was difficult, but after a couple of days, it became very easy. It hardly takes one minute to distract both the legs.
On April 29th, I compared the stud values to the distraction schedule sheet that Dr. Dhawan gave me and marked what is complete. I should have checked the sheets properly before. My left leg starts distraction on April 25th, one day before my right leg, but I didn’t notice it and started distracting both on April 26th. So, I am behind schedule on one leg. Also, I was distracting approximately and I am going behind on 1 mm rotations, and was not really following the sheet exactly.
As I was behind schedule due to initial confusion, over the next three days, I distracted more than 1 mm to reach the schedule. I know this will bring on some pain, but I wanted to come back on schedule. Ultimately I brought everything on schedule over 3 days, but it increased pain.
Initially, there was no pain; I was walking fine. But, on May 1st the pain started, mostly due to distracting over the 1 mm limit, and it was really difficult to walk, so I stopped walking.
In this week, itzRammi had to go away due to his personal tasks. Now I started being alone, and doing things independently. After many attempts, now I am able to getup from the potty too. ☺
Phoenix did you talk to doc before distracting more than 1mm to reach schedule, You have to be very careful with lengthening if any thing goes wrong talk to your doc at first place......... ;)
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That's great you have people around you for support. One of the most difficult parts for me was having barely social interaction at the hotel I stayed in because I was the only foreigner there. How long is Dr Dhawan saying you need to keep your frames on?
Yea, its always good to have people around. Dr. Dhawan did not give any specific time frame yet. As per initial discussion it should be around 8 to 9 months for 5cm. I did not really ask him after surgery, but I assume its till the end of this year.
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Yea, Man there you go 8) ..... you are making a grate dairy with full of details ..keep it up , Phoenix did you talk to doc before distracting more than 1mm to reach schedule, You have to be very careful with lengthening if any thing goes wrong talk to your doc at first place......... ;)
Thanks Boxer.
I did not talk to the doctor about it :P
As it was during the initial 1 cm lengthening, I just assumed my legs will cooperate with me.. ;D ;D
I should have asked him, but sometimes I just do it, and worry later!
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My pre-op legs:
(http://s5d4.turboimagehost.com/t/23178495_FullSizeRender-1.jpg) (http://www.turboimagehost.com/p/23178495/FullSizeRender-1.jpg.html)
(http://s5d4.turboimagehost.com/t/23178497_FullSizeRender.jpg) (http://www.turboimagehost.com/p/23178497/FullSizeRender.jpg.html)
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Post surgery pics:
(http://s5d2.turboimagehost.com/t/23178501_IMG_0104.jpg) (http://www.turboimagehost.com/p/23178501/IMG_0104.jpg.html)
(http://s5d2.turboimagehost.com/t/23178502_IMG_0105.jpg) (http://www.turboimagehost.com/p/23178502/IMG_0105.jpg.html)
(http://s5d2.turboimagehost.com/t/23178503_IMG_0106.jpg) (http://www.turboimagehost.com/p/23178503/IMG_0106.jpg.html)
(http://s5d2.turboimagehost.com/t/23178505_IMG_0107.jpg) (http://www.turboimagehost.com/p/23178505/IMG_0107.jpg.html)
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More Pics:
(http://s5d1.turboimagehost.com/t/23178582_IMG_0116.jpg) (http://www.turboimagehost.com/p/23178582/IMG_0116.jpg.html)
(http://s5d1.turboimagehost.com/t/23178585_IMG_0117.jpg) (http://www.turboimagehost.com/p/23178585/IMG_0117.jpg.html)
(http://s5d1.turboimagehost.com/t/23178589_IMG_0119.jpg) (http://www.turboimagehost.com/p/23178589/IMG_0119.jpg.html)
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Good pictures. Can you show any X-rays of your legs before your surgery?
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that looks very, idk how to say it
the bottom bolts look enormous though?
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Good pictures. Can you show any X-rays of your legs before your surgery?
Yea, I will post X-Rays too..
that looks very, idk how to say it
the bottom bolts look enormous though?
:D
Bottom bolt was added for stability. It was either that or, a third ring at the ankle. I would prefer a bolt over a big ring any day.
Yes, the bottom bolt looks big in the pictures, but it doesn't feel that enormous on my leg. May be I got used to it.
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May 17th to May 23rd:
Left leg ankle is still in pain, a bit of swelling and stiff. Right leg is absolutely fine; No issues at all. Initially after surgery, right leg ankle was stiff, and created problems, but left leg was good. But, now miraculously right leg is fixed, and left leg is killing me.
I went to visit the doctor on May 20th, took X-Rays as usual, Doctor was happy with the X-Rays, but I asked him about my callus formation. I hardly see any callus formation. According to him, during lengthening not much callus would be formed, so he asked me not to worry about it. The callus is better than that in the last X-Ray though.
He gave me some medication for the nerve pain in left leg, and painkiller Ultraset.
Physio did not come most of the week due to some personal reasons; I tried to do exercises, but I could not really get rid of left ankle stiffness on my own.
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Completed 3 cm lengthening today.. :)
Started Bowleg correction.. It will be completed in a week.
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The X-rays I have seen from other patients while they lengthen also show no callus formation - so don't worry. You will be fine - You seems to have a good Doctor. Good luck.
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Those are some pretty cool looking frames. I'm still surprised that there are TSF's available for that price in India. My local ortho is a trauma surgeon who has used TSF's before and he was very sure that India doesn't even have a patent for their use. I guess there are ways to get around that though :D
I was also given the Ultracet painkiller. It's very mild but it was enough for me on most days. Did Dr Dhawan say he can give you stronger ones if you need or does he not like to use strong painkillers as well?
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There are several places in India where they use Taylor Spatial Frame - They have been using it in India at least since 2002. Also other none western country apart from India use Taylor Spatial Frame. All over the world (in western and none western country) when they want to use Taylor Spatial Frame the Hospital/Doctor buy it from a Company just as they do with all other Orthopedic devices.
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The X-rays I have seen from other patients while they lengthen also show no callus formation - so don't worry. You will be fine - You seems to have a good Doctor. Good luck.
Thanks Just_Me, I was worried about it a lot. May be my genes itself has some slow bone healing problem. :)
Those are some pretty cool looking frames. I'm still surprised that there are TSF's available for that price in India. My local ortho is a trauma surgeon who has used TSF's before and he was very sure that India doesn't even have a patent for their use. I guess there are ways to get around that though :D
I was also given the Ultracet painkiller. It's very mild but it was enough for me on most days. Did Dr Dhawan say he can give you stronger ones if you need or does he not like to use strong painkillers as well?
Thanks Kilokhan, Indian surgeons do use TSF, in fact apart from Dr.Dhawan, I contacted Dr. Milind chaudhary too over email, and he offered TSF too. Not sure if they get it directly from company or from different sources. I will try to ask Dr. Dhawan when I meet him on Wednesday, but I am mostly sure they get it directly from company; at least that's what the impression I got from few discussions with Dr. Dhawan.
Dr Dhawan initially gave me Hifenac D for pain, it is stronger. But 2 weeks back he asked me to take Ultracet only for pain from now on. It is good for me for current ankle pain. He might advice against taking strong painkillers, but I am sure he will give stronger pills if absolutely needed.
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http://www.cellublue.com/index_en.html#home check this out for scar healing hehe
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Whenever I talk to her, I can see many uncanny similarities between pregnant women and LLers. She walks slowly; she needs to sleep straight on the back, eat good nutritious food, take lot of medicines, visit doctor regularly, and bare a lot of pain for many months. She has many sleepless nights and struggles to sleep. Except the pregnancy part, almost all the other issues are very similar to any LLer. End result in both the cases is also a new life and a new beginning.
That's a fun comparison. :)
Also, I can see the TSF looks quite impressive. I can see why people in the hospital were freaked out. :) I'm surprised he didn't use smaller rings. Congrats on your progress so far. The TSF should give you great results if well done.
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I coming to delhi end of June/July for a consult! :)
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Those are some pretty cool looking frames. I'm still surprised that there are TSF's available for that price in India. My local ortho is a trauma surgeon who has used TSF's before and he was very sure that India doesn't even have a patent for their use. I guess there are ways to get around that though :D
Kilokhan, I checked with the doctor yesterday. He said, he will directly deal with the manufacturer, and there are no middle men. I guess India got the patent now.
http://www.cellublue.com/index_en.html#home check this out for scar healing hehe
LOL.. Are you sure it is for scar healing??! It is for fighting cellulite it seems.. Here's a link:
http://en.wikipedia.org/wiki/Cellulite
Where do you find all such things bro.. ;D
That's a fun comparison. :)
Also, I can see the TSF looks quite impressive. I can see why people in the hospital were freaked out. :) I'm surprised he didn't use smaller rings. Congrats on your progress so far. The TSF should give you great results if well done.
:D Thanks dude..
The frames are available in many ring sizes : 80, 105, 130, 155, 180, 205, 230, 255 & 300 mm.
Mine are 155mm frames. Pre-op, since I couldn't exactly imagine the sizes with out actually seeing the frames, I asked doctor to pick a small size in adults category. He picked 155mm, and said the smaller sizes are mostly used for children. Given a choice, i would have chosen the 130mm frames. But may be they would have been too small. Not sure.
Anyways 155mm are not that huge, they only look huge due to my thin legs. And I have enough room to clean the pin sites easily.
I coming to delhi end of June/July for a consult! :)
Great.. Let me know if you need any help bro. You can PM me anytime.
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My Pre-Surgery X-Ray:
(http://s5d2.turboimagehost.com/t/23236821_Mar-16.jpg) (http://www.turboimagehost.com/p/23236821/Mar-16.jpg.html)
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Post-Surgery X-Ray (20th April):
Right Leg:
(http://s5d2.turboimagehost.com/t/23236820_Apr-20_R.jpg) (http://www.turboimagehost.com/p/23236820/Apr-20_R.jpg.html)
Left Leg:
(http://s5d2.turboimagehost.com/t/23236819_Apr-20_L.jpg) (http://www.turboimagehost.com/p/23236819/Apr-20_L.jpg.html)
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IMO your tibia and femur shown in your pre-surgery X-ray has a good shape to get two straight legs after you finish your bowleg correction. I believe you wrote that you will complete your bowleg correction next week. So I think you will have two straight legs next week - Good luck.
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I thought you could not do 1mm/day with tibia, only with femur, is it possible to do this with tibia because of TSF?
how does the doctor feel about leaving for consolidation, is he okay with that, and you can send him x-ray etc.
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IMO your tibia and femur shown in your pre-surgery X-ray has a good shape to get two straight legs after you finish your bowleg correction. I believe you wrote that you will complete your bowleg correction next week. So I think you will have two straight legs next week - Good luck.
Thanks just_me, I have completed straightening my legs today. They look straight to me, but we can only be sure after taking the X-Rays in a couple of days.
I thought you could not do 1mm/day with tibia, only with femur, is it possible to do this with tibia because of TSF?
how does the doctor feel about leaving for consolidation, is he okay with that, and you can send him x-ray etc.
We can do 1mm with Tibia, irrespective of which frame we use. The limit per day depends on the individual lengthening capability. Soft tissues react in different ways for different people, few people get pain at 1mm, but I did not really get any problem due to it. And it was not my choice, Dr. Dhawan gave the schedule with 1mm lengthening per day as a standard. He might have reduced the limit if I complained of pain, but I didn't.
I am planning to stay here throughout consolidation, so did not ask him, but I am sure he will approve a request to stay away during consolidation. Will cross check with him in the next visit.
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That's great you're not having any pain. I tried alternating between .75 mm and 1 mm daily and the pain was unbearable for me on the 1 mm days.
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*I'm coming to delhi end of June/July for a consult! 2 July just booked flights.
I speak perfect English must stop rushing my typing. Would you recommend Dr. Dhawan? How would you rate your treatment?
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I went to the hospital today for consultation and for taking new set of X-Rays. Dr. Dhawan was present during the whole time to supervise if the X-Rays were taken properly. Legs look straight in the X-Rays, but there is a slight misalignment. Dr. Dhawan took the X-Rays to re-calculate the leg angle and length, and he will give me a new lengthening schedule for 3 cm more in a couple of days. I will decide when to stop lengthening after I reach 5 cm total lengthening. Most probably I might go a few mm above 5 cm.
I also took X-Ray of the left ankle to determine if there is any issue, as I have pain from a few weeks. There seems to be no problem with the ankle, and the pain most probably is due to nerves pressing against the bone due to realignment of bone angle; Not a big problem. Also the pain is mostly subsided, and I can feel pain only during physiotherapy and during weight bearing. Ankle stiffness is a lot better than it was a week back, but still not perfect.
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*I'm coming to delhi end of June/July for a consult! 2 July just booked flights.
I speak perfect English must stop rushing my typing. Would you recommend Dr. Dhawan? How would you rate your treatment?
Hi upandaway, Thats Great, it is not even a month from now.. When are you planning to have your surgery? and who else are you consulting in India?
Dr. Dhawan is a very good doctor, and I do not see any big problems yet in my case. He is very busy all the time, but will answer your calls any time of the day. I can recommend him for External tibia surgery with Hexapod / TSF . The hospital is also very big and has good facilities.
The only minor inconvenience I have is with the post-op consultations. The hospital is very big, with many buildings and there are lot of patients so where ever I go there is a big crowd. There is a waiting involved every where. Every consultation takes almost 2.5 hrs, where most of the time is consumed for x-rays. This is not even an issue for many, but I hate hundreds of people staring at my legs, and I hate waiting before the X-Ray room, as I feel like a disabled, helpless patient when I sit in that hospital wheel chair for that long. :)
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Well I am starting to lean towards Dr, Dhawan. He's on the ASAMI board and has a great rep. I want the surgery as soon as possible after first consult. How quickly can he perform sugery do you think? You say his busy--> Could you ask the Dr. for possible surgery dates for me?
I will also see Dr Sangari, and Talwar if I can get hold of him. Not Dr, Sarin. Rather be short. Any other Dr. in Delhi you could recommend?
Im bringing my girlfriend for support and nursing. So rather avoid guesthouse type places and get an apartment. She's a great gal.
Is there no way to do check ups in the private clinic? That surely would be better?
You ended up paying $15,000? Why was that? He quoted around $10000. Was it because of the TSFs? They worth the extra $$? I have saved around £7,000 plus overdrafts, loans I can get around £10,000 for the trip...
Thanks for the diary + details ... truely inspiring me! Should be seeing you soon..
upupandaway
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Well I am starting to lean towards Dr, Dhawan. He's on the ASAMI board and has a great rep. I want the surgery as soon as possible after first consult. How quickly can he perform sugery do you think? You say his busy--> Could you ask the Dr. for possible surgery dates for me?
I will also see Dr Sangari, and Talwar if I can get hold of him. Not Dr, Sarin. Rather be short. Any other Dr. in Delhi you could recommend?
Im bringing my girlfriend for support and nursing. So rather avoid guesthouse type places and get an apartment. She's a great gal.
Is there no way to do check ups in the private clinic? That surely would be better?
You ended up paying $15,000? Why was that? He quoted around $10000. Was it because of the TSFs? They worth the extra $$? I have saved around £7,000 plus overdrafts, loans I can get around £10,000 for the trip...
Thanks for the diary + details ... truely inspiring me! Should be seeing you soon..
upupandaway
Dr. Dhawan took around 10 days in my case after I gave him confirmation. But it will really depend on how fast he can procure the frames, his schedule, availability, etc. You better check it directly with Dr Dhawan.
Once you are in Delhi, its not that difficult to get hold of Dr. Talwar. There is no one else in Delhi. I don't even prefer Dr. Sringari.
Getting apartments in delhi is not that difficult. But getting an apartment with a lift and other amenities near hospital is a bit tricky. You have to plan ahead.
You might do checkups in private clinic too. But when I asked him before my surgery, doctor asked me to stay near the hospital as he is mostly available here. But if you talk to him, it can be worked out.
Yes, the extra cost is due to the TSF frames. It is really your decision if you want to go with hexapod or TSF. I will not be able to judge which of them is better, as I never saw anyone with Hexapod before. But, TSF sure looks sturdy enough. Also, there are only 2 rings, so I feel comfortable.
I suggest you to talk about the finances properly with the doctor before committing to the surgery. You should be very careful while planning your finances. Plan your living expenses, physiotherapy costs, medicines etc.
Approx costs would be:
$17000 -- Approx Surgery (TSF) + First week expenses.
$700 -- per month living expenses
$2000 -- Approx total cost for Physiotherapy sessions, it will depend on number of sessions. Doctor insists on a lot of physio.
$1000 -- Approx cost for X-Rays and consultations for all your future visits.
$1000 -- Approx cost for medicines.
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Hi Phoenix
congratulations for 3 cm height gain and leg correction :)
i believe you are still in Delhi and somewhere close to Sir Ganga Ram hospital , i am also from Delhi and somehow i am interested in opting for LL , after going through KiloKahn's diary i made up my mind to visit Dr.Dhawan for a consultation but to be honest, reading about all complications and pain & the long time one needs to wear those frames i was discouraged to go ahead :o
would it be possible for me to come and visit you as i am really curious to see a patient (specially scars) in real instead of online pics, i visited Dr.Sarin's guesthouse around 1 month back but there were around 5-7 guys (all Indians) in the room who all had done their LLs there and being a girl i was embarrassed to ask questions while others were all staring at me :-\ so i couldnt even check anyone's frame and left in few minutes as doctor Sarin was waiting for me outside
please let me know if it would be possible, you can drop a private message in my inbox
all the best with your LL journey :)
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Hi Phoenix
congratulations for 3 cm height gain and leg correction :)
i believe you are still in Delhi and somewhere close to Sir Ganga Ram hospital , i am also from Delhi and somehow i am interested in opting for LL , after going through KiloKahn's diary i made up my mind to visit Dr.Dhawan for a consultation but to be honest, reading about all complications and pain & the long time one needs to wear those frames i was discouraged to go ahead :o
would it be possible for me to come and visit you as i am really curious to see a patient (specially scars) in real instead of online pics, i visited Dr.Sarin's guesthouse around 1 month back but there were around 5-7 guys (all Indians) in the room who all had done their LLs there and being a girl i was embarrassed to ask questions while others were all staring at me :-\ so i couldnt even check anyone's frame and left in few minutes as doctor Sarin was waiting for me outside
please let me know if it would be possible, you can drop a private message in my inbox
all the best with your LL journey :)
Hey Parmida,
Thank you!!
After going through the surgery, I will not recommend LL surgery for anyone unless it is absolutely required. It is a very big commitment and you should know all the pros and cons before getting into it.
I am still in Delhi, and you can visit me anytime. I will PM my contact number to you. Also, if you want I might even introduce you to a female LL patient from Delhi. She is currently in her consolidation phase, and being a female she might be more helpful to you :)
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I have started my lengthening again after a one week break. I am doing physiotherapy regularly, and weight bearing at least a couple of times per day. Left ankle is still stiff, but I can bring my ankle to neutral position during weight bearing.
Also from a few weeks, there is a lot of itching sensation around the pin sites. I know it is very common and natural, but its really irritating. Is there any way to stop it ?
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Between my last post and now, my leg issues have doubled. Initially I was weight bearing daily, and only left ankle was stiff, but that too used to come to neutral position after some time. I stopped walking from a long time since my ankle pain started. But, 10 days back, I decided to walk; when I tried to take my first step itself, I lost control and luckily I managed to fall back onto the bed. But, in the process, I put a lot of pressure on my legs I suppose. After a couple of days, my right leg calf muscles started paining and the pain subsided in 2 days. Meanwhile my left leg calf muscles also started paining. I thought it will be back to normal in 2 days too. But, even after almost a week, left leg calf is still paining, and the pain extended to my thighs too. Moreover, I am not able to make my left leg completely straight. It is slightly bent at the knee. This problem started with the calf muscle pain. I am still hopeful that it is not a big problem, and will subside shortly.
Despite all these, the main problem still is my left ankle. I think the ankle stiffness is not because of stretching. I can notice the difference between my left ankle and right ankle. When I stretch my right ankle, the stiffness and pain is usually on the back of leg, in the calf muscles and below knee. I can feel muscles pulling naturally. But, when I stretch my left ankle, it is very stiff, like it is struck there before even my muscles stretch in the back. It is like my ankle bones and my tibia bones are colliding, not the natural elastic movement which I have in right ankle.
Also, in those few days when I did some weight bearing, it put a lot of pressure on my left ankle, and I feel, ankle fixation screw has moved out around 2mm. I can just feel a bulge of the screw head under my skin now. It was not noticeable before. Ankle fixation was good before, but after my 8 degree bow leg correction, the leg angle has shifted a lot, and that might have put the ankle fixation at a wrong angle with respect to new leg structure. I am starting to think that might be the whole reason for this ankle issue.
In fact, I spoke to Dr.Dhawan about it in my last visit, he took a ankle X-Ray and thought everything is fine. And I was also not sure what the problem was then. That was almost 20 days back. So, I will take another fresh X-Ray on my next visit and see if it validates any of my theories.
For now, my physio has asked me not to put too much pain on the legs till the muscle pain is subsided. So, I am resting again. No weight bearing for now, only stretch exercises.
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Well I'm here in Delhi.
First thing is when people say Indians are not trustworthy they are not underestimating. Delhi is a bit of a nightmare. The Hospitals are completely packed and it's completely dog eat dog. You really have to be on guard 24/7. Being white is an automatic red flag as well.
Saw Dr. Dhawan and seems geniune enough. Pushed me for TSF frames for a 6 month period. LON or LAPN was not reccommended or talked about at all. He mentioned knee pain and pushed for TSF as his personal recommendation. Which from what I have read is sensible opinion but may not be practical for me.
He said the price is around 10 to 11 Lat which is now with exchange rate changes is quite expensive. No specifics though which is unsettling (but usual). The price is more than Russia now (at 14500 euros).
I am seeing a patient of his tomorrow. Which may or may not be you? Phoenix?
What I have noticed as well is Delhi is run on Kick backs. So basicly as soon as you say any sort of information, a recommendation will come whereby they will get money for it. Taxi, sim card, food, anything and I really do mean ANYTHING. It's really underhand. They will call ahead. Run out to you and hassle you. Follow you. Anything to get your money. This is the vibe you get from everyone in Delhi. So it's hard to get a handle on this doctor or anyone. It makes you question everything and everyone. A lot of people here are actively working to take, by any means, your money.
The hospital for one does not feel like a safe, healthly environment. Wards (in this particular hospital) if you can call them that are under construction and overrun. What provisions there are for any sort of surgery let alone complex surgery it is difficult for me to see at the moment. You are really rolling the dice.
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Hmm, when I was there he told me that I had to make a choice between LON or the hexapod. TSF wasn't talked about, but I guess he has direct contact with the manufacturer of TSF now so he can offer them. Did you ask him about just lengthening with the classic frames and then switching to hexapod (their version of TSF) if you develop any misalignment? That will reduce the price a fair amount. I was quoted $9,000 USD for LON and $10,000 for the hexapod, and that's when the USD was weaker against the INR than it is now.
So you saw Dr Dhawan at Sir Ganga Ram hospital instead of his private clinic?
You might also be interested in checking out the Rockland Hospital team and consulting with Drs Verma, Talwar, and Ratra.
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Hi Kilo.
Yeah I saw him at Sir Ganga'. Wanted to check out the hospital. He obviously has more expirenced with the TSF now and for making adjustments it does make sense however I do believe the fact that he can charge more for it does come into it.
He reuses the TSF frames it has nothing to the manufacturer in my opinion. I asked 'would it be possible to get the frames removed in the UK'. 'No, the frames are very expensive and we need to reuse them' was his reply. Which is sort of tells you he really gets them on an ad hoc basis and really needs them back. I doubt he has ever bought new TSF frames.
I'm pretty sure the frames are to justify the added cost in comparision to other people offering surgeries in India. So he can now charge £11,000. If he was to offer just hexapod and his qualifications (which may be superior) this does not really differentiate him. TSF are a mark of quality which the hospital and the level of care provided (from first impressions) do not live up to from what I have seen.
I think if he said £9000 hexapod people would flat out say no. The hospital is way below substandard. So donated TSF frames equals £11,000 price and the name and look reassures rich westerners.
Think Africa aid clinic then triple the amount of people ten times. You have to be honest. The 'private' rooms are just in the middle of it and patients are flung around the corridors in all manner of states amoungst hundreds of people. I do mean hundreds. I don't doubt his qualifications or skill as such. It's the state of equiptment and facilties which are of grave concern. His recommendations are in line with the best options available for height surgery but he does understand that's why people would come to him and not others and how he will be judged. If he said anything else he would have no patients.
This is obviously a lucrative business as the number of assistants more than tripled when I talked to the dr. They all had the air of wanting to make money about them. Their faces of some of them when I said I wanted to see another Dr were instantly telling. Dr Dhawan even got them to get the doctors number and one was very perterbed by this and remarked in hindi. (Dr was Dr Talwar). There is always that pressure it seems in Delhi. The majority honestly have the constant, I do mean constant, drive to squeeze every penny out of you. More than 50% of Delhi live in extreme proverty and you can feel its effects. People need money. I'm not talking about medical assistants, these are non medical persons. The more people around the more likely there is going to be the Delhi 'mindset'. So the number and their reaction of the 'assistants' worries me. It makes sense that the price will and has been driven up.
Drs, from what I can see, being educated classes can isloate themselves somewhat and Dr Dhawan could be geniune but it's so hard to tell honestly. Most will happily and is somewhat part of the culture to lie to your face (in semi polite manner).
I have just come from Russia. I didn't visit any hospital or anything related to LL as I could only get 1 month visa. But the standards there are leaps and bounds above India. Sanitation? There is zero in India. Russians do have standards. How can you trust a hospital with live construction, doors falling off etc. It's a big ask. Incidence of infection etc. This is the centre of Delhi. Thousands of sick people with untold diseases streaming through. Would you risk open wounds in a shared room for £11,000? Not only that they usually tell the truth and price said is the price paid. No tricks or sob stories etc. Maybe Rocklands might have better standards.
I would happly pay that with decent standards. Tomorrow.
*There has to be some lines. My lines are pretty low. Low, low, low for this. So please don't take my comments lightly if you are reading and thinking whatever. I want this for the right reasons, for me and I am willing to do more than you to get it. I am honestly still considering Dr Dhawan and looking forward to changing my mind tomorrow.. Trust is in short supply...
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Hi upandaway, I was busy from a couple of days.. Didnt check ur replies.. You might be meeting me. When Doctor called me to inform that someone from UK is interested to talk to me, I figured it might be you.
The only minor inconvenience I have is with the post-op consultations. The hospital is very big, with many buildings and there are lot of patients so where ever I go there is a big crowd. There is a waiting involved every where. Every consultation takes almost 2.5 hrs, where most of the time is consumed for x-rays. This is not even an issue for many, but I hate hundreds of people staring at my legs, and I hate waiting before the X-Ray room, as I feel like a disabled, helpless patient when I sit in that hospital wheel chair for that long. :)
I informed you before hand how the hospital would be wrt the people. India has 3 times the population of that in US, within one third of its area. So there would be lot of people around, and Delhi is national capital, so very crowded. Also, due to your skin color you will get a lot of stares. Delhi people are shameless at that.
Sir Gangaram hospital is the largest hospital in Delhi catering to both rich and poor. What you saw yesterday was the old building which was built in 1954. It is undergoing some renovation. Old building is used for doctor consultations only. And that is where most people come to, and that is where you went to I suppose. It is not modern and I am sure you did not like it. There is a new building behind this where most of the modern equipment is. That is where the surgery will take place, and that is where you stay post-surgery. They do maintain standards and hospital is clean enough. It is built recently and is modern enough. Many rich politicians and rich people have surgeries here, as the hospital has modern equipment and the doctors are skilled enough. But if you are going to compare it with the hospitals in US/UK, it will be a no match for obvious reasons (The same rich people go to US/UK for complex surgeries.. :)).
This hospital gets government funding as it was service oriented, so they do surgeries to some poor trauma patients every year free of cost, or for some nominal price depending on their financial capability. I am sure they will re-use the TSF rings for such patients for deformity correction. After the consolidation, you are not obliged to take off rings here, irrespective of what D. Dhawan wants. You can do it anywhere, and any doctor will do it easily. Dr Dhawan might "like" it if you returned the frames, so he can use it for other poor patients, but he has no right what so ever to insist you to return them.
Also 2 days back I went to hospital for changing my Struts on the frames. They brought there a big TSF Kit, which has a lot of screws, Struts, Rings etc., all new in TSF branded boxes. Doctor does say they get it directly from the manufacturer, and I dont think the rings I saw in the kit are old, or re-used. After wearing the TSF for 3 months, I know that even if frames are used for 10days, they will wear out. It is made of aluminium with black paint on it. Same as a black IPhone which looses its paint around its edges after a few days of use, TSF frames lose a lot of paint after using for a few days. Also there will be lot of nicks on the edges. So, it is easy to distinguish a re-used TSF frame. But I think it is not that easy to recognize a re-used classic ilizarov frame, as there is no paint on it, and everything is aluminium (or what ever that metal is).
I am not trying to convince you to do surgery here with Dr.Dhawan, in fact he sent few of his prospective LL patients like you to talk to me before too (or just to look at my TSF frames, and generally I am happy to talk to new people, so I let them visit me), and I always manage to scare them off if I think they do not understand the depth of their decision, and just want to be tall. I sent a few of them for further consultation with Dr.Talwar too. I believe people should have a complete understanding of what they are getting into before having this surgery. If you are basing your decision on the infrastructure available, before taking a decision, just have a look at the new building too. And being a foreigner, you will not be sharing room with anyone, you will get a separate room after surgery. There are many options for room facilities you can choose from. Even if you decide to go with Dr. Talwar, you will face similar issues. But, may be his hospital might have more corporate look (Not sure, never visited his hospital) as it is completely private and profit oriented. I did not prefer Dr. Talwar as he prefers Monorails, does not fix fibula, and the surgery is actually done by other doctors, he just supervises them (I got this last part from someone from Dr dhawan's team, so I might be wrong too). I did not like that idea.
Also, you can just have surgery with Illizarov/Hexapod frames as Kilo suggested if you dont want to spend more on TSF frames. That will reduce a lot of cost. Dr. Dhawan has started trusting TSF more than classic frames due to their good performance, and comfort. But, he do offer classic ilizarov if insisted. Like many indians, even he might have assumed you are the richest person around (It is a kind of racism though not explicit), so suggested the best option he offers. Most of the surgery cost in my case, (Almost 5 Lakhs) is for the TSF frames itself. So, opting for Hexapod will reduce the cost.
Irrespective of the doctor you go to, or the hospital you have surgery in, all my comments are generic, and apply to pan-india or at least for delhi.
Where ever you go in India, you will face people who look to make some money out of a foreigner. Their salaries are not so high, but cost of living is very high in metro cities like delhi. So, they tend to approach rich people for tips for services they provide. And in their narrow, limited view, a foreigner is like the richest person they ever saw in their life. But, generally, they are not very greedy and it might be a dollar or two more than they charge an Indian (2 Dollars is 120 Rupees which is a considerable amount for them). And considering all that, you should be able to negotiate to save few bucks. In a way you should be street smart to deal with people here. The silver lining out of this is, in India, you can get anything if you are willing to spend money. You can have maid cooking food for you, cleaning, washing and all help.. under $60. You can find a hair stylist(or rather I should call him a barber) who comes to your house and does a hair cut under $5 and so on. Finding english speaking maid/barber is a bit difficult though.. :)
You should be ready to deal with all these issues and people, if you decide to do surgery in India, or look else where.
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I did not prefer Dr. Talwar as he prefers Monorails, does not fix fibula, and the surgery is actually done by other doctors, he just supervises them (I got this last part from someone from Dr dhawan's team, so I might be wrong too). I did not like that idea.
That is true. Dr Talwar is the head of the orthopedics department at Rockland so it's considered his team, but the main surgeon doing the Ilizarov surgery at Rockland is Dr Rajesh Verma. http://www.hbgmedicalassistance.com/doc-details.php?did=275
He's the one who I did my first consultation with. It's true that they prefer monorails, and they prefer externals, but they will use classic frames if you go with LON. They're now offering Precice for femurs too.
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Many things have happened in the past few days. On Tuesday this week, I went to consult with Dr. Dhawan. Initially, he changed a few struts which reached their maximum capacity for lengthening, and replaced with longer struts. Then I told him all about my left leg pain and stiffness at the knee and ankle. And how I feel it is not a problem due to lengthening. He asked a few questions, and then suspected it might be due to fibula consolidation pre-maturely. He advised me to take X-Rays to confirm the same. My fibula did consolidate quickly, and the two ends attached with thick re-generate. It happened due to bow leg angle correction of my left leg. It being a 8 degree bow leg, I had to bend the whole leg outwards by that angle, which brought together the two fibula ends. This led to quick consolidation over the last two weeks.
Doctor has advised me to have a surgery immediately to break the fibula again. As my legs are already straight, and since my main concern was not lengthening, I wanted to avoid extra surgery and offered to go back by 1cm, and stop lengthening at 4cm only if it can avoid surgery. But he said, that will not really help, and that fibula should be broken to ensure I do not have any problems in the future. And he didn't like the idea of lengthening only 4cm, just to avoid a simple surgery. Dr. Dhawan also assured me he will do the surgery as inexpensive as possible.
At last I agreed, gave blood sample for some medical tests for surgery and went back home. On doctor's advice, I turned back left leg by 5mm to ease off some pain and pressure on the leg. On thursday, I arrived at hospital by 8am. Immediately they prepared me for surgery, and I insisted on speaking to Dr.Dhawan before giving me anaesthesia. He came to talk to me. I explained him all the pain areas again, and then asked him to remove the fibula fixation screw too in the same surgery. I felt that post bow angle correction, the fibula fixation screw is giving me problem. More like my instincts were telling me I might have issue with that in the future. He explained to me that all the issues I experienced was due to fibula consolidation issues, and removing the screw might displace fibula and cause mis-alignment. But In a way I insisted, and half heartedly he agreed as my lengthening is almost done, and hence less chance of misalignment now. In a couple of hours, after surgery, I woke up and my leg was straight. It was not stuck in 90 degree angle at knee anymore. And no more pain in leg, probably due to pain killers.
By evening I was discharged, so came home with a much better leg, though it was cut open and bone broken on the same day. Surgery cost me $320.
Now I am just taking all the painkillers and antibiotics which he prescribed after surgery. Apart from the possible fibula mal-alignment issue, my leg is in better shape now. I am not sure about ankle movement yet, as it is covered in lot of bandage which is restricting active movement.
My right leg lengthening is completed. I stopped at 5.2cm. I started my left leg lengthening again today. Need to still lengthen 7mm, which includes the 5 mm I went back before surgery. Still 1 more week to go. By then I need to practice and be able to stand straight for X-Rays to finalize my leg angle and length. Doctor has asked me to go till 6cm if needed, but I said I am not interested in that. I cannot be in frames for that long. I have to be off this frames by December or January, and walking without aid by february. Just hoping I can achieve that.
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That is true. Dr Talwar is the head of the orthopedics department at Rockland so it's considered his team, but the main surgeon doing the Ilizarov surgery at Rockland is Dr Rajesh Verma. http://www.hbgmedicalassistance.com/doc-details.php?did=275
He's the one who I did my first consultation with. It's true that they prefer monorails, and they prefer externals, but they will use classic frames if you go with LON. They're now offering Precice for femurs too.
Dr. Verma seems to be a spine surgery specialist. Limb lengthening is not even his focus area. He just has interest in limb lengthening. Its his hobby same like stamp collection or coin collection for regular kids. Dr. Talwar has good credentials, but if he is not doing the surgery personally, then we should not even talk about his credentials. We should be talking about Dr. Verma's credentials. And he has none in limb lengthening.
But personally, I rate his team way better than Dr. Sarin or Dr. Sringari, who both are not specialists in limb lengthening too. If not for anything else, Dr. Talwar will supervise the surgery at least to maintain his reputation. And he is a reputed doctor in Delhi.
There was one teenage girl who came to meet me with her parents. In fact Dr. Dhawan has sent her to me, to get a hint of what she will go through during lengthening. She was really short, around 4'5", and had height neurosis, and was ruining her social life by isolating herself from her friends and cousins due to height issues. I felt she really needed LL. But she was freaked out looking at my frames, and I couldn't even explain the look on her parent's face. They were actually imagining their daughter in those frames and were very worried. I personally did not like to put such a young girl through such a gruesome process. So, I showed them some monorail pics on google, and asked them to have a second opinion by consulting Dr. Talwar. Though I do not prefer monorails, they are less cumbersome, and might be better for her. They called me later and felt Dr. Talwar and his team is more professional than Dr.Dhawan. But the only concern I had was, he guaranteed them 3 inches gain atleast. Dr Dhawan assured them more than 2 inches depending on her muscle capacity. After looking at that girl, I am worried if she can handle that. She is very young, may be 16, she tried HGH too, but her growth plates fused recently, and her legs are really short. Her tibia looked not more than a feet long. I am not sure if her muscles will stretch that long. So, I advised them to take it slow, first make her do a lot of stretching for one year, and then go for surgery. They were planning to appoint a personal physio therapist for her stretching (Yea.. They seem to be rich). Never heard from them again, but I hope she will be fine..
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How are you doing these days, Phoenix?
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Hi y'all,
Just to further my comments on doctor Dhawan. He also stated that he does not recommend LON or LATN as let me quote here 'I do not recommend lengthening over nail as nail insertion effects the bone healing'.
He suggested that inserting a nail would inhibit the healing of the bone. Which from what I have read from other Dr's (such as Dr Paley) is and not true and they even say it was bad science. This is where I lost all faith in him. He probably was trying to hood wink me into the costly equipment and overpaying for less. As he walked in through the chaos with his Prada bag, I think probably that's true.
You do describe the situation well Phoenix. I understand you are of Indian (decent) and you are used to 'conditions' but even for Indian standards the situation is pretty bleak. You say the modern equipment is in another building. Well I was shown the single rooms (he recommended the shared rooms for the £11,000 price) and they were in the middle of the chaos. No one could possibly recover well in that environment. It's an absolute mad house.
Maybe if you had a super human 'Indian' immune system you might escape but If you are not used to it you have no chance. And pray to god a really bad complication came up, I wouldn't trust them to tie my shoe lace.
'Renovations' is too generous. This is regular men with circular saws sitting cross legged on the floor, sparks flying everywhere as women, children and extremely ill patients are inches away. I kid you not. Doors hanging off, smells from the toilets, flys, you name it. The hospital is not up to scratch. No sugar coating it. Sorry. The chances of something going wrong is too high.
There are decent hospitals in India. This is not one. Politicians would often go to the 'peoples hospital' to show that they have the common touch. But I'm pretty sure they would be away somewhere else as soon everyone stopped looking. This hospital is used by millions and is over capacity about 20 times over and so would surely be a vote winner.
I noticed this though. I believe the Dr Dhawan 'might' do the surgery well. But he has already cut out any sort of care. This is how these LL guest house places start. He's shooting himself in the foot. Just pay slight more for a better hospital around the corner. It would only be few extra laks!! But this Delhi mentally seems to blind everyone. It's totally stupid. We are westerners yes, but we're not stupid. We want the going rate in India for the service. We have google. We know how much everything costs. We know the standards we can get. We won't go okay, take my money, break my legs and I'll cross my fingers. If someone is going to try and blag you, there is ZERO chance I can trust him to fix complications or administer the correct level of care when I can only drag myself a few feet. And we will inform other people which will stop people coming. It is so silly.
The Indian doctor works the same as the Indian Hotel manager, he'll try and get a kick back for anything. Dr Dhawan wanted one for a Sim card! Which is maybe the way it's done in India but it seems so strange to me.
If he paid the rate of a decent hospital, provided the latest information and a detailed price. People would literally flock to him.
This is why India is a totally NO from the options and doctors available. Go to Russia people. They are at least sanitary. The hospitals are correctly maintained and have enforced standards. You won't be stepping over people or praying you don't get Osteomyelitis. (Still not perfect though)
Delhi is a desperate place at the minute. Crime Levels are really bad and outlook of most people there is totally warped. Women are treated so badly. It's a scary place to be if you are a woman or a westerner. Even to walk the streets. Don't go there is my opinion. Mumbai seemed a lot better but the standards are same and there are no real options you should take.
You are really spot on with what you say again though Phoenix. I think you know how it runs in India but I don't its a place for westerners at the minute... if I can say it... white people in particular can go. You'll have to fight to get anyone to do anything and if you start paying over the odds then your troubles really will start. Not to be too down on it, it is definitely on the up though........ the plane I left on was absolutely fantastic!! :)
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Hey phoenix,
Can you private message me as well. I am basically wanting to follow your exact path with the same Dr. and same living arrangements, as well as same maid haha. I have a few questions for you though:
Did you obtain Medical Visa before entering India or after entering India. Right now I am having a hard time finding hospitals to write me a letter of intent which is needed before you can get your medical Visa.
Like you I also want to travel to india and scope things out before I actually get the treatment work done, so I am wondering if you got your Medical Visa after you consulted with the Doctors in person or if all you were able to get the letter from your home country before hand.
Any information will help. Thank you.
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I am doing my lengthening with doctor Dhawan, and I staying with Phoenix, and everything is going fine. I had the surgery done, and I am walking. I start growing in 4 days, and phoenix has been like a brother to me. Its unfortunaite that it didn't work out while you were here.
I am from US, in particular Palo Alto, CA, so Stanford Medical hospital, which is a research hospital was my hospital. So I for the last 5 years I was using probably one of the top 5 hospitals in the entire world. The hospital has like 40 complexes spread all across Stanford Universities campus. It truly a sight to be hold.
In my personal experience, I believe the India philosophy towards medical is better, and has less fraud when looking at the system as a whole. I believe I will heal better with the medications and physio here than I would in the US because doctors here are prescribing vitamins, supplements, and drugs for their limb lengthening patients. In the US, if a doctor prescribes anything other than a drug they risk their job, blow back from pharmacutical companies, and risk being sued. I am going to hire a physical therapist to come to my house everyday, so I won't even have to leave my Airbnb. Oh yeah and its 10.00 usd to have a physical therapist come to my house. I plan on doing the exact same physical therapy recommended on paley's website. A physical therapy session at Dr. Paley's place is $220.00 per session. I can also higher help here, and pay him 2 dollars per hour, vs in the states on Paley's website hired help is 18.00 dollars an hour..
Don't get confused now, and don't be naive. American doctors are fully capable of "hood winking," as you called it their patients. More than a lot of people would imagine, because they have a lot of external pressures, from pharmaceutical companies, insurance companies, and the private equity firm that backed their initial start up costs, assuming the doctor opened his practice.
Americans and in this case, american doctors are just better at deceit, and can look you in the eye, smile and nod when they lie, so I do agree that their is a level of mistrust I experience here with people. People are mostly the same. Do Americans lie less, thats the reason they seem so genuine, or are they just better liars.
As far as being an absolute mad house you are right. But you are wrong when you say that you can't recover in the hospital your wrong. I did, and I was only in the hospital for 4 days. When I was their I always wore my protective air mask into the hospital. As well as when I went any where. I also brought with me to the hospital my air purifier, so I was breathing the freshest air in Delhi haha Yeah in US hospitals you don't have to take such precautions, but who cares they only cost me 50.00 usd for the precautions, and I was fine.
I do agree with some of the last part of the of what you said about Delhi, but dude walk around Detroit, baltimore, Compton, or South side bronx at night. You think the crime in Delhi is that bad its really not. Here people don't carry guns. In the inner cities, you have crack heads carrying pistols. Organized crime at the highest levels.
I do agree, he could provide detailed information before hand. They do after the fact though, and I was able to get through the whole process with only paying 10,500 usd. With LON.
One last thing. Women are treated badly, and its not safe for them, but most all know how progressive things are in the States, and like US guys for that. The first week I was here, I had sex with two indians, and one more before I lengthened, So I think India is a perfect place for White American guys:)
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Looking forward to do my future surgery with this doctor. How long before you can walk without support? Thinking of doing 7.5 cm or 3 inches
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Sorry guys, I did not update my experience on this thread from over 6 months now. But I kept replying to my private messages as much as I can, and still chatting with few LLers from this forum.
My consolidation is complete now, and the frames are removed on March 17th, 2016. I am very glad that at last the frames are off. Doctor took measurements and a cast of my legs yesterday. They will give me a custom-made brace tomorrow to put on my legs when ever I walk for some support. I will start walking tomorrow with the braces, he asked me not to walk without braces for next 6 weeks or till I am completely confident.
I currently have a temporary cast on my legs, but I saw my legs without frames yesterday when they were taking measurements for new braces. My legs looked ridiculously straight, like someone has drawn a straight line with a ruler. Also due to muscle loss, my legs look very thin. Scars are very small, not a big deal. I might consider scar removal in future for a couple of scars, but I wouldn’t worry much either way.
My task for the next couple of months is to do a lot of physiotherapy, build muscle on legs, and a lot of walking. I am planning to go back to my regular life only when my walking style is normal. So, I might hang around a couple more months here.
Overall, very happy with the outcome of the surgery till now. I will try to post some videos of my workout with frames in a few days.
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Update on my Consolidation period:
My consolidation period went very smooth, No big issues, not even small infections. I had mostly a normal life ( minus walking obviously) . I live in one of the bed room in a fully furnished 4 BHK apartment with shared kitchen and living room. All the other rooms are occupied by mostly travelers from around the world. So, I got to meet many new people over the time from different countries. Lot of cultural exchange. I was a bit hesitant to show my legs with frames to every new person, so mostly covered my legs with towel when ever i went out into kitchen or living room, but showed them only to a few people who became friends.
All these days I was doing some physio therapy and walking now and then, but rest of the time, I was just watching TV Shows, learning some new stuff, cooking, gym etc. I tried working remotely for a month in august, but I decided to just chill out and spend my time in peace, and concentrate on healing, so I quit.
The whole area is wheelchair accessible, so I can move around freely, cook my food and be active without depending on others. I hate to be dependent, so I took special precautions to be able to manage all my stuff myself though we have helpers a phone call away to assist you in anything. I order all my grocery and other stuff online which is home delivered. We have a gym downstairs, so I used to go there some times and mostly do upper body exercises. In the last couple months I started walking with out zimmer frames or any support, started climbing steps and go upstairs, even did cross walk and treadmill few times in the gym. It is easier than I thought. My legs have good strength to walk right now, and I learnt to walk without support long back, so no worries going forward. I just need to work on the flexibility of my ankle, which has a tendency to go stiff even if I doesn’t walk for a couple of days. I am sure it will be ok once I start walking regularly.
OregonMade from this forum had his surgery recently and living in my apartment. Also sudheer from the forum is here for consultation and possibly surgery in few days. Also, I meet all Dr. Dhawan's would-be patients and help them with any questions about LL, so I met many LLers from the forum and off the forum and happy to do my part contributing to the community.
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Good to know you're doing well. What are your thoughts of Dr Dhawan overall? Anything that could use improvement?
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I got my new leg braces today. Doctor asked me to first start with exercises, then standing, and gradually progress towards walking slowly.
I did some 45 mins of cycling in the gym with the braces without putting lot of weight directly. No pain, it was good, no issues with flexibility. I have enough strength in the leg, but not going to walk anytime sooner.
I am a bit worried when i remove the brace. I am taking lot of care not to put any weight on them, still very afraid of leg bending or fracture. Do not want any issues at this stage, I will not even let a physio therapist touch my legs for next couple of weeks.
I just removed the braces, and about to go to sleep now, and it feels good to be able to sleep with my normal legs, without frames or braces or plasters.
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Thank you for the update phoenix.
You have been on this journey almost 11 months so far. You still have a while to go. If you knew before you started that it would be this much work for 2 inches. Would you do this again.
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Thank you for the update phoenix.
You have been on this journey almost 11 months so far. You still have a while to go. If you knew before you started that it would be this much work for 2 inches. Would you do this again.
People here have a tendency to just look at my height gained, but my main concern was bow legs when I decided to have this surgery.
1 year looks a big deal, but in 1 year, I got my biggest problem fixed (bow leg, which might have led to arthiritis in next few years), achieved something that might as well be my biggest asset (height) going forward, became very strong mentally and got enough time to take many important decisions of my life. If you ask me, this is the most productive year in my life which gave many important tangible results.
If I can go back in time, I will do this all over again.
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Any standing postoperative images and x-rays you can show ?
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Great to hear you're doing well. Keep it up. Would love to see before/after xrays.
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Dear Phoenix,
Happy to see you are doing well :D
your diary has been helpful so far.
Please give us a latest update-
have you started walking and weight bearing?
did TSF frames get comfortable after some time? or did you wish to get rid of the frames because of daily problems?
Also! please tell me if you would recommend Dr. Manish for LL. What are your views about him?
your reply will be highly appreciated. :)
regards,
fightforit
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That's great you're not having any pain. I tried alternating between .75 mm and 1 mm daily and the pain was unbearable for me on the 1 mm days.
So, Kilokahn, if the pain was unbearable on the 1mm days, how was it during the 0.75mm days? And, would I be further protected if I did only 0.7 or 0.667 mm per day?
Time isnt a problem for me, I prefer to have mild pain for a little more days than have bad pain for a lesser number of days.