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

Out of all responses from the meetings I think Doctor Shah looks like best choice. He does the releases like Paley and he is the only one who does the plate fixation. Looks like he has the most experience too.

I would like to know more about number 10, can anyone describe the necessity/benefit?

As you all can see from the topic title, I had decided to do surgery with Dr Mangal Parihar at Mangal Anand Center for Limb Lengthening & Reconstruction. It wasn't easy choosing a surgeon as I met more than a couple good ones, and my ultimate decision came after a full weekend of thinking it over. Despite choosing Dr Parihar, I would have felt safe with a couple of the other surgeons as well, so for those considering India I think it would be a good idea to meet them too and not just use my patient experience as your basis for choosing a surgeon. You might actually find one of the other ones better for you in terms of personality, CLL methods they offer, location, budget, etc. However, I do think I made the best choice for me and have high hopes for a positive outcome in all this.

Initially I was planning to do plate fixation and did not like the idea of spending so many months wearing frames. But after talking it over with Dr Parihar and Dr Divya, I changed my mind and decided to go with exfix only. If someone decides to go with Dr Shah or Dr Dhawan, perhaps then we'll have a patient experience regarding plate fixation. After being in frames for a bit now, I think I can tolerate wearing these for the time required.

Now on to what I guess would be the official start of my patient experience.

Visa Extension Troubles
A very annoying part of my CLL quest in India was being able to extend my visa. When I originally applied for a medical visa, Rockland Hospital in New Delhi had sponsored it. I was told that because tourist visas cannot be extended or changed, it would be far less of a hassle to just come on a medical visa and extend that if necessary. I came to India under the impression that although Rockland was on my visa, I wouldn’t be beholden to them if I decided that I would like treatment from a different doctor. Of course, if I had come to India right after I received it back in the mail, then I wouldn’t have needed an extension as they’re typically granted for just a day under 6 months. Unfortunately, the date of issuance was January 27 and I was unable to get free from work until mid June. This meant that as of my arrival in India, I only had a month and a half left.

When I finally decided on having treatment with Dr Parihar, he had a doctor downstairs submit my documents to Airtel so I could get a sim card and had another person escort me the following day to the FRRO to get my visa extended. The trip there was about 20 minutes by taxi and the one who escorted me was unable to go with me through the checkpoint (which was guarded by a soldier wielding an assault rifle). I climbed to the third floor, noticing that Pakistani nationals had their own special section to register on the second floor, and waited in line a good while before I reached the front desk. I informed the woman that I wanted to extend my medical visa and was told to go to a room on the side to make copies of my documents. After making copies, the lady took them and disappeared for a bit before coming out with a document which said I did not need to register because my visa was issued for a duration of less than 6 months. I looked at her bewildered and told her that the reason I came to the FRRO was to extend my Visa by three months (I even had a letter from Dr Parihar explaining everything). She gave me my passport and simply told me that I was endorsed by Rockland Hospital in Delhi so they could not extend my stay in Mumbai. All I could do was go back to Delhi and see the FRRO with an extension request from Rockland Hospital.

Now obviously if I was not planning to get treated by Rockland Hospital, there would be no reason for them to go through the trouble to register me. I was screwed and it looked like the only thing I could do was return to the States and wait for my visa to expire before applying once again with a letter from Dr Parihar to the Indian Embassy. I went back to Dr Parihar’s office and explained the situation. He went to the immigration bureau website and pulled up an e-mail address that he wrote to, asking if officers have some discretion in situations such as mine because he already accepted me as a patient and it would just be needless expense, time, and trouble for a genuine case to go back to the US just to apply all over again. He explained that he was an honorary surgeon at the Nagpata Police Hospital, so the guys at FRRO should be familiar with him and not to worry about it.

When I got back to my hotel I wrote to Cox and Kings Global Services for advice on what to do and in the morning they just said I had to follow the FRRO’s rules. I was about to start browsing flights back home when I was forwarded a message sent to Dr Parihar from the e-mail he wrote to, which said to have me see the chief of police at the registration branch to re-examine my case. When I went back to the FRRO a second time and showed that e-mail along with the other necessary documents, the same lady at the front desk didn’t even have me see the chief of police, but instead took my blood reports from Mangal Anand Hospital and directed me to a room where I was to wait for an agent. After some questions about what exactly my medical problem was and where I was staying, I was given an extension until October 27, effectively giving me more than four months in India. I think that lady at the desk may have been spoken to or something, but it was good to not have to fly all the way back to the States before treatment.

Checking into Mangal Anand Center for Limb Lengthening & Reconstruction
I was picked up at my hotel by a driver sent from Mangal Anand at around 9:30 pm and told to go to the first floor, where I would be taken to my room. I took room number 23, the first room on the first floor (which was actually the second floor but the first is called ground), and was approached by a nurse who had me sign a consent form and other paperwork agreeing to the surgery. She had me step on the scale and I saw that I had lost 9 lbs since arriving in India. No doubt I’d be losing even more weight in the coming months, both from lack of appetite and muscle atrophy.  I unpacked some things from my suitcase and watched some Lord of the Rings: Two Towers on the tv, which had good cable access with a decent amount of English channels, one of which played movies all day. The room I was in had a large fan on the ceiling, an air conditioner, an extra bed, and its own restroom, so it was quite roomy.

Once my movie watching was over I entered the restroom and shaved my tibias, which took forever because I only had a single Gilette razor and no shaving cream. What worked the fastest was putting my foot in a bucket, filling it with water, and using the bucket water from the sink to continuously add lubricant for the razor. I tried to go to sleep afterwards but I was too anxious and slept maybe 20 minutes before being woken up at 8:30 and connected hands and feet with some tubes that acted like suction cups on my skin. One of the assistant surgeons came in afterward and told me to step out so he could take pictures of my legs from various angles. After that, Dr Divya came to stand next to me for a picture that I assume will be used as a “before and after” photo. I was then taken to Divya’s office to use his wifi so I could forward e-mail attachments from my banker to Dr Parihar, confirming that my payment had been wired. Divya told me then that the surgery would take around 6 hours and rather than be put under general anesthesia I would just be given an epidural that would make me numb from the waist down. I spoke to my parents a brief moment on Dr Parihar’s cell phone to inform them that I was about to enter surgery and then went back to my room to wait for the anesthesiologist to arrive.

Regarding Payment
Something I should mention that’s very important is how you should make payment to your chosen surgeon. The easiest way is through a wire transfer, but most banks will require you to make the wire transfer in person because they need your signature on the transfer request witnessed by a banker. Most likely you won’t want to transfer any money to a doctor before you go to India and meet him yourself. If you are still ‘doctor shopping’, then you definitely wouldn’t be in a position to transfer money before you leave for India.

The best way to get around this is to set up a joint account with a person you really trust, probably one of your parents. That joint account should be accessible online along with your checking account and whatever other account you may have. Once you’re sure you want to initiate the wire transfer, just transfer online the payment from your checking or wherever that money is stored to that joint account you set up (the transfer will show immediately), then send the doctor’s bank details to the other person on  your joint account. That person can then go to the bank in the States for you and transfer the money to your doctor on your behalf. This is the simplest and fastest way I’ve found to make the payment.

Surgery
I walked into the Operating Theater and sat on a medical table in the center of the room, which was clean and had all the equipment you’d find in any OT I presume. It all looked modern and that relaxed me considerably. As all the medical assistants entered the room, Divya had me scroll through his iPod to choose background music. I decided to put on a classical playlist as I thought it would have the best ambiance. One of the operating assistants then put the needle for the IV into the top of my right hand, which stung a bit but wasn't bad. The worst part of the whole surgery came next, which was placement of the epidural. It was like a xenomorph from the Aliens series pierced my back with its tail and started squirming it up my spine. Aside from the initial stinging sensation, the worst part was the constant throbbing on my lower back in the side regions. The throbbing was similar to a throbbing toothache, just in your back, and the pressure felt like a hole was going to burst open. After a few minutes I was unable to feel anything at all from the waist down and I imagined I knew what a paraplegic feels like, or perhaps a tarantula after getting paralyzed by a tarantula hawk. The heaviness of my body was a little unnerving and my imagination raced (what if I had gotten this done on a boat and it started to sink right after? I’d be screwed!) but my concentration soon went on my legs being bent in the air and contorted to various angles as they were covered in Povidone-Iodine. I had something on my waist so I couldn’t see exactly what they were doing, but I saw them maneuver the catheter tube and knew they had put that in already. At that point I was thankful for the epidural.

Dr Parihar arrived not long after and asked me if I had chosen the music playing in the room. I hadn’t realized it but it had switched to Italian opera. “I told Divya that classical music was fine” “Yes but this is way too classical” said Dr Parihar as he switched it to music that was symphony and not opera. I dozed off for a little bit from lack of sleep and woke up with Divya asking me if I was tired. I could see one of my legs being cut into by Dr Parihar from a reflection on the wall to the right of me and looked at it out of curiosity a bit before falling asleep again until I was woken up and told by Dr Parihar that the surgery was over. I then moved onto a gurney and was maneuvered to another room where I was to spend the rest of the day. I fell in and out of sleep until a woman came and told me that she was the physiotherapist. She explained the different exercises to me and had me perform them. Every 30 minutes or so I was supposed to move my ankle up and hold it there for five seconds before moving it down and holing it there for five seconds. This was to be done on each leg for a set of 10. I had to do the same reps and sets for raising my legs in the air and moving my knee toward me. My left leg was unable to move at all but my right leg was fine for some reason.

Divya, Sister Molly (a very nice nurse and one of the operating assistants), and another operating assistant named Sumanyu came in to see me. They said I could have a sandwich if I was starving but said I should just drink liquids and start with light foods the next day, which was fine by me as I didn’t feel like eating. When I woke up again I had three slices of bread and a cup of water. A different physiotherapist came during the day and showed me some other exercises. Basically just tightening my knee on each leg for five seconds and releasing, moving my leg up and to the side, and back raises to help with the back pain from laying so much. After a few hours Sister Molly ordered me fried rice with chicken and egg inside from a nearby restaurant. I told her I could eat anything as long as it wasn’t spicy (non-spicy food was pretty limited up to this point) but I was pleasantly surprised at how good and non-spicy the rice was when it arrived. I hadn’t any pain as my body was still numb, which made doing the exercises very easy.  So I did them for a while until I went back to sleep.

Photos (Click to Enlarge)

I'm glad you chose Dr. Parihar.  He's the one I would've picked too after reading your consultation summaries, specifically because of his thoughts on fibula fixation, not doing releases unless necessary, and hexapod fixation to correct misalignment.

The hospital doesn't look like anything fancy, but it seems clean and nice enough.  It's about on par with what we had in Beijing, maybe a little better especially the bathroom.  After getting used to Guang Ji Hospital I now think most western hospitals are too luxurious to the point of being overkill and a waste of money.

Thanks on behalf of the LL community for being a pioneer in India and writing this detailed diary, and thanks on my personal behalf because I'm having fun reading your diary and imagining I'm there.  LL is an exciting time in a person's life, and I remember mine fondly, so this brings back good memories.

I hope everything continues to go well for you.  Stay strong and smart through it all.

Congratulations KiloKAHN on beginning your journey, I wish you all the best for your distraction and a speedy recovery! Hopefully, I will be joining your ranks soon. BTW do you plan to stay at Mangal Anand Hospital or move to an apartment nearby? What are the associated costs with everything so far?

First Day Post-Op
The next morning I was wheeled into the room I had checked into originally. A large group of the staff came in with a frosted vanilla cake with cut mango on top and sang me Happy Birthday. I felt okay aside from earlier when I had a brief moment of wifi connection from upstairs. My mom messaged me through the Line app with “How does it feel to be two inches taller on your birthday?” I lost my connection before I could respond that it doesn’t work that way and I had to slowly get to that point over a period of months. Oh well, she’d soon find out.           

One of the nurses scolded me and said I had to drink more liquids because my urine volume was low and also slightly red colored, which meant I had a mild urinary infection, so she came in with a carton of Tropicana juice and a pepsi, saying I had to drink all of it so I would urinate. The first physiotherapist I saw the day before arrived and guided me through exercises, which were pretty hard to do as the post-surgery pain had started and was located entirely on my right leg. I was glad that my left leg was still completely numb. After the exercises she told me that we were going to try and get me walking to the bathroom the next day. I wasn't looking forward to it, not even starting distraction yet and already hating the annoying discomfort of my right leg. It felt like a growing pain that just went on constantly without letting up. A nurse came in and shot some saline into my IV and said it would help with infection. She left and another nurse came in with the same chicken and rice meal I had earlier. They wanted me to get something else from a different menu, meat based in particular, but I wasn’t up for heavy foods. One reason was because I didn’t want to do any number two until I could use the toilet. I refused to let myself ask for a bedpan. Dr Divya and one of Dr Parihar’s fellows came to my room to check on me. We talked a little while about limb lengthening before they left and I fell asleep.

I woke up to a sharp sensation on the bottom of my right femur and a combo of throbbing and aching on the top of my right tibia. I tried to tough it out and ignore it. Hopefully the pain would go away, I thought. But the constant throbbing and aching pain eventually made me cave and I started swearing, calling myself a total f-ing idiot for ever being eager to do this to my body. What made the pain worse was that I had nobody to vent toward and I wished one of my parents would call me just so I could tell them how much pain I was in and how stupid I was for doing this. One of the nurses came in and saw that I had my hands covering my eyes and forehead. She asked if I was in severe pain and brought in a doctor I hadn’t seen before. I described to him what the pain was like and where it was located before he stepped out and came back with a needle, proceeding to give me a shot on the side of my right femur. A short while later the nurse came back and injected tramadol into my IV. The pain started to go down slowly but was severe enough to prevent me from sleeping more than a few minutes at a time.

Second Day Post-Op
I was given three slices of bread and tea in the morning along with a side of pain killer tablets, which I took right away. I managed to fall asleep finally and was woken up by one of the members of the surgical team who came to change my dressings for me. I noticed the right leg was very clean, but when the left dressings came off I saw the leg was covered in dried blood. He told me it was because that leg was operated on first and so the blood accumulated there. After the dressings were off he changed them all and gave me instructions on how to do it on my own in the future. The physio came and had me stand with my walker for support and walk a few steps. At that point, an elderly man stepped into the room and introduced himself. The surgeon who changed my dressings told me that the man was Dr L.M. Parihar, owner of the hospital and Dr Mangal Parihar’s father. L.M. was really nice and told me he wanted to introduce himself because he heard about the FRRO issue I had. He jokingly said “The FRRO didn’t want to register you as a foreigner, so you are Indian now.” But it turned out he worked hard to have the FRRO register me in Mumbai even though I was registered in Delhi. Apparently the change was definitely not typical, so I had a lot to be grateful to him for. After he left I went back to my bed. Divya then came and I told him of the severe pain I had.

Another physio came and had me do exercises. Eventually I called her because I wanted to walk to the toilet to release all the number two I had been holding. The walker was narrow for my body, despite me using the hospital’s larger walker and wearing narrower frames, and every few steps I would accidentally hit them together, which caused intense vibrating pain for a few seconds each time. It was even more difficult to sit down on the toilet and after the physio waited outside the door I had to slide my shorts off while sitting. Cleaning myself and putting the shorts back on was even more difficult, though I still managed it. After I was assisted back to my bed I was so exhausted from going to and from the bathroom that I did much more poorly on my physio than I had the last times, which was apparently very good for only my second day after surgery – they said it was because I had built up a lot of muscle beforehand. While the second physio was still in my room, a third physio who trained in the States came and got information on the exercises I was doing from the physio who assisted me to the restroom. Divya told her beforehand my lengthening goal and I let her know how long I was able to stay in India, and with that information she left to create a physio plan for me for her visits at my hotel after discharge from the hospital.

At night a young guy stepped into the room with my name and room number written down, asking to see me. Dr Parihar hired him to be my attendant and help me with things like getting on and off the bed, fetching me the urine pot, etc. Divya came back with sandals I had purchased earlier and helped the physio tie straps to them to attach to the fixator for helping prevent equinous. The forcing of the 90 degree angle wasn’t as bad as the slight burning sensation at the bottom of me feet from constant pressure of the sandals. Eventually a nurse came with a wheelchair because I told Divya that I’d like to go to the second floor briefly where there was wifi so I could check my mail. There I saw Dr Parihar again who discussed with me the pain I was having and told me they didn’t want to give me too many painkillers but if I was in severe pain to let the nurse know anyway. Got all my mail checking done, saw that only two people on my whole FB friend list sent me happy birthday greetings the other day, and told my computer screen ‘ah fk you guys’ before turning off the computer and returning to my room with the assistance of the guy Dr Parihar hired.

About My Frames
I saw Dr Parihar before surgery so he could let me know what the external fixators would be like. He decided that because of my bulk he would use smaller diameter rings - during surgery he decided to go even smaller than what he showed me and put on 160 mm diameter rings. Due to the small diameter there is some crowding on the side where my leg is close to the frame, but I prevent them from touching using cotton pads slid in between my leg and the frame. There are four wires and two pins at the distal and proximal ends, twelve points where the leg is being pierced with a pin or wire. There are three rings, and the middle rings typically have two pins going through the leg at the middle of the bone. This would make the frames more stable, but then that would also mean more skin tearing and a long scar down the middle during distraction. Because of this he decided to leave off the pins of the middle ring for now. He explained that leaving the middle pins off would allow more microscopic motion in the middle and result in thick callus forming. This might cause some degree of malalignment at the end of lengthening, but if malalignment happens he will replace the rods with hexapod struts and correct the malalignment. After that is fixed, he will replace them with the standard rods and add the two pins at the middle ring for added stability during consolidation.

You can see them in the photos below. I took closeups of all the pinsites, one of which had stuff coming out of it.



Photos

Quote from: Medium Drink Of Water on July 05, 2014, 10:02:51 PMI'm glad you chose Dr. Parihar.  He's the one I would've picked too after reading your consultation summaries, specifically because of his thoughts on fibula fixation, not doing releases unless necessary, and hexapod fixation to correct misalignment.

The hospital doesn't look like anything fancy, but it seems clean and nice enough.  It's about on par with what we had in Beijing, maybe a little better especially the bathroom.  After getting used to Guang Ji Hospital I now think most western hospitals are too luxurious to the point of being overkill and a waste of money.

Thanks on behalf of the LL community for being a pioneer in India and writing this detailed diary, and thanks on my personal behalf because I'm having fun reading your diary and imagining I'm there.  LL is an exciting time in a person's life, and I remember mine fondly, so this brings back good memories.

I hope everything continues to go well for you.  Stay strong and smart through it all.

Dr Parihar has been really cool so far and the hospital itself is more than adequate for what you would need. The staff is attentive and you're never left abandoned while in pain, and that's what was important to me. I think the description of Mangal Anand Hospital in that other diary is way too dramatic about how rundown the place is supposed to be. I mean if you're coming to India you shouldn't expect 5 star scenery anywhere aside from a select few hotels.

Thanks for the well wishes. It helps having a community to write too, especially during the times when the pain gets worse.

Quote from: Converse on July 05, 2014, 11:00:34 PMCongratulations KiloKAHN on beginning your journey, I wish you all the best for your distraction and a speedy recovery! Hopefully, I will be joining your ranks soon. BTW do you plan to stay at Mangal Anand Hospital or move to an apartment nearby? What are the associated costs with everything so far?

Thanks a lot. I don't think you're allowed to stay at the hospital during the entire distraction period. I'm staying at a hotel nearby. They gave me a rate of $48.00 nightly inclusive of tax. Mumbai is the most populated city in India and it would be difficult finding an apartment with the amenities you'd want to be comfortable. The surgery itself is around $15,000, which includes the hospital stay, an attendant during hospital stay, food, and medication during discharge. Other costs just come from flight costs, blood test and x-rays before the surgery, hotel stay, food after discharge, and whatever bills you still have to pay while here.

Beautiful little osteotomy cuts he did there.

good luck kilokhan,
finally you choose doctor mangal parihar.

Third Day Post-Op
Woke up a little late. Sister Molly came and asked if I changed my dressings, which I told her no. A little while later my other assistant that switched places with the first guy in the morning ordered me food from the non-veg menu. As I was eating, Sumanyu came and asked when I would be ready to change my dressings. He returned after I was finished and brought the boiled water with saline and gauze strips with him. I had to change my dressings by myself this time and he gave me verbal instructions on how to do it. I had to wash my hands twice, once before I started changing dressings and once soon after because I touched my hair when it was dangling in front of my face. It took me a little over an hour to clean all my pinsites and change the dressings but I was confident afterwards that I would remember how to do it always after that. A guy came in today and brought in an extra-wide walker that was ordered for me. It easily fit both my frames in the center so I could now walk without accidentally clashing my frames together.

Physio came and had me do exercises and walk around the room a bit. I decided to walk all the way to the toilet and back because I really had to go. I still don’t want anyone bringing in a bedpan for me as long as I’m here. After the physiotherapist left I watched the Brazil vs Chile game with my assistant. I forced myself to walk to the toilet again and by the time I got back in bed my legs were throbbing so much that I wasn’t confident I’d be able to do all that well in physiotherapy the next day. It’s amazing how much energy walking takes out of you while in frames. The only bad part about it is actually walking. Standing doesn’t hurt at all and I could probably do it all day without even touching my walker because the frames are stable enough to take my weight.

6/30/2014
Had physio three times today. Woke up to the assistant’s voice saying “Eleven o’cloooock. Time is eleven.”, which irritated me because one of my pet peeves is being told the time when I wake up. I can't explain it, it's just a quirk I have I guess. I didn't say anything to the guy though. I was supposed to have a sponge bath and he pulled my shorts down while I was staring at the ceiling so he could wash my genital area. I pulled them back up immediately nd told him I could do that area on my own. Some things about this assistant get on my nerves, like his insistence that I scrub soap in my hands in the morning for a full minute despite having my hands covered in soap long before that, or missing the bowl by a good deal and getting water all over me when pouring water into it.

A different physio came in the morning. A quite lovely Indian woman who I’d totally try to pick up if I wasn’t in frames. Didn't think getting my crippled flirt on would be the best thing to do though. Dr Parihar came at the end of the day with Divya and Sumanyu to check up on me and offer encouragement.

7/1/2014
Woke up early today despite getting to bed around 4 am. Got a sponge bath and hair washed then had jam and bread with some tea. Physio came today and after my usual exercises she had me walk outside down the hall and back to my bed. Sumanyu came in and marked my rods with directional arrows and painted the nuts on one side. He explained how I was to turn for distraction and said I told to buy my own turning devices. My assistant was told where to purchase them the following day. Dr Parihar wants me to turn .75 mm per day at .25 mm each turn, spread throughout the day almost evenly. Walking was a lot less painful than usual but my pin sites hurt worse when changing the dressings. I saw that one pin site had gotten crusty stuff hanging out of it. I’m just hoping I don’t get any infections after I go back home.  Got my dirty laundry sent to the cleaners. Twelve pieces for 480 rupees and I should have them at 4:00 pm the next day. The second physiotherapist said I had to drink a lot more water because my urine output was still low. Went to bed at 4 am after watching USA get embarrassed by Belgium in the finals.

7/2/2014
Woke up at 12 o’clock. Sumanyu came with some tools and showed me how to distract. I turned for .25 mm on all the knuts. I was still exhausted after he left so I told the assistant that I wasn’t going to do a sponge bath when he brought out the bucket and towel. Had the standard breakfast of bread and jam with tea (I don’t drink the milk as it gives me stomach problems). Later in the day Dr Divya came and replaced my rods with other ones that have a knob that turns after you click a button and lock after distracting .25 mm. It also has a distraction chart on the rod, so I was happy with the change as it makes distraction a whole lot easier. It made it so I didn't have to purchase any turning devices, so I wouldn't have to remember everything Sumanyu showed me about turning the other way. The new rods also add even more stability to the frame.I started a distraction chart too so I always remember how much I turn. The physiotherapist named Pratiksha came again. Did my exercises and walked out to the hallway today. Talked with her a bit about her career plans and informed her that I would be discharged to a hotel tomorrow. Hopefully she’ll be able to see me in the hotel every once in a while because she's the most talkative and friendly of the group of physios. Only got 9 out of the 12 pieces of laundry today. The place said to come back the next day in the afternoon for them to be finished. Oh well.

Below you can see the new distraction devices that were put on the frames. There are four on each one that I have to turn. You press a button down on the round silver part to unlock it and then turn it to the right until it automatically locks at .25 mm of distraction. This makes recording your distraction amount very easy.

Photos