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[GeTs]

How's the pain ?

[KiloKAHN]

I've got swelling on my left calf and an aching pain when I walk on that foot. My right shin is sensitive to touch. I haven't really experienced any pain due to the distraction itself though.

[PrettyTall]

Easy distraction , rings are quite big ain it ?

[cavani]

hi Kilokahn, how often do you meet with Dr Parihar during lengthening period? 

[BeyondGenetics]

Hi there,

Very informative diary, best of luck in your journey!

I finally wrote my first post on this forum

 

[yudha]

hi kilokahn...i'm new member in this forum, currently saving money for surgery. may be do surgery in the next 1 or 2 years. your experience with exfix will be very valuable for me since i could not afford internal...i have problem with my eczema during winter it is like an allergy which is occur only during winter (i'm south east asian now work in US)...this problem rule me out of russia korea china or any other country with cold  winter season..how about india? is there cold winter in india? also i want to know about electricity in india, last time i read from old forum  there is always power cuts there but its in akola may be mumbai different? could not imagine power cut when it is cold or during hot summer...how about water quality? most patients infection in india probably because of water they use to take a bath or clean pin sites if the source is from a well. 

[yudha]

hi kilokahn...one more question, what kind of medicine dr parihar give to you..any blood thinner? muscle drug? etc.....is 900.000 INR price include any complication surgery (if needed)?

[KiloKAHN]

Update: 7/24/2014
I saw Dr Parihar two days ago to get another batch of x-rays and a check up. I explained to him that lately my left leg has been largely fine, but that all the pain is concentrated on my right leg. It's hard to describe what the pain is like. I think it's similar to a tearing sensation, which goes from the osteotomy site all the way down to the ankle. I also pointed out that where the two wires are closest my knee I have pain surrounding them. If I turn my leg too much inward or too much outward it feels like the bone is being pulled. If I sleep on either of my sides, a ton of pressure builds up there and I have to lie on my back again to prevent from hurting. The pain has made my walking a lot slower, but at least I've been able to put more weight on my left leg due to absence of pain. Dr Parihar saw nothing out of the ordinary with my x-rays and after listening to the problem and testing my knee extension strength he told me to massage the painful areas and also set an ice pack on them.

He said that my x-rays show around 1.2 cm of distraction even though I had turned up to 1.5, but he told me that for the first few mm there typically isn't any distraction when you turn because of resistance. In any case, he would make sure that my goal length is reached and both leg lengths are equal before I leave back to the US. I was also told to change my distraction rate from .75 mm each day to alternating days of 1 mm and .75 mm for the next 10 days. If my body can tolerate that then he would consider having me lengthen 1 mm each day.

After Dr Parihar and Dr Divya saw me, I went down to the first floor and walked to the physiotherapy room where Pratiksha guided me through the exercises again, although this time with less repetitions on my right leg because I couldn't do certain movements without the pain arriving near the pins by my knee. The good news was that she told me she spoke to Divya and they would get me a wheelchair right before I leave for home. Dr Parihar isn't really keen on me using one right now and wants me to gain strength through physio and standing, along with brief walking when I have to do bed to toilet transfers or walk to the elevator when I have to leave the hotel and see him for checkups. The main reason I want one though is so I can just put a blanket over my frames when I go into work each day as my office is next door to a company that hires a bunch of wannabe model types who are judgmental as hell and I don't want them talking if they see me walking in frames to work.

Yesterday I lengthened for 1 mm and didn't notice any pain. But last night I was woken up twice by a sharp pain in my right leg that went from my ankle to just below my knee, and soon after I had an aching pain underneath my right femur again like I had a couple days after surgery. The pain was so intense that I couldn't fall asleep again and walking to the bathroom was the most painful thing so far. For the first time it actually felt like I was walking on a shattered bone. I had to be careful that most of the weight was on my left foot and it took me maybe 5 minutes to reach the toilet just a few feet away. I'm hoping that it's just a temporary reaction to lengthening more than usual. I'm only taking a very light painkiller medication for now and taking it along with a sleeping pill didn't help me sleep for more than a few minutes at a time. Thankfully I brought my PS3 and can play Far Cry 3 to take my mind off things in these moments.

Here's the most recent batch of x-rays.
 

Easy distraction , rings are quite big ain it ?

The rings I have on are of a smaller diameter than usual. Due to my frame and weight he wanted to be sure that I have as much stability as possible, especially because he isn't adding the middle pins until the lengthening period is over. The smaller the diameter of the rings, the more stable the frame.

hi Kilokahn, how often do you meet with Dr Parihar during lengthening period? 

I see him once every 10 days. In between that I stay in communication through e-mail with him or through Whatsapp with Dr Divya.

Hi there,

Very informative diary, best of luck in your journey!

I finally wrote my first post on this forum

 

Thanks, BeyondGenetics.

[KiloKAHN]

This right leg just sucks right now. I can't even do physio on it from the pain and even the lightest step on the floor feels like I'm stepping down with a shattered leg. Dr Parihar said to keep weight off it for a couple days and to let him know if there is no change. Getting to the restroom I now have to lie on my butt and use my arms to scoot myself across the floor. I had a slight misstep with the walker earlier which made me put more weight on my right leg and the pain shot so high that I had to immediately sit down and grasp my leg for a good ten minutes before I could bring myself to lie down. Not sure why the right leg is so crappy and the left leg feels just fine.

[crimsontide]

im not in pain, but because of my ballerina... i do the same thing as you.... exactly

i get out of chair, scoot on my butt, pull myself up, then  go down,etc again.... its quite the process


my leg  hurt a few times, but  i think its normal

[Medium Drink Of Water]

Everyone at the Beijing Institute had what they called a bad leg and a good leg, but I thought it was always a bad leg and a worse leg.  Sometimes peoples' bad legs would improve, and then the other one would become their bad leg.  And the bigger guys always seemed to have more pain, especially in the beginning.

So, Kilo, congratulations on being a normal LLer so far.

[KiloKAHN]

hi kilokahn...i'm new member in this forum, currently saving money for surgery. may be do surgery in the next 1 or 2 years. your experience with exfix will be very valuable for me since i could not afford internal...i have problem with my eczema during winter it is like an allergy which is occur only during winter (i'm south east asian now work in US)...this problem rule me out of russia korea china or any other country with cold  winter season..how about india? is there cold winter in india? also i want to know about electricity in india, last time i read from old forum  there is always power cuts there but its in akola may be mumbai different? could not imagine power cut when it is cold or during hot summer...how about water quality? most patients infection in india probably because of water they use to take a bath or clean pin sites if the source is from a well.

Can't believe I missed this question. Sorry Yudha.

Mumbai is a damp/humid climate and the winter isn't particularly cold. It's around 70 degrees Fahrenheit. Summer hasn't been to bad either. It can get hot but it's not nearly as bad as Delhi heat because it rains a lot. I have yet to experience a power outage since I've been here. That might be more common in Delhi where the heat gets a lot worse. You can't drink the water from the tap here, have to drink bottled. For pin site cleaning you just need to make sure the water is boiled first and you'll be okay even if you use tap water. My hotel room has an electric water heater that boils up the water very fast. I've been boiling up bottled water though because I don't need a lot of it each time I do the pin cleaning and it's easier to just grab the water bottle than go all the way to the restroom for sink water.

hi kilokahn...one more question, what kind of medicine dr parihar give to you..any blood thinner? muscle drug? etc.....is 900.000 INR price include any complication surgery (if needed)?

This is the medication I've taken:

Shelcal (Calcium + vitamin D)
Cefadroxil (antibiotic) - only until suture removal
Ultracet (pain relief) - as needed
Nimesulide (NSAID) - only for 5 days
Zevit (zinc)

The price covers the initial surgery, hospital stay, food while in hospital, physiotherapy sessions, and all follow up x-rays and checkups. It won't cover your first set of x-rays or blood tests, and aside from the first set of medication you get after discharge, you have to pay for any follow up medications they decide you need. You also need to pay for your dressings, which is 500 INR per box. Anything else like a walker, wheelchair, etc will also cost extra. Additional surgery in case of complications are also a separate cost. 

im not in pain, but because of my ballerina... i do the same thing as you.... exactly

i get out of chair, scoot on my butt, pull myself up, then  go down,etc again.... its quite the process

my leg  hurt a few times, but  i think its normal

I've found I get by quicker now by scooting than walking with the shape my right leg is in now.

Everyone at the Beijing Institute had what they called a bad leg and a good leg, but I thought it was always a bad leg and a worse leg.  Sometimes peoples' bad legs would improve, and then the other one would become their bad leg.  And the bigger guys always seemed to have more pain, especially in the beginning.

So, Kilo, congratulations on being a normal LLer so far.

Man this sucks. Funny about the worse leg switching from one to the other. It did that a couple times in my first 10 days post surgery. They never seem to both be equally in pain.

My knees are starting to get sore now too from my legs being stretched out all day.

[KiloKAHN]

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

[Medium Drink Of Water]

That's terrible news.  What sleeping pills and pain medications are they giving you?

[crimsontide]

kilo,   yes, this is how it is

and to be honest, i'm almost 4 months from surgery, and still not comfortable sleeping, though nothing like the first week... that was the worst, i   couldn't imagine how bad it would be until that first night after the surgery

you'll get used to it, but won't like it of course.... i think once the frames off, sleeping largely goes back to normal... i know it's the frames now that are destroying my sleep

[KiloKAHN]

That's terrible news.  What sleeping pills and pain medications are they giving you?

I ran out of the Sumol ER 650 mg tablets for pain relief, which is the lowest level pain killer available. Dr Parihar wanted me to start off easy on the pain relief medication and said he has stuff that can take away the pain completely but I risk harming my liver if I take them for too many days. I have to ask for something stronger next time I see him though, which is probably in three days. I was given Alprazolam for sleep.

kilo,   yes, this is how it is

and to be honest, i'm almost 4 months from surgery, and still not comfortable sleeping, though nothing like the first week... that was the worst, i   couldn't imagine how bad it would be until that first night after the surgery

you'll get used to it, but won't like it of course.... i think once the frames off, sleeping largely goes back to normal... i know it's the frames now that are destroying my sleep

I'm just hoping it gets a lot more tolerable during consolidation. A lot of the discomfort comes from the tearing and pulling sensation I get when I put pressure on any side of the frames.

[crimsontide]

the discomfort from that never goes away, at least for me.... it's the most annoying thing  now for me, other than ballerina

[crimsontide]

and as far as pain.... tramadol is the way to go, as it's intended to be taken a while, if you needed to do so

[KiloKAHN]

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

and as far as pain.... tramadol is the way to go, as it's intended to be taken a while, if you needed to do so

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

[crimsontide]

the scar will look a bit gnarly... but is worn it if it reduces pain.... i have a bolt that seems to have lengthened along with me

[PrettyTall]

Can I go back length home ?

[KiloKAHN]

Dr Parihar doesn't allow patients to lengthen away from Mumbai anymore.

[KiloKAHN]

Another night of mind numbing pain and no sleep. It's 3:20 am and I've been trying to ignore the pain in my left leg that just popped out of nowhere since 10 pm. Judging from this to not even being able to stand anymore, I'd say it's clear my body is not responding well to lengthening. Worst constant pain in my life.

[crimsontide]

kilo... it was bad for me too... really bad... try to endure the next few days... i thought about quitting the first month.... it was insane how bad the pain was

[Classical]

Kilo, I totally know how you feel that this point. About 2 months ago, I was in the exact same situation as you. My first two weeks of lengthening was hell. I felt a combination of skin tearing pain, nerve pain, bone pain, muscle pain... You name it, I've had it. I finally cried one day out of desperation that I am in middle of nowhere - I already spent the money and did the surgery, I can't exactly turn back and say screw this, but I am also only two weeks into lengthening, I cannot fast forward to the end as the end of lengthening seems way too far away to even imagine.  One thing I kept doing was I read everybody's dairy, it made me feel better to know that everyone eventually all complete this hard process despite the unique obstacles they have encountered. The good thing is as we dwell on the present, time is always going forward. Lengthening is a very unpredictable process, same as life, except the events happens ten times faster. You will find situations take unexpected turns before you realize. Turning 0.75 should help you a lot with pain. Right after I started turning 0.75, the pain all of the sudden became non existing. In term go sleeping, I think it's not just a matter of taking pain killer or sleeping meds. Sleep can be a mental thing. Once you had several episodes of bad experiences, your mental becomes anxious when you try to sleep. Of course the more anxious you get, the harder it is for you to fall asleep,therefore creates a bad cycle, despite the physical exhaustion. Maybe try to do something to calm your mental? Like eating bananas and drink milk before going to bed as it contains natural potassium, listening to calm music is another way to relax your mental state. Maybe if you do this with a combination of sleeping meds, you will have a easier time to fall asleep? The other thing I do is I try to tell myself that it's OK if I don't fall asleep as I would have nothing to do the next day anyway. When the pressure is off, it's also easier to fall asleep. All of above are just merely my suggestion, you will slowly find what works for you the best 

[KiloKAHN]

kilo... it was bad for me too... really bad... try to endure the next few days... i thought about quitting the first month.... it was insane how bad the pain was

When the pain hits it definitely does make you think "Why the hell did I do this to myself?" at first.

Kilo, I totally know how you feel that this point. About 2 months ago, I was in the exact same situation as you. My first two weeks of lengthening was hell. I felt a combination of skin tearing pain, nerve pain, bone pain, muscle pain... You name it, I've had it. I finally cried one day out of desperation that I am in middle of nowhere - I already spent the money and did the surgery, I can't exactly turn back and say screw this, but I am also only two weeks into lengthening, I cannot fast forward to the end as the end of lengthening seems way too far away to even imagine.  One thing I kept doing was I read everybody's dairy, it made me feel better to know that everyone eventually all complete this hard process despite the unique obstacles they have encountered. The good thing is as we dwell on the present, time is always going forward. Lengthening is a very unpredictable process, same as life, except the events happens ten times faster. You will find situations take unexpected turns before you realize. Turning 0.75 should help you a lot with pain. Right after I started turning 0.75, the pain all of the sudden became non existing. In term go sleeping, I think it's not just a matter of taking pain killer or sleeping meds. Sleep can be a mental thing. Once you had several episodes of bad experiences, your mental becomes anxious when you try to sleep. Of course the more anxious you get, the harder it is for you to fall asleep,therefore creates a bad cycle, despite the physical exhaustion. Maybe try to do something to calm your mental? Like eating bananas and drink milk before going to bed as it contains natural potassium, listening to calm music is another way to relax your mental state. Maybe if you do this with a combination of sleeping meds, you will have a easier time to fall asleep? The other thing I do is I try to tell myself that it's OK if I don't fall asleep as I would have nothing to do the next day anyway. When the pressure is off, it's also easier to fall asleep. All of above are just merely my suggestion, you will slowly find what works for you the best 

Thanks, Classical. I think what caused the pain was alternating the distraction between .75 and 1 mm because the pain didn't get that bad until I introduced 1 mm days. I think it's primarily nerve pain because it was almost like a burning sensation. Listening to music helped so thanks for that suggestion.

I was delivered an NSAID called Voveran SR last night along with an antacid called Rantac. It took a while to help because I got this burning on my right leg last night and couldn't sleep no matter what, so I sat down on the edge of the bed and rested my head on my walker. I fell asleep doing that and when I woke up in the morning I didn't have any pain. It still pops up from time to time but it's a lot more manageable now. My stepdad called me and suggested I ask Dr Parihar for some cortisone injections but I'm not sure if it helps with this kind of pain. I have to ask Dr Parihar if he ever uses them on patients for pain relief.

[crimsontide]

 in the beginning, i died to do 1 mm, after doing 75 mm a while.. i didn't think there would much of a difference, as i did not experience any pain while doing .75 a day....


the night i did 1 mm, i was very uncomfortable, and had to take a lot of pain meds.... there was a huge difference in how i felt

[mediocre]

I totally missed your LL Kilo, I need to read this entire thread.

Meanwhile, all the best and hopefully less (or no) pain for the coming future.

[yudha]

hi KILOKAHN here me again....glad you had a good sleep for awhile, i read WANNABEGIANTS diary he is doing with dr bagirov, i noticed that he get blood thinner prescribed by the dr for cheap (as he wrote)...from information on internet blood cloth is one of most dangerous complication that can occur with this kind of surgery as it can caused deep vein trombosys. have you discuss this with dr mangal? want to know why he doesnt prescribed this to you..may be he has another reason though....secondly, i have a bow leg (not too much) which may limited my option to external only since the bowing would cause difficulty to insert the nail and also i have rotational deformity on my leg (my foot face outward when my knee sees the front). so my option is only india due to weather and cost. i only 160cm height so doing surgery with hexapod is the best option i think...it could fix the bow and rotation in the same time i could lengthen....i tank you very much for your contribution in this forum. my question is about dr suhas shah with hexapod...you write that he doesn't use hexapod to fix problem at the end of distraction like dr mangal and dr dhawan, is this mean that he doesn't perform any surgery using hexapod?

[KiloKAHN]

I totally missed your LL Kilo, I need to read this entire thread.

Meanwhile, all the best and hopefully less (or no) pain for the coming future.

Thanks, Mediocre. Better late than never, right? 

hi KILOKAHN here me again....glad you had a good sleep for awhile, i read WANNABEGIANTS diary he is doing with dr bagirov, i noticed that he get blood thinner prescribed by the dr for cheap (as he wrote)...from information on internet blood cloth is one of most dangerous complication that can occur with this kind of surgery as it can caused deep vein trombosys. have you discuss this with dr mangal? want to know why he doesnt prescribed this to you..may be he has another reason though....secondly, i have a bow leg (not too much) which may limited my option to external only since the bowing would cause difficulty to insert the nail and also i have rotational deformity on my leg (my foot face outward when my knee sees the front). so my option is only india due to weather and cost. i only 160cm height so doing surgery with hexapod is the best option i think...it could fix the bow and rotation in the same time i could lengthen....i tank you very much for your contribution in this forum. my question is about dr suhas shah with hexapod...you write that he doesn't use hexapod to fix problem at the end of distraction like dr mangal and dr dhawan, is this mean that he doesn't perform any surgery using hexapod?

That's a good question. I never asked Dr Parihar about blood thinners or the deep vein thrombosis risk. I had so many questions that I often forget to ask certain things. I have my next check up with him in a few days so I'll be sure to ask him about that and report it back here.

I don't believe Dr Shah uses the hexapod at all. Not only did he say he would only use the regular frame and not the hexapod, but during my consultation with Dr Dhawan he told me that Dr Shah doesn't use the hexapod device so if I did exfix then either himself or Dr Parihar would be the ones to consider. On the other hand, Dr Shah will do Precice lengthening and Dr Dhawan won't so he's a possible internal option for those considering it. Dr Shah does deformity corrections also though so I'm sure he's got ways of doing it without using the hexapod.

[mediocre]

What a very comprehensive account! Lots of info here for those eyeing India.

Who do you think is the most viable alternative for Precice in India which would be significantly cheaper than Dr Franz (eg 10K less)?

Thanks.