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Author Topic: Brother - External Tibias - Dr. Xia - 2009 - Following the Beijing trail!  (Read 39605 times)
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brother11
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« on: June 10, 2009, 10:20:34 PM »

hello,

I have had the LL surgery.  It is six days since and I am starting to believe I can make it.  The pain has lessened to just an ache here and there.  I have begun exercising for flexibility and strength.  I hope to get in wheelchair today.  I will begin lengthening Monday, 4 more days.  I will start with a walker Monday also.  Each stage brings me closer to my goal.  My goal is to get back home taller.  This will take some time.  I really miss home.  I did not tell my family what I was going to do, but now I think it is time to tell them.  I want to communicate with home more.  It is solitary in this room 213.  Which I think was Jackolife's room once upon a time.    So far the weekdays are better than the weekends more stuff going on.  I was in recovery over last weekend.  One big blur of pain, sleep, soup, IV, and water.  The staff has been great help to me.  They get me through this rather well.  I glad I came to Beijing for this for me.  I am longing for home though.  Hope to post more good reports soon.

brother11
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SoleBaje
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« Reply #1 on: June 10, 2009, 11:52:48 PM »

Welcome brother! Keep fighting the big fight, the next few weeks will be crucial. In the meantime, could you tell us a bit more about yourself (origin, age, former height, intended height etc)?

Look forward to reading more as the days, weeks and months go by! You're a trooper.

Cheers mate,

Baje
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brother11
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« Reply #2 on: June 11, 2009, 12:05:59 AM »

Hi Baje,

I am 169 cm.  I came to Beijing from the USA.  I can say that I am over 35 years.  The doctors say I can do 7.5 cm of lengthening.  That will make me 177 cm.  I will try.  Thanks for the encouragement.

brother11
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jack0life
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« Reply #3 on: June 11, 2009, 04:07:27 AM »

Put up pictures and your diary will be a good one.
I think I stayed in 5 different rooms so theres a good chance you're in one of my old room  Grin
Good luck and keep us updated.
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Every cm was TORTURE.
Went from 158cm to 166cm in Beijing !!
brother11
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« Reply #4 on: June 11, 2009, 09:43:27 PM »

Six day (after surgery)
I was not having much pain this morning so when the Dr. Zhao (physical therapist) came by I push to do good exercises.  I ate breakfast and washed up quickly so I could try out my new wheelchair.  I was able to be outside for an hour.  I was glad to get out of the room, except I grew tired and went back to bed to rest.  Later Ronne came by to let me use the phone in her office to call home.  So another trip in the wheelchair, but was only able to leave message, then back to bed.  I think I was over active and I have very sore legs.  I have not been sleeping past two nights so I asked nurse for painkiller tramadol and I was able to get 5 hours of sleep.  It is now the morning of the seventh day and I plan to call home around 9:30 to reveal to my family about LL surgery.  This makes me feel anxious because I do not want to upset them.  They must know about this so we can begin daily communications.  I need their support to make it through the next few months.  

I told Ronne how I am feeling and she is very understanding.  Ronne asked if I mind getting a roommate.  I said that would be great. The roommate should arrive around June 20 from Indonesia with English language, so I am hopeful we can become friends.
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« Reply #5 on: June 11, 2009, 09:50:22 PM »

Good luck talking to your family; I hope that they will be understanding.

Lack of sleep is normal - sleep is the hardest thing during LL, and remember to keep your legs straight whenever possible in the wheelchair, as bending your legs for a long time is really bad for you Smiley

Looking forward to your next update - welcome to the Trooper club Smiley
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brother11
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« Reply #6 on: June 12, 2009, 07:11:40 AM »

Day Seven

Woke up feeling aright.  Did the usual routine.  Thermometer under arm a little after 7:00 am then the maid tidy up and bring bath pan.  Dr. Zhao stop in for visit.  He gets someone to adjust the wheelchair to fit my legs because I asked.  There is breakfast at 9:00 am.  This morning I have appointment to use the phone.  This is highlight of day to talk with my family.  Well they did not agree that I need this.  They say, you have gone to extreme.  They did not like the way that I hid it.  But, I think they are going to try and support me through this and get me back home.  Now that's all I want to get back home, and to be taller!

I am not sure what it's going to be like with a roommate especially if they are suffering through recovery for a week like I did.  After that maybe we can help each other keep our mind focus on why we came here and get it done. 

We are all like cable cars here.  Each of us is at a different stage than the other. Some are beginning (like me) and some are in middle, while others are complete and going home.  I always look longingly at the ones that are going home and think that will be me.  There is understanding in every patient's eyes.

There is not much going on for me over the weekend.  I have to exercise and rest to be ready and well for Monday.  Monday is the day my lengthening begins.  I think turning the length each day will be something to get one up in the mornings.  I have a photo of my frames from this morning.  Not sure how to insert the pic yet.

 
 

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« Reply #7 on: June 14, 2009, 01:36:15 PM »

hey brother11, good luck with your LL. I'm sure you will reach your goal, even a little more if you really want. If you are still around there in December, you will meet me because i will come back to get my rods removed.
Until then, take care and good luck  Grin
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« Reply #8 on: June 15, 2009, 08:33:22 AM »

Day 10

First I have to make a correction:  Today is not the day I was to have an x-ray.  The x-ray will be after 1 week of lengthening. 

Today I began the lengthening process.  This involves loosening a lock nut with a wrench and then turning a numbered dial 1 turn, then re-tightening the nut.  That's it.  I have to do 4 turns per day at 2-hour intervals for a week.  I also have to stand up with walker and exercise in place, bending knees back and forth and then several leg pick up and down exercises twice today.  Maybe I walk some tomorrow, not sure.  I have done 4 turns today and I can already feel more tension in my calves. 

I am having some trouble with the food as I regularly get the same couple of dishes over and over.  Breakfast can usually be the same, eggs, bacon, pancakes or omelette even at home.  I am taking (1) Natures Bounty Ultra Man vitamin and (1) 500mg vitamin C supplement each day.  I think I will start taking 2 each this week.  I also begin taking (3) liquid filled calcium tablets today.  For lunch I am mixing (1) glass of milk (I think from a can) with Nutrilite protein powder.  For dinner I alternate between grilled mustard chicken breast and Italian spaghetti bolognaise.  Both dinners have a lot of meat.  This is what I survive on with lots of water.

I am so far trying to stay awake during the day.  This is hard not because I am sleepy, but because I struggle to find things to occupy my mind.  There is (1) English language TV channel which is sometimes entertaining once you gear down into it, but the programming is very repetitive so I can not watch the same segment too many times.  I watch some Internet videos here and there.  I am waiting for my sister to return from her vacation at the beach to hook up my family's computer to skype so I can talk to home more often. 

In the evening around 7:30 pm I take a tramadol and turn everything off and wait for the peace and calm without pain to come over me and I sleep.  I awaken at midnight and swallow some water and drift back into night.  I am up at 5:00 am on the Internet to check email and get my head sorted to tackle the day ahead.  It is living one day at a time here for reals.


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brother11
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« Reply #9 on: June 17, 2009, 08:47:46 AM »

hello,

I met a LL patient today from USA.  Her family is from China and she tell me some of her experience as she has been turning for about 2.4 cm, but actually less on x-ray.  She say she has never had pain and thinks pain is generally less for women.  Today she had x-rays and let me view them.  She was not happy and I could see why.  One leg had gap and fairly visible bone cloud.  The other leg had gap, but no bone cloud.  This is indicating that new bone is not growing.  I asked are you taking calcium.  She said I am taking everything!  We talked about what could be done because here they will fix complications.  It might involve breaking the bone again further down the tibia and when get bone growth push the bone back together where there is no bone growth.  This is very disappointing because it will take much more time to resolve.  She went to have conference with doctor. 

I will have my first x-ray next Monday.  I was wondering if anyone has an estimate of when bone cloud should form following surgery?

brother11
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brother11
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« Reply #10 on: June 17, 2009, 10:21:26 AM »

Hello,

This is picture of my LL frames from day seven.  



brother11
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brother11
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« Reply #11 on: June 22, 2009, 11:11:09 AM »

Day 17

I have been experiencing right much leg pain as I have been lengthening 1 week.  I have turned about 4.669 mm at the time of my x-ray today.  I am posting the x-ray image below.  The doctors say it looks good.  The left leg shows a gap and some bone cloud.  The right leg is showing a little more than a break, no real gap for viewing yet, or bone cloud.  I have to lengthen (4 turns) per day at .667 mm for another week and then have another x-ray of the breaks.  So far things are good.  



BTW – I also had to have x-legs correction during the operation.  

brother11


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« Reply #12 on: June 23, 2009, 02:55:45 AM »

I just got my bandages off today and can post the pin sites.  Most of them look fairly good, but one is still a little tender.

brother11
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brother11
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« Reply #13 on: June 23, 2009, 10:22:56 PM »



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« Reply #14 on: June 23, 2009, 10:41:03 PM »

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brother11
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« Reply #15 on: June 23, 2009, 10:47:57 PM »

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« Reply #16 on: June 24, 2009, 04:05:59 PM »

MMT and other vets, can you believe now I can honestly say that those days with the frame on my legs with pain and blood, were actually fun and enjoyable? EVery time i think about the journey i have gone through to be taller like today, I keep smiling... honestly. I can still remember the pain ,the sleepless nights, the scary thoughts that my nerves might get damaged. But above all these, the fun, the joy with all the people there, both patients and staff, really made me feel it was like a good dream.
Bro11, hope that your LL will be almost pain free and full of joy as mine.
All the best...
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« Reply #17 on: June 25, 2009, 12:02:33 AM »

MMT and other vets, can you believe now I can honestly say that those days with the frame on my legs with pain and blood, were actually fun and enjoyable?

Yep, I can believe it! My time in Beijing was one of the most enjoyable in my life!
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« Reply #18 on: June 27, 2009, 04:41:32 PM »

Brother11,

Hope you’re doing well. I’m preparing to go to Beijing soon. If you have some time can you, or anyone who had LL done at Beijing, help answer few questions for me.

Can you receive mail and packages at the hospital? If so can you give me the hospital’s address and phone number?

At this time, are patients sharing rooms or does each patient get their own room?

How difficult is it to use the bathroom, i.e. washing your face, doing number 2…etc?

Speaking of number 2, how do you go number 2 the days / the week following surgery when you’re bedridden?

Thanks!
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« Reply #19 on: June 28, 2009, 01:45:39 PM »

Brother11,

Hope you’re doing well. I’m preparing to go to Beijing soon. If you have some time can you, or anyone who had LL done at Beijing, help answer few questions for me.

You'll find it useful to read the diaries of the patients who were treated in Beijing - my diary answers all of these questions and more! Cheers, MMT
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