LL at Acibadem hospital in Istanbul, Turkey

Firstly I would like to give some background. I travelled to Turkey to have lower leg lengthening. My operation was on 20th June.

To anybody who is considering LL, please read through as much of my diary as you can. I will try to keep it as concise and relevant as possible. Please ask questions at your pleasure.

To anybody who has either finished or is going through this procedure, your tips, suggestions or moral support will be infinitely appreciated.

I am mostly in isolation now as I am in a hotel, and very few people here speak English. Coming to this forum has restored a great deal of sanity and whilst i am a reserved and private person, sharing my story is probably the best thing i can do for others.

I am currently at a stage where homesickness (i am from the uk) is strong, but i am nowhere near the finish line. I haven't told my family about the operation either because of the embarrassment due to the stigma surrounding this surgery.

I have some tips for those of you considering LL.

1. You MUST be very, very strong willed. Maybe, you will have a smooth journey (but that is rare) and even then you will experience pain. However, if you hit some obstacles along the way, you may discover what pain really is. You should be prepared for this
2. Do not box yourself into an ideal timeframe as i have done. Add some time for problems. If you plan to do 3inches (at 1mm per day) give yourself 4 months instead of 3, etc. Etc. You will be less disappointed if you have to temporarily stop lengthening.
3. I would suggest documenting exactly how you feel about your height. Perhaps keep some photos of how short you are compared to everyone else. Maybe write down how it makes you feel. Perhaps keep the messages of the girl who rejected you because your height was too short. Not only will this help to prove your psychological reasons for needing LL, it will help YOU. You will need these reminders because at some point during the LL process you WILL question if all of this is really worth the torture and hell you are putting yourself through.
4. Don't give up. Where there is a will there is a way. You can gather the money even if it runs you bankrupt like me. But just make sure you want it bad enough. And do your research on the surgeon, the hospital, your living conditions etc. Try not to pay in advance of knowing exactly what your getting.
5. In the mean time, spend time improving your flexibility, in your knees and ankles. It'll help so much but has to be done at least 6 months before you have the surgery. I wish i had known. Additionally, build as much leg muscle as you can. This again needs to be done well in advance of your operation.

Oh and lastly, kiss goodnight to your solid comfortable naps. You won't be getting any of those with these hideous and bulky frames. Maybe you will, but I certainly haven't. At so many points i've wanted to turn around and go home. But the following words by Lance Armstrong have encouraged me.

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever."

And certainly in my case as I doubt i'll  have the time or the money for this procedure ever again. So the lengthening continues, despite the pain.

I'm going to post up what i've written so far. If anyone's interested in reading more let me know and I'll continue.

So my diary begins:

Monday night. Day one, i have spoken with the doctor who will lead the surgery and he has explained the procedures. i am happy to proceed. It's very scary for me because he has made me aware of the complications with this surgery.

Tuesday morning i am given a tablet to protect the lining of my stomach (im ablut to be pumped with some serious medication). The second tablet given to me is to prepare me for anesthetiser. I soon close my eyes and wake up late that night. I have been placed in intensive care as a precautionary measure. It took 4 hours to break both bones and insert rods plus frames. This will be a lengthening over nail (LON) LL.

Tuesday night i am still not allowed to eat until the morning as the doctor warns the food will not stay down. 

Wednesday morning, i try to eat but my appetite is low. The doctors visit me and tell me i should stay in the hospital for a week. The pain is very high however the painkillers help me a lot. I have lost a lot of blood so a second blood transfusion is given to me. I cannot stress the amount of pain or the feeling of hopelessness that you will never walk again. The doctors ensure everything is normal and i am making good progress.

On Wednesday evening with the help of the physio i attempt to stand. VERY DIFFICULT and so painful. But this is progress as i have put my feet on the floor.

Thursday i am able to stand for 5 to 10 seconds with the aid of a walker. It is not a painless procedure, every movement so far has been painful and so i have lost muscle and strength because i have avoided movement. Physio gives me some exercises to do whilst in bed.

Friday
I am encouraged to stand again with the aid of a walker. I still cannot move my legs even though i am standing. After this, the physio places electronic pads on my thighs and i am given 20 minutes with the device. After the pads are removed and i am encouraged to do tensing exercises.


Saturday
First time i have needed to let my bowels loose. I am incredibly anxious as to how this will be achieved.i can only imagine the pain i will go through. Surprisingly the entire procedure is almost effortless. The nurses lower the bed to chair level and lift me from bed to chair. The chair is like a wheelchair but with a whole in it and a bag underneath. Once i am done i am lifted back onto my bed.

I also managed to take a little step during physio. It's so easy to take mobility for granted before the operation.


Sunday

During physio i manage 5 steps with both feet during first session and after a short break i manage another 3 with both feet. All of this with the walker. I am nowhere near using crutches but i hope soon i will be able to.

I also need to let my bowels loose again, i think it is becoming more and more frequent now because i have regained my appetite. Initially i was eating so little that apart from urinating i never needed the toilet for almost one week.

Monday to thursday:
I am able to use the walker to get to the toilet. However I am simultaneously assisted by the physio team. As each day passes this reduces. I also manage to make it just outside my room. This is an awsome experience as I have been within these four walls for over a week now. I am also worried because the doctor predicted i would only need to be here for a week. But i don't feel anywhere near ready to leave.

Friday 1st July

Leg lengthening begins
I am dreading this. But thankfully the actual process isn't painful. There are four screws on each leg which i must turn 90 degrees 4 times a day (every 6 hours). Each 90 degree turn delivers 0.25 mm of separation between my broken bones.

Saturday
Much like friday, i continue to lengthen and  physiotherapy is much the same. Involving the use of my walker and electric pads to strengthen my thigh muscles.

Sunday
My left wrist is beginning to feel the burden of taking my body weight whilst i use my walker. It's painfulness reduces my physiotherapy substantially and after a few steps i am returned to bed.


Monday
Dress change at the hospital in the morning. In the afternoon i am transported to a nursing home. Here we attempt some Physiotherapy but I struggle to stand yet alone walk. I'm not sure exactly what caused this set back, perhaps because almost 24 hours had passed before physical exercise. At this stage the only time my feet touch the floor is with the help of a nurse, i am physically too weak to lift or drop them to or from that height.

Hey Quilox,

Were in a similar boat. I had my operation on June 23 and am doing external tibias with a type of ilizarov(turning .75mm/day).

How much do you plan to lengthen?

Quote from: Whereintheworld? on July 31, 2016, 02:12:31 PMHey Quilox,

Were in a similar boat. I had my operation on June 23 and am doing external tibias with a type of ilizarov(turning .75mm/day).

How much do you plan to lengthen?

Hey Whereintheworld. I'm planning to lengthen 6cm. I wanted to do more but it's all I'm going to have time for. Providing I don't have further complications. I'm doing 1mm a day. I wish I had the time to do it at 0.75 i think it would be less pain. However the down side is you have to live with the frames longer in order to achieve the same results.

You're about half way done lengthening then, congratulations on that.

Quote from: Quilox on July 31, 2016, 11:54:59 AMI am mostly in isolation now as I am in a hotel, and very few people here speak English. Coming to this forum has restored a great deal of sanity and whilst i am a reserved and private person, sharing my story is probably the best thing i can do for others.

If it counts for anything, you've got a kindred spirit in Italy right now.

Hang in there brother

Ok i'm going to bring my diary up to date.

Tuesday 5th July
Physio is focusing on things i have previously worked on. Assisted leg raises, and short walk using walker. Another thing I remember helping me a lot was the ability to raise my hospital bed to almost 90 degrees. The bed in the nursing home isn't capable of this. As a result the use of the tilt table in the physio room is introduced. I am placed on the table and lifted upright. The weight of my body whilst strapped to the table helps to improve my posture.

Wednesday 6th july:
Language is a major barrier here, few speak english and so for those that don't you must improvise. Google translate is an absolute joke for any sentences with more than a few words. I don't appear to have the luxury of calling a translator as i did in the hospital and because it is Eid (or iftar/byram as its called here) i cannot seem to contact some of the staff who have coordinated this whole procedure. It is ok, where there is a will there is a way, you will learn to improvise in order to communicate but it can be incredibly frustrating - especially when you are misunderstood.

I am told my free Physiotherapy sessions have finished and from here on i must pay. The doctors advise me I don't need anymore Physiotherapy at the moment and so i take their advice. I'm glad i did as over the next few days my condition improved rapidly.

Thurs 7th July:
I am very frustrated. This is the time when i am expecting faster progress but i am not seeing it. It is at this point i begin to question my decision thoroughly. I had questioned it previously but now I was really questioning it. I have read this feeling of regret in other peoples diaries and believe me it's not a nice one. However all of the doctors are very reassuring and it helped me greatly. I had swelling in my right foot which worried me however they explained it was perfectly normal. All of the reassurances by the physio and doctors up to this point was very very crucial in keeping me calm and motivated. I would say you must be very motivated to fight through this ordeal. Nobody can ever prepare you for what you will go through.

Friday 8th July to Sunday 10th July.
I do my daily walking routine. Each day becoming stronger and more confident.


Monday 11th July:
My first x ray and weekly dressing change. It becomes clear from the x ray that my bones are not forming quickly enough to keep up with the extraction speed. I am advised to stop for a few days before continuing.

Tuesday and wednesday 12th and 13th July:
Although i am not lengthening on these days i am still walking around the nursing home. I successfully use the lift for the first time and also make it back to my room. This is the first time i do this without assistance. Previously i needed help lifting my legs from my bed and placing them on the floor as they were too weak.

Thursday 14th July:
Today i continue lengthening at the same 1mm daily rate as before.

I also move from the nursing home to the hotel. Not entirely effortless but painless. Everything is done to accommodate me from getting in and out of the van all the way to entering my hotel room and setting everything up. The hotel btw is an extremely nice one. At a discounted rate agreed with the hospital it came to roughly the same price as renting an apartment. However I chose the hotel instead of an apartment as the staff here are very happy to help, they are not nurses but at this stage nurses are unnecessary. Only thing I need is help moving things.

The hotel also has an amazing gym and other facilities like a swimming pool (which i cannot use for obvious reasons). Being here feels more like staying in a 5 star hotel on holiday as opposed to being here for surgery. I would honestly recommend this place even for a holiday without surgery.

Friday:
I am too nervous to use my walker to go all the way for breakfast. I am in a hotel where no nurses can rush to my aid. Instead i opt to be wheeled to the breakfast table by hotel staff who i mist add are incredibly helpful. I feel in every way catered for and in no way anxious. I am also able to wheel myself to the nearby pharmacy where i purchase calcium. Although I have been advised it is not necessary, it can still help. I am keen to give my bones whatever possible to form.

Saturday 16th July
I am able to walk and the pain has subsided considerably. I ask the hospital for a recommended physiotherapist as i am unhappy with my progress and i am happy to pay if it will enable me to advance from wheelchair to crutches. I begin intensive physio as my legs still aren't string enough and my lower back is far to weak to support my body on crutches. Even with the walker my back is extremely bent forward.


Wednesday 27th July.
Up until this point everything has been fairly consistent and straight forward. However, over the last few days i have experienced excruciating pain in my right knee. Why this is I do not know. But it's increasingly difficult to move. It feels incredibly stiff and as a result i am unable to walk. I am told to stop lengthening for 4 days. I have quit eating food and i'm now sticking to soup. I know it's unsustainable but due to an experience i had a few days ago where i needed to crap but was unable to walk to the toilet I decided it was best to reduce food intake. This idea has proved stupid however, as i am so weak as a result. 

I read somewhere on this forum that someone else had been experiencing pain in their knees. They had no choice but to "walk it off". This gave me some motivation to fight through the pain. I kicked my legs back and forth on the bed, the pain is like nothing ive experienced so far. The stiffness in my knees is so unbearable but i have to continue. I have nobody to cry to, no roommate to talk to, no nurse to attend to me. The hotel staff of course are available but there isnt exactly a great deal they can do apart from offer me water. I'm not a religious person but i think when you are truly in a horrible place and in isolation where nobody can help, the only place is to look up. The only person i have to cry out to is God. I have no shame in doing that. Especially as it has strengthened me.

After roughly half an hour of kicking whilst screaming and praying and doing everything I possibly can to endure the pain... the pain subsides.

I hope I haven't offended anyone in explaining exactly how I have coped so far in terms of my faith. It's just the truth.

Thursday 28 July:
I visit the Dr who is over seeing my LL, expecting swabs of sympathy and some kind of solution to this intermittent knee pain. When he enters the room he looks really surprised and tells me I am so weak. I considered myself to be considerably strong mentally so of course he must mean physically. However.. I didn't really consider my physical state to have deteriorated but i thought to confirm it with him. "Physically?" I replied. He corrected me and said "No, mentally".

I was in shock, i was making so much effort to be mentally strong but it wasn't enough. And he was right. You have to be mentally indestructible kind of strong to be able to cope with some of the crap this surgery can throw your way. These words of telling me i was so much mentally weaker than I thought, was the eye opener i needed. Pain is in the mind. If your mind is strong enough you can cope. After pushing myself I found myself coping with pain that 100mg of Tramadol (or contramal as they call it here) couldn't solve.

Friday 29th July

I think the type of mentality one needs to survive this ordeal is almost military. Like that of an injured soldier. I have been watching loads of war films where the courage of those that were injured got them through. It sounds irrelevant and i guess it kind of is. But it further reinforces my point regarding being mentally strong.

So up till now I have lengthened 2.3 cm. I have lost 6 days of lengthening which is really annoying me as i will have to rearrange my flight, again!

Saturday 30th
I decide to try sleeping with my knees bent. For some reason when i wake up the pain that normally returns to my knees isn't there. They're still stiff but hey, the pain was the biggest issue.

Sunday 31st
I decide im going to create a thread on this forum. I don't know if people will read it or benefit but at least it's out there. I've been as acurate and honest as i could. Even though i've been here over a month, i'm still scared, nervous, worried about so many things. If i go home in a wheel chair (as is probably going to happen given my progress) how do i get up the stairs into my house?? I do I naviagte around my narrow hallway with a wheelchair. These are all things you should consider BEFORE you have this operation. I wish I had. But instead i read the best stories where people left on crutches after three months of LL and assumed that would be me. But not everybody does, plenty of people leave in a wheelchair. Everybody's anatomy is different and you have no clue until the time comes for your own surgery to take place.

Quote from: Whereintheworld? on July 31, 2016, 03:37:30 PMYou're about half way done lengthening then, congratulations on that.

If it counts for anything, you've got a kindred spirit in Italy right now.

Hang in there brother

I really do appreciate that!!

Hi Quilox

Thanks for posting your journey.  I've not done ll but will, as long as I can manage enough time in the future.
1 mm a day seems a little too much for tibia, since in general tibia lengthening is limited to 0.75 or even less mm a day.  Make sure you can really take that much lengthening every day until you reach your goal.  I think 6 cm is a quite a decent goal for tibia, that could be a sort of safe line, although I think 5-5.5 cm could be safer.  You will also recover much much faster if you do 6 cm rather than 7 over more cm. 
Be strong and focus.  As you said, PAIN will GO away eventually.  Gain will replace it in the end.

Good luck!!

Ghostfish

Quote from: Ghostfish on July 31, 2016, 03:57:36 PMHi Quilox

Thanks for posting your journey.  I've not done ll but will, as long as I can manage enough time in the future.
1 mm a day seems a little too much for tibia, since in general tibia lengthening is limited to 0.75 or even less mm a day.  Make sure you can really take that much lengthening every day until you reach your goal.  I think 6 cm is a quite a decent goal for tibia, that could be a sort of safe line, although I think 5-5.5 cm could be safer.  You will also recover much much faster if you do 6 cm rather than 7 over more cm. 
Be strong and focus.  As you said, PAIN will GO away eventually.  Gain will replace it in the end.

Good luck!!

Ghostfish

What you said is precisely true. 5cm is the safe line. The doctors here were honest in telling me that. And that's the main reason i chose them. They didn't sell me the 7.5cm dream that others did. I will aim for 6cm only because i really want to maximise my height but without risking too much. I think 6cm is probably the most i can do safely given my proportions. And it's all i have time for anyway.

Very well written journal, keep up the good work.  The Dr shouldn't be calling you week first of all. The key is to take things one day at a time so you don't get overwhelmed. Try a pillow  between the legs to sleep on your side