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[Jokerhastowait2022]

This is 1000% how I felt doing femurs. It's crazy, you really go from 100 to 0, it's so psychologically damaging. Haha but you'll recover, so don't worry. 3-6 months after removal you'll be back to normal. Stay strong brother.

Haha yeah, I read your diary , I know what you're talking about.  That's the plan! I'm hoping to be walking normally 3-4 months after the removal surgery. Fingers crossed!

[Jokerhastowait2022]

Femur:
If you want more cm, painful days are waiting for you

Do you think it is necessary to use blood thinners?

I still take aspirin to be extra careful, not sure if it's required tho.

[ll.patient]

Hey Joker, I am also doing LL with AFA. I am now on 6th day after surgery (not including surgery day), soon I will be also on the same hotel as you!

Wish you a good luck, good that you didnt have so much pain in the beggining, for me I am having a lot, its been the worst part, but its decreasing with time.

Regarding the condition of when you are in the verge of sleeping doing an involuntary moving and feeling a lot of pain in the knee, I am also having this too, what I did last night and maybe solved this is not to sleep with the legs completely stretched, but a bit bended (just a little bit), while also put the middle part of the bed, where the knee are a bit up.
Could you solve that problem?

[Jokerhastowait2022]

Day 25- + 1.5 cm

Wow, time flies. it's been almost a month since I got the surgery, and now I'm at the 1.5 cm lengthening mark. I haven't started to experience muscle pain or tightness yet. Reportedly, it gets harder for the tibia to elongate at the 3-4 cm mark, we'll see what happens. AFA's PT is great. They know what problems can occur further in the future and try to mitigate them early on so that the lengthening can continue smoothly. I had some hiccups along the way. For example, I experienced some pain in my right knee which is greatly reduced now. Having said that, I still feel some uneasiness there when I try to stand up or sit down . Sleeping has not been hard to come by. nevertheless, waking up with these frames after hours of being still is uncomfortable and takes time to get back to normal after blood circulation increases. At this point, I expected myself to get used to the frames but sometimes I just want to get rid of them for no reason. not because they're extremely uncomfortable, rather it's kinda wired to carry something foreign this long. For those who want to get external fixators done, I advise you to be careful not to make any sudden or forceful movements. Although they are sturdy and can carry your weight ( for most people), fixators can still malfunction and that's a scenario everyone should avoid. For now, I'm following 2hrs/5 times a week PT rigorously and also maintaining a protein-rich diet. Hopefully, I'll be done with lengthening in 40 days. Finger's crossed!

Best regards,
Jokerhastowait2022

 

[LL2022]

Hi Joker,

First of all, thank you for documenting your journey, it has been very helpful!

I'm planning to undergo surgery with AFA this summer for 5cm Tibia lengthning. I have a question. Does Dr Uysal not use monolateral fixators? Why not? It seems like monolateral fixators would be more comfortable for the patient, have less scarring, I guess maybe at the cost of stability of the broken bones?

Stay strong brother!

[Jokerhastowait2022]

Hey Joker, I am also doing LL with AFA. I am now on 6th day after surgery (not including surgery day), soon I will be also on the same hotel as you!

Wish you a good luck, good that you didnt have so much pain in the beggining, for me I am having a lot, its been the worst part, but its decreasing with time.

Regarding the condition of when you are in the verge of sleeping doing an involuntary moving and feeling a lot of pain in the knee, I am also having this too, what I did last night and maybe solved this is not to sleep with the legs completely stretched, but a bit bended (just a little bit), while also put the middle part of the bed, where the knee are a bit up.
Could you solve that problem?

Hi! It's crazy how individuals react differently to this procedure. Some have a lot of pain, while others experience pain at manageable levels. I hope you're no longer having issues or pain. honestly, the involuntary leg movements have subsided. While at the hospital, I used to put a pillow under my knees to lessen the impact the movements had on them. That's how I dealt with it.

[Jokerhastowait2022]

Hi AsianCyborg,

Yes, During my research phase AFA stood out as well. This was because they never shared their patients' identities (Unlike other agencies in Turkey) unless they wanted to. Also, the doctors they work with are top-notch and have good track records as far as I know. 6 CM is definitely possible in tibias but everything gets harder after 5 cm and you need to listen to your body and not get too greedy about an extra 1 cm or so.  To answer your questions:

1- As far as my research tells me, Dr.Uysal has done many CLL surgeries in both Femur and tibias with great results, and I don't think he'd have problems performing surgeries on either segment.

2- Absolutely! LL is a very compilation-prone surgery, and you need to be monitored by your doctor regularly to identify possible obstacles in advance and prevent them from getting worse. Dr.Uysal visits his patients at least once a month ( sometimes biweekly) to make sure everything is on the track. In fact, this was one of the main factors that made me choose him. After all, LL is no joke.

3- Initially, I was planning to get monorails. But, after my consultation with Dr.Uysal, I decided to go with Ilizarov frames. The reason was that he emphasized that Ilizarov frames have a lesser capacity to cause deformities in tibias in comparison to monorails ( monorails can cause valgus). And also the pins at the top and bottom in Ilizarov frames can effectively fixate fibula to the tibia to prevent any shifts, especially in the ankle area, which in turn prevents arthritis in the future. So, Although they are bulkier I rather have lesser chances of complication and deformity. that's why I chose them.

4- I am aiming for 5.5 cm, but if things get hard after 5cm I might settle for 5.2 or 5.3 cm as well. So, fingers crossed!

Hi Joker,

First of all, thank you for documenting your journey, it has been very helpful!

I'm planning to undergo surgery with AFA this summer for 5cm Tibia lengthning. I have a question. Does Dr Uysal not use monolateral fixators? Why not? It seems like monolateral fixators would be more comfortable for the patient, have less scarring, I guess maybe at the cost of stability of the broken bones?

Stay strong brother!

Hi, thanks for the words of encouragement! Congratulations on the decision! it's defiantly a life-changing and very hard decision to make. Regarding your question, I had already answered it. You can find it in the mentioned quotes.

Stay safe,
Joker

[LL2022]

Thank you Joker, Not gonna lie... I'm starting to get extremely nervous thinking about all the possible outcomes that can happen during the procces this summer, also when I get home in September when I have to attend classes again. Maybe 1 month post external fixator removal is not enough time and I have to think this over  .

Anyway, how do you pass the remaining time you don't have PT? Are you able to sit down infront of a laptop and play games/browse etc? Or are you mostly bed ridden? 

[Jokerhastowait2022]

Thank you Joker, Not gonna lie... I'm starting to get extremely nervous thinking about all the possible outcomes that can happen during the procces this summer, also when I get home in September when I have to attend classes again. Maybe 1 month post external fixator removal is not enough time and I have to think this over  .

Anyway, how do you pass the remaining time you don't have PT? Are you able to sit down infront of a laptop and play games/browse etc? Or are you mostly bed ridden?

Dear LL2022,

Overthinking "what might happen" is actually pretty normal. I used to stress about different kinds of minor/major complications months leading up to the surgery. I'm kind of a nerd, so I skimmed through a lot of academic papers that concerned different aspects of LL to see what I might have to deal with after I give my consent for my legs to be broken lol. But the thing for me was, I had this procedure in mind for almost 2 years. So I had to make a decision eventually since it was becoming an overly unhealthy obsession. Also, I knew that there were so many risks involved with the procedure that I'm sure you're aware of. Up to that point, I had lived almost 6 years of my life with a severe height neurosis which got even worse when I started university. It affected many aspects of my life negatively and didn't allow me to live a fulfilling life without having crippling thoughts regarding my stature.  I had also tried to accept it but it never worked. So I knew If I didn't fix it then I'd live a very sad life till I'm 60 and then regret why I didn't do something about it. Believe it or not, IMO severe height neurosis can't be cured unless by the means of surgery. it is deeply entrenched in the mind of its victim that only the physical change may be the cure. So, I made the decision to do it no matter what as if I didn't have anything to lose anymore. Honestly, I'm happy with the decision. If I knew what I know now, I'd still do it.

1-month post removal is indeed a limited time to recover before attending the classes. Isn't there any way for you to take a semester off? You can also use crutches to attend classes if you're a lightweight person.

I can pretty much do anything by myself. This is one of the perks of LON. it enables you to weight bear right after the surgery (again if you're a lightweight-average weight person.) and yes I can sit in front of my laptop and also study without much difficulty.

Hope this addresses your concerns!

Take care,
JOKER

[Jokerhastowait2022]

Day 35 - + 2.5 cm

It's been over a month since the initial surgery. I look back at what I went through with pride and amazement. To undergo such a complex phenomenon as osteogenesis and still be able to recover is unbelievable. The process so far has pretty much been combating problems one at a time. the first week after I arrived at the hotel, I had swelling in my left leg which made it impossible to walk due to the pain it caused. Then, My right knee started to hurt and I managed to resolve it by means of messaging and applying ice. Then, at approximately 2.2 cm nerve pains started to kick in which made sleeping harder. Now that I'm at 2.5 cm, my right calf muscle is getting tight and therefore painful to walk sometimes. But still, I keep myself motivated by seeing the light at the end of the tunnel. I can see the change in height when I stand in front of a mirror, and that alone gives me a boost of motivation to push through the day and finish strong. Honestly, the challenges I've been experiencing so far are nothing compared to my status before the surgery. Height neurosis is truly a nightmare to live with. As for my daily routine, I pretty much focus on doing PT and maintaining a good diet, and for the time that is left I try to study and work on my hobbies. Socializing with fellow LLers here has also been a great way to pass the time. I like to call them my people, cause they are the closest to ones who can understand why I'm doing this. Sleep is getting hard too. I can only sleep for 5-6 hours now due to muscle and pain nerves. It's annoying but I've been trying to deal with it by messaging my calf muscles and increasing blood flow before I sleep. I also lengthen right before sleep. I don't know if affects my sleep quality. I'd be more than grateful if someone could help me with getting better sleep! One Other thing I worry about is when I touch my left leg on the side and also the top of the foot, I feel less sensation compared to other regions. If I'm not mistaken, there's a nerve that crosses the fibula and then continues its way to the foot on the tibialis anterior. Does this mean this nerve is damaged or what? I'm really curious to know the reason behind this and also whether it will get resolved in the future?
Hopefully, I'll have my x-rays taken this week. I'll share them here also. That's all I can say for now.

Cheers,
JOKER

[LL2022]

Dear Joker,

I sincerely appreciate your effort to calm down my pre-srugery nerves, your words and diary is truly helpful. I can very well relate to your reasons leading upto the surgery. I grew up as a teenager in highschool aware of the existance of this forum and surgery. Back then I still had hope of growing a couple of centimeters potentially curing my obsessive height neurosis. Fast foward 5-6 years I barely grew anything and now I'm doing my Master's degree while my neurosis remain. I am now financially ready to pull the trigger, I hope I will be mentally and emotionally ready soon aswell. If my school accepts, I may be able to take a leave of absence until November, this would give me over  2,5months to consolidate and get ready. I'm around 62 kgs so I'm medium weight for my height I guess.

Regarding your sleeping issues, ZMA (Zinc, magnesium, Vitamin B6) aswell as melatonin supplements can be helpful. ZMA makes me feel much more well-rested and increases my quality of sleep overall. Especially deep sleep. Small doess of melatonin was very helpful for me trying to fall asleep during the day when I worked night shifts. I think complementing your regular painkillers with ZMA and/or melatonin could improve your sleep quality. As a stomache/side sleeper the ring fixators bulkiness is what worries me the most, I think sleep along with PT and nutrition are the most important factors to healing properly without complications.

If you are still in Istanbul in June, I hope to meet you. Also, please do not hesitate if there is anything supply wise you need that I can bring, it is the least I can do.
Congrats on your 2,5 cm!! Almost there

[Jokerhastowait2022]

Dear Joker,

I sincerely appreciate your effort to calm down my pre-surgery nerves, your words and diary is truly helpful. I can very well relate to your reasons leading up to the surgery. I grew up as a teenager in highschool aware of the existance of this forum and surgery. Back then I still had hope of growing a couple of centimeters potentially curing my obsessive height neurosis. Fast foward 5-6 years I barely grew anything and now I'm doing my Master's degree while my neurosis remain. I am now financially ready to pull the trigger, I hope I will be mentally and emotionally ready soon aswell. If my school accepts, I may be able to take a leave of absence until November, this would give me over  2,5months to consolidate and get ready. I'm around 62 kgs so I'm medium weight for my height I guess.

Regarding your sleeping issues, ZMA (Zinc, magnesium, Vitamin B6) aswell as melatonin supplements can be helpful. ZMA makes me feel much more well-rested and increases my quality of sleep overall. Especially deep sleep. Small doess of melatonin was very helpful for me trying to fall asleep during the day when I worked night shifts. I think complementing your regular painkillers with ZMA and/or melatonin could improve your sleep quality. As a stomache/side sleeper the ring fixators bulkiness is what worries me the most, I think sleep along with PT and nutrition are the most important factors to healing properly without complications.

If you are still in Istanbul in June, I hope to meet you. Also, please do not hesitate if there is anything supply wise you need that I can bring, it is the least I can do.
Congrats on your 2,5 cm!! Almost there

Hi there,

Since you weigh 62 kilos, you'll have much easier time in terms of mobility. I weighed 72 kg before the surgery and the fixators could bear my weight, so you'll have nothing to worry about.

As for the sleeping quality, I've been taking sleeping pills and they work fine. I can sleep at least 6 hours a day which is a huge improvement compared to before.

Don't worry about sleeping sideways, during your 10 days stay at the hospital after the surgery, you'll probably have to sleep on your back. But when you get back to the hospital, you can easily put a pillow between the legs and sleep on your side.

Yes definitely! most of your time here would be spent doing PT, eating healthy, and sleeping.

I don't think I'll be available by June, but you can still contact me through IG or here. thank you so much for the offer, but I really do not need anything at this point. 

Kindly,
JOKER

[Jokerhastowait2022]

Day 42 - +3 cm

I got my x-rays taken this week and turns out the real amount lengthened is off by 2-3 mm than the recorded one. In other words, in my diary, I had recorded a 2.9 cm amount of lengthening, but on x-ray it showed 2.6 cm. This is probably due to pin bending which is a result of weight bearing. So, If you're aiming for 5 cm of real length, you should more or less lengthen 5.5 cm worth of "recorded length". This the case for my frame, do not assume this applies to other types of ex-fix. I haven't gotten pin site infection up to this point, but one of my pins has been hurting for the last two days and I'm suspecting it's infection. I'll get it checked tomorrow, hopefully nothing crazy is happening. Now that I'm past 3cm, I decided to bump up PT. before, I used to do PT 2hours /day. Now, it's 3 hrs/ day. This is because stretching a lot can prevent ballerina foot, rather than letting it develop and then take care of it. Honeslty, There's not much to what I was up to for the last week. The lengthening phase has been a routine to follow for me. Hopefully, It will continue like this for the remaining part of it.

Regards,
JOKER

[canterk]

Hi Joker. Just curious, for example if you have an infection concern, can you contact the doctor and set an appointment for the next day immediately? or you have to wait for your regular appointment?

[Jokerhastowait2022]

Hi Joker. Just curious, for example if you have an infection concern, can you contact the doctor and set an appointment for the next day immediately? or you have to wait for your regular appointment?

Hi, You don't actually need to book an appointment. They directly contact the doctor if anything comes up and he responds as soon as he can, somtimes even immediately. Turns out i have inflammation and redness around my pin site which is a result of aggresive PT and is normal. No signs of infection is present. But it sure does hurt a lot!

[Jokerhastowait2022]

Day 52 - + 4 cm
 
I'm at 4cm now, and I can clearly see the boost in height. 4 cm might not seem a lot on the ruler, but it clearly is a noticeable difference on a lengthened limb. 4 cm is where you start to get ready for the end of the lengthening journey... counting days to get the fixators off and head home... Honestly, I'm glad I've come this far. I was met with a few obstacles on the way, but I managed to overcome them and continue the lengthening as a routine. This is perhaps the most important takeaway: to establish a routine and never give up when obstacles arise - which they will. the redness and swelling around one of the pin sites are now healed. Since it was near the ankle I could not actively dorsiflex it and therefore it took some time to be able to move my ankle. My muscles are tight but not to an extreme extent. I think they've adapted to the tension cause the tightness was more pronounced at around 2.5 cm. I have no nerve pain, but the reduced sensation on my left leg still persists. at this point, the ballerina foot is not an issue. I can passively dorsiflex my ankle up to 20 degrees and up to 10-15 degrees actively. I've been doing extra PT on my own by the means of a stretching strap and other normal stretching exercises. This has been crucial to maintaining my flexibility and hence managing the pain. The end is near for me, finally. time really does fly. almost 2 months have passed since the surgery. This has been a rewarding and tiring experience at the same time. I can now say the troubles have been worth it.


Cheers,
JOKER

[Jokerhastowait2022]

Day 60 - + 5 cm

Hi, I'm at 5 cm now, and the tension in the muscles has increased which in turn is pulling the foot down. my active dorsiflexion is barely at neutral but passive is OK. I've been experiencing more nerve pains for the last 3 days which made me use more painkillers. I can sleep fine with sleeping pills but without them, it's a nightmare. the reason why I'm at 5 cm now rather than on day 62 is because my latest x-ray measurements showed a greater amount of lengthening which was unexpected. I've decided to reduce the lengthening down to 0.75 mm for some time to experience less nerve pain but planning to bump it up to 1mm again since I have 6 days of lengthening left until removal. God, I CAN NOT wait to get these off and get back to normal. My callus looks good according to Dr.Uysal. I'll make sure to post my last x-ray before removal here. So far, I've had no major issues and have been pleased with AFA. IF you ask me whether or not I recommend them, I'd say considering what I experienced so far, Absolutely! Dr.uysal is a caring and conservative doctor, and AFA provides good services. Having said that, make sure you do your own research and just don't take my word for it. For now, I have to push through the last days and finish strong.

Peace!,
JOKER

[LL2022]

Just a week left until you are completely done with the most difficult part of the process, congrats!! I will in almost exactly one month also be going through the same hell you have haha... Sorry for asking you so many questions but may I ask what kind of sleeping medication you use, is it something the Dr has prescribed? Furthermore, are you only able to sleep on your back?

I suppose you will be taking advantage of the included 90days of physio AFA offers, so you will be in Istanbul for another month or so? Do you reckon you will be able to walk unassisted by then?

Take care man, I hope you will be around on this forum after you leave Istanbul to keep us all updated, if not we will understand too.

[Jokerhastowait2022]

Just a week left until you are completely done with the most difficult part of the process, congrats!! I will in almost exactly one month also be going through the same hell you have haha... Sorry for asking you so many questions but may I ask what kind of sleeping medication you use, is it something the Dr has prescribed? Furthermore, are you only able to sleep on your back?

I suppose you will be taking advantage of the included 90days of physio AFA offers, so you will be in Istanbul for another month or so? Do you reckon you will be able to walk unassisted by then?

Take care man, I hope you will be around on this forum after you leave Istanbul to keep us all updated, if not we will understand too.

Hi, yeah it's finally over. What a ride it has been! I'm sure you can get through it also so don't worry. As for the sleeping pills, I've used tramadol for the nights I was in really bad pain. Other than that, I tried to avoid it as it can be addictive. I can sleep on my side by putting a pillow between my legs to avoid fixators from touching each other. It's comfortable and I can sleep fine. I'm only going to stay for 1 week after the fixator removal as I have to go back ASAP. Walking unassisted is possible only after bone matrix is consolidated which takes about 2-3 months on average. So, I'd say at least 2 months is needed to walk unassisted. I'll try to update my journey after removal as well but not as frequent as before. Hope this helps.

Cheers,

[canterk]

can you share photos of the scars after fixator removal? thanks

[Jokerhastowait2022]

Fixator removel- 3 days into consolidation
Length gained: 5.5 cm

So, the fixators are finally off and I'm a whole lot comfortable now. Day 2 after fixator removal surgery was an absolute hell. I felt like I was ran over by a freaking car. All the nerves on my legs were on alert mode and I had severe muscle cramps. That day was the most painful day of all. I just couldn't stop screaming and moaning due to unbearable soreness in my legs. Gladly, I'm much better now and pain has subsided greatly. Day 1 after the surgery Doc.uysal made me to try walking with a walker but I couldn't do that because my butt was pointing outwards and my knees were bent, which made walking straight impossible. The next day, however, I was able to start putting more weight on my legs and really stretch the muscles out. Today, I was able to walk with a walker while not being too bent. Doc.uysal told me to put only 50-60 percent of my weight on the legs untill some bone consolidates. Here's my last x-ray:
https://ibb.co/VCD1phn
As I'm thrilled to be over with the lengthening phase, I still have to consolidate my bones and also condition my muscles to obtain a normal walk which I'd assume it'll take 2-3 months to do so. People have said it gets better day by day after Fixator removal, and I do believe in that. Mentally, I have stopped thinking about height other than how to get back to walking again. When I look at myself in the mirror, I feel good in my own skin and the negative thoughts are not there anymore. So, for me it was worth it. No matter how hard it was, I just couldn't live like my old self any more, and for that I'm so proud of myself. the primary reason why I decided to document my journey was to help folks like me who were/are interested in this surgery and genuinely think this surgery can make a difference in their lives. Seeing others going through such a drastic thing and still be able to go back to normal conditions was inspiring for me, and I am trying to do the same for prospective LLers here. To that end, I am planning to update this diary at the end of every month with my latest x-rays and walking videos. Other than that, I'm not going to be her frequently but I'll still try to check my Instagram account now and then, so if have any questions, you can reach me through there.

Alright, this is all I can say for now.

Lengthen wisely my friends,
JOKER

[Jokerhastowait2022]

can you share photos of the scars after fixator removal? thanks

I'll try to share pics this week.

[BagOfMilk]

Xrays Bro! how are you feeling now?? Are you able to fully weight bear? walk?

BTW we all miss you!

[edencorvo]

so what happened? how is your gait? can you handle full bearing? please notify us.

[Ayesha12345]

Hey how’s it going? I’m booked with AFA and would love to get some feedback on his you’re doing now

[Sals]

It has been a long time how are you? I will do it 15 days later with Dr.Uysal

[Victims of the AFA]

不要選擇這家公司。他們是屠夫! They are butchers !!!

[Sals]

Can l reach you with any social media account to talk about it because I will do it in 10 days!!!!