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[Erkan]

Walking with swag like a gangster... 

Is it like clicking? Sometimes the nail clicks when it has heavy muscle resistance against lengthening. Make sure to check x-ray to see how much lengthening is done and if both sides match in case

Hey its not a clicking. I dont hear it I just feel a vibration in the knee. It happens randomly but only on one side. Lets see what the next x-ray shows.

[Limbfan2020]

Hey Erkan, how are you? Everything all right? Any improvements? Is the bone already growing?

[Erkan]

Hey Erkan, how are you? Everything all right? Any improvements? Is the bone already growing?

Hey,
Im now at 4,3cm. Everything is improving. I have less pain better gait and more strength. I dont need the crutches anymore. Ive got some burning on my left lower leg after 4cm. I ve slowed down the distraction and the burning is now nearly gone.
I‘ll visit the Doctor in a few days for xrays. But until now bone growth was very good!

[Erkan]

Hello everyone,

Its 62 days post surgery,
I was getting xrays today. Everything looks good! Im at 4,6cm right now. I dont have wide legs or duckass thats great. My left leg seemed to be 1-2mm less distracted. I think this is due to the vibration I feel during distraction on this leg. We will check this at the end and eventually distract this leg 1-2 days longer to catch up. I should be done with distraction phase in 3 weeks yeahhh!!:)))
I dont need painkillers anymore but i usually take one for better sleep but it is definitely manageable without. After 3cm it got gradually better so life is good now:)
Here is my latest xray: https://imgur.com/a/DBHNkzE

[Erkan]

I would like to tell you something about my story. maybe one or the other will recognize themselves in it and it will help them with their decision. By my 18th birthday, I knew I would no longer grow. Even before that time, I often felt uncomfortable and had a kind of social phobia when going out with friends. I have to say that all of my friends were very tall. it started with around 16 years when I kept getting panic attacks when I went out. At that time I didn't know what that was. In the course of time I felt my height more and more often. Then there were often unexpected statements like "you are small" or simply "the little one". When I was 18, due to an event, which also had to do with my height, I had a collapse. Panic attacks lasting months, severe depression and everything that goes with it. I got ssri which at some point helped me to feel better and at some point I even did well so that I could graduate from school. After stopping the medication, the symptoms came back after a while. and so it went on over the years. A year ago I decided to start therapy because at some point over the years I no longer understood the origin of my problems correctly. In the course of the therapy I realized again that my height was the reason I ve, developed this thought patterns in my head and that I felt locked in. I specifically avoided certain situations, wanted to sit rather than stand, no photos, etc. In my head it was like a prison that didn't allow me to fully develop. In the course of time, I also developed obsessive thoughts which are not directly related to  heighg but were a kind of compensation for it. I don't want to be too euphoric and write that everything is good now. Its like everyone says. It wont make you happy but I dont have this bad feeling anymore so I can focus better on other things which eventually will make me happy! I do already feel like a ballast has fallen from me. I can already tell when I walk on the street that I just feel good. no longer that tense feeling from before. I still take ssri but plan to stop after my regeneration. I hope this peace in my head stays with me.

[Serilium]

I would like to tell you something about my story. maybe one or the other will recognize themselves in it and it will help them with their decision. By my 18th birthday, I knew I would no longer grow. Even before that time, I often felt uncomfortable and had a kind of social phobia when going out with friends. I have to say that all of my friends were very tall. it started with around 16 years when I kept getting panic attacks when I went out. At that time I didn't know what that was. In the course of time I felt my height more and more often. Then there were often unexpected statements like "you are small" or simply "the little one". When I was 18, due to an event, which also had to do with my height, I had a collapse. Panic attacks lasting months, severe depression and everything that goes with it. I got ssri which at some point helped me to feel better and at some point I even did well so that I could graduate from school. After stopping the medication, the symptoms came back after a while. and so it went on over the years. A year ago I decided to start therapy because at some point over the years I no longer understood the origin of my problems correctly. In the course of the therapy I realized again that my height was the reason I ve, developed this thought patterns in my head and that I felt locked in. I specifically avoided certain situations, wanted to sit rather than stand, no photos, etc. In my head it was like a prison that didn't allow me to fully develop. In the course of time, I also developed obsessive thoughts which are not directly related to  heighg but were a kind of compensation for it. I don't want to be too euphoric and write that everything is good now. Its like everyone says. It wont make you happy but I dont have this bad feeling anymore so I can focus better on other things which eventually will make me happy! I do already feel like a ballast has fallen from me. I can already tell when I walk on the street that I just feel good. no longer that tense feeling from before. I still take ssri but plan to stop after my regeneration. I hope this peace in my head stays with me.

  thank you for sharing. honestly makes me smile that you are now comfortable in your body and already starting to feel more confident and remove the neurosis. so happy for you man. after all- this is the point of the surgery eh? remove the neurotic thoughts and insecurity of height. makes me teary eyed erkan

[FSchez]

I would like to tell you something about my story. maybe one or the other will recognize themselves in it and it will help them with their decision. By my 18th birthday, I knew I would no longer grow. Even before that time, I often felt uncomfortable and had a kind of social phobia when going out with friends. I have to say that all of my friends were very tall. it started with around 16 years when I kept getting panic attacks when I went out. At that time I didn't know what that was. In the course of time I felt my height more and more often. Then there were often unexpected statements like "you are small" or simply "the little one". When I was 18, due to an event, which also had to do with my height, I had a collapse. Panic attacks lasting months, severe depression and everything that goes with it. I got ssri which at some point helped me to feel better and at some point I even did well so that I could graduate from school. After stopping the medication, the symptoms came back after a while. and so it went on over the years. A year ago I decided to start therapy because at some point over the years I no longer understood the origin of my problems correctly. In the course of the therapy I realized again that my height was the reason I ve, developed this thought patterns in my head and that I felt locked in. I specifically avoided certain situations, wanted to sit rather than stand, no photos, etc. In my head it was like a prison that didn't allow me to fully develop. In the course of time, I also developed obsessive thoughts which are not directly related to  heighg but were a kind of compensation for it. I don't want to be too euphoric and write that everything is good now. Its like everyone says. It wont make you happy but I dont have this bad feeling anymore so I can focus better on other things which eventually will make me happy! I do already feel like a ballast has fallen from me. I can already tell when I walk on the street that I just feel good. no longer that tense feeling from before. I still take ssri but plan to stop after my regeneration. I hope this peace in my head stays with me.

Hi Erkan!
I am very happy to know that you are progressing well and that you are already so close to your goal.
When I have read this publication I have felt that many of us have spent very hard days locked in our minds because of our height ...
Luckily we are having an opportunity to change our physical and mental state to make us feel good and happy with our appearance.
I think that when we finish this difficult process we will not only be a little taller, I am sure that our social life will have changed for the better.
I hope everything goes very well for you
Good luck friend!!

[HeightGain]

Sorry to hear that you had a difficult time in the past. That was a different person, focus on the new you and enjoy the euphoria.

[Erkan]

Nice to read the replys! Thank you:)

[Erkan]

I made two new gait videos for you.
Its day 63 post surgery, 4,7cm. You can see my butt is gone. I will start in a few weeks with some upper body training :p I kept my shirt of so you can see the proportions better. I wear my pants pretty low, but that was also my style before the surgery.
https://imgur.com/a/9xwtiaW

[RazalDazal]

you actually look pretty good. Gait looks good especially walking on grass

I made two new gait videos for you.
Its day 63 post surgery, 4,7cm. You can see my butt is gone. I will start in a few weeks with some upper body training :p I kept my shirt of so you can see the proportions better. I wear my pants pretty low, but that was also my style before the surgery.
https://imgur.com/a/9xwtiaW

[FSchez]

I made two new gait videos for you.
Its day 63 post surgery, 4,7cm. You can see my butt is gone. I will start in a few weeks with some upper body training :p I kept my shirt of so you can see the proportions better. I wear my pants pretty low, but that was also my style before the surgery.
https://imgur.com/a/9xwtiaW

Hi again Erkan!
Because of the way you walk in the 2 videos, it does not seem that you have had an operation ... Also, your proportions look good. I'm glad of your progress !!
I hope to improve my gait by following your advice, although it hurts a lot to endure lying with my feet together for just 5 minutes ...

[Erkan]

Hey thank you to both of you!
Yeah I know it hurts :p  you can try only 2 minutes or so. Wish you the best!

[HeightGain]

Proportions look great. Given your 173cm wingspan I was thinking your arms would look short but they don't

[L8GrowthSpurt]

I made two new gait videos for you.
Its day 63 post surgery, 4,7cm. You can see my butt is gone. I will start in a few weeks with some upper body training :p I kept my shirt of so you can see the proportions better. I wear my pants pretty low, but that was also my style before the surgery.
https://imgur.com/a/9xwtiaW

Congrats on the progress! Your gait looks very good 👍

[Erkan]

I have something important to tell you. About 2 weeks ago I felt a strong pain in my right leg while stretching. Probably a muscle strain. since then my right leg was a bit swollen and hurt more than my left. but nothing bad. My mother, (she is nurse), recently saw the slightly swollen leg and has asked me every day since, that I should clarify whether it is not a thrombosis. Since I take prophilaxic thrombosis injections every day and I also exercise regularly, I ignored it but made an examination today to calm her down. and the result was unfortunately really thrombosis. I was shocked. They immediately called the ambulance. It was a scary feeling. They have now switched to xarelto as bloodthinner. of course i'm a little concerned now. I hope I can still finish distraction as planned. what I mean by that: if you are unsure, it is better to get checked. I would have never thought that its thrombosis in my case since the only indication was light swelling which I was blaming on the muscle strain. As you know this could have a deadly ending. maybe my mother saved my life by doing this!

[redwedding]

I have something important to tell you. About 2 weeks ago I felt a strong pain in my right leg while stretching. Probably a muscle strain. since then my right leg was a bit swollen and hurt more than my left. but nothing bad. My mother, (she is nurse), recently saw the slightly swollen leg and has asked me every day since, that I should clarify whether it is not a thrombosis. Since I take prophilaxic thrombosis injections every day and I also exercise regularly, I ignored it but made an examination today to calm her down. and the result was unfortunately really thrombosis. I was shocked. They immediately called the ambulance. It was a scary feeling. They have now switched to xarelto as bloodthinner. of course i'm a little concerned now. I hope I can still finish distraction as planned. what I mean by that: if you are unsure, it is better to get checked. I would have never thought that its thrombosis in my case since the only indication was light swelling which I was blaming on the muscle strain. As you know this could have a deadly ending. maybe my mother saved my life by doing this!

dear Erkan,

God bless to your mother for saving your life. oh dear God this is a scary operation. It is surprising to me that you get this complication after almost 2 months after the operation. My doctor in spain told me it usually happens in the first month. and you are doing the stryde nail and walking everyday. This is a complete surprise to me.

the treatment for this complication is the blood thinners so you should be ok with going forward. Best of luck to you Erkan!

Did you find out which leg the complication came in? Is the injections you were taking more powerful than xarelto?

regards,
sergio

[Serilium]

Were you only given aspirin Erkan as the "blood thinner" before Mr. Erkan? So sorry you went through that but glad you caught it in time.

[RB]

I have something important to tell you. About 2 weeks ago I felt a strong pain in my right leg while stretching. Probably a muscle strain. since then my right leg was a bit swollen and hurt more than my left. but nothing bad. My mother, (she is nurse), recently saw the slightly swollen leg and has asked me every day since, that I should clarify whether it is not a thrombosis. Since I take prophilaxic thrombosis injections every day and I also exercise regularly, I ignored it but made an examination today to calm her down. and the result was unfortunately really thrombosis. I was shocked. They immediately called the ambulance. It was a scary feeling. They have now switched to xarelto as bloodthinner. of course i'm a little concerned now. I hope I can still finish distraction as planned. what I mean by that: if you are unsure, it is better to get checked. I would have never thought that its thrombosis in my case since the only indication was light swelling which I was blaming on the muscle strain. As you know this could have a deadly ending. maybe my mother saved my life by doing this!

Sorry to hear that mate but lucky it was identified in time. Is there a reason Dr Koehne didn't have you on xarelto from the beginning? I am currently taking xarelto at 3 and a half weeks post op and have been on it since the time of the surgery.

[Erkan]

dear Erkan,

God bless to your mother for saving your life. oh dear God this is a scary operation. It is surprising to me that you get this complication after almost 2 months after the operation. My doctor in spain told me it usually happens in the first month. and you are doing the stryde nail and walking everyday. This is a complete surprise to me.

the treatment for this complication is the blood thinners so you should be ok with going forward. Best of luck to you Erkan!

Did you find out which leg the complication came in? Is the injections you were taking more powerful than xarelto?

regards,
sergio

Yes its very suprising! I dont know how long i do have the deep vein thrombosis. I could have it longer without any signs? I dont know. But for about 2 weeks something was different. I was blaming it on the muscle strain. During the lengthening phase you go through all kind of feelings and pain so this wasnt anything I was thinking about.
I asked the doctor here at my hometown how this is possible since I get injection since day 1 which should prevent thrombosis. His answer was that its only 80-90%. As everything. Nothing is 100% safe. The injection were less powerful but regular therapy for preventing thrombosis. The Xarelto I was given now is much stronger and is for the case if you already have thrombosis. Xarelto is normally overkill for preventing thrombosis and can have other dangerous side effects.

Were you only given aspirin Erkan as the "blood thinner" before Mr. Erkan? So sorry you went through that but glad you caught it in time.

No I was given the regular injection since day one. They are called Mono embolex 3000 in germany and are standard after operation. Cant blame the Dr. Its really bad luck

Sorry to hear that mate but lucky it was identified in time. Is there a reason Dr Koehne didn't have you on xarelto from the beginning? I am currently taking xarelto at 3 and a half weeks post op and have been on it since the time of the surgery.

Where was your surgery? Here they usually use the injection as prevention which should normally be enough and xarelto can have other rare dangerous side effect. I think this is the reason. But maybe this will change in the future?

[redwedding]

Yes its very suprising! I dont know how long i do have the deep vein thrombosis. I could have it longer without any signs? I dont know. But for about 2 weeks something was different. I was blaming it on the muscle strain. During the lengthening phase you go through all kind of feelings and pain so this wasnt anything I was thinking about.
I asked the doctor here at my hometown how this is possible since I get injection since day 1 which should prevent thrombosis. His answer was that its only 80-90%. As everything. Nothing is 100% safe. The injection were less powerful but regular therapy for preventing thrombosis. The Xarelto I was given now is much stronger and is for the case if you already have thrombosis. Xarelto is normally overkill for preventing thrombosis and can have other dangerous side effects.

dear Erkan,

did you perform the repeat test to check if your blood clots has improved? and can you tell me the name of the injection you were given including the company name? I want to do some research on this topic.

sergio

[Erkan]

dear Erkan,

did you perform the repeat test to check if your blood clots has improved? and can you tell me the name of the injection you were given including the company name? I want to do some research on this topic.

sergio

The blood clots were detect today for the first time. Im sure they will check it again after some time! The injection were called: mono embolex 3000

[Erkan]

unfortunately I have to stop the distraction :// Dr Koehne adviced to stop and that only after the vein opens further distraction is allowed. I wrote in the beginning that my goal is 4,5-6,00 cm. Im at 4,7cm right now. I would love to make the 6cm but safety first! There is still a chance that the vein opens before the bone consolidates but that has to be carefully monitored.

[redwedding]

unfortunately I have to stop the distraction :// Dr Koehne adviced to stop and that only after the vein opens further distraction is allowed. I wrote in the beginning that my goal is 4,5-6,00 cm. Im at 4,7cm right now. I would love to make the 6cm but safety first! There is still a chance that the vein opens before the bone consolidates but that has to be carefully monitored.

dear Erkan,

I am feeling sad to hear this but health always comes first. I didn't know that the lengthening causes the blood clots. I had thought that it's the first operation which causes it (like any fracture operation). I don't understand the concepts here. Why should the lengthening cause the clots or worse them? Lengthening will creates the new blood vessel tissues and not make the existing blood vessels smaller.

Erkan, it would also help me to see the photo of your leg with the dvt.

cheers,
sergio

[Erkan]

dear Erkan,

I am feeling sad to hear this but health always comes first. I didn't know that the lengthening causes the blood clots. I had thought that it's the first operation which causes it (like any fracture operation). I don't understand the concepts here. Why should the lengthening cause the clots or worse them? Lengthening will creates the new blood vessel tissues and not make the existing blood vessels smaller.

Erkan, it would also help me to see the photo of your leg with the dvt.

cheers,
sergio

We really dont know the real cause of this since its very unusual at this stage and under this circumstances ( stryde, full mobility and injection). I have made a picture of both legs but even I dont see a real difference. The swelling is minimal. But my right leg feels heavier. I just blamed it on the distraction an muscle strain. Maybe the muscle strain two weeks ago caused the thrombosis? Just a theory. My Dr recommended to check if I maybe had covid. This could also be a potential risk for thrombosis.
https://imgur.com/a/GbQl962

[RB]

Where was your surgery? Here they usually use the injection as prevention which should normally be enough and xarelto can have other rare dangerous side effect. I think this is the reason. But maybe this will change in the future?

I had my surgery in Germany with Dr. Betz. I had the injections in the hospital but then switched to xarelto after discharge.

[Erkan]

What dosage? I do get now 15 mg twice a day. You got probably less since it should only prevent it.

[Johnp86]

Really hope you’ll be able to reach the 6cm man! As you said, safety first, this surgery is no joke, god bless your mother identified the problem in time!

[Ahd1978]

Hello everyone I’m a quiet and silent cll patient. I had my surgery JAN 31 with dr. Paley in Poland at his institute as I could not travel to the US due to Covid. My journey started with complication of minor fat embolism as dr. Paley called it but it scared them and he told me I’m one of the 3 patients he has seen this happen before. I was in icu for 3 days.
I am 43 years old and started surgery with 176.5 cm aiming to get to 184 cm.
I have been in poland since then doing my regular physios sometimes 2 hours and recently when I reached 4 cm I had an irregular heartbeat and I rushed to ER. Poland for that matter isn’t most first world and even though I’m at best private hospital here it’s still not my first preference.
I was asked to shift to aspirin when injections finished and when irregular heartbeat happened I did blood tests. I refused to accept from local polish docs that it’s all in my mind. I had care taker who rushed me to ER. They did ct scan ecg and finally I asked for ultrasound of legs and they said only blood shows dimmer levels elevated along with liver enzymes being elevated too. Apparently also part of post surgery. So I am now on 2injections per day of 40mg of heparin which isn’t something I look forward to daily. I am shocked and surprised that docs only do x rays and not blood tests every 2 weeks or a monthly blood check.
In any case next week I should be at 5.5. Cm distraction and 182 cm height. I am being adamant on blood tests next week as after 8 weeks post surgery dimmer levels should start to show normal levels along with liver enzymes.
Dr. Paley says that distraction is not affected by veins or clots.

But I am no doctor and I feel every time I do distraction now my breathing is bit heavier. What truly helps me are deep breaths throughout day.

I started walking and have been active with right leg struggling at time’s due to my 2 acl surgeries I had as I was an active sportsman.

I have had many surgeries in life for various reasons but this surgery is another league.

I suggest all cll patients to be in solid shape and by that I mean from lungs to liver to heart to all and have all pre tests done. In hindsight now if I knew I had fatty liver maybe I shouldn’t have done surgery.

Doctors do their job and you are left alone with physio or an assistant doc but it is pretty much upto every individual to monitor how they feel.

I have gone ahead and also bought an oxy meter to check oxygen levels and beats per minute just in case. Prevention is better than cure.

The energy levels post this operation are low low for me. It’s like 4 hours of regular work and I feel like I’m 90 years old.  Hoping energy levels improve which all say only come back in 6 th month.

Dr. Paley would be visiting in may in poland again as he has an excellent practise here for many deformities and heavy cases with children which are another league of complexities.

So overall yes I am thankful and blessed to be alive but in hindsight if one is doing this surgery I would recommend regular blood tests and be on dot yourself.  We know our bodies better than anyone. Any deviation I would say go to ER. Don’t google or check the forum alone.

Just my 2 cents and need the prayers and love for all to complete this journey.

Does anyone have literature on fact that distraction may cause embolism?

Thanks
ahd

[fivetenneeded2016]

its really scary to read all these. as a current precise patient, could you tell me what signs i must look into to detect this early?

erkan said he had swelling, what did you(ahd) notice to suspect this? abnormal heartbeat?

i also read literature on covid or its vaccinr increasing the risk...@ahd, did you have covid or its vaccine ?

[Ahd1978]

Hello

I was eating garbage after having read on forum eat your way to glory and one of days I was eating a full pizza and coffee and coke. I think my eating became unhealthy as I assumed whatever I eat would consume it. But remember previously I had fatty liver in blood tests which I guess comes with drinking or age or bad life style. I didn’t specifically prepare for surgery as I thought I’m just in my 20s still and I’ll recover.

So what happened was that my heart beat became very fast and erratic. I rushed to ER as I mentioned and dimmer levels came elevated. Only then they did ct scan ultrasound and ecg. I was fortunate clot didn’t form to reach but blood level showed signs 

So yes heart beat and heavy breathing was for me.

I would suggest following

1. Eat well but healthy. You aren’t moving much so don’t stuff junk

2. Have blood tests every 2 weeks. Drink lots of water and that also pushed u to go to toilet more often

3. Breathing excercises daily. Getting out of bed every 2 hours and I was lazy watching tv at times.

4. Get an oxypulse meter for home to check oxygen levels.

5. Continue heparin till distraction no matter what.

6. Do not panic breathe heavily and have emergency on speed dial. Pain worsens it.

7. Besides this inside ankle of right leg and lateral femoral nerve of left leg has gone numb with tingling sensations. But that dr. Paley says is from surgery and is normal and over time when we get active these nerves come back.

I have been told to continue with distraction I am trying for 7.5 and currently close to 5.5.

Listen to your body it will give you signs. Don’t over exert either.

Over all it’s tough journey mentally physically and all levels.

Take each day as it comes as some days are excellent and some just very tiring.

I am still learning about energy levels being so low and adapting to this new pace.

And pls pls have someone with you. I had no one past 2 months and it really sucks emotionally. That’s why I have a care taker so we have something to share or talk and he can always be around if I need to rush somewhere.

Hope this helps.

I will brief all on my blood tests next week and let’s see if dimmer levels have come down which they should as  they only stay elevated 6 weeks post surgery.

But I am really pushing local docs here in absence of dr. Paley and they might not like my approach but I have paid 100 usd  for this and if I’m just left alone to figure it all out myself.  No thank you. I will push the limits do research and continue with blood tests so these docs know I’m not just a number