Posted on Nov 28, 2023, 5:09 am
#1
Hello everyone,
I want to tell my experience with LL and how I’m doing right now. Just a little over a month ago I went under surgery to get my legs lengthened. My former height was 134 cm, as you can see I have a form of dwarfism. That’s the reason I was willing to go do such a difficult surgery. I will not be disclosing where I did the surgery seeing that I’m quite recognizable with my form of dwarfism, just know I did it in the west side of Europe.
Now for my story:
We have to go back to two years ago, I was so willing to get a little taller. Just so that I could drive a normal car, have some more freedom and can overall just live a much more normal live. I didn’t want to do it to look better or for the social aspect. Seeing that I would still be on the shorter side. So there I went to my surgeon, he did LL but only the medical necessary kind. Because of dwarfism could be one of his cases. But during the consultation they asked me some weird questions that led them to believe that I was depressed (I was definitely not). During those six months I went to look for a different doctor, in one of my close by neighboring countries there was a specialized doctor that did the Ilizarov method. So he was willing to do it but I was not the biggest fan of that method. After our consultation I went to look for another doctor and I came out with my current doctor. He was more than willing to do it also said to me that the other doctor was really close minded and indeed saw my reasoning for doing this surgery. He was specialized in fitbone, after finding out about the cases with fitbone I don’t know if I would go for that again.
You are probably thinking why is she telling all of this nonsense, just to give you a perspective that LL is not something that is easy and you can just go for it.
About a month back;
I was so super excited to get my surgery I can finally be a little taller and live a somewhat more normal life. The morning of the surgery I was getting prepared by one of the assistents she was really kind and was also so happy for me. Getting all the pre op information I was then brought into the operation room. Seeing that I have quite a good relationship with my doctor we were making jokes and there was just an overall relaxed atmosphere. The anesthesiologist couldn’t find a vain to put the iv in, that is something that is normal for people with dwarfism. So they put me under with a mouth breather. I was gone in like a couple of seconds. Just shy of 8 hours later I woke up again, this was still in the operation room. So I heard the doctor tell one of the residents to schedule the next surgery. My instincts were going off with that statement. But still being so high from the anesthesia I could not form coherent sentences. So I asked the nurse that was with me a few minutes later why they were saying I needed to do a different surgery. She couldn’t disclose that information so the doctor was called. He explained that my femurs were perfectly executed. But my tibias were a problem. My bones were to short for the rod. We made x rays and stuff leading up to the surgery so it should’ve all have fit. My ankles were also not straight that’s were they wanted to get the extra cm from, so they straightened them, only my muscles were so used to the way that my ankle was standing he could not get the extra cm he prepared for. So there I went laying in my bed for five days waiting for the next surgery. I could not move my leg that was strictly forbidden seeing that he had to put the rod inside because of the broken bones. That resulted in the rod sticking out for 3 mm. I didn’t have a lot of pain, only laying in bed for five days straight was getting to me.
Second surgery:
The day of the second surgery I was again so excited, this was putting me back from the actual recovery and I was done with being only bed ridden. The pre op went a little the same but this time they did find a vein. After the surgery I got the memo that it all went well, I was over the moon. Only my pain went from a 3/10 (before Seco d surgery) to a 10/10. They gave me all the medication they could give but nothing worked. I was in a lot of pain for like 3/4 days. No sleep was getting to me I thing I slept like 2 hours every day. Nothing helped with the pain so I was just a sort of surviving I cursed everyone out (not really, only myself) and I did not eat for all those days. With not eating and losing quite some blood I had a hard time breathing on one of those days, my saturation was below 80 so I got a breathing tube. That helped so much and I could get like an extra hour of sleep. On the 3 day another doctor came to visit me he was quite concerned about my level of pain and the symptoms that I had. That made him question if I had compartment syndrome. I have a background in medicine so I knew what he was revering to and I was not happy with his conclusions. They scheduled a emergency surgery for the evening seeing that I had just eaten something for the first time in 3 days. In those six hours the doctor came to check on me quite often and he did some tests. That made him question his own findings so he called my actual doctor. I did not have compartment syndrome!! The problem was that they lengthened my tibias for 23 mm in one time. That is way to much to do in once but it had to be done otherwise the rod could not fit. With that knowledge I was a little more relaxed and actually started to fall asleep. So I got my first hours of good sleep that night.
The following days were normal my pain was getting less and I was getting a little more mobile, but still I was getting moody from all those days in the hospital and not doing stuff.
On one night I decided to go to the toilet, I only had used a bed pan and had a catheter. So I called the nurse and asked if two of them could help me. Those were orders from the doctor I could only get out of bed with two other people. But the nurses didn’t see why so I only got one, that was a big mistake on my part that I still did it. Getting out of bed was oké but the transfer went wrong I actually don’t really know what happened but I know that I was in quite a lot of pain. I felt my right leg shift because I could not support my weight anymore so I helped to the nurse to catch me but too late. My right leg got the hit of it. A hour after that the pain ebbed away so my concern was getting less and less, in the morning I told the doctor what happened and we went for a x ray. One of my screws came loose. So another surgery…
Surgery number three
This one was small and only took like a hour so I was back in no time, the pain was minimal and I immediately saw improvement with the shape of my ankle. The next morning I could finally be in my wheelchair so I went out to get some fresh air. That was the highlight of my stay. The next day I was discarded after being in the hospital for 16 days.
Firsts weeks home:
Because of that I had those extra surgeries I was not mobile in any way, so we got a transfer thing to get me from my bed to the cough and to the bathroom. My mom was taking care of me and I felt like a child again, I had to ask everything and could not do anything. So I was a little down, there were some shed tears. But I was determined to get better so I got my walker and did 10 steps that was one heck of a milestone if you ask me. The pain was worse afterwards but I did not mind. A lot of Netflix was watched and I got a lot of visitors so that is what got me through the first week. I also got pt every other day, I was still really flexible in my hamstrings but my knees were a little stiff. So I’m doing stretches to prevent it from getting worse. Just a few days ago I had an appointment with the rehabilitation doctor and we figured it was best if I went to a rehab clinic to get better because I’m way behind schedule.
That was my update
Some keynotes:
- I take over the counter painkillers every 6 hours, only take oxy when I cannot fall asleep from the pain. I get blood thinner shot every night and take antibiotics for a wound that was infected a week ago.
- Sleep is getting better only tonight not so much seeing that I have woken up in the middle of the night and Connor fall asleep again. I get two to four hours of sleep then I wake up normally to pee or that I have pain when I have pain I take a half of the oxy that make me drowsy and then I get another 3/4 hours.
If anyone has questions please ask. I will upload my x rays on one of these days.
This week I also have a consult with my doctor to see how it’s going.
I want to tell my experience with LL and how I’m doing right now. Just a little over a month ago I went under surgery to get my legs lengthened. My former height was 134 cm, as you can see I have a form of dwarfism. That’s the reason I was willing to go do such a difficult surgery. I will not be disclosing where I did the surgery seeing that I’m quite recognizable with my form of dwarfism, just know I did it in the west side of Europe.
Now for my story:
We have to go back to two years ago, I was so willing to get a little taller. Just so that I could drive a normal car, have some more freedom and can overall just live a much more normal live. I didn’t want to do it to look better or for the social aspect. Seeing that I would still be on the shorter side. So there I went to my surgeon, he did LL but only the medical necessary kind. Because of dwarfism could be one of his cases. But during the consultation they asked me some weird questions that led them to believe that I was depressed (I was definitely not). During those six months I went to look for a different doctor, in one of my close by neighboring countries there was a specialized doctor that did the Ilizarov method. So he was willing to do it but I was not the biggest fan of that method. After our consultation I went to look for another doctor and I came out with my current doctor. He was more than willing to do it also said to me that the other doctor was really close minded and indeed saw my reasoning for doing this surgery. He was specialized in fitbone, after finding out about the cases with fitbone I don’t know if I would go for that again.
You are probably thinking why is she telling all of this nonsense, just to give you a perspective that LL is not something that is easy and you can just go for it.
About a month back;
I was so super excited to get my surgery I can finally be a little taller and live a somewhat more normal life. The morning of the surgery I was getting prepared by one of the assistents she was really kind and was also so happy for me. Getting all the pre op information I was then brought into the operation room. Seeing that I have quite a good relationship with my doctor we were making jokes and there was just an overall relaxed atmosphere. The anesthesiologist couldn’t find a vain to put the iv in, that is something that is normal for people with dwarfism. So they put me under with a mouth breather. I was gone in like a couple of seconds. Just shy of 8 hours later I woke up again, this was still in the operation room. So I heard the doctor tell one of the residents to schedule the next surgery. My instincts were going off with that statement. But still being so high from the anesthesia I could not form coherent sentences. So I asked the nurse that was with me a few minutes later why they were saying I needed to do a different surgery. She couldn’t disclose that information so the doctor was called. He explained that my femurs were perfectly executed. But my tibias were a problem. My bones were to short for the rod. We made x rays and stuff leading up to the surgery so it should’ve all have fit. My ankles were also not straight that’s were they wanted to get the extra cm from, so they straightened them, only my muscles were so used to the way that my ankle was standing he could not get the extra cm he prepared for. So there I went laying in my bed for five days waiting for the next surgery. I could not move my leg that was strictly forbidden seeing that he had to put the rod inside because of the broken bones. That resulted in the rod sticking out for 3 mm. I didn’t have a lot of pain, only laying in bed for five days straight was getting to me.
Second surgery:
The day of the second surgery I was again so excited, this was putting me back from the actual recovery and I was done with being only bed ridden. The pre op went a little the same but this time they did find a vein. After the surgery I got the memo that it all went well, I was over the moon. Only my pain went from a 3/10 (before Seco d surgery) to a 10/10. They gave me all the medication they could give but nothing worked. I was in a lot of pain for like 3/4 days. No sleep was getting to me I thing I slept like 2 hours every day. Nothing helped with the pain so I was just a sort of surviving I cursed everyone out (not really, only myself) and I did not eat for all those days. With not eating and losing quite some blood I had a hard time breathing on one of those days, my saturation was below 80 so I got a breathing tube. That helped so much and I could get like an extra hour of sleep. On the 3 day another doctor came to visit me he was quite concerned about my level of pain and the symptoms that I had. That made him question if I had compartment syndrome. I have a background in medicine so I knew what he was revering to and I was not happy with his conclusions. They scheduled a emergency surgery for the evening seeing that I had just eaten something for the first time in 3 days. In those six hours the doctor came to check on me quite often and he did some tests. That made him question his own findings so he called my actual doctor. I did not have compartment syndrome!! The problem was that they lengthened my tibias for 23 mm in one time. That is way to much to do in once but it had to be done otherwise the rod could not fit. With that knowledge I was a little more relaxed and actually started to fall asleep. So I got my first hours of good sleep that night.
The following days were normal my pain was getting less and I was getting a little more mobile, but still I was getting moody from all those days in the hospital and not doing stuff.
On one night I decided to go to the toilet, I only had used a bed pan and had a catheter. So I called the nurse and asked if two of them could help me. Those were orders from the doctor I could only get out of bed with two other people. But the nurses didn’t see why so I only got one, that was a big mistake on my part that I still did it. Getting out of bed was oké but the transfer went wrong I actually don’t really know what happened but I know that I was in quite a lot of pain. I felt my right leg shift because I could not support my weight anymore so I helped to the nurse to catch me but too late. My right leg got the hit of it. A hour after that the pain ebbed away so my concern was getting less and less, in the morning I told the doctor what happened and we went for a x ray. One of my screws came loose. So another surgery…
Surgery number three
This one was small and only took like a hour so I was back in no time, the pain was minimal and I immediately saw improvement with the shape of my ankle. The next morning I could finally be in my wheelchair so I went out to get some fresh air. That was the highlight of my stay. The next day I was discarded after being in the hospital for 16 days.
Firsts weeks home:
Because of that I had those extra surgeries I was not mobile in any way, so we got a transfer thing to get me from my bed to the cough and to the bathroom. My mom was taking care of me and I felt like a child again, I had to ask everything and could not do anything. So I was a little down, there were some shed tears. But I was determined to get better so I got my walker and did 10 steps that was one heck of a milestone if you ask me. The pain was worse afterwards but I did not mind. A lot of Netflix was watched and I got a lot of visitors so that is what got me through the first week. I also got pt every other day, I was still really flexible in my hamstrings but my knees were a little stiff. So I’m doing stretches to prevent it from getting worse. Just a few days ago I had an appointment with the rehabilitation doctor and we figured it was best if I went to a rehab clinic to get better because I’m way behind schedule.
That was my update
Some keynotes:
- I take over the counter painkillers every 6 hours, only take oxy when I cannot fall asleep from the pain. I get blood thinner shot every night and take antibiotics for a wound that was infected a week ago.
- Sleep is getting better only tonight not so much seeing that I have woken up in the middle of the night and Connor fall asleep again. I get two to four hours of sleep then I wake up normally to pee or that I have pain when I have pain I take a half of the oxy that make me drowsy and then I get another 3/4 hours.
If anyone has questions please ask. I will upload my x rays on one of these days.
This week I also have a consult with my doctor to see how it’s going.