8cm on femurs - Dr. Mahboubian - Limb Lengthening Community

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Posts: 318

Joined: May 2018

Posted on Jun 17, 2018, 5:48 am

#71

Quote from: fallen774 on June 16, 2018, 05:17:09 PMI don't think there's a reason for compensation, I signed a bunch of agreements and accepted all these possible risks. He is a great doctor and maybe overlooked this issue, but he has been very supportive throughout the whole process. And again, he has an opinion as to what he thinks happened from his point of view, and I have mine based on my symptoms and what other doctors said, so we can never know what really happened and where things went wrong.

As to what should not be done, you should not omit anything you're doing from your surgeon. If you'll start taking something, let him know. I got prescribed X by one doctor and Y by the doctor and they weren't aware of the medications I was taking and I didn't mention them, out of ignorance, so don't do that. And if you do that, make sure you know about the interactions of those medications. I stopped breathing and then had a cardiac arrest, during my sleep, due to medication interactions OR pulmonary embolism. There're doctors that think the reason was interactions and others that think the reason was pieces of blood clot going to my lungs. I'll never know for sure but I like to live believing that it was medication interactions, since it's something I can control. I don't like to think it was PE because I have no control over this.

Thanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?

Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!

Edit Post

Quote from: fallen774 on June 16, 2018, 05:17:09 PMI don't think there's a reason for compensation, I signed a bunch of agreements and accepted all these possible risks. He is a great doctor and maybe overlooked this issue, but he has been very supportive throughout the whole process. And again, he has an opinion as to what he thinks happened from his point of view, and I have mine based on my symptoms and what other doctors said, so we can never know what really happened and where things went wrong.

As to what should not be done, you should not omit anything you're doing from your surgeon. If you'll start taking something, let him know. I got prescribed X by one doctor and Y by the doctor and they weren't aware of the medications I was taking and I didn't mention them, out of ignorance, so don't do that. And if you do that, make sure you know about the interactions of those medications. I stopped breathing and then had a cardiac arrest, during my sleep, due to medication interactions OR pulmonary embolism. There're doctors that think the reason was interactions and others that think the reason was pieces of blood clot going to my lungs. I'll never know for sure but I like to live believing that it was medication interactions, since it's something I can control. I don't like to think it was PE because I have no control over this.

Thanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?

Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!

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OverrideYourGenetics

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Posts: 243

Joined: Sep 2017

Posted on Jun 17, 2018, 7:28 pm

#72

fallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?

How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike under the desk to help with knee flexibility and range of motion?

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patientprivacy

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Posts: 303

Joined: Aug 2017

Posted on Jun 17, 2018, 9:08 pm

#73

Quote from: OverrideYourGenetics on June 17, 2018, 07:28:58 PMfallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?

How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike under the desk to help with knee flexibility and range of motion?

Yes it's possible. I used to go from home to work and back with help of relatives. Some colleagues helped at work and some were comtemptuous, like everywhere in life. I used my wheelchair at my desk. I didn't use a stationary bike at work, but at home.

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fallen774

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Posts: 158

Joined: Dec 2017

Posted on Jun 21, 2018, 11:27 pm

#74

Quote from: OverrideYourGenetics on June 17, 2018, 07:28:58 PMfallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?

How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike under the desk to help with knee flexibility and range of motion?

Everybody was super supportive here and treated me no different than they treated before, so you should expect no difference as well! You definitely get a lot of people looking but very few of them (and if they know you) will ask you what happened. I've also felt that going on a walker was more intimidating than going on a wheelchair. On a wheelchair people will look and think "must've broken his legs, normal stuff, will be over it soon.". On a walker people will look and wonder "why the hell this young guy needs a walker? I only see elderly using that. Something very weird must've happened.". At least that's what I got by occasionally asking some friends what did they think at first when they saw me like that :p
In order to get to lunch I'd always go on my walker and with coworkers, and ask them to help me to help me with my food. I'm pretty close to a few of my coworkers so it wasn't hard, but I also thought about how I would handle that. If you go on your wheelchair you don't need to worry about that and probably the workers in the restaurant would help you with your plate. My work is open office and it's very accessible, so I just put my chair far away from my desk and was using the wheelchair as my seat when I was coming on the wheelchair. And yes, I also brought my stationary bike (pedals) to work so I use them whenever I'm seated, this was mainly because of my blood clots but they should help overall.
In general, being in California, don't think people will care that much, they're usually busy minding their own problems. I didn't see it at first but then I realized that in the same way I was constantly worried about how they would see me, they're probably worrying about how others will see them as well. Yes, there are people that see you and mentally judge you and 5 seconds later they forgot about you. It doesn't aggregate anything to our lives. And no matter how nervous you get, when you get home and you're by yourself, you're going to forget everything about it. Every day you'll just have to handle it and by the time you sit on your desk you'll be over it. And then there will be the day when you're cleared to walk and you'll no longer remember that struggle. That's how I'm dealing with it :-)

Hope it helps.

Edit Post

Quote from: OverrideYourGenetics on June 17, 2018, 07:28:58 PMfallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?

How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike under the desk to help with knee flexibility and range of motion?

Everybody was super supportive here and treated me no different than they treated before, so you should expect no difference as well! You definitely get a lot of people looking but very few of them (and if they know you) will ask you what happened. I've also felt that going on a walker was more intimidating than going on a wheelchair. On a wheelchair people will look and think "must've broken his legs, normal stuff, will be over it soon.". On a walker people will look and wonder "why the hell this young guy needs a walker? I only see elderly using that. Something very weird must've happened.". At least that's what I got by occasionally asking some friends what did they think at first when they saw me like that :p
In order to get to lunch I'd always go on my walker and with coworkers, and ask them to help me to help me with my food. I'm pretty close to a few of my coworkers so it wasn't hard, but I also thought about how I would handle that. If you go on your wheelchair you don't need to worry about that and probably the workers in the restaurant would help you with your plate. My work is open office and it's very accessible, so I just put my chair far away from my desk and was using the wheelchair as my seat when I was coming on the wheelchair. And yes, I also brought my stationary bike (pedals) to work so I use them whenever I'm seated, this was mainly because of my blood clots but they should help overall.
In general, being in California, don't think people will care that much, they're usually busy minding their own problems. I didn't see it at first but then I realized that in the same way I was constantly worried about how they would see me, they're probably worrying about how others will see them as well. Yes, there are people that see you and mentally judge you and 5 seconds later they forgot about you. It doesn't aggregate anything to our lives. And no matter how nervous you get, when you get home and you're by yourself, you're going to forget everything about it. Every day you'll just have to handle it and by the time you sit on your desk you'll be over it. And then there will be the day when you're cleared to walk and you'll no longer remember that struggle. That's how I'm dealing with it :-)

Hope it helps.

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fallen774

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Posts: 289

Joined: Dec 2017

Posted on Jun 22, 2018, 12:02 am

#75

Quote from: totallyred on June 17, 2018, 05:48:15 AMThanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?

Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!

Hey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.

Edit Post

Quote from: totallyred on June 17, 2018, 05:48:15 AMThanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?

Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!

Hey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.

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fallen774

Member

Posts: 19

Joined: Dec 2017

Posted on Jun 22, 2018, 12:33 am

#76

I stopped lengthening yesterday at 7cm, on my 77th day post-op. Now, on to consolidation. Will be seeing Dr. Mahboubian on July 3rd.
(sorry about the title guys, and no, this is not a journal of someone going up to 8cm and proving it's safe and living happily after that with no major consequences; quite on the contrary, if you're reading this, I don't recommend going that far!)

Let me just say that some time ago I made a post here saying that I would stop when any of the following happened: I was either getting disproportional OR couldn't stand some unbearable pain OR met the technical maximum of 8cm. Funny that I stopped before any of those happened. I wasn't in pain when making the decision, I wasn't disproportional (took pictures and showed friends who didn't know about the surgery), my range of motion was very good, I could easily straighten my legs and I think I could make it to 8cm. I decided to stop early first for my family, it's the least I could do for them after all this stress and my mom couldn't bear the noise of the ERC anymore, she blames it for everything that happened and I understand. Second, for my own safety. I had many people telling me to stop earlier, even Dr. Mahboubian. He advised me to stop at 5cm because it would be safer in order to get the sensation back, and said that going further would just make it unlikely for me to feel my lower left leg ever again. I ignored. Then, at 6cm, Dr Mahboubian advised me once again to stop because it could narrow my veins and I had blood clots. Once again I was reckless and ignored. On our last conversation, he told me to go at most 7.5cm and that the extra 0.5cm wouldn't make up for all the extra risks. So when reaching 7cm I realized how much of all the bad things that happened could've been prevented if I only listened and didn't ignore. Coming to this point was risky enough after my own doctor advised me to stop several times, so what would happen if I went up to 8cm? If anything bad happened I'd mostly get a bunch of "I told you so". And what if I went up to 7.5cm and had a pulmonary embolism? Or not only lose my sensation on the left shin but also never get rid of the nerve pain? I'm on Gabapentin right now so I have no idea how bad it will be when I stop taking it. For the first time in this process, I don't want to risk more, I want to be cautious and actually have the health to enjoy the outcomes of this huge surgery. I don't want to screw up this second chance. And, after all, I'm very happy with the result -- I'm not talking about my final height, but my changed mindset. I don't feel bad or think about height anymore, so I guess my height neurosis is gone and that's all I wanted to achieve.

But speaking of numbers, I'll disclosure them anyways. I actually started at 5'5.5, so my height now is 5'8.2, or simply 5'8 :p. Not the 5'9 that I expected initially but I would never have reached it anyways, the max I'd be able to achieve was 5'8.5. Can't complain about anything, this journey was hell a couple of times, but it was mostly a blessing.

Edit Post

I stopped lengthening yesterday at 7cm, on my 77th day post-op. Now, on to consolidation. Will be seeing Dr. Mahboubian on July 3rd.
(sorry about the title guys, and no, this is not a journal of someone going up to 8cm and proving it's safe and living happily after that with no major consequences; quite on the contrary, if you're reading this, I don't recommend going that far!)

Let me just say that some time ago I made a post here saying that I would stop when any of the following happened: I was either getting disproportional OR couldn't stand some unbearable pain OR met the technical maximum of 8cm. Funny that I stopped before any of those happened. I wasn't in pain when making the decision, I wasn't disproportional (took pictures and showed friends who didn't know about the surgery), my range of motion was very good, I could easily straighten my legs and I think I could make it to 8cm. I decided to stop early first for my family, it's the least I could do for them after all this stress and my mom couldn't bear the noise of the ERC anymore, she blames it for everything that happened and I understand. Second, for my own safety. I had many people telling me to stop earlier, even Dr. Mahboubian. He advised me to stop at 5cm because it would be safer in order to get the sensation back, and said that going further would just make it unlikely for me to feel my lower left leg ever again. I ignored. Then, at 6cm, Dr Mahboubian advised me once again to stop because it could narrow my veins and I had blood clots. Once again I was reckless and ignored. On our last conversation, he told me to go at most 7.5cm and that the extra 0.5cm wouldn't make up for all the extra risks. So when reaching 7cm I realized how much of all the bad things that happened could've been prevented if I only listened and didn't ignore. Coming to this point was risky enough after my own doctor advised me to stop several times, so what would happen if I went up to 8cm? If anything bad happened I'd mostly get a bunch of "I told you so". And what if I went up to 7.5cm and had a pulmonary embolism? Or not only lose my sensation on the left shin but also never get rid of the nerve pain? I'm on Gabapentin right now so I have no idea how bad it will be when I stop taking it. For the first time in this process, I don't want to risk more, I want to be cautious and actually have the health to enjoy the outcomes of this huge surgery. I don't want to screw up this second chance. And, after all, I'm very happy with the result -- I'm not talking about my final height, but my changed mindset. I don't feel bad or think about height anymore, so I guess my height neurosis is gone and that's all I wanted to achieve.

But speaking of numbers, I'll disclosure them anyways. I actually started at 5'5.5, so my height now is 5'8.2, or simply 5'8 :p. Not the 5'9 that I expected initially but I would never have reached it anyways, the max I'd be able to achieve was 5'8.5. Can't complain about anything, this journey was hell a couple of times, but it was mostly a blessing.

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totallyred

Member

Posts: 293

Joined: May 2018

Posted on Jun 22, 2018, 6:57 am

#77

Quote from: fallen774 on June 22, 2018, 12:02:26 AMHey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.

God bless you and all CLLers....

Edit Post

Quote from: fallen774 on June 22, 2018, 12:02:26 AMHey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.

God bless you and all CLLers....

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M

myloginacc

Member

Posts: 468

Joined: May 2018

Posted on Jun 22, 2018, 10:18 am

#78

I have no words that I can use after all you went through. I'm just extremely glad you are alive.

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T

totallyred

Member

Posts: 228

Joined: May 2018

Posted on Jun 22, 2018, 11:14 am

#79

Have you read pulmonary embolism in wiki? It's written clearly if legs show redness and swelling, it is very likely to be a case of deep vein thrombosis and thrombosis is one of the main cause of blood clot and eventually PE. Why did your dr did not take any note of your red or even maroon-blackish legs and ordered ultrasound then and there.

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fallen774

Member

Posts: 67

Joined: Dec 2017

Posted on Jun 24, 2018, 1:29 am

#80

Quote from: totallyred on June 22, 2018, 11:14:44 AMHave you read pulmonary embolism in wiki? It's written clearly if legs show redness and swelling, it is very likely to be a case of deep vein thrombosis and thrombosis is one of the main cause of blood clot and eventually PE. Why did your dr did not take any note of your red or even maroon-blackish legs and ordered ultrasound then and there.

I know I write a lot, so maybe you missed when I explained why I think he did that. I said it in 2 posts. Now as to the real reasons, I'd have to get in his head.

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8cm on femurs - Dr. Mahboubian

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