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

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Posted on Jun 15, 2018, 6:59 pm

#61

Quote from: concernedmom on June 15, 2018, 06:14:21 PMI am very surprised that the doctor did not prescribe blood thinner with this type of surgery. With orthopedic surgeries this is a must. It is scary. Good luck. Also, there are genetic markers that can tell if you are prone to this type of cloths.

He actually prescribes Xarelto (blood thinner) for 21 days pos-op. The problem is that blood thinners doesn't make the blood clots go away, it only helps preventing new ones from forming. What makes it go away is your own body, that will slowly absorb it, and exercising the legs, which will increase the blood flow. And I don't know if the dosage was enough (10mg, 1x a day). For the first 15 days after I was actually diagnosed with DVT, I was put on Xarelto 30mg. Then, for the next couple months, I'll be taking 20mg.

Thanks for the well wishes! Hopefully from now on, things will slowly get better.

BTW: these are my legs a few days after the surgery: https://i.imgur.com/QFDOV4z.jpg. This was actually an improvement. Try to imagine that whole right hamstring and calves completely filled with a much darker color. That's how my right leg was pos-op. So definitely something went wrong there, which probably caused the complications I had :/

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OverrideYourGenetics

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Posted on Jun 15, 2018, 7:35 pm

#62

Wow. Talk about traumatizing

Thanks for sharing, and yeah, enjoy that "born again" feeling! Life-changing moment indeed.

Quote from: fallen774 on June 14, 2018, 04:07:29 PMAnd regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt.

Actually, 180 days after you get your H-1B, it's no longer tied to the company that brought you to the US. I was without a job for about half a year before I got my green card and everything was fine. Look up "AC21 portability" and "I-485 adjustment of status" for details.

Quote from: fallen774 on June 15, 2018, 06:59:33 PMHe actually prescribes Xarelto (blood thinner) for 21 days pos-op.

Dr. Paley prescribes Xarelto 10mg for the entire duration of the lengthening + consolidation. I will have been on it for about 5 months, every day.

Quote from: fallen774 on June 15, 2018, 06:59:33 PMBTW: these are my legs a few days after the surgery: https://i.imgur.com/QFDOV4z.jpg. This was actually an improvement. Try to imagine that whole right hamstring and calves completely filled with a much darker color. That's how my right leg was pos-op. So definitely something went wrong there, which probably caused the complications I had :/

I wouldn't say that large bruises necessarily means something went wrong. Here are my thighs after the tibias surgery:

8cm on femurs - Dr. Mahboubian

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concernedmom

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Posted on Jun 15, 2018, 10:22 pm

#63

Thanks for the info. I have heard other doctors also giving thinners for 21 days. You have gone through a lot. Get well. I am planning a surgery for my son. Really scary to think what could happen. But genetic predisposition also is a factor. He has some genes that make the clothing easy. We will see. You are brave and glad that your mom was there too. Good luck.

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fallen774

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Posted on Jun 16, 2018, 5:55 am

#64

Quote from: Great321 on June 15, 2018, 07:56:07 AMThis was indeed not easy to read. I really feel sorry for your mother...

I'm happy that you're doing better now!

Thank you Great321! It was really hard for her and it still is, but time heals almost anything

Quote from: short2tall on June 15, 2018, 06:48:00 PM Hey fallen, it was indeed tough to read this again, and in even more detail this time. I can imagine how frightened your parents must have been. They are such nice people, you're so fortunate to have them there supporting you (not to mention it saved your life). So glad you're back on track and doing well now. Just keep stretching as much as possible and that will help alleviate the need for Norco, especially at night time. I think it's great that you shared this with everyone to raise awareness about the possible dangers of medication.

Thanks man, it is really good to get all this support. Dude, it was horrible for me but I can't imagine how disturbing and traumatic it must've been for them. I had lunch today with one of the two people that helped me after my mom screamed for help. Turns out he works at the same company as I do and he was really happy and emotional to see that I'm alive and well. F*ck, he told me things I didn't know and probably my mom didn't tell me so it didn't worsen my trauma. He said that I wasn't breathing for way more than 3 minutes, and that she kept doing chest compression for almost 6-8 minutes before I returned breathing. He was so disturbed that week for what he experienced that the next day he went to work and proposed his whole team to do a team offsite to learn how to do CPR. He said he felt guilty because he didn't know how to do it while the other neighbor knew, but he was trying to help me in any way he could. I told him that it didn't matter what he did, he cared and came running to help and helped me in anything that was within his reach or skillset and I'd be grateful for him until the rest of my life. He told me that he did exactly what he would want others to do for him. Such a good person, I think we'll watch some World Cup match together with his girlfriend and my mom sometime soon.

Thank you for such kind words about my parents! They really liked getting to know you too. My dad still talks about that afternoon till today, it was SO important for them to get more real-life stories and experiences of people going through this. Yes, I'm very lucky to have their support in this tough process. I used to tell my mom that she could stay here for just the first few weeks, if she wanted, because I know she has a life in Brazil and I didn't want her to stop her whole life in order to help take care of me for months. My dad couldn't stay here that much because he works, and he was here for my first 3 weeks of surgery and then, when all of this happened, he was calling all his coworkers to arrange his unexpected leave. So yeah, he came again when that happened and stayed an additional 2 weeks, so 5 weeks in total. It was the best thing that happened that week for me and my mom (even more to her, she really needed that support).

Yup, stretching all the time, even at my work desk. And my sole motivation for publishing this was to help raise awareness about those medications. I was reluctant at first because one may read this diary and become discouraged, but the danger of doing LL is like the danger of crossing the street (wait wait, I suck at coming up with analogies but I'll try hard to nail this one). If you cross the street paying attention, you can only get yourself injured by the randomness of external factors. If you cross with your eyes closed, you're not only facing risks independent of you, but you're increasing the odds of getting to the other side completely messed up, or not getting to the other side at all. It's all on you. Follow what the doctors say and if anything bad happens, don't blame yourself, there ARE risks, and there's a solution to most of them. I say most because I keep thinking that my nerve damage is permanent, but it actually might regenerate in the future. Do things blindly and be ready to face the consequences. I learned my lesson.

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Quote from: Great321 on June 15, 2018, 07:56:07 AMThis was indeed not easy to read. I really feel sorry for your mother...

I'm happy that you're doing better now!

Thank you Great321! It was really hard for her and it still is, but time heals almost anything

Quote from: short2tall on June 15, 2018, 06:48:00 PM Hey fallen, it was indeed tough to read this again, and in even more detail this time. I can imagine how frightened your parents must have been. They are such nice people, you're so fortunate to have them there supporting you (not to mention it saved your life). So glad you're back on track and doing well now. Just keep stretching as much as possible and that will help alleviate the need for Norco, especially at night time. I think it's great that you shared this with everyone to raise awareness about the possible dangers of medication.

Thanks man, it is really good to get all this support. Dude, it was horrible for me but I can't imagine how disturbing and traumatic it must've been for them. I had lunch today with one of the two people that helped me after my mom screamed for help. Turns out he works at the same company as I do and he was really happy and emotional to see that I'm alive and well. F*ck, he told me things I didn't know and probably my mom didn't tell me so it didn't worsen my trauma. He said that I wasn't breathing for way more than 3 minutes, and that she kept doing chest compression for almost 6-8 minutes before I returned breathing. He was so disturbed that week for what he experienced that the next day he went to work and proposed his whole team to do a team offsite to learn how to do CPR. He said he felt guilty because he didn't know how to do it while the other neighbor knew, but he was trying to help me in any way he could. I told him that it didn't matter what he did, he cared and came running to help and helped me in anything that was within his reach or skillset and I'd be grateful for him until the rest of my life. He told me that he did exactly what he would want others to do for him. Such a good person, I think we'll watch some World Cup match together with his girlfriend and my mom sometime soon.

Thank you for such kind words about my parents! They really liked getting to know you too. My dad still talks about that afternoon till today, it was SO important for them to get more real-life stories and experiences of people going through this. Yes, I'm very lucky to have their support in this tough process. I used to tell my mom that she could stay here for just the first few weeks, if she wanted, because I know she has a life in Brazil and I didn't want her to stop her whole life in order to help take care of me for months. My dad couldn't stay here that much because he works, and he was here for my first 3 weeks of surgery and then, when all of this happened, he was calling all his coworkers to arrange his unexpected leave. So yeah, he came again when that happened and stayed an additional 2 weeks, so 5 weeks in total. It was the best thing that happened that week for me and my mom (even more to her, she really needed that support).

Yup, stretching all the time, even at my work desk. And my sole motivation for publishing this was to help raise awareness about those medications. I was reluctant at first because one may read this diary and become discouraged, but the danger of doing LL is like the danger of crossing the street (wait wait, I suck at coming up with analogies but I'll try hard to nail this one). If you cross the street paying attention, you can only get yourself injured by the randomness of external factors. If you cross with your eyes closed, you're not only facing risks independent of you, but you're increasing the odds of getting to the other side completely messed up, or not getting to the other side at all. It's all on you. Follow what the doctors say and if anything bad happens, don't blame yourself, there ARE risks, and there's a solution to most of them. I say most because I keep thinking that my nerve damage is permanent, but it actually might regenerate in the future. Do things blindly and be ready to face the consequences. I learned my lesson.

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fallen774

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Posted on Jun 16, 2018, 6:20 am

#65

Quote from: OverrideYourGenetics on June 15, 2018, 07:35:25 PMWow. Talk about traumatizing Thanks for sharing, and yeah, enjoy that "born again" feeling! Life-changing moment indeed.

Actually, 180 days after you get your H-1B, it's no longer tied to the company that brought you to the US. I was without a job for about half a year before I got my green card and everything was fine. Look up "AC21 portability" and "I-485 adjustment of status" for details.

Dr. Paley prescribes Xarelto 10mg for the entire duration of the lengthening + consolidation. I will have been on it for about 5 months, every day.

I wouldn't say that large bruises necessarily means something went wrong. Here are my thighs after the tibias surgery:

Yeah man, hopefully this helps someone. And you're right, I should enjoy this new life -- I already changed my birthdate.
(jk :p)

I knew about the AOS but didn't know about this 180 days rule, that's so helpful to know. I didn't know about AC21 portability though, thanks for telling me about that, I'll look it up.

And as to the bruises, did you have bumps as well? My right leg was very swollen and bumpy, as if there was something there. I also had a tender point, if you touched it I'd want to die, huge pain. My right leg was fked up since day 1, so I still believe something was wrong with it. The bruises eventually went away but the swelling persisted, it got way better but didn't go away completely, so I really think the blood clot was already there before. But I guess I'll never know :p

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fallen774

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Posted on Jun 16, 2018, 6:43 am

#66

Quote from: concernedmom on June 15, 2018, 10:22:48 PMThanks for the info. I have heard other doctors also giving thinners for 21 days. You have gone through a lot. Get well. I am planning a surgery for my son. Really scary to think what could happen. But genetic predisposition also is a factor. He has some genes that make the clothing easy. We will see. You are brave and glad that your mom was there too. Good luck.

No worries! Thanks for the support. I'm glad you are being so supportive to your son. I'm positive that his process will go smoothly. And if he has blood clot predisposition, make sure the doctor knows about that and that he's obviously not taking any blood thinners prior to the surgery. But right after the surgery, having him on blood thinner throughout the process would be safe, I think. They really prevent new thrombosis formation even for people with predisposition, I believe. My sister has it too and she was on Xarelto for a period of her life.

And yes, I'm really glad that I have her here. Please keep us posted of how things go on your side, it's always helpful for people wanting to do LL and having a diary written on the perspective of a mother accompanying the whole process is something I haven't seen here and I think it would be very helpful both for mothers that are supporting their son throughout the process (as in my case) and for future LL'ers to know things from a different perspective. Good luck!

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totallyred

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Posted on Jun 16, 2018, 4:24 pm

#67

Oh dear God, this is the most traumatic and nerve wrecking diary... Honestly as I was reading it, I myself started to sweat and could not calm down, thinking about so many 'what ifs'. Even more serious is that dr did not accept liability for this and did not give enough consideration even after first blood leakage incident. Why don't you talk with dr to compensate for this? Just a humble opinion please consider it thoroughly as for some near future, the same dr would you need in case of any further assistance, so you may not want to degrade your relationship with him.

I commend you for your bravery.Can you please tell did you do something which should not be done? I.e. unnecessary movement or medication or negligence. Was it a cardiac arrest? What exactly was the cause of cardiac arrest? How was it operated? After all this trauma, would you still recommend CLL to others?

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fallen774

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Posted on Jun 16, 2018, 5:17 pm

#68

Quote from: totallyred on June 16, 2018, 04:24:43 PMOh dear God, this is the most traumatic and nerve wrecking diary... Honestly as I was reading it, I myself started to sweat and could not calm down, thinking about so many 'what ifs'. Even more serious is that dr did not accept liability for this and did not give enough consideration even after first blood leakage incident. Why don't you talk with dr to compensate for this? Just a humble opinion please consider it thoroughly as for some near future, the same dr would you need in case of any further assistance, so you may not want to degrade your relationship with him.

I commend you for your bravery.Can you please tell did you do something which should not be done? I.e. unnecessary movement or medication or negligence. Was it a cardiac arrest? What exactly was the cause of cardiac arrest? How was it operated? After all this trauma, would you still recommend CLL to others?

I 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.

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Quote from: totallyred on June 16, 2018, 04:24:43 PMOh dear God, this is the most traumatic and nerve wrecking diary... Honestly as I was reading it, I myself started to sweat and could not calm down, thinking about so many 'what ifs'. Even more serious is that dr did not accept liability for this and did not give enough consideration even after first blood leakage incident. Why don't you talk with dr to compensate for this? Just a humble opinion please consider it thoroughly as for some near future, the same dr would you need in case of any further assistance, so you may not want to degrade your relationship with him.

I commend you for your bravery.Can you please tell did you do something which should not be done? I.e. unnecessary movement or medication or negligence. Was it a cardiac arrest? What exactly was the cause of cardiac arrest? How was it operated? After all this trauma, would you still recommend CLL to others?

I 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.

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Purushrottam

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Posted on Jun 16, 2018, 8:35 pm

#69

Quote from: fallen774 on June 14, 2018, 04:07:29 PMHey, so glad to hear from you, you were one of my inspirations to go through this. Yes, I won't be taking any risks from now on. And let me emphasize this, I wasn't taking any risks for most part of the lengthening. I was down to 1-2 Norcos a day, Vitamin D and Calcium, only. I made those mistakes from around May 17th to the day of the accident, May 29th, so for 12 days I was dumb as f*ck risking my health blindly to try to be more productive. At the end, it did the opposite, as I ended up missing a week of work because of that. If you asked me then if I thought something like this could happen, I'd say "of course not". I didn't know at all and didn't even think it was something that important to ask the LL doctor. I was honest with the psychiatrist regarding the medication I was taking (opioids) and I only heard a "be careful with these medications". She didn't emphasize on the danger of interactions so I didn't even bother asking someone else or looking it online. But I regret this so much now...

Anyways, I'm less than 2 weeks away from stopping lengthening and I made a promise to my parents that I wouldn't take any medication from that day on. I'm not taking any anxiolytic, or ADHD medication, or opioids. It's the least I could do for me and for them. Even Tylenol, it's the only exception we agreed on but at most 2 a day, but I'm not taking any. So I'm dealing with pain and it's increasing as I reach the end, but I can handle it. I feel like I was born again and I have more energy than ever. I'm really grateful to be alive and I won't mess up by any chance. And regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt. But honestly, it was all in my head. My company is being EXTREMELY supportive and with all the benefits I have, I don't want to leave it. The health insurance I have was provided by the company and it paid half of the surgery cost, which is a lot. I really want to stay here, at least for a couple more years.

Thanks for the message and hope you're doing great!

EDIT: correcting myself, I'm waiting for Dr. Mahboubian's Gabapentin prescription to arrive, and I'll actually be taking it for the nerve pains, but he said it's safe.

I'm glad to hear that! I was surprised to read that coming out as gay to your parents was easier than convincing them to accept this surgery. This is why so many people wish to keep the fact that they had this surgery secret.

I was totally unaware of your H1B situation. I know several people on H1Bs messaged me about how they could have a break for LL while on that visa. I think your diary has valuable information in that regard.

Good luck with everything!

Edit Post

Quote from: fallen774 on June 14, 2018, 04:07:29 PMHey, so glad to hear from you, you were one of my inspirations to go through this. Yes, I won't be taking any risks from now on. And let me emphasize this, I wasn't taking any risks for most part of the lengthening. I was down to 1-2 Norcos a day, Vitamin D and Calcium, only. I made those mistakes from around May 17th to the day of the accident, May 29th, so for 12 days I was dumb as f*ck risking my health blindly to try to be more productive. At the end, it did the opposite, as I ended up missing a week of work because of that. If you asked me then if I thought something like this could happen, I'd say "of course not". I didn't know at all and didn't even think it was something that important to ask the LL doctor. I was honest with the psychiatrist regarding the medication I was taking (opioids) and I only heard a "be careful with these medications". She didn't emphasize on the danger of interactions so I didn't even bother asking someone else or looking it online. But I regret this so much now...

Anyways, I'm less than 2 weeks away from stopping lengthening and I made a promise to my parents that I wouldn't take any medication from that day on. I'm not taking any anxiolytic, or ADHD medication, or opioids. It's the least I could do for me and for them. Even Tylenol, it's the only exception we agreed on but at most 2 a day, but I'm not taking any. So I'm dealing with pain and it's increasing as I reach the end, but I can handle it. I feel like I was born again and I have more energy than ever. I'm really grateful to be alive and I won't mess up by any chance. And regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt. But honestly, it was all in my head. My company is being EXTREMELY supportive and with all the benefits I have, I don't want to leave it. The health insurance I have was provided by the company and it paid half of the surgery cost, which is a lot. I really want to stay here, at least for a couple more years.

Thanks for the message and hope you're doing great!

EDIT: correcting myself, I'm waiting for Dr. Mahboubian's Gabapentin prescription to arrive, and I'll actually be taking it for the nerve pains, but he said it's safe.

I'm glad to hear that! I was surprised to read that coming out as gay to your parents was easier than convincing them to accept this surgery. This is why so many people wish to keep the fact that they had this surgery secret.

I was totally unaware of your H1B situation. I know several people on H1Bs messaged me about how they could have a break for LL while on that visa. I think your diary has valuable information in that regard.

Good luck with everything!

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OverrideYourGenetics

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Posted on Jun 17, 2018, 1:50 am

#70

Quote from: fallen774 on June 16, 2018, 06:20:00 AMAnd as to the bruises, did you have bumps as well?

No bumps or excessive pain.

Quote from: Purushrottam on June 16, 2018, 08:35:56 PMI know several people on H1Bs messaged me about how they could have a break for LL while on that visa.

Even if those people aren't US permanent residents, FMLA should cover them if they've worked for the company for more than a year and other eligibility criteria are met. Of course, it's good to have the Adjustment of Status filed as a backup. So TL;DR - FMLA, AOS, AC21, IANAL and consult a lawyer

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