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[MarkE]

DAY 46

Wanted to come back and update everyone. Went for a post-op visit last week. Bone growth is going great. Leakage is still there, but it seems to be looking better than it was. I can still feel it in my legs causing pressure, but it's getting harder to touch with my fingers from the outside. It's not sticking out as much, either because it's getting smaller, or because my increased muscle mass is making it harder to locate. Either way, I'm trying not to stress about it. I still push on it and roll it each day, just like I have been. Dr. M said to keep doing what I've been doing, and if it hasn't gone away in the end, he'll just remove it when he removes my nails.

I have a question about growth rate - maybe someone here can give some insight. My wife and I have been measuring my height every two weeks on the wall, just to see what's happening. I know it's inexact, but we're pretty careful. Last week we measured on the day that marked 5 Weeks of lengthening. The measurement showed that I had gained just under 1.75" (4.45 cm). We thought this couldn't be right, so when we got to Dr. M's office, I asked the nurse if she could measure me properly with their equipment. When she did, it showed the exact same result. 1.75" in five weeks. Isn't the growth rate supposed to be 1/4" per week? Which would mean in five weeks I should have gained 1.25" inches. But here I am almost half and inch ahead of that. Theoretically I shouldn't have hit this point until 7 weeks, correct? (And the reality is, I have a noticeable bend in my legs that I can't quite straighten, so if I COULD straighten it, I would have measured even taller. So it's safe to assume it was probably over 1.75"). Anyway, maybe I'm just unclear on the rate of progress issue.

Is this kind of external measuring even valid during this process? Could the extra height be due to swelling or some other factor that will go down post healing? I know my starting height was accurate. No debating that. If I continue to grow at this rate, I should hit 2 inches (5 cm) of growth on the wall later this week. Did other people on here grow faster than expected? Or is this just some sort of weird measurement fluke/error that will sort itself out in the end?

In other areas, I'm having a horrible time sleeping. Much worse than before. It's really wearing me down. The pain in my right leg and right knee wake me up over and over again all through the night. I sleep for about 15 minutes max at a time. Then I have to sit up, move around a little, and settle back in and try again. The entire night is broken up this way. It's really taking a toll on me.

Some leg issues that I was struggling with before have cleared up, while others have taken their place. This is something I've figured out about this process. There is always something new. Some new problem. In normal life, we're accustomed to having an issue, working on that issue, and then watching that issue clear up as things return to normal. When you start seeing an improvement in that problem, you understand that you are moving toward normalcy. That isn't how things work during LL. One problem will start to clear up, making you feel like you're making real progress, and then BOOM - a new problem presents itself and you now have to deal with THAT issue. You get to the point where you're not surprised by ANY new pain showing up. It's just part of the journey. And you learn to deal with it.

Definitely not walking unassisted anymore at this point. The pain issue and marked bend in my right leg have made that a less-than-safe option right now. My right leg is less stable than it was before. I either use a cane or my crutches to get around. I CAN go unassisted for short distances if I really need to. It's just painful and awkward.

Anyway, in just a few days I hit the 6-weeks of lengthening mark. Theoretically that is the halfway mark in all this, depending on how far I go. Spirits are still okay, though I do dip down some days, especially with diminished sleep. But I feel like I'm getting by okay. I can sit and work at the computer for quite a while when I'm having a good day.

I'll keep coming back with more updates when I can. Hope it helps others who are considering the procedure.

[TheAlchemist]

Great update and yes, the LL journey is a roller coaster with surprises along the way. At a certain point I just accepted  it and tried to be as flexible as possible with whatever came my way, taking it one day at a time. Once you get past distraction, it becomes progressively better every day.

On growth rate I experienced a similar trend although not as big of a difference as yours, I was probably a quarter of an inch ahead of where I thought I'd be based on my ERC. I attribute that to:

-Surgery op added length - On surgery day, at Paleys they supposedly lengthen the nail a bit to make sure it is functioning. I've been quoted 1 mm by one of the doctors, but I've heard cases where they've done up to 0.5 cm. Might be worth asking Dr. M if he lengthened the nail at all as part of your operation to test the nail, before you even ran the ERC.

-Height variability - Height varies by day and can fluctuate up to an inch. Generally tallest in the morning. I tried to measure height under the same conditions but its hard to precisely measure.

[BetzLandLiberator]

-Height variability - Height varies by day and can fluctuate up to an inch. Generally tallest in the morning. I tried to measure height under the same conditions but its hard to precisely measure.

This. I actually measured my height variation some years ago (I bought a cheap but precise stadiometer for that) and I was surprised by how much my height varied.
Post LL, I'm usually around 174,5cm around noon, but depending of how much I slept in the night before I can wake up with a height varying from 175cm to 176cm.
And late at night (post 11PM) I'm usually at 174cm, but there was a day after a heavy weightlifting workout I got down to 173,5cm.

[Mule]

DAYS 21 - 28

I went in for my 3-week post-op appointment with Dr. M. He finally took x-rays. The news wasn’t great. There were two problems

1) First issue isn’t so bad. Left leg is lagging behind the right leg. This discrepancy isn't apparent when looking at my legs, but he says the x-ray doesn't lie. I was told I needed to move back up to 4 times per day on my left for two weeks to catch up. I have more range of motion in this leg, and Dr. M explained that this is because it hasn’t been stretched as much as my right one. He is hoping the bone hasn’t consolidated too much already. This issue was due to the fact that the line they mark on your leg with Sharpie (to show where to place the ERC machine) actually moves as the skin stretches. Eventually, if it moves enough, when you place the machine on that line, you won’t actually be on the right spot, and the nail won’t be activated properly. Dr. M used a compass to relocate the proper area, and a new line was made. Somehow, the original line had moved quite a bit and had been off.

2) This second issue is much worse. Apparently, at some point post-surgery, my osteotomy site on that leg “leaked” bone marrow or some kind of “bone juice”. This material traveled into my thigh muscles and has started consolidating. Yes, as the x-ray shows, I have bone growing sideways into my thigh muscle. I have never heard of this in all the journals I read, and it’s horrifying. I had noticed something hard starting to poke out from under my incision site on the side of my left thigh. But I just assumed it was dense scar tissue or maybe an internal suture that hadn’t dissolved. It never in a million years would have crossed my mind that it would be fu*king bone. It had grown so far that it was literally trying to poke out of my incision. Once Dr. M showed me the x-ray and then pushed on the bone, it dawned on me what was happening and I was kind of in shock.

He says that he has seen this happen several times (though he didn’t specify if it was with LL patients), and that there’s a 90 percent chance that if I repeatedly press hard on this new bone, it will gradually break down and the body will absorb it. Seemed hard to believe at the time, since this felt like legitimate, dense, hard bone already. But, I’m trying to stay positive and trust what Dr. M says. So, for this last week, I have been obsessively messing with this bone. I’ve been rubbing it, pushing on it, rolling a tennis ball over it, rubbing an empty bottle over it, using the massage gun to pound on it. Literally anything I can do to put pressure on it.

Fortunately, I have seen some reduction in the size (particularly the little “horn” that was trying to poke out of my incision site), but there still are some significant chunks under there. I can actually reach down deep and grab the pieces of bone and sort of move them around and squeeze them. It’s like rocks floating within my muscles. And when I bend my leg, I can feel them being squeezed by the muscle, which is an awful feeling. He explained that if this bone isn’t absorbed into the body, I would have to have another surgery to have that bone removed. He also said we want to avoid this at all cost, since it results in a lot of muscle damage.

So yeah, I’m a bit freaked out by this. I already had enough to worry about and pay attention to with this whole process. But now, I feel paranoid if I’m not using every spare second to press on this bone. I really don’t want to have another surgery that could potentially result in permanent damage.

Has anyone else had any experience with this issue?

Hi,

I remember having something similar to this, it felt like hard lumps near my incision sites. It just went away relatively quickly

[amandasolomon]

Hello!

I hope all is well. I work with Dr. Mahboubian and I have spoken with him about your surgery. I want to clarify that you were in no way forced to have the surgery. We had full conversations with you about the timing of your surgery when you decided you wanted to move forward at the beginning of the shutdown. There were no closures of the hospital during the time your surgery was scheduled. Therefore, we decided together to move forward with the surgery. Thanks for your time!

[Arcon]

... And yes, I tried to postpone the surgery until after the pandemic, but was informed that I was going to lose all the money I had paid.

Hi Mark, wishing you a speedy recovery ...Do you mean that you would lose just any deposit you had paid or the full sum? 

[heightadd1]

Wishing you speedy recovery Mark. Thanks for the detailed posts. I'm also going with Mahboubian this summer

[MarkE]

I work with Dr. Mahboubian and I have spoken with him about your surgery. I want to clarify that you were in no way forced to have the surgery.

Hi, thanks for your comment. I’m sorry if the language of my original post was misleading. Let me clarify:

Nobody forced me to do this surgery; nobody has that authority. From start to finish, the decision was mine, and I never meant to imply otherwise.

When I first consulted Dr. M about the procedure, the world was in a very different place. The full reality of the Corona crisis hadn't really dawned yet. I decided to move forward and paid my money in full. I was looking forward to getting the surgery underway.

However, as my surgery day drew nearer, the world began waking up to a darker new reality. Terrifying reports were coming in from Italy, and Americans received notice that we too were moving into lockdown for an unspecified amount of time. We had no idea how bad things might get.

I didn’t like the idea of my wife and children being stuck in some apocalypse scenario while I was basically a helpless body with two broken legs. So I inquired if it was possible to delay my surgery for a while until all the Covid-19 drama blew over. This is when I was informed that if I tried to reschedule, I would lose all of the money I had paid. It was simply hospital policy.

There’s no way I was walking away from $65,000. Yes, I could have walked away if I really wanted to. But I decided to move forward with the surgery, even with an uncertain future. And I made that decision myself.

And I’m pleased to report that I’m very happy with that decision. Yes, it’s painful. It is a massive mental and physical challenge, and I have developed a new understanding of my relationship to pain (and sleep!). But the 2+ inches I’ve already gained are worth it. Honestly, if I find out tomorrow that I can’t proceed forward to get that third inch, I would be okay. And as I mentioned before, the quarantine actually worked very much in my favor.

As far as Dr. Mahboubian goes, he has never tried to get me to do anything I didn’t want to do. Period. Even when I went in for my initial consultation, I was impressed with his laidback and casual demeanor. There was zero "hard sell". He never tried to convince me to move forward with the surgery at all. He simply answered questions, explained the procedure, and basically let it be known that if I decided to move forward at some point in the future, they were there. I appreciated it.

So, no - no pressure from Dr. M. He's been great. He always responds promptly to emails and is very communicative. I’m very happy with him and his staff, and I would definitely encourage others here to feel safe choosing him for their LL journey. You'll be in good hands.

Hope that clears things up.

[ghkid2019]

Honestly getting LL during covid 19 is about as perfect of a situation as you can imagine. Everyone is fking locked down, everyone is facing isolation and mental illnesses from being inside. The fact that you are able to overlap covid and LL is a miracle. No one's doing   anyways, why not do a long intensive rehabilitative procedure while everyone is indoors anyways? And you made the right choice, you certainly would've regretted not doing the LL back in March, simply because the hardest part of covid 19 isn't the deaths for most people, it's stay inside and dealing with mental illness. It happens to be that LL is exactly that and you just overlapped your "quarantine". Best possible scenario.
Normally you being crippled for months is irregular. But during this quarantine, no one will bat an eye, everyone's in their homes anyways.

Perfect.

[frenchie]

Even if Dr M staff is right about not forcing the patient to not cancel surgery I question what impact knowing that the doctor staff is monitoring your online diary has on how fearlessly and truthfully you can write whilst going through the procedure. It certainly wouldn't be the same.

[Movie]

I second that Dr. M is a great option for this procedure, straight to the point never trying to convince you of anything, giving you the info and if you decide to proceed then good for you.

[MarkE]

Hey guys, I wanted to stop back by and give you an update.

There is light at the end of the tunnel! I'm two weeks away from being done with distraction! Can't believe I'm almost there. Dr. M and I decided to stop around 2.75 inches (7 cm) due to a pretty aggressive bend in my right knee (nerve pain has been pretty bad as well). I'm totally happy with this decision and have no problem with it at all. That's a life-altering number for me.

The last few weeks have been difficult but manageable. My main problem is that that Gabapentin has basically stopped working for my nerve pain. I've seen some indication that the Norcos I started taking again mess with Gabapentin's ability to do its job. I am weaning off Norco over the next couple of weeks and will be able to report back on whether this theory is true or not.

Sleep has been a huge issue because of the nerve pain. Some nights I get about one hour of sleep (for real), some nights it's 3 or 4. But rarely more than that. My body seems to have adjusted to this to some extent, but I'll be so glad to sleep a normal night's sleep as I move through consolidation.

I'll share more thoughts and tips as I finish up distraction and consolidation, but I'll say this for now: I know I've talked a lot about the negative sides of this procedure in my diary. My goal has been to help prepare others for the full reality they may be facing. But here's the thing: even with all the hardship, I would totally encourage anyone thinking about this procedure to just do it. Yes, there's pain, but it's nothing you can't handle. Honestly. And, if you're like me, you will leave this experience with a newfound respect for your ability to fight through the difficulty. It strengthens you and empowers you. You can handle so much more than you think you can. And your self-respect and self-confidence will reflect that.

I'm sure I'll have some new challenges to face in these last two weeks, but I'm feeling optimistic. I'm ready to get on with rebuilding my legs and my walk during the consolidation phase. There's a lot of work ahead of me, but the worst is behind me, and I'm glad I took this leap.

[jem_semarc]

Hey guys, I wanted to stop back by and give you an update.

There is light at the end of the tunnel! I'm two weeks away from being done with distraction! Can't believe I'm almost there. Dr. M and I decided to stop around 2.75 inches (7 cm) due to a pretty aggressive bend in my right knee (nerve pain has been pretty bad as well). I'm totally happy with this decision and have no problem with it at all. That's a life-altering number for me.

The last few weeks have been difficult but manageable. My main problem is that that Gabapentin has basically stopped working for my nerve pain. I've seen some indication that the Norcos I started taking again mess with Gabapentin's ability to do its job. I am weaning off Norco over the next couple of weeks and will be able to report back on whether this theory is true or not.

Sleep has been a huge issue because of the nerve pain. Some nights I get about one hour of sleep (for real), some nights it's 3 or 4. But rarely more than that. My body seems to have adjusted to this to some extent, but I'll be so glad to sleep a normal night's sleep as I move through consolidation.

I'll share more thoughts and tips as I finish up distraction and consolidation, but I'll say this for now: I know I've talked a lot about the negative sides of this procedure in my diary. My goal has been to help prepare others for the full reality they may be facing. But here's the thing: even with all the hardship, I would totally encourage anyone thinking about this procedure to just do it. Yes, there's pain, but it's nothing you can't handle. Honestly. And, if you're like me, you will leave this experience with a newfound respect for your ability to fight through the difficulty. It strengthens you and empowers you. You can handle so much more than you think you can. And your self-respect and self-confidence will reflect that.

I'm sure I'll have some new challenges to face in these last two weeks, but I'm feeling optimistic. I'm ready to get on with rebuilding my legs and my walk during the consolidation phase. There's a lot of work ahead of me, but the worst is behind me, and I'm glad I took this leap.

Hi mark, good job!

Are you still on crutches? When do you think you will be able to walk somewhat normally?

[Cpl2012]

Hi, thanks for your comment. I’m sorry if the language of my original post was misleading. Let me clarify:

Nobody forced me to do this surgery; nobody has that authority. From start to finish, the decision was mine, and I never meant to imply otherwise.

When I first consulted Dr. M about the procedure, the world was in a very different place. The full reality of the Corona crisis hadn't really dawned yet. I decided to move forward and paid my money in full. I was looking forward to getting the surgery underway.

However, as my surgery day drew nearer, the world began waking up to a darker new reality. Terrifying reports were coming in from Italy, and Americans received notice that we too were moving into lockdown for an unspecified amount of time. We had no idea how bad things might get.

I didn’t like the idea of my wife and children being stuck in some apocalypse scenario while I was basically a helpless body with two broken legs. So I inquired if it was possible to delay my surgery for a while until all the Covid-19 drama blew over. This is when I was informed that if I tried to reschedule, I would lose all of the money I had paid. It was simply hospital policy.

There’s no way I was walking away from $65,000. Yes, I could have walked away if I really wanted to. But I decided to move forward with the surgery, even with an uncertain future. And I made that decision myself.

And I’m pleased to report that I’m very happy with that decision. Yes, it’s painful. It is a massive mental and physical challenge, and I have developed a new understanding of my relationship to pain (and sleep!). But the 2+ inches I’ve already gained are worth it. Honestly, if I find out tomorrow that I can’t proceed forward to get that third inch, I would be okay. And as I mentioned before, the quarantine actually worked very much in my favor.

As far as Dr. Mahboubian goes, he has never tried to get me to do anything I didn’t want to do. Period. Even when I went in for my initial consultation, I was impressed with his laidback and casual demeanor. There was zero "hard sell". He never tried to convince me to move forward with the surgery at all. He simply answered questions, explained the procedure, and basically let it be known that if I decided to move forward at some point in the future, they were there. I appreciated it.

So, no - no pressure from Dr. M. He's been great. He always responds promptly to emails and is very communicative. I’m very happy with him and his staff, and I would definitely encourage others here to feel safe choosing him for their LL journey. You'll be in good hands.

Hope that clears things up.

Hi Mark! So you paid 65.000$ for Stryde?

[permanentlybanned]

Hi mark. The issue you experienced with the tumour-like outgrowth of the bone onto the side of the nail is now a reason why Stryde has been suspended in the UK for now.

Hope you're doing good by the way. 7 months since update, I bet you're doing really good. Don't come back here though if you're loving life

I know I've talked a lot about the negative sides of this procedure in my diary. My goal has been to help prepare others for the full reality they may be facing. But here's the thing: even with all the hardship, I would totally encourage anyone thinking about this procedure to just do it. Yes, there's pain, but it's nothing you can't handle. Honestly. And, if you're like me, you will leave this experience with a newfound respect for your ability to fight through the difficulty. It strengthens you and empowers you. You can handle so much more than you think you can. And your self-respect and self-confidence will reflect that.

Love that f**king mentality man. Godspeed.

[Vibes]

Hi mark. The issue you experienced with the tumour-like outgrowth of the bone onto the side of the nail is now a reason why Stryde has been suspended in the UK for now.

Hope you're doing good by the way. 7 months since update, I bet you're doing really good. Don't come back here though if you're loving life

Love that f**king mentality man. Godspeed.

I can't find this mentioned but clearly I'm blind. Can you quote where he said this?

[Vibes]

For those of you who are interested, here is an x-ray showing the leakage issue. This was the x-ray that was taken from a 3/4 view. The leakage wasn’t as visible in the straight-on x-ray due to the angle.

 

When I first became aware of the issue, the material was extremely hard and seemed to be fixed in place, much like regular bone. Since I’ve started messing with it over the past week, it has become less fixed in place. Though it looks kind of like one mass in the x-ray, it’s actually multiple smaller pieces. I can move the pieces around a bit now. They seem to have maybe gotten slightly smaller and with more rounded edges than before. So, I have some hope that I am having some effect on it. The largest piece feels to be somewhere around 1” x 2” (2.5 cm x 5 cm), though it’s hard to tell exactly because it’s not right on the surface.

I have also realized that I have the same issue on the other side, though to a much, much smaller degree. Once I realized this, I went back to look at the x-ray of the other leg, and sure enough, there is a very faint line of material there. I’m not sure if Dr. M missed it, or if he simply knew that that amount of material would absorb on its own, so he decided no to mention it. But I’ve been working on pushing on that material as well to get it to break down.

It currently doesn’t cause much pain on either leg, but when I bend my leg, it does create quite a bit of pressure and tightness in the leg which is uncomfortable.

For anyone else that is blind, here it is. 

[throwawe]

on mahboubians google maps reviews someone has complained that "when a doctor comes across a cancerous growth, that doctor should advise the patient & give a referral. not what he did, he ignored the life threatening issue & poked at it instead."

i dunno if this is u marke, but i hope your ok.

[darkred]

Did you have still the nails inside ?