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?
DIARY: Stryde femurs - Dr. Mahboubian - March 2020
Wow that is pretty concerning MarkE, In my 6+ years of lurking in the forum I've never heard of something like that, but I guess there's no other choice than to trust Mahboubian, I myself sometimes would doubt what he would say to me too and then It'd end up to be true so . . . have hope and press on that thing every waking second lol.
You may want to check if it's bone cancer, I don't buy that's it's bones juice or marrow, it shouldn't turn into bones regardless
If you are really concerned you can get a 2nd opinion by email from other LL surgeons or do a video consultation. I think most American doctors do video consultations right now. There was some other member who had some issue with an Asian surgeon and he got responses from multiple other doctors about his apprehensions.
If you don't mind, please share the x-rays, I'm curious to see what it looks like.
Hi MarkE, I just start to follow your diary, thank you very much for the detailed information.
Dr. M might be right the bone that grows sideway will be absorbed later on. I had a small bone chunk that broke off my tibia bone due to an accident when I was a teenager. It was about the size of finger tip and I can feel it is moving when I pressed it. Eventually, the bone disappeared, and get absorbed. It seems that small bone is not attached to your femur bone, so it should not keep on growing, and will be absorbed eventually.
I have a question regarding the sharpie mark that is moved due to skin stretch, I have not read anything similar in other people's diaries. It seems it only happens on your left leg, but not on your right leg. If it is skin stretch, I assume this should happens to your right leg as well. Or could it be the sharpie mark was not correctly marked on your left leg in the first place?
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.
Quote from: dreamBig on April 18, 2020, 05:48:04 PMI have a question regarding the sharpie mark that is moved due to skin stretch, I have not read anything similar in other people's diaries. It seems it only happens on your left leg, but not on your right leg. If it is skin stretch, I assume this should happens to your right leg as well. Or could it be the sharpie mark was not correctly marked on your left leg in the first place?
Yes, this was a bit of a mystery to me as well. Dr. M told me this would happen during my very first post-op visit, but I had never heard it mentioned in other diaries. At my 3-week post-op, he used a compass to locate the correct spot and found that the proper spot was about half an inch higher than the line that had been marked on my leg. When he checked the right leg for the same issue, there was no issue and the line was still where it needed to be. So I am assuming that the line on the left leg was incorrectly placed to start with. Because otherwise the right leg should have shifted as well, especially since he was telling me that leg was longer than my left leg. Who knows.
DAY 29
A couple of days ago while I was taking a nap, I suddenly felt a pain in my right knee. When I reached down to feel the area, I realized that my entire shin was numb. It was also numb on either side of the shin. I’ve heard people mention this before, and I know it’s a common thing. Feels weird, but I’m not as freaked out about it, since I was expecting it. But it really happened in an instant.
The next night, I started to feel increased discomfort in my lower legs in the middle of the night. To my brain, it felt as if my legs had become incredibly inflamed and had swelled up like balloons. It felt like the pain would have been horrible if anyone had even barely touched my legs. But when I reached down to touch them, there was no pain. And they weren’t swollen at all. It’s just an illusion created by the stretched nerves.
Last night, though, this leaped into a whole new territory. I had been asleep for about an hour, when I was awakened suddenly by a feeling that felt like someone had injected acid into my right leg. Holy sh*t. I can’t describe the agony. And there’s nothing that could be done. My leg was on fire. Fortunately, from reading other people’s diaries, I had known this pain was coming before long and had already filled a prescription for Gabapentin so it would be ready when it happened. I took one, and in about half an hour, the pain had been almost completely reduced. I was amazed at how effective it was, and I felt noticeably better the entire day. Not sure if this nerve pain happened earlier to me than others, but I was expecting the nerve issues and numbing to come a bit later? So far, it's only on my right leg.
I know many people on here have used Gabapentin. Does it continue to be effective for the duration of lengthening, or does its effectiveness wear off? If I didn't have this in my system right now, I would be in absolute hell.
I think i had pretty similar problem, as my bone started to grow into mucsle. DR prescribe me ibuprofen and it work like magic in couple of days.. maybe you can ask DR M about it. Pm me, i will send you before and after Xray
Quote from: MarkE on April 18, 2020, 11:47:44 PMDAY 29
I know many people on here have used Gabapentin. Does it continue to be effective for the duration of lengthening, or does its effectiveness wear off? If I didn't have this in my system right now, I would be in absolute hell.
I used gabapentin thru out most of my lengthening. I did have to up the dose a little near the end and i didnt stop taking it till a few months after lengthening. You should be fine though as your just doing femurs.
I did both femur and tibias
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