DIARY: Stryde femurs - Dr. Mahboubian - March 2020

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Quote from: Movie on April 18, 2020, 08:41:28 AMI 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.

Thanks Movie - yeah, I'm just following what he says. At my last appointment before the surgery he said, "I've done this many times. I know how to get you through it. If you just listen to what I say and follow my directions, you'll be fine". And I believe him. So I'm just trying to do that. Pushing on these bone pieces all day lol. Hope it's working

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DAY 31

I realize that so far my diary has focused a lot on the negative sides of this process. I’ve been intent on making people aware of some of the more unpleasant aspects, just so they are fully prepared going into it. Reading about that stuff in other people’s diaries helped me prepare. So I’m trying to pass along my experience to others in case it helps them.

But I thought I’d take the time to point out some of the more positive aspects of my process so far.

1) Two days ago was exactly four weeks since my surgery. Wife and I measured again on the wall that day, and I had gained 1 1/8” or 2.86 cm. It’s amazing to see that inch on the wall. Proof that the pain so far has been for something.

2) I have started to notice the extra height, even when I’m not looking for it. I’ll be doing something and I’ll notice that things don’t seem quite right. And then I’ll realize that it’s because my perspective has shifted. When I stand at the kitchen counter eating cereal, I can tell that my head is noticeably farther away from the counter than it used to be. The spoon has to travel farther to reach my mouth. It’s just a little more than an inch, but it makes a difference. In my bathroom, I can see items on the top shelf better than I could before. And sometimes when I stand up after sitting for a while, the floor feels noticeably farther away that it used to. This is all with just an inch, so I imagine it will be much more noticeable with another inch or two.

3) In the last two days, I feel like I’ve really turned a corner. Far less pain in general, and my legs suddenly feel much stronger. I can get up out of almost all chairs in my house with no assistance - no walker or crutches. I couldn’t do that two days ago. These last two days I’ve been pretty much walking everywhere with no crutches or walker or cane. It seems scary on one hand to walk all the way across the living room with nothing to support me or catch me, but at the same time, my legs feel strong enough to do it, and it’s far faster and easier to do. Makes my wife nervous, because she doesn’t want me to fall. And sometimes I’ll grab a cane if my right leg is feeling a little off. But for the most part, I’m trying to just walk like I normally would. The kids think dad’s silly-looking walk is hilarious. We all laugh at it together. They understand it’s temporary

4) The Gabapentin has been a game changer. I think it’s at least partially responsible for my ability to perform at a higher level these last couple of days. I’ve felt my mental state improving quite a bit as well, even though I’m still only getting 4.5 hours of sleep max at night. I’ve been off Norcos completely now for a couple of weeks. Saving them for when the pain level shoots back up later in the game. Still take Tylenol every six hours, and I’ve never had a higher respect for it. Discontinued edibles as I felt they weren't doing enough.

5) I can go up and down stairs now fairly well. Going down is easier than coming up right now. I've heard that changes eventually. I don’t do it often yet, as it’s pretty taxing. But I can do it. That helps a lot.

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Quote from: Jim_dabarber on April 19, 2020, 04:48:56 PMI 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.

Thanks Jim, glad to hear it. It's been a game changer for me.

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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 started using Gabapentin at around 3.5 to 4 cm and I found that it was effective throughout the duration of lengthening till 8 cm.

Your experience with the nerve pain is play by play just like mine. Gabapentin was a game changer. Unfortunately after I rolled off gabapentin my numbness persisted, even till this day (7 month post op,) to the point where I do get shooting nerve pains every other day.

Also, avoid using gabpentin with any opioid pain killers. Recent research has shown that the combination of the two can lead to respiratory health risks. --> https://www.fda.gov/news-events/fda-brief/fda-brief-fda-requires-new-warnings-gabapentinoids-about-risk-respiratory-depression

The bone leakage is interesting, first I've heard of this but I'm sure under Dr. M's care you'll be well informed. Other than that I gotta say great job on the recovery with walking at 31 days! You are ahead of me back when I started, I didn't start walking independently until 1.5 months post op or so.

Excellent diary. Love the ones that get into the mental / psychological aspect of LL. This is a mental neurosis after all. It's only worth it if we free ourselves of our mental dysphoria! Seems like you have a very solid, rationale view of LL and I think you will be very happy with the outcome.

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Great diary so far. I just turned 33 and I've reached the point where the financial hit for Stryde femurs is acceptable to me, though sometimes I have that feeling deep down of it being too late (in life.) On the other hand, waiting this long has gotten me to the release of Stryde and full weight bearing, so maybe it's the right time. Seeing others decide to go through with it in their 30s as well is the kind of inspiration I need to schedule a consultation (hopefully with Dr. M.)

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hi MarKE, hope you are doing great. Any update on the 2 issues you mentioned 2 weeks ago?

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It's never too late. I did in my late 20s, early 30s. Yes, I do regret not doing earlier but it was still the best thing I did in my life.
Go for it.

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Quote from: BelowTheMean on April 29, 2020, 03:14:13 AMGreat diary so far. I just turned 33 and I've reached the point where the financial hit for Stryde femurs is acceptable to me, though sometimes I have that feeling deep down of it being too late (in life.) On the other hand, waiting this long has gotten me to the release of Stryde and full weight bearing, so maybe it's the right time. Seeing others decide to go through with it in their 30s as well is the kind of inspiration I need to schedule a consultation (hopefully with Dr. M.)

Did it in my mid 30's.  I met other patients that were even older in their late 30s and 40's. Some married. Some with kids. It was life changing for all of us and one of the best decisions we've made. We would have loved to have done it while we were younger but life doesn't always play out exactly as you plan. Never too late to live the life that you want.

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Quote from: BetzLandLiberator on May 04, 2020, 05:38:41 AMIt's never too late. I did in my late 20s, early 30s. Yes, I do regret not doing earlier but it was still the best thing I did in my life.
Go for it.
Quote from: TheAlchemist on May 04, 2020, 06:27:10 AMDid it in my mid 30's.  I met other patients that were even older in their late 30s and 40's. Some married. Some with kids. It was life changing for all of us and one of the best decisions we've made. We would have loved to have done it while we were younger but life doesn't always play out exactly as you plan. Never too late to live the life that you want.

Thanks, guys! Your words mean a lot to me here. Of all the things I could spend money on, I can’t really think of anything else that would have such a big impact on my life. We can’t change how society judges shorter stature, but we can extend our legs a little heh. I’ve been reading a lot more diaries while being stuck indoors and thinking about a more detailed plan of action. Once there’s a vaccine for the virus I think it will be time to book a consultation.

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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.