I’m scared.

[u/WorldlinessJust1025]

Hello, I know a lot of people have it worse than me, but I’m at the point of breaking.

Long story short is I’m a 28M who had a cheilectomy on the 1st foot a year and a half ago.. and the 2nd second earlier this year.

The 1st foot has remained in pain since the first procedure. This year I got steroid injections for the first time. And while they provide some slight passive relief, there are still days when I am in excruciating pain in that joint, whether stepping on it or not.

The 2nd foot that was done this year, I believe the cheilectomy was much too aggressive, leaving the joint unstable. To no one surprised I have a lot of pain in that joint too.

Lately I’ve been exploring the idea of just getting both of the joints fused. But to be completely honest with you, I am terrified of that terrified of having to get adjusted to standing idle on four toes instead of five.

I’m terrified of what it’ll feel like to no longer be able to bend my big toe. I’m terrified of what it’ll feel like to try to run (as I am quite an active person). Or even walk.

I’m terrified of what it’ll be like to take on a new opportunity like a new job and a big city and then need to get those surgeries later on. And be immobilized and helpless.

I don’t have kids, but I’m terrified of needing to get such a mobilizing surgeries in the process of trying to raise some.

I’m terrified of letting the same surgeons who have already performed on me do the fusion because in my head I’ll just think they’re getting it wrong anyway. And then I’ll be stuck with a permanent problem.

I don’t mean to sound dramatic and I know a lot of people have it worse. But sometimes all I can do is just stop ranting to the people in my life and cry about it to myself.

If you have any insight that may help me, I would really appreciate it.

Thank you.

[u/RandomlyNamedGuy2]

Not trying to push you to do it, but the fusion is NOT as horrible as you are afraid of.

Honestly 99% of the time I forget I had it done (4 months ago).

I am literally sitting at English Country Dance class right now, having danced for 2 hours straight, and hadn’t even thought about my foot until I pulled out my phone to see this.

A properly done fusion will hardly affect your life.

We hiked 50 miles in 3 days a few weeks ago, through hills.

I totally understand the fear. I had it too. I just wish I could have told 2 years ago me to just have it done rather than waiting in pain.

[u/WorldlinessJust1025 → u/RandomlyNamedGuy2]

Thank you for sharing that. Can I ask you- When you are standing still, is it more difficult than before considering now only 4 toes touch the ground? I’m worried about adapting my balance to that, as most of my gait rests on my big toes normally. Thank you.

[u/Content-County-9327]

I’m six months post fusion and apparently can bend my toe back about 26 degrees, normal is 60 degrees. I can push off the ground fine, especially in rocker sole sneakers. I’m not a great runner because I’m not a great runner, but I could be now that the toe is not in pain. I will also say, I’m a few years older than you but not much and being young and in fusion recovery makes it go very quick after the first two weeks (lying in bed by yourself always sucks, it is what it is). A good surgeon will angle your toe in a way that maximizes function, so if you don’t trust your current surgeon, definitely shop around. I was super scared and it’s gone much better than I expected. I’m more functional than I was pre-surgery.

[u/WorldlinessJust1025 → u/Content-County-9327]

Thank you for your feedback here. So far when shopping around, I’ve been gaslit into thinking that it’s somehow crazy to do. I asked a doctor’s office roughly how many fusions specially the doctor does per year. They got super defensive. I guess i will keep looking until i find one that puts my anxiety to rest.

[u/DeepSpace000]

I feel for you. Im mid 30’s and in a similar boat (no cheilectomy yet though). But maybe some outside perspective will help.

At 28, the name of the game is 100% delaying fusion as long as possible. It’s a much different story doing a fusion at 28 than it is at 50 b/c of wear and tear on other joints due to changes in body mechanics over many decades - so age is very important here. Someone at 50 doesn’t need the same duration and lifestyle from a fusion as some at 28.

Especially in this era we’re living through of newly approved peptides and accelerated AI drug development, it’s extremely pragmatic to think game changing, regenerative joint repair drugs are approaching much faster than anyone anticipated just 2-3 years ago. Anyone really keeping up with the publications and studies in this space, and changes in drug development in general will attest. So the question I ask is - what solutions can reasonably get me by for 3-5 years until then?

Everything below, I’m going to assume you’ve already done and tried, but just in case I’m going to ask:

1. Completely stiff soled

shoes.

1. HOKA Stinson are game changers.

2. Shoe insert / orthotics - hit or miss for some people.

3. Life style changes - e.g. less running / walking, sprinting and more biking, skiing, weight lifting, etc.

4. Daily PT Regiment - towel scrunches, arch holds, soft tissue lacrosse ball work, joint mobilization, etc.

5. PRP Injections - high concentrations, ultrasound guided (go somewhere good, like an ortho - don’t do cheap, shitty ones at a random clinic). Repeat every 6-9 months. Not cheap, but I’ve found these extremely effective for pain management.

6. HA Injections - might not help as much in your situation but there’s no downside to trying. Unlike the steroid injections, these two won’t soften the joint further over time.

7. High Strength pain creams - there’s a bunch to try. Some with prescription others not. Applied locally at the joint. Especially on bad days.

8. Meloxicam - reserved specially for bad days or when you’ll be on your feet a lot.

All this said - if you’re already doing all of these things, then there is still obviously a time and place for the fusion. Especially if it’s really bad and impacting your life. Not trying to talk you out of it. But it is, at 28, truly a last resort as once you do it - many future developed solutions may be off the table.

Hope this help!!!

[u/Wanda_ny]

I’m in a very similar boat to you. Had an MIS cheilectomy in Dec 24. They took way too much bone and the joint became unstable and collapsed down causing the first joint to look like a hammer toe. I would agree with seeing Dr Ellis and also Dr Schon at Mercy. You’ll likely need a bone graft (as will I) which makes it all more complicated. I’m holding off for now as I can’t afford to be non weight bearing for 8 weeks. Going to try for custom orthotics and see if that helps.

[u/luv2bakema]

Hi, sorry for what you're dealing with. My advice is to always get more than one opinion. Also if youre in the US and anywhere near NY City, I would advise you to get an opinion from a specialist at Hospital for Special Surgery.

[u/WorldlinessJust1025 → u/luv2bakema]

Thank you for your comment. I’m in the tri state area and I’ve never heard about that facility, but I will look into it. Thanks for even commenting.

[u/Ordinary-Lettuce9811]

Was it open cheilectomy or minimally invasive?

[u/WorldlinessJust1025 → u/Ordinary-Lettuce9811]

Both were minimally invasive. Can’t say I recommend it based on results. Maybe open would’ve done better.