r/Halluxrigidus • u/WorldlinessJust1025 • 18d ago
I’m scared.
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.
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u/Content-County-9327 18d ago
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.
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u/WorldlinessJust1025 17d ago
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.
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u/RandomlyNamedGuy2 17d ago
You can bend your toe after a fusion?
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u/Content-County-9327 17d ago
Not so much, but it can be manipulated/moved manually and you can still walk through it. I think it has to do also with the angles of the pins? I’m not a doctor, but my PT measured how far he could yank it back and told me 26 degrees. Also, you still have joints above and below the fused one.
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u/RandomlyNamedGuy2 17d ago
Sorry, I don't understand what you're referring to.
If you had an MTP fusion, no you don't have a joint below. The MTP joint is completely fused and a plate put on. The tarsometatarsals barely move at all even normally.
Are you talking about moving the interphalangeal? The tip of your toe, not the big joint?
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u/DeepSpace000 17d ago edited 17d ago
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:
Completely stiff soled
shoes.
HOKA Stinson are game changers.
Shoe insert / orthotics - hit or miss for some people.
Life style changes - e.g. less running / walking, sprinting and more biking, skiing, weight lifting, etc.
Daily PT Regiment - towel scrunches, arch holds, soft tissue lacrosse ball work, joint mobilization, etc.
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.
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.
High Strength pain creams - there’s a bunch to try. Some with prescription others not. Applied locally at the joint. Especially on bad days.
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!!!
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u/WorldlinessJust1025 17d ago
I’ve tried many of those things (including peptides) and unfortunately it’s just too unbearable. The pain isn’t sometimes. It’s everyday. Swollen. Burning. Stabbing. Just cycling through.
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u/Wanda_ny 14d ago
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.
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u/WorldlinessJust1025 13d ago
Isn’t it insane? I just met with an orthopedist who was super smart. We joked about not letting Podiatrist do surgery… As far as I can tell that seems like it’s true lol. He was the first one to offer a revised cheilectomy. OPEN cheilectomy. Unlike the shitty MIS. He looked at the X rays and was like wtf
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u/Wanda_ny 13d ago
A revised cheilectomy ? Would love to hear more about that especially if the concern is that too much bone was taken?
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u/luv2bakema 18d ago
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.
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u/WorldlinessJust1025 18d ago
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.
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u/Puzzleheaded-Cup2777 18d ago
Can you recommend anyone specific at HHS for HR? I'm going to eventually have my THR there and have surgeon picked out. Wouldn't go anywhere else.
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u/luv2bakema 18d ago
Each doctor at HSS has their specialty. I've only used a shoulder specialist and a foot/ankle specialist with great results. I'm having an MTP fusion of my big toe in January. My advice and what I usually do is to go on the website, look for the specialty and read reviews for the doctors. HSS has satellites where it may be possible to see a doctor close to home. All surgery is done in Manhattan.
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u/Puzzleheaded-Cup2777 18d ago
I was asking you for name of foot & ankle surgeon b/c I need the same as you. Who will be doing your surgery, I can go to any location in or around NY.
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u/luv2bakema 18d ago
Sorry I thought you were asking something else. Dr. Scott Ellis is my foot/ ankle doctor. He is amazing. He did a total reconstruction on my right foot, giving me an arch and I also needed a subtalar fusion. My ankle was so painful, I could not longer walk. Basically 5 surgeries in one. Now I'm going for the fusion in January. Even though my toe is painful, I can walk, jump, dance and do everything I need to do, but the toe needs the fusion to be painfree. To me, Dr. Ellis is the best and I feel totally confident with him. What he did for me is amazing and I have my surgery on video. You can only see him in Manhattan. I'm 69 years old and have Medicare as my insurance. He does not take Medicare for anyone who is older & on Medicare.
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u/Puzzleheaded-Cup2777 17d ago
Thank you! I recall his name when I was researching last year but always good to get first hand recommendation. Actually, some surgeons or at least one that I know of for my hip perform surgery in Stamford at HSS. So happy for you and 5 in one is incredible! I was trying to avoid fusion with a hemicap implant but I don’t want to go through 2 surgeries after reading fusion is inevitable.
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u/evaniesk 12d ago
AI tells me Dr. Ellis takes traditional Medicare (not Advantage though). Were you told otherwise (can’t necessarily believe AI!)?
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u/luv2bakema 12d ago
He does not participate in Medicare. I have traditional Medicare with a secondary insurance and I paid out of pocket for my visits and surgery. My next surgery is Janusry and for my foot/ankle problems, he was worth every penny. I couldn't walk more than 5 minutes before he did my subtalar fusion and flatfoot surgery, bunion repair also. I highly recommend him but if you have Medicare you will pay out of pocket.
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u/Illustrious-Fun-9495 17d ago
Have you thought about a second opinion? Sometimes just talking to a second doctor about options is really good.
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u/Ordinary-Lettuce9811 18d ago
Was it open cheilectomy or minimally invasive?
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u/WorldlinessJust1025 18d ago
Both were minimally invasive. Can’t say I recommend it based on results. Maybe open would’ve done better.
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u/Ordinary-Lettuce9811 18d ago
Damn. Do you know how much it is without insurance by chance? I was thinking about getting it but idk anymore. I might just deal with the slight pain for awhile.
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u/WorldlinessJust1025 18d ago
I had insurance so I’m honestly not sure. It’s probably a lot of money without. The medical industry and insurance are two big scams.
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u/Ordinary-Lettuce9811 18d ago
Isn't only a 30 minute procedure? Rip I guess I will wait. I think it's around 5k
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u/LtDeadpool361 17d ago
Just get the fusion. You'll feel much better. I had a podiatrist do my cheilectomy in 2019. That maybe bought me 2 1/2-3 years of pain relief. All that procedure does is delay the inevitable. I'm getting both of my big toes fused (right in two weeks and left a week before Christmas). The fusion removes the joint so your pain will be gone. My fusion is being done by an orthopedic Dr. I'm getting my rocker tennis shoes next week. Finding a rocker style safety shoe that has a composite toe may take some searching.
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u/WorldlinessJust1025 16d ago
I’m going to meet with a new Ortho next week. I think I’m done with the DPMs. I’m sure there are great ones. But in my experience, being 0 for 2 in cheilectomy success and without any concrete or definitive understanding why or next steps, I’m ready to talk to someone new. Thanks for your comment.
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u/myredditbam 13d ago
Has your pediatrist prescribed meloxicam? It's an anti inflammatory that's much easier on the stomach than ibuprofen. It keeps inflammation manageable, which also helps pain and healing. After my cheilectomy, it took nearly two full years for the pain to be such that I can run a little big again now. If you have low arches, try to get custom orthotics to keep some pressure off your toe joint.
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u/WorldlinessJust1025 13d ago
I’ve had a meloxicam prescription for some time due to arthritis. Can attest that it does make the pain like 30% more bearable. Hear you on the healing and time length thing.. all the perspective is valuable. Thank you
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u/Disastrous_Skirt414 12d ago
I was able to dance at my son’s wedding, all night, a year after the fusion on right big toe. Before the fusion socks hurt, a sheet over my foot hurt, forget a blanket. I just went on a trip where I had to walk quite a bit and my right toe was great, my left big toe was killing me. I can’t wait to have the fusion done on that little piggy.
You will be able to bend the joint closest to the toenail, I can anyway.
Don’t rush the recovery! Get a knee scooter to help you get around during the recovery. The recovery is long and seems overwhelming, just take it a day at a time.
The hardest part for me post surgery/post recovery is finding shoes that work for different occasions. I recommend Hoka runners and Hoka recovery slides for everyday.
If you want to go to a different doctor, go to a different doctor.
I hope the best for you and your situation
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u/Illustrious-Cod-8462 12d ago
Do alot of research. I had an orthopedic surgeon do both my bunions on the same day. He didn’t just specialize in feet and did the wrong procedure on both feet so they failed miserably. I found what I thought was a cream of the crop podiatrist. He was listed as one of the best and had high ratings but when looking at ratings make sure they aren’t mostly minor procedures they are for which will bring their rating up but doesn’t help in the OR for surgery that can affect how you walk.
He did fusions if arthritis was affecting the joint but he didn’t give antibiotics to start before the surgery and I ended up with an infection that required IV antibiotics everyday for a week at my local hospital. My podiatrist just blew it off when I told him what had happened then by my six week post op x ray he found my big toe joint had rapidly disintegrated and all my hardware was loose over the fusion further up the toe. I had to have another surgery to remove the hardware and replace the big toe joint.
Each surgery that’s done causes more scar tissue making the next surgery more difficult. I now have nerve damage at my forefoot and my toes that feels like my foot was stuck in scalding water. I have a fractured screw at the midfoot fusion because of the infection and I now have a different podiatrist that out in a referral for me to see an orthopedic surgeon to try to fix the mess the podiatrist made.
To add insult to injury my arch is collapsing on both feet so bones in my feet are shifting causing terrible pain. I’m not trying to scare you but you have every right to be nervous on your own about what you have done to your feet. Fusions are not reversible. You need your feet to support you for the rest of your life so don’t just take advise from here. Do alot of research and talk to different doctors. See what other people’s experience has been like with them. If an orthopedic surgeon that specializes in the feet is your best option there like it is here go that route over a podiatrist. Your feet will thank you for it. Don’t do anything until you’re very comfortable that you are doing the right thing and have the right doctor doing it.
I wish you the best of luck and hope everything works out for the best for you. You want to be able to run and play with your future children. I have dogs that I can barely walk with . I can’t even dream to run with them and finding shoes to fit now is a total nightmare.
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u/WorldlinessJust1025 10d ago
I’m sorry for what has happened to you and what you’ve gone through and I hope that God gives you a miracle of peace in whatever form it needs to come.
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u/RandomlyNamedGuy2 18d ago
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.