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elldee 03-21-2009 08:32 AM

If you have had your big toe fused, please respond
 
I would be very grateful to hear from people who are post-recovery from having their toe fused.

Here's my story - if you've had toe fusion I'm sure you've been through this.

Hallus limitus developed 4 years ago ( I am 38 years old). Orthotics, anti-inflammatories, reduced activity, rocker shoes all tried with no great success. Had a simple chielectomy 8 months ago. Surgeon said 25% bone on bone and I would need more surgery in 2-5 years, but he was hoping for reduction in pain and more movement. Unfortunately, I did not get more movement and while the horrible grinding and snapping decreased after surgery and the large bump was reduced, the pain on bending and pushoff was just as bad.

Since surgery, I have had all shoes modified with steel shanks and rocker soles. Depending on the day, these allow me to get around, but I am so concerned, consciously and unconsciously, with keeping that toe from bending that I protect it by walking with my foot more to the inside, walking on the outside of my foot and walking with the top of my body thrown forward (to try and keep the toe from bending.) Compensating like this is now causing pain on the inside of my knee, the opposing shoulder, my back, and my hamstrings. And my foot still hurts of course. The grinding is back and bone is being laid down around the joint again, which means my shoes are pressing on the outside of the joint too.

The surgeon now says fusion, although he ususally reserves this for patients in their 60's - that's a way off for me and I really fear for the joints in the rest of my body if I have to keep compensating like this.

Recovery from chielectomy was exceedingly painful (even the surgeon was surprised at the level of pain) and I am admit I am terrified by the pain after toe fusion. I will ask to be admitted to hospital overnight, rather than being sent home that day this time. I also realize I will be on my butt for 3-6 weeks and on crutches for months. But because of the wear and tear the rest of my body is now experiencing, I am prepared to suck it up and go through the recovery, if it would give me my life back.

My question is - what is life life AFTER the year of recovery. I understand my gait will be altered because the joint won't bend, but I am thinking that it is altered now anyway trying to protect the toe, but at least the joint pain will be gone? I walk with a limp now anyway and tense all muscles all day to protect the toe (which is exhausting). I also have muscle spasms in my buttock, back and thigh muscles, all from trying to protect the toe. I find myself using my knees to turn in my kitchen to avoid stepping on my foot (and knees were of course not meant to turn). I am also concerned that taking large does of Naproxyn just to get by is not good long-term for one's kidneys and liver.

What it is like to walk after fusion? I know my days of jogging are done, so are the days of wearing any sort of fashionable footwear. I am 38 years old and was very active. Now even walking my dog or vacuuming is a big deal. I walk very slowly because of the fear of shooting pain if I mis-step or put too much pressue on my foot. I am prepared for a life of wearing modified shoes, if I could resume walking, low-difficulty hiking, being able to make my way to a beach etc.

I would like to hear if I can expect an improved quality of life with the toe fused. Yes, all medical professionals have said "hang on to your joint as long as you can". I have tried my best, but I find being in pain all the time (both in the toe, but also generally aching everywhere else from working so hard to protect the toe) is depressing and making me quite snarly and withdrawn.

I live alone and am also quite terrified of being helpless for months during recovery, so any encouraging tips on the recovery process appreciated too. I will hire someone to cut the grass and walk the dog. I'm sure my friends will bring groceries from time to time, but unfortunatley, I will mostly be recovering from this alone.

I would genuinely appreciate any time you could spare to respond if you have had your toe fused.

Kerlin4321 03-21-2009 03:46 PM

Re: If you have had your big toe fused, please respond
 
Sorry you are going through this and especially sorry the cheilectomy did not give you pain relief. I am in much the same situation as you and am currently mulling over options. Did your doctor talk about the need for joint decompression at the time of your operation? My understanding is that in Hallux Rigidus at the stage you seem to have reached a simple cheilectomy is not enough - you need to achieve some sort of joint decompression as well or the structural issues (the constant jamming) are not addressed. So some sort of osteotomy that spares the joint should be performed. In advanced cases but for older, less active people a resection athroplasty (i.e. slicing off a small amount of the bone adjacent to the joint) can also help but you may lose the ability to plantar flex (put weight on the toe and push off) since no new cartilage fills the new space in the joint and the toe can become droopy. So apparently this is not recommended with most active people unless there is some other reason to do it (like maybe an over- long first metatarsal?) From what I have heard fusion can be very successful and is the best choice if your joint has virtually no cartilage left or you have very extensive osetoarthritis in the joint. The main issue seems to be lack of plantar flexion since the fused joint makes the toe point upward by some many degrees. The risk is that the distal phalanx (last bit of your great toe bone) and neighboring bones takes on too much pressure and create new gait or pain problems. But I have read accounts of many people very happy and active with fusions. Many of them had essentially rigid toes so it did not end up being a major change for them , just no pain and a return to a more normal gait. I am hoping to still salvage my joint(s) but realize a fusion may end up being my only option.

Hope you get some good feedback from those who have gone through it!

grec1 03-21-2009 08:51 PM

Re: If you have had your big toe fused, please respond
 
Hi Elldee
I am 10 days post-op of a toe fusion which I finally did after suffering almost three years. I was, like you unable to do the basics and all of my other joints became involved causing me additional discomfort and making life miserable as you describe. Because I have Rheumatoid Arthritis and take Enbrel Injections weekly to control the disease I hesitated about the surgery basically because I would have to stop injections two weeks before and two weeks after the surgery. The thought of this pain througout my body and having to work and try to continue living was not something I wanted to go through. Having said that I found I could no longer stand the daily pain so I had the surgery on March 10th. It has not been too bad I must say. Once I got past the initial 4 days of painkillers, I am not in any pain which is a big change. I cannot weight bear on the foot for another 5 weeks and had the first surgery cast removed one week post-op and after the surgeon checked everything out another shoe type plaster cast was put on. Since Thursday I have been out daily - not for terrible long times 3 - 4 hours max. however, I am able to get around and will probably return to my job as a Admin. Assistant to Principal of a Secondary School which is a desk job for the most part. I have rented a walker as I am unable to use crutches due to RA issues of balance. I am allowed to walk on my heel, but cannot put any weight on the foot itself.
All in all I am very pleased with how little pain I am in and how quickly things are healing.
I do have a son who has helped me through the first week or so and made sure I had whatever I needed and as long as you have some help during that first few days it is worth the initial pain. I know that my gait will change a little, but since I have not walked properly in almost three years, the difference will only be that I will be able to walk PAIN FREE eventually. I am more than happy to wait out this recovery period to get there. I am a little older than you (54) but very active and sure want continue to be.
I hope this has given you some answers to your questions. If there is anything else you can think of - just ask.

Take care and good luck!:angel:
Sharon

jdm1 03-22-2009 12:22 AM

Re: If you have had your big toe fused, please respond
 
Getting my fusion was the BEST thing I did! Quick history....in August 96 tripped over baby gate and fracture toe and joint although never picked up. Had surgery in Dec 99 to try and repait joiont and was totally unsuccessful. In Dec 00 I had a joint replacement of big toe. The movement never came back but the pain went away for awhile so I lived with it. Finally couldn't deal with pain so I went to doc. She said it was time to fuse (I was 33 at time). I had a bone graft from my hip and the fusion and was the best thing I did.

I was NWB for about 8 weeks, then in a walking cast for another 4. After that I was in a CAM walker for another 8 weeks or so. Today I am fully recoverd on that foot. I am back to hiking, etc. I am limited in the height of heels and my days of ballet are over. :) Even though the recovery was hard, fusing was the best thing for me. I did go back in and have the hardward removed becuase it was irritating me, but others chose to leave it.

As far as my gait goes, it is really only noticible to those people who know and they have to be behind me and looking for it. However, I am party tricks at pool parties. I can set my foot down on wet cement and only leave 4 toe prints unless I roll my foot forward.

I have had to have an osteotomy on my other foot and most likely will end up with that foot fused as well. If I am willing to go through it again, it might help show that I think it works.

jdm

my sore feet 03-22-2009 02:36 PM

Re: If you have had your big toe fused, please respond
 
Elldee
I think if you're diagnosed with stage 4 hallux ridgidus, there's no other answer than fusion. i lived in so much pain trying so many other options besides the fusion that it was rediculous. i think the thing that finally got me in the direction to fuse was a doctor i finally trusted and thought he knew what he was doing. i messed around with a podiatrist for years and finally realized the orthopedic surgeon was the way to go. i am now 6 weeks post op and have been non weight bearing this whole time with 6 more weeks to go. doc did a bone graft from my hip so that adds 4 more weeks of NWB to the recovery. all in all it will be 12 weeks NWB then 4 more weeks in a walking boot then probably some physical therapy. i won't lie, this has been way harder than i ever thought, not because it's all that painful, but just to not be able to get around very easily and no driving and pretty much just staying home has basically sucked. i've got a husband that spends alot of time on the road for his job so have spent many a day alone with the dogs and logging plenty of t.v. time. i just keep thinking if this leads me to be pain free, it'll all me worth it, so that's what keeps me going. after surgery i was in a VERY heavy splint and pretty much only got up to take bathroom breaks and brush my teeth. that lasted 2 weeks, quite gruling. after that i was fortunate enough to have been given an air cast instead of a plaster cast. the air cast was removable so i could ice whenever i wanted and could remove it to shower. if you get that option, go for it. just be oh so careful when you're foot is exposed. i can't really say at this point i'm glad i did it, but i am half way there and feel the worst is over. i'm looking forward to walking without thinking about how painful each step is. good luck with your future and just figure you're going to need a fusion at some point and your pain will not magically disappear, so you might as well pick the time of year you won't mind being housebound for several weeks and go for it.
i'm 51 and was a runner for many years and am looking forward to getting back into shape and working out without pain. keep your chin up and think positive.
Brenda

sanell 03-23-2009 12:35 PM

Re: If you have had your big toe fused, please respond
 
I am 6 months post rt great toe fusion after living with the pain for 10 years. I was NWB for 8 wks, fell 4 times while using the crutches, and it still was the best decision I have made in a long time. NO PAIN! In fact I was so pleased that I am getting the left foot done April 17. I made a "nest" in our Florida room, switched the top 2 shelves of the wine fridge over to soda and water and lunch goodies, got things to read, sweaters to knit, movies to watch, and organized 20 years of pictures into albums. Very important to elevate the foot - it kept the pain and swelling down. Sick as it sounds, I am looking forward to getting the other foot done ~ planning a European river cruise for fall to celebrate my 2 feet.
Good Luck, ellen:wave:

elldee 03-24-2009 03:58 PM

Re: If you have had your big toe fused, please respond
 
To everyone who has replied, I thank you for taking the time.

It sounds about as gruelling as I thought it would be.

To sanell, your fusion seemed to go well. Can you tell me what your gait is like now? Is it similar to wearing rocker soles and steel shanks, just minus the grinding and pain, or do you limp and compensate still? What things can you do now and what things do you know are "off the books". How long did it for your brain to learn "that part doesn't bend anymore"? Do you sometimes still try to bend it or does your body just know?

To jdm1, can you still feel you are limping, even if others don't see? Does the rest of your body still have to compensate? How is your balance without that toe on the ground? Sounds like a great party trick at the pool:)

Can either of you walk short distances in bare feet now, as I have cannot take a step anymore. Not the biggest problem, I'm just curious.

Sorefeet - I agree, there are few options. I just need to know that there is a more active and less crabby life waiting at the end of the road, as it's been one failed solution attempt after another and so many have promised they know the answer. Also agree on timing. I live in Canada and will have to worry about snow and ice, so am thinking early fall will still get me out for the summer. I would really love to hear from you as you recover.

We you all admitted to hospital or did you go home after? If you were in hospital, how long did you stay and what kind of medication was given for pain when you went home. If you can believe this, I needed percocet for a chielectomy after an agonizing night at home with T-3s. ( and no, no drug-seeking behaviour). Maybe that's what's got me the most frightened. Pain control for the 2 weeks after.

Does anyone know why if this is the answer to a pain free, more active life, the orthopedic surgeons won't do it until you've exhausted every other option? Is it the recovery time? My surgeon says he likes to reserve it for people who are in their 60's, but my head was swimming and I didn't ask why.

You are all much tougher than I am and I really thank you for sharing. I don't know anyone in day-to-day life who has this and if something doesn't hurt, it's difficult for people in your daily life to imagine, as they have no context. I feel a bit better just know you're all out there. I wish you all the very best too.

sanell 03-24-2009 07:51 PM

Re: If you have had your big toe fused, please respond
 
My gait is completely normal now. The toe is fused at about a 14 degree angle, and I can wear flat or up to about a 1 1/2" heel. No limping. I walk about a mile (would do more but my other foot hurts too much). Walking in bare feet is no problem, either. The toe does not stick up high enough to be a problem. The only concession I have made is in the way I do my yoga. In "downward dog" position I use blocks to raise my upper body so I bend at the ankle instead of the toe. I went into this with a positive attitude and determined that it would only make life better, and it has. True, spike shoes are out, but there are lots of nice looking shoes that do fit, and it is wonderful to be without pain. The prolonged recovery time was well worth it - plus I got a lot done at home. By using a rolling stool to put my knee on, I was able to cook, dust, clean bathrooms, do laundry, change the sheets - everything except wash floors (which my husband did). I was determined not to ask anyone for help, and I found ways to stay NWB and get chores done, too.
Good luck in your decision.
ellen

my sore feet 03-25-2009 03:25 PM

Re: If you have had your big toe fused, please respond
 
[QUOTE=elldee;3931821]To everyone who has replied, I thank you for taking the time.

It sounds about as gruelling as I thought it would be.

To sanell, your fusion seemed to go well. Can you tell me what your gait is like now? Is it similar to wearing rocker soles and steel shanks, just minus the grinding and pain, or do you limp and compensate still? What things can you do now and what things do you know are "off the books". How long did it for your brain to learn "that part doesn't bend anymore"? Do you sometimes still try to bend it or does your body just know?

To jdm1, can you still feel you are limping, even if others don't see? Does the rest of your body still have to compensate? How is your balance without that toe on the ground? Sounds like a great party trick at the pool:)

Can either of you walk short distances in bare feet now, as I have cannot take a step anymore. Not the biggest problem, I'm just curious.

Sorefeet - I agree, there are few options. I just need to know that there is a more active and less crabby life waiting at the end of the road, as it's been one failed solution attempt after another and so many have promised they know the answer. Also agree on timing. I live in Canada and will have to worry about snow and ice, so am thinking early fall will still get me out for the summer. I would really love to hear from you as you recover.

We you all admitted to hospital or did you go home after? If you were in hospital, how long did you stay and what kind of medication was given for pain when you went home. If you can believe this, I needed percocet for a chielectomy after an agonizing night at home with T-3s. ( and no, no drug-seeking behaviour). Maybe that's what's got me the most frightened. Pain control for the 2 weeks after.

Does anyone know why if this is the answer to a pain free, more active life, the orthopedic surgeons won't do it until you've exhausted every other option? Is it the recovery time? My surgeon says he likes to reserve it for people who are in their 60's, but my head was swimming and I didn't ask why.

You are all much tougher than I am and I really thank you for sharing. I don't know anyone in day-to-day life who has this and if something doesn't hurt, it's difficult for people in your daily life to imagine, as they have no context. I feel a bit better just know you're all out there. I wish you all the very best too.[/QUOTE]
Hi elldee
all your questions sound so familiar. it seems so many people have this problem with the big toe joint and yet i have never personally met anyone so i could bend their ear and get some info, so these forums are so interesting to me.
first off, since i am only 7 weeks as of today post op, i'm still in the recovery stages, so am still having good days then bad, but for the most part things are getting easier. however, it actually has been harder than i thought. getting around on crutches sucks like no other and has completely limited my going anywhere outside the home other than the doc appointments. it just seems like too much trouble to put makeup on and actually mingle out in the world right now. i still have some tingling in my foot after moving around awhile so have to get to the couch and elevate. the doc did send me home with a bone stimulator at my 2 week check up which i've read it is quite affective in healing. keeping my fingers crossed. you might inquire about that with your doc. the surgery itself was a piece of cake, but i did get sick from anesthetic so and the percocet by was given anti nausea pills and after about 2 days was fine. took percocet and muscle relaxers for about the first week then turned to tylenol which was enough for me. alot of people stay overnite the first nite after surgery but my doc said i could go home which is what i wanted and it was ok to do that. they sent me home with a huge piece of foam that my leg rested on so you don't have to stack pillows, that was helpful. you said you took percocet after a cheilectomy, well that's really all you should need after fusion as well, they work. doctor told me to take 1 every two hours instead of 2 every 4 hrs. the worst day after surgery is the first day. my doc called the morning after and told me that would truely be the worst of it and he was right. my husband was home with me and very patient. the pain is very manageable if you keep up on your meds. you said you're thinking about doing it in the fall because of weather. i didn't want to do it then because it'd run into the holidays, so chose a time after christmas with hopes of healing by summer. we live in Spokane with very snowy winters as well, but trust me, you won't be out in it except for doc appts. i hope this bit of info helps you make a decision. all i know is it was a necessary evil for me to have gotten this done. the pain was only getting worse as time went by so realized as much as it sucks this should be the answer. depending on how bad your joint is, the doctor never told me to hold off, when they look at deteriorated joints, they know the only solution is fusing. i did have a bone graft from my hip but that has not created a problem one bit, so if that is ever mentioned for you, don't sweat, it's not a big deal. my toe is the same length as my other big toe now which makes me happy. the other piece of advise it'd give is to rent a knee scooter for at least rolling around in the kitchen, it's been a life saver.
good luck with your decision and any other questions, i'm here. lord knows i'm not going anywhere at least for 5 more weeks.:0))
Brenda

elldee 03-28-2009 01:33 PM

Re: If you have had your big toe fused, please respond
 
Brenda - I hope you are feeling a bit better today. Thank you for such detailed answers. It sounds like, while not the most pleasant thing to have done, it is at least doable. I will check into the bone stimulator and thought the idea of a knee scooter was brilliant. I didn't even know such a device existed.

I'm in Canada and our medical system is based on being pragmatic. Here, we must try every conservative, low -evel technique first even when we know it has less than a 1% chance of working before taking care of anything permanently. Regardless of how much life and work time are sacrificied. I know, I know, be glad it can get fixed, I am just frustrated - he could have done this last year and I'd be almost done with it by now.

Ellen - I am so happy for you that the pain is gone and you can walk. (I'm kind of glad for me too, as it means it does work). I snorted with a sort of cynical agreement when you said you would walk longer but the other foot hurts too much. Feet! If you haven't had to deal with them when they malfuntion, people just can't understand. I am highly impressed with your attitude that would take care of what needed doing and figure it out without asking for help. I'm going to have to do the same thing. Looks like you also got around in the house with a rolling stool for your knee, so I am absolutely going to get something like that. Brillaint ideas, as yes, I agree, crutches suck and I find them hard on every other part of my body.

I long for the day when the thought of taking a step to get a glass of water doesn't start an unconscious sudden thougt of "well, that's going to hurt."

Brenda, if you have time to share your recovery, i will be an avid reader. These tips and encouragement are invaluable to me. I wish you a relaxing and throb-free evening. Thank you both.

grec1 03-28-2009 06:40 PM

Re: If you have had your big toe fused, please respond
 
Hi Eldee
I am now almost three weeks post-op and continue to be pain free from the surgery. I have also been allowed to resume my RA injections and since they are both anti-inflammatory and immunosuppressants and that has really helped the fatigue and the overall body pain I experience daily without them.
I have been allowed to return to work as long as I walk on my heel and do not weight bear on my foot. So I went back last Wednesday 2 weeks post-op and was able to get around very nicely on my walker. I have been able to resume my regular chores at home with the exception of grocery shopping (which is really because I hate it at the best of times!)
I chose to finally have this surgery in early spring (after cancelling two previous dates) as I wanted to be able to enjoy some of the summer in the hopes that recovery would be well underway. Fingers crossed, but I do expect that I will probably have more pain once this cast is removed.
I also think that I am finding this surgery easier than the bunionectomies I had 3 years ago on both feet at once. At least one foot can bear weight.
It was really a difficult decision for me to make as well, but both my Rheumatologist and Surgeon indicated that it would be my only chance for relief. The way I was having to walk was affecting my back and several other areas and that was what finally made me do it. I knew the post surgery pain would be awful and that first week was miserable, but once I was off the Demerol I felt 100% better. I hope this will be the case for you too. Just as others have said stay on top of the pain and make sure you eat well to protect your stomach.
Good luck to you - let us know what your surgery date will be.
To everyone else - thank you so much for sharing your experiences at the different stages of recovery you are all at. This information is so helpful when going through it and before when trying to decide whether or not to go ahead. Invaluable!
Have a great weekend everyone.:wave:
Sharon

GRAMANNE5 04-04-2009 07:46 PM

Re: If you have had your big toe fused, please respond
 
Hi
I have a big toe fusion and three surgeries for lis franc injury. Nine screws and two plates. I,too, live alone. Don't give up. You will get through it. Ask friends for help and try not to anticipate problems.
Good luck.
A friend

tijean 04-05-2009 05:23 AM

Re: If you have had your big toe fused, please respond
 
I also live in Canada... Toronto actually and spent a lot of time trying to find one of those knee walkers that everyone raves about. I could not find one anywhere. Called all the medical supply places and checked all over the web... No one would ship to Canada. If anyone does find one this side if the border, please post it. Thanks!

footfalls 04-06-2009 09:34 AM

Re: If you have had your big toe fused, please respond
 
Hi. It's two weeks post surgery/fusion of big toe for me. After I read your post, I put a fluffy towel on my computer chair and use this as a scooter (since it has wheels). It works great. With this surgery we learn how to crutch it, scoot, hop and rock and roll. I twist over furniture, slide,roll, crutch, scoot whenever needed. The good thing about this is that I don't become totally dependent on my husband, and that I get a little exercise as well. Hope you are doing better.
Footfalls

footfalls 04-06-2009 10:04 AM

Re: If you have had your big toe fused, please respond
 
Brenda,
Good to read your message, so positive and hopeful. I am 2 weeks post op and what has helped me is to set things up around myself to make my day to day life easier. I keep a small port-a-pot right next to my bed (WITH A COVER) for night time pit stops. I keep a water jug and paper cups and tylenol etc right next to me. Phone, TV channel changer, radio changer, books, paper, etc all close at hand. This means I don't have to make a complete nuisance of myself with my husband. He is home alot, but I am trying to be as independent as possible. I keep my computer chair with wheels nearby so I can scoot wherever I need to. I try to hop, scoot, crutch,cane it, roll over and slide over whatever I need to in order to get done what I need to do. This and exercises has helped to keep up my strength. Have you come up with anything to build back the muscle strength in your leg (the one that was operated on)? I have 2 more weeks off the foot completely and then 4 weeks using my heel only.

I have lived with pain in both my feet due to Hallux Rigidus for over 15 years. I am a Physical Ed and Dance teacher, and my Orthopedist discouraged fusion until I felt I couldn't live without it. I am now 58. I had a Chelectomy on my left toe 13 years ago and now Fusion on my right. I will eventually need it on my left, but this is not something I am anxious for. Want to let this heal for a year, and see how it all works out. It may turn out that living with the pain was easier than the end result of fusion. I hope not though. Would love to talk to those who had surgery over 6 months ago to see what they say about it all. I do believe that we can learn to live with almost anything we need to. I try to stay positive.
Footfalls


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