BIG TOE ARTHRITIS

[Imagine1]

Hi everyone,

I have been in agony for over 4 years with big toe arthritis which was found on an MRI Scan which I had due to a broken ankle? the nurse at the hospital said that I had sprained it but when I had an Xray it turned out to be broken, big difference isn't it? I was told that the MRI scan showed that I had arthritis in my big toe, this was 4 years ago and nothing was done about it. It has left me disabled, I can't work or stand for very long and walking is a chore. I have been to see a specialist many times and my GP. Again nothing has been done. I recently saw a pain specialist who has past me twice to two different hospitals, he doesn't know how to treat it. I asked him if I could have an operation because I had read that people with this condition can. In the early stages I could have had an operation which would have helped me with the pain and to walk, the problem is now that it has been 4 years and the arthritis has become severe, the operations are now new toe joint and screws in the toe which will make my toe even stiffen than it is now. Which would be useless for me now. I don't know what else to do? I am at my wits end. I have now got to wait at least another year to see another specialist which again will be a waste of time.

Thank you all for reading this.

[cyberbarn]

You have said you have seen specialists, have you seen a podiatric surgeon? They are not widely known about but they are the specialists in foot surgery.

I had problems with my big toes, and have had three surgeries now. On my right I had a lump of bone on the top, and pain when walking. They remove the lump and put some space between the bones in the joint and it has been brilliant.

My other foot was a lot worse and had basically got so bad the toe joint didn't move. They suggested that I have it fused but I refused so they put in a silastic implant. Sort of like a joint replacement. It has worked well, and although I still get a little pain, it isn't nearly as bad as before and the toe bends.

The podiatrist surgeons that treated me were brilliant. But it was only because my GP knew about them that he thought to refer me there rather than anywhere else like orthopaedics.

So if you can ask for a second opinion to see if you can have a silastic implant.

This is the information sheet that I was given that you might find helpful.

wyevalley.nhs.uk/media/1026...

[Imagine1 in reply to cyberbarn]

Aww thank you very much for your reply. I have seen lots of orthopaedic surgeons and pain specialists but nobody has helped me. I have never heard of podiatrist surgeons before and I will be definitely speaking to my GP when I see him on Monday and I am going to mention this. I have heard of the many operations I could have had but haven't. I really don't want to have to wait for years to eventually get some sort of operation. I should be a priority after all this time. I have heard of the implant before. What annoys me the most is the hospital that I have been referred to is only going to diagnose me with CRPS, which I already know about. This is just going to hold everything up. Again thank you for your reply, it is most helpful.

[Imagine1 in reply to cyberbarn]

I have just phoned the hospital which I have been referred to and they have only just got the referral. It has took 5 weeks to get from Manchester to Liverpool, absolutely disgusting. I was told there is a 33 week waiting list as well, so that will be nearly 5 years altogether of having no treatment and being in pain that I shouldn't have been in. I really don't know what else I can do. My GP is rubbish, again all he will say is wait for the appointment. How long do I have to wait FOREVER! I can't afford to go private because they don't see people with underlying illnesses, so that is a waste of time as well. I am at my wits end with it all.

[Batty1]

I agree with cyberbarn I would go see a foot doctor.

[Imagine1 in reply to Batty1]

I really don't know why I haven't yet? surely this should have been the first doctors to see about my foot. It doesn't surprise me though. I am sick and tired of seeing my GP every week to be told the same thing I have to wait for the appointment. I wish they could feel the pain that I am in but no they don't care. I have been issued with different insoles for my shoes that don't work, I have now got to buy 2 pairs of shoes in different sizes because my foot is so swollen I can't get my normal shoe size on. It costs me a fortune because there are only one type of shoe I can wear and they have to be soft over the top and there is not many shoes I can buy that are like this. I recently had to buy trainers with a big heel on them and soft topped and they cost me £100 per pair. It is ridiculous. I can't afford this all the time. I am on disability benefits because I can no longer work and the DWP have halved my money.

[Batty1 in reply to Imagine1]

It certainly stinks … I would see a foot doctor since the rest have failed you miserably.

[brauncs]

I feel your pain Imagine1. A couple of years ago I saw a podiatrist for what my PCP thought was a "Mortons Neuroma". It turns out that my right foot is deforming due to arthritis which is really bad in the big toe. Also, it has caused my second toe to become a hammer toe. The podiatrist scanned my feet for orthotics and over the last two years has given me two cortisone shots in my big toe. A bit painful but helps a lot. I also do foot exercises in the sitting position with my feet flat on the floor and lifting just the big toes twenty to thirty times and the same reps lifting the other toes with the big toes planted on the floor. After that I use a small foot roller(Beskar brand) on both feet individually back and forth about thirty reps each. I also have bone on bone arthritis in my left knee and my thumbs so I take three supplements which I believe to be very effective...Boswellia Seratta, Turmeric W/black pepper, and Glucosimine/Chondroiton/MSM. My PCP also just prescribed 100mg of Celocoxcib (generic for Celebrex) twice a day. I know that's a lot but I also was diagnosed with Parkinson's 8 years ago so it's imperative that I stay really active to help slow down the advancement of the disease. Hope you might get something useful out of this.

Cheers, Craig

[Imagine1 in reply to brauncs]

Aww thank you for your advice Craig, it is so helpful. I am so sorry that you are not well and your profile photo looks so young. Take care of yourself.

Karen

[brauncs]

Thanks and good luck 🙂

[rabbits65]

I can understand how you must feel. I have bad arthritis in my toes mainly in the right foot, extremely painful. My doctors surgery don’t even deal with feet, they just tell me to go to a podiatrist , which I do, She just cuts nails mainly, plus other bits and pieces on the feet etc. Maybe I need to find out more. Shoes pinch my feet when I walk. I buy Skechers. Good luck to you.

[Imagine1 in reply to rabbits65]

Thank you for your reply, It is awful isn't it being in so much pain and nobody cares about it. I have to wear a type of shoe which is soft on the top, Sketchers are good but they are too flat for me to walk in and I trip up, I bought a pair of high healed trainers, Steve Madden make and they are so comfortable, but so expensive. Thank you.

[rabbits65 in reply to Imagine1]

gosh. High heels !!! I cannot where any heels because my balance is very poor, plus the fact I have some tonnitus and ear issues causing poor balance. After I text my last message I re read your first piece all about your history and I think your marvellous coping with all you’ve put up with. I’ve never broken a toe and I am shocked to read that your break was not discovered straightaway. I do hope you get some improvement soon. I am not expecting much improvement at my age of 71 years. I just keep exercising my dogs even though I am in great pain. I have to add that now I don’t feel quite so alone. I hope we can perhaps keep in touch in the future maybe. I live in Bexhill on sea

[Imagine1 in reply to rabbits65]

When I said high heels, I meant higher than normal trainers, haha. Whenever I try to put wedges on or anything high my foot is in terrible pain and with not being able to bend my toe it is virtually impossible to wear them now. I broke my ankle over 4 years ago and that is why I have developed severe arthritis in my toe because for the past 4 years I have been walking on my big toe and basically ruined it. I tried to sue the NHS but after 3 years they admitted it and then a week later denied it. They have ruined my life, a simple fall downstairs has caused me so much pain and has ruined my foot, with the added bonus of Complex Regional Pain Syndrome added to the list, which I never had before. It will be great to keep in touch on here. I live in Manchester.

[rabbits65 in reply to Imagine1]

Oh dear have you seeked some advice about investigating your claim, don’t completely give up on it… also, have you ever had any shoes made by the NHS. , so I’ve got these shoes and it is such a shame because the top part is brilliant and nice and roomy but they have put this stupid heavy soul on the bottom of the shoes and it is so stiff there is no bend in the foot bed. What a waste of money they’ve been.

[Imagine1 in reply to rabbits65]

Yes I took more advice and there is nothing more that I can do. I contacted The Health Ombudsman shortly after the 3 years that I waited from the solicitor, the problem with that was because it took 3 years and I didn't consult them they don't want to know either and I thought that they helped people. They wouldn't do anything until I reported it all to the specialists which I did but it took too long to get a reply and it was over the 1 year and the Ombudsman said I was too late. I explained that it all happened just before Covid and everywhere was shut and nobody was doing anything to help. Again the Ombudsman didn't want to know. I can't believe that nobody can help me and it is the NHS that has left me this way. I was using the compensation to go private and they even stopped that from happening. I wouldn't trust the NHS ever again especially to make my shoes. The shoes I have got are fantastic. They are so comfy until I take them off and then my ankle and toe starts to hurt again.

[Hidden]

worth trying a medical solicitor again or the Citizens Advice Bureau?

I have arthritis in all my toes. I’ve been lucky in that it really only causes me pain at night and if I’m particularly bad in how I move my toes, e.g. Bending too far back unintentionally.

I was prescribed capsicum cream which one of the Arthritis charities had on their suggestions. I don’t find it that helpful but maybe worth a try for you?

[Imagine1 in reply to Hidden]

Thank you for your reply, I have contacted medical solicitors and each one have said it is over the 3 years of being able to help me with a claim. Basically they don't want to know. The actual solicitor that didn't do anything for me was a trainee and he was absolutely useless. He did have a supervisor with him but they were a waste of space. Since then I have got a lot worse and in agony all the time. Citizens advice is the same. I have contacted them and they don't want to know either. Luckily for me though I have an appointment at the Walton Centre in Liverpool, it was a 33 week wait for me but because I constantly emailed them and told them how ill I am they have brought the appointment forward to next month instead of the end of September. Hopefully I will get some help from them.

[Hidden in reply to Imagine1]

Do you have a case against the solicitor practice then? That’s worth a chat with the CAB

[Imagine1 in reply to Hidden]

I actually contacted the Health Ombudsman about this and they didn't want to know either. Everywhere that I have been, phoned up and contacted have been a complete waste of time. How people manage to get compensation for slight injuries and never have a problem getting it is beyond me. I have been left disabled by the NHS and nothing was done about it. HOW CAN THEY GET AWAY WITH THIS? I have recently found out about the injury that I had and what the NHS should have done, they did absolutely nothing at all. Just left me to cope with the terrible pain I am still in after 4 years.

[Hidden in reply to Imagine1]

Yes I read about that.thats an awful experience. I’m sorry that happened

[Imagine1 in reply to Hidden]

Aww thank you, I used to be so fit and active before the accident. I used to go to the gym 5 times a week, I used to dance as well. I can't do any of this now. I always wanted to buy a bicycle to ride on and I can't even do that due to not being able to move my foot. The NHS has a lot to answer for and to top it all off when I had the accident the hospital was next door to where we lived, so we didn't waste anytime in getting there. When I had my Xray and got no treatment by the time I got home my foot had doubled in size and turned blue. I went back and still they didn't want to know because they had discharged me and told me to go home.