DESPERATE-I need help any advice most welcomed!!!

dean76

Hi there, I am new on here and know others have similar messages so will keep this really brief.

I was born with inturned feet and clicking hips. I had my shoes built up with 'outter flappers' on the soles to make my feet turn outwards as I walked.

My toes still all curl the wrong ways and bones are where they shouldnt be so walking is unbearingly painful!

At 29 I had my big toe shortened, straightened, bone shaved and a pin put in. At 30 I had same thing done to other big toe. I still couldnt bend my toes so a pin was removed in one toe. Surgeon didnt do an Xray before and during surgery had the greatest trouble removing it because bone had grown over the original insertion place. Still couldnt move my toes properly so eventually sent me for Pysio. Pysio said I was deliberately not bending my toes when I walked and told me to practice my balance as I keep falling over ?!?!?! After doing that for 12 months Surgeon told me that no amount of 'exercises' would improve my balance so to stop doing them.

Surgeon did another Xray and discovered that I have no tips on the bones of my toes. Hence why my balance is bad he said. After pleading he sent me to Rhuematology because of locking and swollen knees who said I was fine but have overly flexible joints which might account for pains in my feet and knees. Rhuematology suggested I went to Orthotics for insoles; after 3 types of insoles the pain was getting worse. But surgeon told to perserve with them.

4 years later the pain is so bad I cant sleep or function and walk with a stick most of the time. My surgeon said my feet are turned inwards which might account for pains. He said it is because of insoles which I reminded him is what he insisted I keep on using despite pain.

I asked for him to do an X-ray and he diagnosed advanced Hallux Rigidus in both feet within 2 weeks he operated with a Arthroscopy (camera) and during surgery chose to do a Chrondroplasty (cartilage cleaned and repaired). When the dressing was removed by the nurse I put my trainer on and he walked into the room without speaking to the nurse. He asked how I was and I told him the pain is worse than it has ever been. I appreciated that it was probably swelling but it looked and felt worse than before surgery. He didnt look at my foot just told me there should be NO pain and there was nothing more he could do until the pain became unmanagable.

He told me I need to wear hard soled shoes to stop my toe bending as I walk but I explained my toes dont bend at all. So that isnt the problem. Ive tried wearing such shoes but it doesnt work. Even lying in bed they hurt. So he said it would be the duvet cover putting pressure on my big toe joint. Which I think it a load of tosh to be honest!!!!!!!!!!!!!!!!

I asked for pain relief and that my GP as him to recommend what I should be prescribed and he said to see my GP and let him decide because he was just far too busy. I said that my GP has written numerous times and he doesnt respond. Nor does he write to my GP following clinic appointments. So my GP doesnt know what the situation is and relies on me to relay information to the them. Not professional!

My father mentioned joint replacements in the future and he said that was a long way off. He said he was discharging me but I begged him to help me and he said if I really, really wanted to I could come and see him in 2 months time. He said it as if I have nothing better to do than spend my time in hospital clinics!?!? I go to see him on Friday.

I am sick of aching toes. Corns, callouses and hard skin amongst other things because of pressure sores on my feet. I cant stand without falling over and losing my balance. Life is on hold and he clearly is not interested.

Any advice anybody can give would be most appreciative. Many thanks in advance!

Dean76 x x x

lindalegs

Hi Dean,

How absolutely awful for you

I think your GP needs to refer you to another Specialist as this one sounds awful and really of no help to you at all. The fact that he neither responds to your GPs letters or keeps him informed of your clinic appointments is appalling and speaks volumes. His attitude also sounds flippant and uncaring and I think you need to make a formal complaint about him to PALs at the hospital.

Using a bed cover cradle could help with keeping the duvet off your feet at night and give you some relief - you should be able to get one from shops that sell disability aids or if you have an occupational therapist - they should provide you with one.

I'm sorry to say I'm a bit at a loss as what to suggest to help you during the day but sincerely hope you get some relief soon.

Take care.

Luv Legs

woodbon

Hello Dean, Welcome to the site, I hope we can provide some help and support for you.

I read your post with increasing anger at the way you've been treated. It would seem that your surgeon has a total lack of feeling and respect for you and your GP. You say that your GP hasn't given you pain relief? Surely he could give you something. Can you be referred to another surgeon for a second opinion. We all have the right to a second opinion. I would ask your GP to refer you to another surgeon.

I really don't know what to suggest, apart from that. The lack of communication seems to be bad too.

If all pain relief has failed, most places have pain clinics where specialist in treating pain can offer treatment to help you cope. I would also ask my GP about that, too. Love and best wishes Sue

dean76

Thanks ever so much for mentioning the bed cradle suggestion. I am soooooo pleased you mentioned that because if it wasnt for people like yourself until I get my GP to refer me to somebody else I would no know about.

I went for a Blue Badge assessment last Friday which the Occupational Therapist mentioned I should have no problems getting. They also told me to put in for DLA which I already have and waiting for a decision by 10 June 09. They told me about a disability equipment assessment unit they have which I didnt understand but will look into further. I am soooo glad of your advice.

I work in a school and my surgeon's wife does too apparently so he is always off during school holidays which means no surgeries or clinics. Im hoping to get a new job in September so if he can do something for me I hope it is this term so I am recovered before September.

Another daft rule he has always told me as well is that he will only do one surgical procedure in a 12 month period. Although in March he did 2 for me. When we went in for day case surgery in March he told us we wernt having surgeries that day and would be asked to come back another day.

We had all got worked up for nothing then an hour later the nurse came in to send us to theatre we told her and she said he had been joking and to ignore him. Lucky none of us had eaten something or gone home. What a cruel trick!

There were people there having 3/4 procedures at once when I spoke to them they all had kicked up a fuss which is why he did it for them. Why do I only get 1 procedure at a time. Waiting lists doctured perhaps me thinks ?!!?!?!??

woodbon

I'm sorry but he sounds totally MAD. :shock: :shock: :shock: Like someone from a poor comedy film!!! The only things I could suggest you do are ask to see someone else. I think if it was me I'd have to or I'd do something awful to him!! I'm so sorry for you and his other patients. Love SUe

dean76

Hello and thanks for your response, I really, really truly appreciate your comments. I agree my surgeon is a waste of time. He is so full of his own importance the way he strolls around the clinic.

Last time I was in clinic I had a 1.30 appointment and the receptionist was chatting and kept me waiting to give my name in for 3 minutes. So at 1.35 they called the 1.40 person in. When I was seem the surgeon sent me for an Xray and made me wait till 3.25 before he called me in he said because I was late for clinic he made me wait. Rather than others I said I wasnt late it was the receptionist talking but he wouldnt listen. How petty and childish can somebody be!!!!!

I did take 30/500mg Co-codamol for another complaint but I ended up taking these for feet pains and the GP realised and gave me Etodolac 60mg but they upset my stomach after 3 days so told nothing else I could be given.

Went to a locum who didnt know me and gave me 1300mg Glucosamine for Arthritis in hands. But GP give me anything for pain until surgeon recommends something. Plus they said I need a break after taking the Co-codamols for 6mths. So presently got nothing for the pain.

dean76

He is a really idiot of a person but when I first went his clinic he was really considerate and listened to me. Seems the more procedures I need the more he doesnt seem to care. Others feel this too. If you only need 1/2 procedures he is fine but need more and he turns NASTY!

Im really hoping to get a job in a nicer school in September so if I get referred to someone else I wont get surgery done in time for next term. But if I dont need it then I am defo going to get my GP to refer me to somebody else.

Dean76 x x x

skezier

Hi Dean,

First of all Hi and I hope you find the site helpful. I had a injury and the opp to 'cure' it left my toes all floppy and useless so they took the joints out and fused them, I have also had a bit of bone removed and the big toe s shortened. It really helped as they also did a clean up while in them.

I think you do need to see a better and more understanding person...... I saw 3 before I saw the best one, 2 of the others were going to just take the toes off and the 3rd well he also wanted to remove 2 from my other foot to make more room for the arthritis..... Didn't like that idea at all! Anyway see if you can find out if one of the ortho specialises in feet........ If there is one see them and if there isn't can you go and see one in a different hospital?

I hope it gets sorted for you, Cris

suncatcher

this is awful get the doctor to refer you to someone else. there are better docters out there this man is not good at all for you. i hope you can find someone who will help you soon all the best and welcome to the site from joanne

dean76

Hi Cris

Thanks for your posting, Sounds painful the getting the toes removed part. Ive heard of fusion and read bit about it on the net. But my surgeon doesnt seem to like people who read up on stuff. Ive suggested is there something that he can do which will take pain away because toes dont move anyways. Because of feet deformities Ive never wore heeled shoes anyway.

He looks at me as if he is wondering what he is going to have for his evening meal when he goes home - kind of look and gets a nudge from the nurse to pay attention.

How long did it take to recover from a fusion? What was the after affects like? Was pain bad? Was it a day-case?

dean76

joanneprice wrote:

this is awful get the doctor to refer you to someone else. there are better docters out there this man is not good at all for you. i hope you can find someone who will help you soon all the best and welcome to the site from joanne

You are all very kind; Ive been overwhelmed by the kindness of you all. I really do not feel like I am on my own now like I did till I found this site. Just had so long of this useless doctor making me feel like I want surgery for the sake of it and not listening to what Im saying. So when we next meet Im going to tell him about the pains and if he doesnt suggest surgery within the next month then I am going to get referred to somebody else at a different hospital. Im not going to tell him though just get my GP to refer me. Because lets face it he doesnt respond to letters anyways.

dean76 x

skezier

Hi Dean,

They removed the toe as a day case and you know it wasn't that painful. It had to go! I had problems with the stump cus i was 22 and still a size 10 and image kinda mattered! They have said over the years how neat it is......... The joint removal was 3 days in and yes I should be lying if I said that wasn't painful but only for a day or so cus you have to learn not to try and move them.

The other opps were 3 days and again not so bad. the worst thing about the toe fusion is if you forget the wires and knock them..... :shock: I learned not to do that quite quick and they did that one when I was 24. I had both feet done together as the left needed re- doing 9 months after the first break and clean up. The pins are too big and should be removed but I have very bad circulation so they stay till they really need to come out.

Get your self a second opinion and really dig in for some help. the last opp was 9 years ago and it still holds. Don't let one man decide as I said for me on the fusion it took 3 before I found the right one and the last opps took 2 and then I found a really nice guy who made my feet so much better. take care, Cris x

colinone

Hi Dean what an awful mess doctor sounds like a right prat and as for the surgeon I just don’t know what to make of it all. I’m at a loss for advice and just wanted to say welcome to the site. You have found a great bunch of people who will give you all the advice and support you need, I hope things get better for you soon and keep your chin up.
Colin

loz23mcg

Hi Dean76,
I had a similar problem with my first Rheumy - he was dismissive and rude and after only trying one type of treatment he told me "there's nothing else I can do for you", as though that was my fault! :shock:

I came back to this site and I asked people to recommend a Rheumy in my area - and they did. She has been brilliant, the hospital is super efficient and so I am being properly treated and cared for - which is just as it should be for all of us.

I would agree that it's well worth getting a second opinion as you say, but it's also worth asking everyone here if they can recommend a rheumy near you, then if you like the sound of any particular one you can go back to your GP and ask to be specifically referred there.

When I did this, my doctor was delighted to help me as he'd been trained there. I don't know if they were influenced by this but I got an appointment less than a week later!

Best of luck, whatever you decide to do - and please keep us up to date with how you get on.

madgirlzzz

Hi, can not believe how awfully you have been treated think some people forget we are human not just case's and a number!
as well as asking to change specialist i would think about ur doctor not giving you pain relief!
Can't remember if you said but try getting refered to an OT for your feet to. I have rheumatoid arthritis and when i said i has problems with my feet my rheumy sent me to a foot surgeon who has helped but always wants do to surgery and has not suggested anything else! were my rheumy nurse sent me to an OT, who has given my some special cushioning(insoles!) for my shoes and recommended foot wear he's been great! and nice to try and deal with issues without meds or surgery for a change!!
good luck and i hope u get some relief soon gayle x

dean76

Hi there

I have just changed GP's to the one I have now. Because my last GP surgery made numerous dangerous mistakes with my health concerning another condition I had at the time.

Can anybody suggest a good foot surgeon in the Liverpool/West Lancashire area?

Cheers. xx

frogmorton

HI Dean
I have been away and just read this whole thread. This is a nightmare and I am speechless!
We might not be able to sort out everything for you, but we will all do our very best to suppport you in any way we can.
take care
Toni x

sharmaine

Dean
Your poor treatment by a medical professional is not right. I think you need to change your specialist. You are in pain and it's not right that you should suffer like this. Make an appointment to see your GP and ask to be referred to somebody else. Type a list of your problems and hand it to them to keep on file. I do hope you receive some relief. I really hate hearing people suffer in this way.
I hate it when my feet hurt and I don't have the problems you have.

Let us know how you get on.

Sharmaine

quote="dean76"]Hi there, I am new on here and know others have similar messages so will keep this really brief.

I was born with inturned feet and clicking hips. I had my shoes built up with 'outter flappers' on the soles to make my feet turn outwards as I walked.

My toes still all curl the wrong ways and bones are where they shouldnt be so walking is unbearingly painful!

At 29 I had my big toe shortened, straightened, bone shaved and a pin put in. At 30 I had same thing done to other big toe. I still couldnt bend my toes so a pin was removed in one toe. Surgeon didnt do an Xray before and during surgery had the greatest trouble removing it because bone had grown over the original insertion place. Still couldnt move my toes properly so eventually sent me for Pysio. Pysio said I was deliberately not bending my toes when I walked and told me to practice my balance as I keep falling over ?!?!?! After doing that for 12 months Surgeon told me that no amount of 'exercises' would improve my balance so to stop doing them.

Surgeon did another Xray and discovered that I have no tips on the bones of my toes. Hence why my balance is bad he said. After pleading he sent me to Rhuematology because of locking and swollen knees who said I was fine but have overly flexible joints which might account for pains in my feet and knees. Rhuematology suggested I went to Orthotics for insoles; after 3 types of insoles the pain was getting worse. But surgeon told to perserve with them.

4 years later the pain is so bad I cant sleep or function and walk with a stick most of the time. My surgeon said my feet are turned inwards which might account for pains. He said it is because of insoles which I reminded him is what he insisted I keep on using despite pain.

I asked for him to do an X-ray and he diagnosed advanced Hallux Rigidus in both feet within 2 weeks he operated with a Arthroscopy (camera) and during surgery chose to do a Chrondroplasty (cartilage cleaned and repaired). When the dressing was removed by the nurse I put my trainer on and he walked into the room without speaking to the nurse. He asked how I was and I told him the pain is worse than it has ever been. I appreciated that it was probably swelling but it looked and felt worse than before surgery. He didnt look at my foot just told me there should be NO pain and there was nothing more he could do until the pain became unmanagable.

He told me I need to wear hard soled shoes to stop my toe bending as I walk but I explained my toes dont bend at all. So that isnt the problem. Ive tried wearing such shoes but it doesnt work. Even lying in bed they hurt. So he said it would be the duvet cover putting pressure on my big toe joint. Which I think it a load of tosh to be honest!!!!!!!!!!!!!!!!

I asked for pain relief and that my GP as him to recommend what I should be prescribed and he said to see my GP and let him decide because he was just far too busy. I said that my GP has written numerous times and he doesnt respond. Nor does he write to my GP following clinic appointments. So my GP doesnt know what the situation is and relies on me to relay information to the them. Not professional!

My father mentioned joint replacements in the future and he said that was a long way off. He said he was discharging me but I begged him to help me and he said if I really, really wanted to I could come and see him in 2 months time. He said it as if I have nothing better to do than spend my time in hospital clinics!?!? I go to see him on Friday.

I am sick of aching toes. Corns, callouses and hard skin amongst other things because of pressure sores on my feet. I cant stand without falling over and losing my balance. Life is on hold and he clearly is not interested.

Any advice anybody can give would be most appreciative. Many thanks in advance!

Dean76 x x x[/quote]

dean76

I know it seems hard to believe but until I wrote the posting and thought about everything in one context I really cannot believe how stupid I have been to let this go on so long.

Last time I saw him he told me 'there are other things going on with your other toes aswell; which isnt good'. When I asked him to explain in more detail he went quiet and changed the subject.

As another patient said you really need to push and push him to sort out one issue at time with your feet or he gets sidetracked and nothing gets done. But if I dont know what the problems are then they wont be fixed.

The hospital have now cancelled my appointment till next week so gives me another week before I need to see him anyway. Although this is now 3 weeks later than I was originally supposed to see him.

Dean76 x x x x

dean76

I actually saw the Foot Surgeon today was told there was NOTHING that could be done as I am sympomatic apparently. The surgeon said after touching my big toe and asking me to walk up and down the room that there is definetly no movement from my toe and he doesnt understand why ?!?! He says that as I had surgery 15 March there is the possibility that the pain is because things are settling down. He told me he can only fix mechanical problems and at the moment my Xrays only show that I am 'sympomatic' so have to wait till I am alot older.

He said that I am way too young at 32 for a joint replacement and its not just because of my age and that they wouldnt last long but that it would also lead to problems with other joints and start a vicious circle. I didnt consider joint replacements affecting 'good joints' and making them start to cause problems!

He said he would contact my GP and tell him to prescribe me anti-inflammatories and cortisone something or other????

I balled my eyes out and was sobbing. He was very considerate and nice in his approach but said he was sorry he couldnt physically do anything. He seemed sincere in that he would do something if he could.

I told him I have arthritis in my hands aswell and he asked me what was being done about that and I said that I was going to ask my GP to refer me to a hand specialist tommorow.

Not a good day for me. Guess things will sink in eventually. People on here are totally AMAZING!! Cant begin to thank you all for your postings.

Love Dean76 xx

colinone

Hi Dean
I'm told Two good surgeons at Fazakerley
Molloy and Montgomery
You can look them up on the net and see what you think, The thing is Aintree hospitals trust is also a teaching hospital. I have not had surgery on my feet but last year had 2 operations and insistered i would not have an intern even with suppervision so the top man done done mine, been ok since. You could explain to your new GP and ask him to recomend a good surgeon. I think when you get a surgeon that deals with many things its not so good, The 2 i gave you only deal in feet and ankles. Take Care
colin

dean76

Hi thanks for the posting. Im currently at Aintree hospital but not with the foot specialist youve mentioned.

Dean76

dean76

My Surgeon has written to my GP stating that he can no longer offer me any treatment. He says that when I walk I dont move off on my toe which may account for the joint stiffness and that every treatment he has given me, I have said hasnt worked and pain is even worse each time.

I am FUMING!!!!!!!!!!!! big time! Feel like writing to him and telling him exactly what a plonker he is, although Im not going too. Somebody suggested writing to PALS or Director of Hospital but they wont take any notice. I have put up with so much rubbish and bad treatment from him. I have NEVER and I say Never said the treatments have not worked. The treatments have worked and Ive thanked him each time once I even bought him and his nurse a box each of expensive choccies. The pain has gone an awful lot each time. So where he has got this from I do not know.

I am just ready to burst a blood vessel now because he has written a letter which will remain in my medical notes which is complete LIES. Ive since been referred to another hospital for a 2nd opinion but thats not the point - how dare he say something that is incorrect. Especially when its down to him not doing Xrays and making me wear insoles so long that it makes my feet turn inwards. No wonder my toe has stiffness. He hasnt admitted his mistakes AT ALL.

Sorry for the rant!!!!


Dean76 x