So angry, frustrated and fed up.

[sharlynn]

i have been having trouble with my right foot for 6 years now. I get a lot of pain when walking and it is affecting every aspect of my life, I have got to the point sometimes that i just want to cut it off myself. I have been seeing the health professionals for 6 years for this foot. After endless physiotherapy (even paying for private myself), shoe adaptions exercises, i have had 3 steroid injections in it and i am still having lots of pain. 6 months ago i had an appt with the consultant and turned out to be his SHO, he was the first person to tell me what the problem was and even showed me the damage on the MRI scans i had had. He told me that the damage is irreprable and surgery would be the only thing to help. He booked me in for another steroid injection and advised me that after this it would have to be surgery as they don't like to keep doing injections. I had my injection, lasted approx. 3-4 months and received my new appt. I had worried about having surgery and it has took me a long time to come to terms with the fact that this is my only option to rid of the pain. I had geared myself up for the appt, got my house ready for when i would be in plaster for 3 months, arranged with family members about help etc, and also informed work that i would probably be off work for at least 3 months. I went to my appt on Thursday all prepared to be booked in for surgery, my appt was 2 hours delayed and then finally i was called in - the appt lasted approx. 2 mins. he asked how i was, told him i was still in a lot of pain, that was the only time he let me talk, he never once looked at my foot and he went on to say that he suggested physiotherapy, i couldn't believe it. I explained i had 4 lots and one was private, to this he started to tell me that surgery is very risky and 1 in 10 fail and once it is done there is no going back etc. i couldn't believe he was talking like this. I was speechless, i had got myself all ready for this ( and believe me it has taken me a long time to accept that surgery may be my only option) and now i am back at square one, then he said if physio does not work then will have to go ahead with surgery but after all the negative he said i am now frightened again to have it. I never got the chance to express how i felt as he just went. I was escorted out of the room and told to book in at physio. I came out and was so angry,confused and hurt ( i felt as though my quality of life did not matter). Now i am having trouble on deciding what to do. He has sent me another appt for 5 weeks time, i will not have had the physio by then so i know when i go to see him he will tell me to come back when physio is done. I feel like ringing him up and telling him to forget the whole thing and i will just have to live with it. I am so depressed with it all. this condition is hard enough to live with without all this and also on top of all that i am having a first formal interview tomorrow at work as i have had 24 days this year off work but because they were 5 different episodes i have to have this meeting. I have had enough of coping with this, i feel like i am being punished for having this condition as if i have created this myself. I am fed up with health professionals keep moving the goal posts. They keep telling me how serious this conditon is etc and then treat me as though it doesn't matter. Sorry for the long moan but i have had enough.

[watson3]

Contact PALS patients and liasion services at your hospital. Tell them the doctors name. Explain about your dissatisfaction at your consultation.

Phone the secretary of the consultant and ask for an change of appt. Also phone the physio dept ask for any cancellations and explain the situation.

Don't be fobbed off.

Stand you ground

You deserve a fair consultation that resolves your health issues, so push

For results

Good luck

Carole

[cathie]

What a dreadful experience. Carole's advice is excellent, measured but firm. Hope things get better, you deserve it

Xx

[sylvi]

Ditto to what Carole has said. Sylvi.xx

[Hidden]

Oh Sharlynn I feel for you.......If you want to contact me re ankle surgery please do so...I've had two replacement ankles and a fusion all on the same ankle.....I bet you feel that your life is on hold?.....I actually wrote to my surgeon listing my concerns/questions of the limbo I was left in. Is there any chance of you doing that, to at least let him know how frustrated you are whith the whole matter? (It made me feel better too!) Good Luck with it all. Kath xx

[sharlynn]

Thank you all for your replies, i really do appreciate your advice. I feel a little better speaking to you all. I have my first battle with my employers today and then i will battle with the consultant, is this how people with RA are to be treated, i find it disgusting. The consultations i have had over the last 6 years re: my foot i find very confusing, one appt they say he can be repaired then the next they say it cannot. You are so right Watson 3 that i do need to stand up for myself. What's worrying me though is if i push now for the surgery and it goes wrong like he kept telling me it could and he says to me it was my own fault for pushing. I feel like my life is in their hands and they just don't care. X

[helixhelix]

I really do sympathise about that feeling that your health is in the hands of someone else, it is endlessly frustrating to be bounced around by different specialists. What has helped me a lot is to try to understand what's going on as best I can and the read and research for myself so I don't feel so reliant. You don't say what's wrong with your feet, or what procedure is proposed as there are a number of different things that can be done. And there is a lot of information around on the different procedures, so you can find out a bit more about it. That might help you work out the questions you need to ask to make a decision. And It would be an orthopaedic surgeon who would do the op so you could ask to be referred to one, and then make your final decision once you've spoken to the surgeon. But good luck, and yes - get assertive! Pollyx

[sharlynn]

I have suffered with RA for 18 years and my ankles are weak, i went over on my right ankle coming downstairs at work and ruptured the ligaments and tendons, i have been bounced around for 6 years and the last consultant said that the RA has attacked the ankle and is now irreprable. The consultant that i see was referred by my rheumy at the time, he is a rheumatogist that specialises in feet and ankle, i have been told he is a really good surgeon but i just wish they would decide one way or the other as this is going on too long.

[Beth58]

I fully understand where your coming from, emotionally it's a massive strain on us. Sometimes we just need a straight answer to ease our worries and sadly some consultants go around the houses leaving us totally confused.

He may be a very good surgeon but how are his people skills? You can always ask for a second opinion or referral to another consultant.

I was taken into hospital in 97 for a hip replacement, when I saw the surgeon he told me how unhappy he was about doing the surgery because of the damage to my lower spine and SI joints. He said there was a big risk of putting me permanently into a wheelchair. Needless to say I opted out and they injected into my hip to see whether the pain was my hip or spine. Sadly it was my spine and surgery was out of the question.

The point I'm trying to make surgery isn't always the best route and I'm still getting around under my own steam.

My advice is write your questions down and give the consultant the list next time you see him, or make an appointment with one of the Rheumy nurses to check your records and explain everything to you in a down to earth manner. Or have you spoken to your own GP and asked him/her to explain all this to you?

My heart really goes out to people in your position, I do hope you get answers soon.

Beth xx

[sharlynn]

Thank you for your reply, that's a good idea to see my GP and ask him to go through it all with me, i never tend to go to my GP but always wait to see my consultant but they are the ones that are giving me the runaround, so i will make an appt to see my GP and see if he can help me. Thankyou all again for you great advice it really does help being able to speak to people that understand what you are going through. Take Care everyone and i will keep you all posted. X