RA and Surgery..

When I was diagnosed with RA I never though for one moment I would have to endure so many operations. I would never have thought of putting the two together, yes I have this awful disease that I didn't know much about. Did I want to know? if I'm honest no I didn't because I never anticipated it would turn my life upside down. Infact I was very naive as to what the future would hold for me.

At the time I just thought I could take a few pills and everything would be ok, there were no support sites/groups like this to help, basically you just got on with it and hoped for the best.

The first four years my life was taken over my horrendous pain and suffering from head to toe, my feet however were the worst to be affected.

I was told by an Orthopedic surgeon that nothing could be done! apparently I was to young! wouldn't get away with that one now! I was told I could have a wheelchair and basically to get on with it.

My GP was outraged and referred me to a private hospital in Wrexham where I underwent my first operation after just four years of being diagnosed. It wasn't an easy decision to make,I constantly cancelled and kept coming up with excuses. Truth was I didn't want to leave my little boy, I knew I had to stay in hospital for two weeks to recover, and as the hospital was 70 miles away visitors were few and far between.

Eventually I had the surgery,recovery was long and hard but I don't regret anything about it.

After that the need for surgery was coming thick and fast, and every one I anticipated on.

I wasn't scared about having it, it was the recovery afterwards sometimes it would be quite long with endless visits to physio and the OT department to help.

Next came my right elbow over the years I had two small ops to try and relieve the pain but in the end I had to have a complete replacement of my right elbow.

Then came both my wrists,having a arthroscopic synovectomy procedure on each along with tendon repair.

After that surgery was once again needed on feet again, repair of some metal work along with fusion of more joints and a bone graft operation. The bone was taken from each my shins and then placed in my feet along with more pins and screws. After that I just had to wait and hope that I didn't suffer any bone rejection, which I didn't.

I've also had small ops on both knees, mainly keyhole, joint washout.

I know that this isn't the end for me, to many joints have been destroyed by this damn disease. The good thing is I'm not to young anymore!! lol.

I don't regret any of the surgery either I can't begin to imagine what my life would be like without it. Pretty unbearable I would imagine.

It's not an easy decision for anyone to make in this situation, but I had to think of the future, and I wanted quality of life now! Well a better life than I was having anyway.

So if anyone is faced with the prospect of surgery then think about the benefits and most of all less pain!

Take care

Mand xx

[Hidden]

Great blog Mand!!

Ive been told I could have surgery on my hands/ fingers but the rheumatologist also told me he didnt recomend it, told me because of the joints being worse on the first fingers and thumbs then these are the ones that get knocked and have less off a chance of being successfull.

So I chose not to have the surgery on hands for this reason and I am just making do with hot wax baths and physio atm. However my trigger finger problem is now in both hands and its becomming more and more off a problem not just with struggling to do things but also with the pain it causes.

So this is something on my list to speak to my rheumatology nurse about in October when I have my 6 month Enbrel review.

Take care

Julie x

[Hidden in reply to Hidden]

Thanks Julie, I have similar problems with my knuckles. They are so sore and if I knock those nodules, the pain is terrible.

Just last nigh I noticed yet another nodule on my knuckle, they just look so ugly.

My Consultant did advice me against surgery on the fingers due to the increased risk of infection.

Sometimes we just have to put up with certain things I suppose.

Take care, I you feeling better.

mand xx

[Gina_K]

Hi Mand,

Thanks for that blog, I am at the 'making excuses' phase of surgery. Am I bad enough for this triple fusion? arthrodesis op that the surgeon has rec! I have rang his secretary to ask her to ask him, what are the consequences of not having it done? Talk about looking for an out!

I am actually convincing myself that my ankle is not too bad, I am getting around ok these days and only if I go far does it give me trouble. It was so badly effected early on that I actually could'nt walk for 3 months, but now as time has gone by, Its not so bad except in sandles and bare feet looks as if my foot is on wrong to my ankle, as a result with orthotocs and v sensible shoes I get pressure sores under bunion and toes and feet are lilting & curling to right

The surgeon says bunion is not priority and can be done anytime, and would be too much surgery for me if he did both at same time. Ugh I am so confused, if he said my foot would be perfect after I would be more keen to go ahead, but thats not sort of what he said, I'm wondering if I'm bad enough for this big op yet.

My hubs said maybe it would be better to have it done now, as I am in 'remission' and feeling wellish! What you think? I am going to talk to my Rheum Consultant in Oct have apt for 10/10, see what she thinks. Sooner or later? Also I think the other ankle is following suit

The thoughts of being totally out of commision for 3 months (or more) will it get worse if I don't get it done? Should I wait til am in agony??

any comments welcome (not alternative treatment though Haha!)

Regards, Gina.

[Hidden in reply to Gina_K]

Hi Gina, your in remission at the moment so your having doubts on whether you need/want the op, that's understandable because your at your best at the moment and don't want to rock the boat.

Remember when you were first diagnosed, and could hardly walk for three months? I don't think you need me to remind you of those awful times Gina, but the thing is RA can get to grips with you at anytime (I really hope it doesn't) and that's when your feet will continue it's problems and maybe even worse than before!

I've often found that when i flare the really bad joints I had then get even worse by the disease it seems to attack the weak joints more. That's how it feels anyway.

I also kept coming up with excuses/reasons why, but in the end I went for it.

Don't get me wrong the recovery isn't easy, but is worth it in the end.

Only you can decide Gina along with the support of your family, I'm sure you will come to the right decision.

Ask the surgeon all the questions you can think of it will help you decide.

Take care

mand x

[Gina_K in reply to Hidden]

Mand,

Can you walk more or less perfectly now after all? (my hubs question)

Gina.

[Hidden in reply to Gina_K]

I can walk much better than before, and a lot less pain. They still ache at times, but I wouldn't say painful. I can't move the feet from side to side, for example you now when you trying to get on a pair of shoes and you keep moving the foot from side to side to get your foot in, that i can't do any more, and I'm flat footed.

Did the surgeon tell you what range of movement you will be left with?

My first op, the triple atrhrodesis, was twelve years ago now, so things have even moved on since then.

I was like you before the op, couldn't walk at all, had to hang onto things when getting around. I was adamant I wasn't using a wheelchair so I had no option but to go for it.

It is a hard decision Gina and I don't blame you for being cautious, but all I can tell you is how it as helped me and the difference it made to my life.

Keep asking the surgeon questions if you have to until you can get it clear in your head.

Take care

mand xx

[LavendarLady]

Hi Mand, Oh dear, you have been through the mill over the last few years. I have not had any surgery (yet) and although my shoulder is damaged, my consultant doesn't recommend an operation which doesn't always work but has suggested physio instead.

Apparently I am lucky (lol) in that I didn't get diagnosed until much later in life and according to my Rheumy, that means I won't get so much damage to my joints than if I had had it from a young age. I assume that's a good thing but not 100% sure! My daughter in law's mother has had it since she was 30 and is in a bad way but keeps going, I don't know how.

I can't advise either you or Gina re ops - that is a decision you have to make after consulting with your medics. Either way, good luck to both of you. Personally, if I was told I would be much, much better I would go for an operation but it needs a lot of thinking about either way.

Sometimes the pain is so bad, I could cut off my arm or hand or wherever it happens to have flared up!

Hope all goes well for both you and Gina. LavendarLady x

[Hidden]

Great blog mand. you have been through so much and are positive and modest about yourself.. great that you can share this with us..

you make surgery sound like a real benefit which will reassure those about to have some xx

Alison x

[sylvi]

Hi mand,

Good blog, i nearly gave up on this site after last weekend. I keep looking but didn't feel i wanted to comment. I really feel for you over all those ops that you've had. For the first few years after diagnosis i wasn't too bad, but since my 25th anniversary when i fell down the stairs, no it wasn't drink gave up nearly 10yrs ago, sorry people you can't have a laugh at my expense, i know you'll all say pity!!!!! joke for those who don't get my sense of humour. Since then every thing has gone downhill fast. In november i too had a wash out what a waste of time that was. Then 2yrs ago i had to have a knee replacement, now wish i hadn't had it, but as hubby says i couldn't walk before. Then 1yr ago i had to go back into hospital and had my ligaments stitched back,why nobody checked this at the original op i dan't know. Three weeks in plaster and then pyschio, knee still swollen. Had a terrible winter in constant pain. one dept telling the other that it was the ra other dept saying it wasn't. It turns out that its fibromyalgia. I'm still not right but treatment is only in early stages, pills will have to be upped soon. My thinking is i wish i'd never had knee done in first place.

So mand i've some idea the pain and strive you've been through, i hope that you are more mobile now, but i wonder what cost you feel it has come at. I was hoping that as we got near to retirement we would be able to do and go places where we hadn't been before, but now everything has to be planned with access in mind all the time, as now i can't walk very far.

I am feeling brighter in myself nowadays even if i don't sound it.

I will still look on here everyday and i'm glad you haven't gone gone and some of the others as well are still here.

Have a lovely day, Sylvia. xx

[Hidden in reply to sylvi]

Thank you Sylvia, I'm so glad you didn't leave us, i know it was quite an upsetting weekend for lots of us, and I too have given the site a lot of thought.

Anyway, I have spoken to lots of people who have had knee replacements,one person in my family, and lots of them say it didn't go well and they too had further problems. I also know another lady who as had two knee replacements now and getting on with life so much better.

I think we are all different where operations/surgery are concerned, thankfully I have always recovered well and all have been a success.

Maybe I would have thought slightly different if they hadn't have gone so well, it can certainly make you think twice about having anymore.

Life can be so very cruel at times, I can imagine you looking forward to retirement together and then this comes along, like you say you always have to plan everything very carefully.

I'm glad your feeling brighter, sun is shining for us today, so make the most if it! Don't do to much though.

Take care and gentle hugs to you.

mand xx

[sylvi]

Mand, i always manage to overdo it when i feel well. My family always say i'm a pain because i won't rest, but i get fed up sitting down all the time. Done too much of that already.

Have you heard from julie55 since last weekend, if you have would you send her good wishes and i hope that she is well,tell her i miss her blogs. I hope she feels that in time she will come back.

At least there are still one or two still on here who aqre cheerful,yourself included.

I will try and be a good girl!!!!

Take care

Love sylvia. xx

[Hidden in reply to sylvi]

It is very difficult at times Sylvia, you feel well and want to do more it's only natural.

I always want to make up for the times when I'm really poorly and can't do a thing, I am much better though at pacing myself, I too have a husband like you who constantly worries if I do to much. We just want to do our bit.

Try and be careful then toady and have a rest. I've not heard from Julie55 at all.

Take care

mand xx