More trouble with hands so another operation

[lyndia]

Hi all About 4yrs ago, I had an Ulna replacement head [ knuckle on the right hand taken out and stainless steel one put in]done on my right hand, I have a very rare form of osteoarthritis apparently, and the surgeon said he was amazed because he only saw about 1/2 patients a year with this form of arthritis, however, all went well, [ I was in plaster for months ] and I have been able to play piano/keyboad etc., until 2yrs ago, when I had the scafoid done on my left hand, there was talk at the time to do the knuckle on my left hand at the same time, however, I decided not to do that just then as It takes so long in plaster well, unfortunealy the time has come to have the knuckle done on my left hand,[ it is very painful right now,, I was hoping I would get away with it not having to be done ] so once more I am going to have to have another op., I hate it, because I always suffer badly from the anaesthetic, however, I don`t have much choice, because not having it done would mean I would lose the use of my hand. I just wondered, does anyone else have this same problem, [ it isn`t carpal tunnel or arthritis as we know it normally my surgeon said I would probably never meet anyone else who had had this done, because there will be people out there who has, but it is so rare ] and had a knuckle out etc., I would be very interested to hear from you. Oh well,once more into the fray I suppose, and thank God I have a wonderful surgeon.

Lyndia x

[mistymeana]

Hi Lyndia, don't know if I have the same as you but I have trouble with my hands. Until last year I thought it was RA with a touch of OA thrown in but they're now saying it's an aggressive form of genetic OA. The joints nearest my fingertips get very sore and the index and middle finger joints are very knobbly and misshapen and I can see signs of the other fingers going the same way. Possibly the worse thing though is that my thumbs are permanently folded in towards the palms and I can no longer make a flat palm print. Can make holding things very painful and fine skills can often be a problem. Hope I've described it well enough as quite hard to put into words. Have thought of seeing if there's anything can be done about it sometime down the line but not sure about trying to cope on my own with my hand out of action. Good luck with your op. Hope it's as successful as the right hand x

[lyndia in reply to mistymeana]

Hi. I`m so sorry I haven`t responded before, but my computer is playing up no end, and half the time I can`t even get into it, it is SO frustrating. Anyway to answer your comment as best I can, firstly,if you haven`t seen anyone about this, GO NOW, there are things that can be done, and you must`nt put up with this pain any longer. I understand completely about being on your own, and not beng able to cope, trust me, you will find a way, I am 76 and on my own, and when I had the knuckle taken out of my right wrist 5 yrs ago, [ it is called a distal ulna head replacement ]it was hard going, and really diffcult, but God knows how, I managed, because the alternative, was probable to lose the use of my hand completely. Mine is also a rare form of OA [ as you say aggressive genetic OA] and since the last op, I have had another on my left hand, and having gone to the specialist yesterday, within the next month, he will do an op on the index finger knuckle [ much the same as the wrist op I had only in a different place ]and put an implant in, these ops are very rare and difficult, but you have to trust your specialist completely. When you say ` they`re now saying it`s an agressice form of OA ` who are you referring to,friends or doctors/specialists,etc, because if it is the specialists, I can`t understand why they are not doing something about this for you, you must be in agony bless your heart, I know only too well what the pain is like, I`m in the same state at the moment,so please love, get down that docs, and see a specialist, you need help, and try not to worry about being on your own [ I know that`s easier said than done ] because help will come from somewhere, trust me, you`ll find all sorts of professional people will come to your aid and also friends, so go on, get yourself seen to, and don`t go on with the pain, this condition will only get worse, not better. Please let me know how you get on, and I wish you all the best, and send you lots of hugs and good thoughts

By the way, which part of the country do you live in?

Lyndia x.

[mistymeana in reply to lyndia]

Thanks Lyndia, I live in Norwich and it was a rheumatologist at the hospital here that re-diagnosed me. They sent me to the occupational hand-therapy team for help with coping with my witch hands. I'm coming round to the idea of talking to someone about seeing if something can be done about them but can manage most days so putting it off for a while as I know replacement joints don't last forever (I'm 58). To be honest, it felt like the rheumy team couldn't shunt me out the door quick enough once they decided they didn't think I have sero neg RA and refused to consider I might have another inflammatory disease. x

[lyndia in reply to mistymeana]

Hi Mistymeana. Just about made it back again, so will try and get this message to you erfore it decides to go AWOL again. I f your hands are in such a state, I cannot imagine what the rheumatologist is thinking about, surely they should have done something for you before now. As for replacement joints not lasting, don`t believe it, I have so many , 2 in my hands at the moment and another one being done on the 30th July, a shunt in my neck, implants in my toes on both feet etc.,and I have never had to have any of them replaced, and I am talking 25 yrs here for some of these ops, so, please don`t let what you have heard put you off, I cannot thank the surgeons enough for what they have done for me,, I would have been in a real old state by now. I must admit I go privately usually, but I also must admit, when I went NHS 20 yrs ago for my feet, the rheumatoligist did say he could make my toes floppy of stiff, and I know that, even today they tell people the same thing, so I think this is possibly some of the problem for you. I also made my surgeon aware that I am very active [ playing piano etc.,] because I had a friend who was a consultant orthopaedic surgeon, and when I told him I was going to see about my toes and hands etc., he said I MUST let the surgeon know I was very active, because a different op is required, and it was very important to give him this information, so I did, and it made a great difference . Please try again to get some help I don`t know if you are able to pay for a consultation privately, and then go NHS for any op you might have to have, because, a lot of the consultants do NHS and private, it`s worth a try. Thinking about you, and sending good thoughts, and lots of hugs, hope I have been some help [ probably not ] and pleaselet me know how you get on.

Lyndia x

[Hidden]

hi, not been on here for ages so was just browsing when I saw your message, I had a distal ulna head replacement on my left wrist which am presuming is the same as yours, mine was due to a unidentified fracture from a fall many years ago, this then caused OA in the knuckle of the head and it kept locking if I rotated my wrist.

I sufferd for years with what I always called my weak wrist, I could not lift a pan and turn my wrist, even a book it would be so painfull then lock so eventualy went to have it checked and the surgeon was quite surprised I had managed for years not rotating the wrist instead i used my elbow the knuckle was crumbling so he booked me for a replacement, I had the surgery and when I woke up boy did I feel it ouch! so it was in the plaster for several weeks and when I was finding the pain more than before I was quite upset, but was told it takes a while to settle.

I was looking forward to having the use of my wrist again but was then diagnosed with breast cancer so this took over my life( but am clear now) and what with having a mastectomy left side was rather sore so recovering with both surgerys on that side was hard but the wrist became a real problem but they were reluctant to do any more surgery as it may cause lympodema, grrrr but they did an x-ray and found it had come loose so had no choice but to have it done again, and the moment i woke up i knwe it was a success as apart from normal surgery pain it felt good, so now 4 years on i no longer have pain but the wrist has not got the stability to rotate or lift pans it does not cause any pain so hope your surgery is good and hope you get better soon, it is a very rare op and when you go to hosp and they ask about ops you had done most say ohhhhhhhhhhh never heard of that being done so we are the elete few lol.

take care

[Hidden in reply to Hidden]

well am glad I read it

[lyndia in reply to Hidden]

Hi. Sorry I haven`t replied before, but this computer of mine is driving me mad, I write something, and it deletes it, or, I can`t get into the thing anyway, however, here I am at this moment in time [ how long for I don`t know ] so I will answer whilst I can. Thanks for your comment, and as you say, this is a very rare op, and like you, I had my right wrist done 5yrs ago, and it has been amazing I haven` got complete turning of the wrist [ it goes half way round ] but, I am delighted with what I have. Unfortuneatly, my left hand index finger knuckle has gone [ I went to see the specialist yesterday ] and so, within the next month I will be having much the same op on that. I don`t look forward to i as such, because as you know, it takes forever in plaster, which isn`t fun, and 9 months to be able to work your hand properly, altogether, it takes about 18 months to be as normal as it is going to be. When I spoke to my specialist yesterday [ God he`s yummy ] I told him I had been in touch with you, and he said, we are certainly the ELITE few. Of course he went into the ins and outs of the op, and said I won`t get the full use of my finger, but I won`t be in pain, and I will still have enough use to enable me to still play piano/keyboard I trust him implicitly, which,as you will agree, is absolutely essentials with something like this, it could go wrong, but that`s also something you have to be very aware of. Anyway, how are your joints holding out at the moment? are you getting any other joints going?. hopefully not, this will be the 3rd op like this for me, ah well, that`s old age for you, and the curse of having a rare ailment. I will keep in touch, and let you know how it goes, wishing you all the best, lots of hugs

Lyndia x.