Kienbocks disease and carpul tunnel

[bunker1]

Has anyone been diagnosed with kienbocks disease ive recently been told ive got it in left hand the consultant said you had it a a while and its very rare apparantly its when bloody supply from forearm goes into lunate bone in hand the supply stops an eventually the lunate bone can die off and break up Im worried as he says he thinks mine is stage 3 and there are only 4 stages and he thinks carpul tunnel so suppossed to be reffering me hand clinic to see if can do injections or operation

If anyone knows anything about kienbocks would appreciate any infirmation or help

Thanks jackie

[janeywaney63]

Hi Jackie. Welcome to a rare club.

I ended up having a wrist fusion on my left wrist. Almost 5 years ago now. They did carpal tunnel at same time. It was through an mri for the kienbocks that it was discovered it was also RA. I’d had X-rays on the wrist previously but no one picked up a break in the bone. Hand consultant re examined the old X-rays and saw it. I couldn’t even turn a piece of paper over without loads of pain. It was worth having the fusion done. I’m pain free in the wrist now. It can’t bend at all. Happy to answer any questions you might have. Jane

[bunker1 in reply to janeywaney63]

Thanks so much for your reply I fell an broke wrist 7 wks ago but wrist was doing fine but i told them having pain n numbness in middle finger an thumb but not lots but he said he thought cast was a bit tight an going put a lighter cast on he was worried about carpul tunnel

As soon as i got home knew something not right was in agony all my fingers apart from little finger were swelling going blue an the thumb looked disjointed espechially at base couldnt move them

Went back to fracture clinic begged them to take cast off an do xrays but wouldnt said if got worse to go a n e on the saturday didnt want to but was sat downstairs all night luckily the nurse at a n e was the 1who did my original cast she said they had trapped my nerves and i was the 4 th 1 that wk she split cast an said need xrays on thumb espechially was worried some damage with scaphoid bone

I ended up back in fracture clinic they said my thumb was dislocated and needed manipulation if that didnt work wud be an op

Then another doc came n apologised he said the doc was a junior an he wasnt convinced but had thumb xrays an came out to see doc but they had all gone on home

Finally went frac clinic again an a consultant apologised for them messing me around he said he defo thinks carpul tunnel didnt want put me for injection as wridt doing well but not fully healed but said wud refer me to hand spesialist at another hospital cos thinks need carpul tunnel op but then said with your kienbocks and of course i was shocked never heard of it or been told

He said looking at my xray my lunate bone is alot whiter an someting think he said out of place but he said its old you had it a long time an nothing can be done but he cant do anything as retired but would see me in 2 wks saw him last wk an he said how do i feel about injection i said i would have it but dont want to risk infection if wrist not healed an id been see my gp an they like me cant understand ive had no pain or problems with wrist since i first had ny stills disease an i had injextions an worse wrist splints never had any numbness an pain in hands like this all only came when i had the cast to tight an it was stopping bloody supply to hand

I aaked why cant anything be done for my kienbocks an what stage is it he said he thought 3 but he saud 76 operations but none really succesful i said well im so worried im losing the use of my hand he did mention wrist fusion but he said if you want to do your hair an personal things you wont be able to because wouldnt be able to move wrist

I said well do i need mri or more tests not just for kienbock but carpul tunnel or are the docs at hand clinic just going to go on his diagnosis because in the meantime like you know im in agony jus getting dressed or trying to do simple tasks

I have movement in fingers but so numb an the pain espech middle finger an thumb still he said he really doesnt think thumb dislocated but subluxed asked him whst that meant as in fracture clinic said it wasnt subluxed he didnt answer and jus said with him being retired he will do referral but hes now gone on holiday left me with no referral nothing

Been see my rheumy she said its just not adding up you had no problems with hands or wrists in over 8 yrs until i fell

Can i ask were your fingers so numb an thumb an were your your pads behind fingers swollen an almist feel burnt an if i try do bra or jus cant grab anything little an so weak an the pain in fingers espech middke n thumb an thumb esoech at base looks wierd an bone out of place

My rhuemy referred me for mri but checked an not on urgent so at least 8 wks im used to pain with my stills but this is really getting to me an course cant drive

Can i ask you did it take ages to diagnose you and what stage is your kienbocks cos looked an only 4 an he thinks mines at 3 he said your lunate bone not crumbled

Did they think your kienbocks an carpul tunnel connected if you know what i mean

Im wearing a splint all the time but moving fingers an using ice

Ive jus had a phone call got appt tues but dont think with a consultant jus in hand clinic says should have assessment said might want xrays i said did have some on monday

Did they have any idea what caused your kienbocks can you do much with wrist being fused hope you can an hope you ok

So sorry for long post just nobody to really ask similar to when i got my stills disease none of the docs ive seen ever seen anyone with it

Any tips or anything you can think of i can ask about carpul tunnel an kienbocks would help

Thanks again i prefer being well done thsn rare dont about you lol

Jackie xx

[janeywaney63 in reply to bunker1]

I'm just on my way out as visiting my in-laws for a few days, will try and reply while I'm away but might not be able to. I'm not sure I was told a stage for my kienbocks - will have to look at a letter consultant sent me with the diagnosis. I didn't have any trouble with carpal tunnel at all, it was just done at the same time as the fusion to prevent it being a problem afterwards. I know after the op I had to keep my arm upright and keep wiggling my fingers. I'll come back to you again soon xx

[bunker1 in reply to janeywaney63]

Thanks so much and jus enjoy your break hope you get some nice weatherJackie xx