Anyone had a cyst in a bone?

[Witness2]

Heard last Thursday that my swollen ankle (for the past 12 months) has been caused by a large cyst at the base of my tibia (where the shin bone meets the ankle). It has to be drilled out, filled with a calcium paste and screwed. A triple fusion is likely down the line due to obvious damage showing on MRI but I'm not in pain there - yet!

This is so disappointing. I'm in remission for heavens sake...

Anyway, just wondering if anyone else has experienced this - the surgeon said they're unusual but not unheard of in RA. Thanks

[Hidden]

I actually have a series of benign tumors all along my shin bones, called chondroblastomas. So, not exactly a cyst, but yes, possible

[Witness2 in reply to Hidden]

Thanks Caeryl. Are you being treated for them? Mine threatens to cause a fracture if left too much longer due to its position. Hmmm, I wonder why the surgeon called it a cyst...I can cope with something ending in ‘oma’ as long as it has the word benign in front of it!

My research suggested a Geode.

[Hidden in reply to Witness2]

No - no treatment - He told me that if they started growing they would split my shins lengthwise, but as long as they don't - it's all good... (or sort of - ha ha).. Wait - a geode???

[Barrister]

I’ve not had one in my ankle but had one in my upper jaw which apparently is rare and usually not found until so much bone has been displaced that the jaw breaks. Luckily, I noticed that my front teeth had moved and that there was a gap where there hadn’t been a gap before. The cyst was removed and X-rays since have shown that bone is filling the space nicely. I’m just left with a large scar on my top gum. Clemmie

[Witness2 in reply to Barrister]

Thanks Clemmie, that sounds really nasty. Poor you. Neither you nor Caeryl mention any pain? Mine only starts when I take the weight off it and try to sleep. The swelling is the main cause or so I thought. Tonight I am in agony (childbirth scale if that’s relevant to either of you) ghastly cramping and deep bone pain.

The surgeon I saw said there’s no oedema showing on the MRI so no immediate risk of fracture. Will probably need surgery soon. And just to really cheer me up, indicated that he’d perform a triple fusion except that I don’t appear to have pain there. So much to look forward to with this condition huh?!

Thank you

Sarah

[Barrister in reply to Witness2]

Yes there was a lot of pain, which is what made me go to the dentist but I also developed “burning mouth syndrome” which was awful too. The tooth pain obviously disappeared (that was more like a pressure type pain, difficult to describe) once the cyst was removed. Hope you get yours sorted out soon and the pain disappears.

Clemmie

[Hidden in reply to Witness2]

Yeah - I get pain as well - feels logically like shin splints. Usually it is after I walk a great deal, or if I am flaring. Yeah - AI diseases are fun, huh?

[Hidden]

I get a lot of pain in my left shin with a lot of swelling just under the knee on the inner side of knee, it’s awful and same feel it bad after a walk or having a flare up of the disease, I’m glad it’s not only me, I wish there was something I could take to make the pain go away, it’s so painful, and for me have it most days 😌

Lady B

[Witness2]

I’m sorry to hear that you suffer most days LadyBrunette. Mine comes and goes in intensity , as others have also explained, as a result of exercise. I haven’t had a flare for so long I’d forgotten how savage RA pain can be.

I’m grateful to everyone for these insights, always nicer not to be going through it alone.

[Hidden in reply to Witness2]

Hi witness2

Thankyou for your reply I’m glad your does come and go. It’s such an awful nagging pain it’s not good at all, it’s like I’m almost in a constant flare.😌and I know it’s is good to know we are not alone on all of this. Hugs to us all.

Lady B 😊

[Witness2]

An update: I’m having surgery on 15.11 to debride (clean out) a large cyst in the base of my tibia. They’re filling it with calcium phosphate and taking bone marrow from my pelvis (oh joy) to help the calcium phosphate ‘set’ into my bone then fixing it with a screw(s).

It’s a few years since I had surgery which unfortunately left my left hand worse off so I’m understandably a bit nervous but the surgeon has an impressive track record and reputation so I’m trusting that the outcome will be OK this time.

What troubles me is coping on crutches - I’ve never been 100%non weight bearing even after bi lateral hip resurfacing. I’ve hired a wheelchair and am thinking through my daily routine and planning how to cope. I’m especially concerned about getting to the loo at night (being a woman of a certain age!) so have ordered a portable urinal as well as a raised loo seat. I hope I’m not over thinking all this and being negative but I prefer to be prepared for any eventuality!

Any tips gratefully received please. I am officially hacked off with my RA now...😡