Capitate fracture

[secretmum41]

I've namechanged for this as it's very outing.

Dd has fractured her wrist. Cutting a long story short we were told her radius was fractured, then at fracture clinic the following day were told there was no fracture, 4 days later we were told her scaphoid was fractured, fracture clinic following day said scaphoid wasn't fractured .... now 3 months down the line an MRI scan has shown her capitate bone is fractured and NOT healed.

We're obviously livid but that's another story.

I'm wondering if anyone had any personal/professional advice on if the bone is now likely to heal and how long it may take? We've seen 2 specialists (1 a hand specialist) and both have never seen this bone fractured in their 10+ years careers so don't know exactly what to do. A ct scan has showed the break is still very much there but shows some small healing. Dd has now been put in a plaster cast for a few weeks, hoping that the bone will heal further.

I'm not keen on the wait and see approach given that we're now over 14 weeks since the injury happened and it's still nowhere near healed.

TIA

@Secretmum41 Sorry to hear that was the outcome. Did the person you've seen already think all of your DD's symptoms are related to the TFCC tear? If so, at least you now have a diagnosis and that can be the basis for a discussion with an appropriate specialist going forwards.

cm ... her elbow hasn’t been Imaged but she doesn’t have any pain there at all, nor in her shoulder. When she first fell her wrist pain was horrendous and VERY swollen. She had slight pain near her elbow but her wrist was so severe that her elbow was never looked at.

john ... the specialist didn’t really say anything, he was very cagey the whole time. He knows they’ve messed up big time and I think he’s adopting the minimalist approach shall we say. He just said he doesn’t deal with ligaments so he’s referred us to the appropriate specialist for that. He didn’t talk at all about the capitate. I asked specifically if the new mri shows the capitate has definitely healed ... he said that in his opinion it is fully healed, ... then showed us the old mri and ct
Also, when we queried last time as to how it can be healed when he has showed us bone still fractured on the screen, he just said in his opinion that’s a normally healed fracture ... but the radiography report said it was still fractured, he said this is because everyone interprets images differently

Tomorrow, I’m going to ask for copies of all ct and mri reports, will find out what is to be done now about the tfcc tear, and I’ll ask about the capitate again, but not sure this specialist will be able to answer.

Well, I had horrific wrist pain, bit of an achy elbow, but could bend and flex my elbow so that never got imaged. Turned out I'd fractured my radial head and torn a membrane in my forearm that stops me turning my forearm. Its a really rare injury though.
My biggest ally in finding out what was going on was my physio as she insisted that things weren't normal when the original consultant said it would be OK, and she helped me shape very direct questions about my various deficits

Oh cm ..... I really hope we’ve not missed anything else :-(

We’ve not been referred to physio yet as dd has been in plaster till now. Is it worth even asking about other injuries at this late stage?

Dd got her cast off on Monday ... by Tuesday night she said her whole arm up to her shoulder was aching ... we assumed it was the way she’s holding herself due to the pain worsening by not having a cast ....

I broke my wrist last year and it was incredibly painful, the consultant I saw originally thought I could have complex regional pain syndrome. It turned out not to be that (my original tiny fracture was complicated by a loose bit of bone that caused a tendonitis and I had various nerve issues). Do you think it could be complex regional pain syndrome?

I don't think its massively well known. My speciality is eyes, I know little about the rest of the body, but maybe have a google and see if the symptoms fit.

Although it may well not be CRPS if she's in a lot of pain being touched it may be worth trying to desenstise the area (as if does turn out to be CRPS the earlier this starts the better). It's really simple and just involves gently touching it with something really soft to get it used to the sensation.

It is worth asking the next specialist whether s/he thinks all of your daughters' symptoms can be explained by the TFCC tear. These injuries are problematic but the way you have described some of your daughters' symptoms (pain in the cast, on minimal movement, and to light touch over the skin) sound excessive, even for a TFCC injury.

I would put CRPS (which is more common in missed/untreated injuries) on the table, even if it is just for the specialist to say they don't think that's a consideration in your DD's case. As other posters have said, CRPS outcomes are better with "early" treatment.

I have no idea if this is CRPS ... my guess is no .... but I’d never even heard of this until this thread.

When I’ve googled ttfc tear, it matches dd’s symptoms exactly. However, her pain is worse over the capitate area than the pinky finger side of her wrist, which makes me think all is still not right with the capitate.

I don’t know how we go about seeing someone who actually knows what they’re talking about and dealing with.

Well we’re pretty deflated now ....

I have no idea what’s going on ... the new specialist says the tfcc tear is tiny and would not cause any problems in the wrist. The mri showed swelling in the capitate but he says this also wouldn’t cause any problems. He mentioned CRPS, but said dd symptoms didn’t fit this.

His view is the pain is because she’s been immobilised in a cast and splint and she’s just developed hypersensitivity to pain.

He also delved into the fact that could she be doing this to get away from school, or because she’s a teenager ....

We’re pretty livid and just so deflated at the lack of progress.

He’s referring her to physio and a pain management clinic. I know something is wrong here but they’re just not seeing it.

I know this is tricky but we do see a lot of people who have prolonged and atypical pain reactions to injury. One day we'll understand this properly but - for the time being - we are limited to understanding things that can be seen on CT/MRI.

It makes sense that the capitate fracture has healed and that the TFCC tear is small and was only really found because they looked so hard for something else. Personally I've always assumed that these cases are some variation on CRPS and suspect that's the direction that the pain clinic will take her in.

I would try to take this latest outcome as "good" news that there isn't something majorly wrong that needs to be corrected with an operation. Her recovery will probably be quicker if she can internalise this positive message, stop wearing the splint as often, and start (as far as possible) resuming her normal activities.

I hope you don't have too long to wait before you can talk this through with one of the pain clinicians.

john .... is it usual for the capitate to only be partially healed and still have swelling 26 weeks down the line?

Also, how do we actually go about dd not wearing the splint? She can’t do anything at all .... no grip, can’t tie shoelaces, can’t open a packet of crisps or breakfast cereal, can’t hold a pen to write at school ... so with no splint she just sits with her arm on her knee or walks with it Just trailing down her side.

I just really strongly feel there’s more to this than random pain and stiffness.

Hi john ... Just wondered if you’re still here?

Sorry for radio silence! It's not normal for any bone to only be partially healed at 26 weeks but it does depend a little on what's meant by "partially healed". You can still sometimes see a healed fracture on imaging, and particularly on the fine slices provided by a CT scan. As long as most of the bone is there, it should be solid and so shouldn't cause pain or swelling. If the original surgeon said the bone is healed then he is probably right.

In terms of weaning off the splint, she could perhaps have it off while sat reading or watching television in the evening? Then maybe at night? Then while at home at the weekends when there's someone else to help her do things that she finds difficult? Etc.

Has there been any improvement and when is the pain clinic appointment?

Hi john ... latest ct report says “there is interval sclerosis at the capitate. Previously seen fracture line through the mid part of the capitate is less obvious, appearances are suggestive of a healing fracture. Rest of the visualised bone can still be recognised on saggital reconstructions.”

Latest mri says “there is oedema seen within the capitate. The fracture line is still identified however appearances are in keeping with a healing fracture. Minimal oedema is seen within the distal scaphoid, I’m not able to identify a fracture. I cannot see any other definite carpal abnormality.”

These scans were taken 25 weeks after the injury.

Specialist describes the fracture as the middle part of the bone is knitted together, there is still fracture either side of the bone, of the knitted together part (hope that makes sense). All reports from dd being examined say she is most tender and painful around the capitate area. Yet they say the capitate should now not be causing any pain. I’m confused.

We’ve been to physio today, physio has said no need for pain management clinic yet ... she’ll wait and see how physio goes!

Not sure if anyone is still watching .... update ...

Dd has been to physio (still going) we’re not much further forward. She still can’t grip, has little strength. She still has pain around the capitate area.

We’re now 10 months since the injury and no one is concerned about the capitate pain or lack of strength etc. Their opinion is it will just take more time. I’ve asked for second opinion/referral elsewhere but just get told no, no point as all tests have been done, nothing further can be done, it’s just a matter of time.

This to me is not normal. Any more thoughts anyone?

Just read this thread. Sorry your DD is going through this. Did the elbow get imaged? It does sound to me like something further up the arm might also be damaged.

Here’s another idea to consider... Is there anything in your family history (or DD medical history) that might suggest some sort of genetic reason for both the injury and the healing issues?
I’m specifically thinking of Osteogenesis Imperfecta (type 1 or 4) a rare condition that runs in my family (some affected members only recently diagnosed in late adulthood as a genetic test wasn’t previously available). Most people with OI have the milder subtypes which can be difficult to spot even when there are significant medical issues (it’s rare enough to not even be on the radar of most medical staff you would come into contact with).

I’ve certainly had the experience more than once in A&E with a consultant “correcting” me when I’ve said my injured DC has OI, with the consultant looking at my apparently normal dc and saying “do you mean he’s a carrier?” - there is a perception that OI means wheelchairs and very obvious deformity of the limbs, and nobody is looking for the signs in “normal” people (even signs on X-ray can be easily missed, or dismissed, unless people are actually looking for them).

OI can mean VERY ODD, unexpected fractures - spiral fractures, and other unexpected fractures that don’t match the injury history very well, so medical staff would say they were very unusual, or unheard of or freak accidents etc... healing can be slow (not an issue in my family), or unusual with odd patterns of healing and overgrowth of bone that can cause nerve damage. OI isn’t just about bone, all body tissues are affected, so dislocations and soft tissue injuries are a problem (again, “odd, unusual” injuries). Grey or blue tinge to the whites of the eyes (only present in about 1/2 of people with OI, but can be more obvious in young children and disappear in adulthood.

Does your DD/your family have any history of- hypermobile joints, dental problems (especially in the baby teeth), hearing issues. Fractures (lots of people with io only have a few fractures, some will have none!), joint and muscle injuries and generally a lot of pain (“fibromyalgia” type symptoms)... if yes, you may want to explore the possibility of OI with your dr.

lettuce ... dd was born with dislocateable hips, treated with a pavlik harness, taken off at 12 weeks old. She is now VERY hyper mobile, joints pop out easily but also pop back in easily. No teeth problems, eyes are normal, she’s thin and tall. She’s fractured one wrist twice after falling, and the other wrist this time after falling. She is constantly exhausted but GP feels this is due to sleep problems caused by her autism/stress/anxiety.

I’ve asked GP for a referral due to hyper mobility as it’s getting worse but she says there’s nowhere she can refer to. She can’t be referred to investigate exhaustion until her sleep is sorted, but we’re having no luck with that.

I honestly don’t know what to do or where to turn.

Well that’s an interesting update. I think you might want to look at this link.

hypermobility.org

This collection of genetic conditions and (mostly) related to col1 and col2 collagen mutations (OI is a collagen disorder).

In my opinion, there’s a massive overlap between all of the col1/2 conditions and I wonder if they are essentially the same condition (with other protective or “bad” genes affecting exactly what symptoms a person get).
There is also some kind of link between collagen defects and Autism, and autoimmune problems (both in my family) ie coeliac, thyroid etc. Not surprising, as the collagen lining the gut has the same defect and some studies show increased gut permeability. The link is poorly understood and at this point, a bit speculative (new/emerging science I guess).

As you mention Dd is tall and thin, the info about Marfan syndrome in particular.

Hope that info will help a little- sounds like her Drs are seeing a bunch of separate conditions in your DD and not thinking in terms of one single genetic cause that might be behind them all...

Btw, I still think OI type 1 (or maybe 4) is a possibility given that she has had a number of fractures - the teeth, eye and hearing issues are quite common but only present in some people with the condition.
Multiple members of my family have been in the hip harness for months as babies too.

The problem lettuce is getting someone to look at dd as a ‘whole’ ...
Who would I get referred to? She literally has a list of difficulties and could need 3 or 4 different specialists .... I think I’ll have to just list everything to GP and tell them we need her looking at and see what happens.

Well yes, that is exactly the problem. We were pretty sure we had OI in the family and that was dismissed by various Dr over the course of about 25 years. Eventually a particular incident led to us demanding genetic tests (because we knew a genetic test was now available).

In our case we went to GP and asked for a referral to a genetics consultant, outlining the affected family members and their issues and stating that we believed we may have OI type one or 4.
We were seen a couple of months later and family histories taken, then genetic tests done.

The genetics consultant was actually great and clearly knew a lot about collagen disorders- right from the start he was nodding at everything I was saying, said at the end of the meeting that even clinically (ie going by our histories, and appearance - heart/triangle shape faces, and other physical clues), he would happily diagnose some family members with OI on the spot without genetic tests... tests confirmed it tho, and in one sibling, showed he didn’t have it (he only mild hyper mobility, and none of the other issues).

I wish I could say diagnosis instantly meant Drs, physiotherapists etc knew how to treat, or more importantly how NOT to treat but sadly it doesn’t always, but at least if your DD is diagnosed with something rare you (and she) can read up on it and discuss it knowledgeably with medical staff if they suggest something that’s probably not going to work (or even cause harm), due to the condition.

If I were you I’d probably ask for a referral to a specialist genetic consultant. I’d read up about all of the hyper-mobility syndromes (the link I posted is a good starting place), and I’d write down all DD medical history that fits those conditions.

Also (because I’m a crazy anti gluten person 🤔) I’d suggest a Coeliac test, and then have a trial of a gluten free diet for a few months even if the test is negative. There are sensible reasons to suggest doing that due to the way the gut may be affected if DD does have a collagen/hyper mobility syndrome (it might improve a range of her symptoms, or it might not- worth a try tho, as it won’t cause any harm). I know it has made a massive difference to me and several other people I know with OI or EDS.

Just wondered if john was still here, for opinion ....

So, we’re not much further forward. Dd still has ongoing pain around the capitate area, movement has improved but has a long way to go. She still can’t use hand properly, still can’t write.

She’s still going to physio and doing the exercises given. Physio is now going to refer to OT, and pain management clinic. Fracture clinic have done another mri and I got a letter to say all is healed.

Asked for the mri report and it says “there’s remarkable healing of the previously seen capitate fracture with near total resolution of the marrow oedema.” so does this mean there’s still some swelling in the capitate?
And
“Fracture line is completely obliterated with good bony Union.” does this mean fracture is completely united?

TIA

@Secretmum41 how is your DD getting on now? I just wanted to give you an anecdote that might be of some use. DD1 slipped on a bouncy castle and fractured her ankle at the growth plate. She had 3 weeks in plaster, then had it removed. Once removed, she was returned to her Special School in her McLaren Major buggy, which was being used as a wheelchair, and within an hour, they telephoned me and asked me to take her back to hospital because she couldn't weight bear.

I took her back and the doctor agreed that she really couldn't weight bear. So he put her back in plaster for a further week. The next week, it was removed again, and the same thing happened, she couldn't weight bear, she was in agony. This time, her Consultant was there. He said that she was healed, but the prolonged casting had caused muscle wastage, which was why her leg was turned out to the side and she couldn't weight bear. However, the only way that it would improve was to use it. So he gave her a splint and said that she had to walk on it, and that it wouldn't do her any harm to walk "funny", limp, "wobble", etc., but gradually her leg would straighten and become hers again.

I should think that many, many weeks in a cast has caused severe muscle wastage in your DD's hand and wrist, which will need to build up again before she can write and control her hand.

Hi lougle ... many thanks for your post.

We’re now 14.5 months post injury and dd still can’t use her hand fully. There was muscle wastage but this has improved (not sure if fully). Dd uses her hand as much as possible ie she holds her phone, carries paper, gets dressed etc. She goes to physio, does her exercises but she’s still not where she should be after this length of time. She’s now being referred to a pain management clinic and OT.

She can’t grip enough to clean her teeth, write, hold bags with things in, cut up food etc. All I get told is it’s just going to take time and we can’t put a time on it.

I think after 14 months the wrist should be fully back to normal. She sits her GCSE’s this year yet can’t even write with her correct hand!

When I ask for a second opinion/referral to a hand specialist I just get told there’s nothing they can do or tell me different.

Has she got things like Theraputty/playdough to work her small muscles? Stupid little exercises like picking up peas and putting them into a pot work wonders for fine motor muscle exercise. I'm probably just saying everything you've already tried 100 times! I'm just thinking of stuff that DD1 has done to strengthen her hands (SN).