Bone cysts

[GetTheStartyParted]

Does anyone have any knowledge of bone cysts?

DS, age 11, has a fractured arm and they have said it was a result of bone cysts. He has been referred to a paediatric team so I am waiting to hear from them.

The nurse was reluctant to say too much as they didn't know what type of cyst they were. His blood results were fine. NHS info page is reassuring me a little but as I hadn't heard of this before, my mind is working overtime!

Any stories from people that have been through similar and the treatment would be great - thanks.

We're just bumping this for OP.

Thank you

Daughter - had MRI’s cat scan set al. Original treating hospital were not willing to commit to what they were and ref’d her to the Royal Orthopeadic Hospital’s specialist paediatric team. Initially it was thought to be osteosarcoma which was very scary but cancer team found The lesions to be benign bone tumours [fiberous dysplasia] in her legs and jaw.

Mostly it was lots of check ups, x-rays and scans as needed to check on how the fiberous lesions were behaving as she grew. This was to check that her bone strength did not become compromised and increase her risk of nasty fracture from a simple fall. Based on her friend who was in at the same time with a fracture due to a large bone cyst in his femur the check ups were pretty much the same. Her friend had to have his cyst surgical cleaned and a bone graft [his own] with internal fixations to reduce his risk of another fracture. In his case the cyst was very large and this was done when he had surgery to bolt his femur together again. If the cyst is large or on the edge of a rapidly growing bone you can expect a LOT of check ups during your sons teenage growth stages [think till he is at least 18] Planned surgery to protect from a fracture is easier to manage from post op pain than pain management in an emergency due to a nasty fracture. Daughter prefers to have protective surgery over emergency due to fractures for this reason

Surgery to treat cysts can be a little different to FD but the aim is to protect a child from further bone fractures around a known weak point as much as is possible. Daughter has had surgery in her mouth and her one leg where the bone strength is 20% less due to the size and location of the largest lesion. She will need a hip replacement in her 20’s due to FD and related complex fractures killing off her hip growth plates when she was 11.

Staff at ROH were very supportive, involved daughter in discussions about her bones and listened to her choices around management esp surgical management. She was a lot less keen on physio’ to improve mobility and muscle strength though.

The down side is your son MAY be advised to avoid contact and high impact sports /activities if the cyst is very large or compromises bone strength otherwise most kids lead normal lives around routine hospital check ups.

Thank you so much. The fracture clinic have called twice today to keep me in the loop with DS's referral and to check he is ok, but couldn't give much information. They did say he will probably have an MRI and further xrays.

It sounds like your daughter has been through a lot. I'm glad to hear they have been good with involving her. DS is a strong person and would want to be involved.

He does love sport and will be so upset if he can't play but if that's what is necessary then we will channel his energy and enthusiasm elsewhere.

His appointment is in 3 weeks and it feels like such a long wait for more information. I really appreciate hearing your experience, thank you.

It is good they are keeping you upto date with the progress of your son’s referral. I would take it as a good sign that the fracture clinic is talking about three weeks rather than telling you to go straight to another hospital.

From experience the referring hospital may not be able to tell you much more about the cyst they have found. Further information about that will often need input from a peadiatric Orthopeadic surgeon with far greater experience in managing these types of bone lesions. Do note down any questions you or son have in the meantime to take with you when the appointment comes through.

Might be worth having a gentle chat with your sport loving son about protecting his fractured arm to give it the best chance of healing and waiting till the specialists have had a good look to check IF his bone needs a bit more help to be as strong as it can be for him.

Hope all goes well for him and the cyst does not hamper his bones ability to heal.

I agree, the lack of urgency is a good sign.

They were honest and said it wasn't something they often see so didn't want to tell us it was one thing when it could possibly be something else.

I do worry that when the pain reduces DS will want to do more and be more active so I will definitely follow your advice, and also for making a list of questions. I have so many at the moment and I'm sure my husnand and son will too.

Thank you - i really want to know more about what lies ahead for him but I'm feeling calmer this evening than I was.

Hi, me again @triballeader

It's DS's appointment tomorrow so I am writing down questions, as you suggested. Is there anything that springs to mind for you, that I should ask? My mind is still spinning to be honest, I will be so glad when we have some answers.

I think asking what the implications are for the kind of sports your son can take part with would be wise.

You might need to have some additional x-rays done BEFORE seeing the consultant so they have the most up to date information in front of them.
. If surgery is advised ask about what type, where and possible when’s. If they advise a watch and see ask them to explain to your son what he needs to do to try and protect his arm and when he should let you know about say pain and so on. Ask what kind of pain you need to be aware of that could indicate your son needs an ortho checkup for.

It is okay to tell them you feel out of your depth and could they explain things for you in a way you can begin to understand. Some hospitals can signpost you to online leaflets about certain conditions in place of the old paper printouts they cannot give you at present.

Hope all goes well for your son tomorrow. If after you have seen the consultant you would find it helpful to ask anything else of a mum who has the ripped orthopeadic bone lessions t-shirt do feel able to post here again.

Thank you so much your advice and calm words have meant a lot and really helped!

It is 100% a bone cyst. Follow up xrays and physio for the next 6 months to give it a chance to heal itself. If not, then we will discuss surgery.

The consultant was great, telling DS what he can and can't do, especially sports. DS cried when he came out, he is so sad that he can't play sports for at least 6 months. I'm sad for him but so relieved too.

Thank you

My daughter had to give up Sea Rangers [sailing] and long distance running for the school. She missed sailing the most.

It might be worth considering what the consultant suggested as still possible to do and encourage your son towards what he can still do ‘whilst his bones have the time they need to heal’. My daughter took to rambling in place of running - the trick is to avoid the high impact kind of sporting activities and offer low impact alternatives. Once your son starts physio the physio may well be able to suggest alternatives. I think the hardest thing for a kid to learn is managing the risk of an activity against the understandable fear a bone could break if they get it wrong.

Keeping up with fitness and muscle strength can help IF your son goes on to need ortho-surgery to repair the bone cyst.

The good news is the consultant feels the bone has a chance to sort itself out with some time and careful choice of activities by your son. If he really had not liked the look of it your son would have been scheduled for surgery pretty fast.

He's had to cancel karate and his football team are saving him a space for now, fingers crossed he can get back to it.

The problem is that the consultant said to avoid anything with the same movement that originally broke his arm, which was very minimal. I think we will wait for physio to advise us further.

He said that the cyst is large but he doesn't want to operate unless he has to.

Now we know the fracture has healed, we can start doing a little more and hope to find alternatives.

The main thing that the consultant told DS he can do was the washing up and chores around the house he seems reluctant though! Haha.

Thank you once again, I hope your daughter continues to do well. I really appreciate you taking the time to respond.