Large jaw cyst

[Moveonward]

Has anyone had experience of Jaw cysts? I have recently had a CT and discovered I have a very large cystic mass in my jaw which is extending up into my sinus! I have bone loss in my jaw and my jaw has a fracture in it, presumably from a slowly growing cyst pulling my jaw apart.

i have a biopsy next week but really really worried about the possible diagnosis and subsequent surgery.

Yes, many years ago, in the same place. Day surgery under GA removed it, a bit of bone removed and a couple of stitches in the gum. No pain or swelling.

Some problems with teeth down the line though.

Was the cyst very large? I’m concerned how much bone they will need to remove?

Golf ball sized!

My mum had one, which also broke her jaw! Hers was due to an infected wisdom tooth deep in the jaw that never erupted.

Yea I think that’s what’s happened to me! I’m going in for a biopsy today and then I hope to get this removed ASAP as it’s causing a lot of problems now

My husband did about 15 years ago. It was extremely invasive and he had to have bone and the cyst removed over several operations. He’s been fine since though and no problems. Had to have regular checkups for a while. And his jaw bone was weak for a few years so he had to be aware if that but it grew back fine. They did have to remove teeth too

That’s good to know- mine seems quite invasive too and likely to need significant surgery. Glad he is well now though and I hope I have the same outcome!

Hi, how did your surgery go? My 16yo son has a jaw cyst. Has a CT scan next week. Consultant at maxillo facial says either cyst or benign tumour. Dentist has me worried about bone loss. Would love to hear back from you. Hope all is ok

I had quite a large cyst and had to undergo several minor surgeries a biopsy, fitting of a drainage tube for 7 weeks and then finally removal of the tube and cyst. Last surgery was about 6 weeks ago and I’m pretty good now.
it was a benign cyst but very scary at the time. I also had some bone loss but can feel already some of this has grown back.

I have a CT end of March to check how the bone regrowth is going and if there’s any sign of the cyst regrowing as the one I had had a tendency to return. If all good the Max fax surgeon said another scan in a year and then they’ll discharge me.

recovery from surgeries has been pretty ok. I won’t deny it was a scary time. The cyst I have is pretty rare and I’d never heard of it even though I’ve been a nurse for over 20 years so I understand how uncertain a time this can be

Thanks so much for your reply. Oh that’s great news, am so pleased for you-sounds like quite a journey. Can you visually see a difference to your jaw? Consultant at max fax has said either benign tumour or cyst. Did you lose any teeth? My son’s wisdom tooth has been pushed forward so they may take that out. He has CT next Thursday, tel consultation Friday and I’m assuming a date to operate after that. The problem we have is a big family holiday for 12 to Barbados 13th Feb for a week. My son is adamant he wants to go, they haven’t said no don’t go but I’m not sure what to do. No insurance to rebook. Obviously his health is priority but I also think a chilled out week in the sun would fk him good before surgery. Did you know your jaw was broken or was it an incidental discovery? Dentist said jaw break is biggest risk, consultant says infection. Anyhow I’ll know more next week after the scan… I won’t enjoy it if we were to go anyway 😢

My cyst was towards the back of my upper jaw. You can’t see a difference now but I notice the side where I had the operation looks slightly fuller but it may still settle further and everyone else says it’s not noticeable.

i think I had the cyst for over a year and they are slow growing- so much so I was quite dismayed after my scan and it found to be very large and occupying a lot of my sinuses on one side. I had no idea! I do have some weakening of the jaw on that side and I did have a small crack in the jaw bone, I think purely from the pressure exerted in my jaw from the cyst. I’m hopeful this will heal.

I havent lost any teeth yet but I’ve been warned that the surgery may have damaged the nerve/ root and some of them may die off at a later date and need extracting or root canal treatment so I’m due to see an endodontist 3 months post op to check them.

the cyst did get infected and I ended up in A&E at one point and IV antibiotics so I agree that is a risk. I think you should get the scan first and see how big it is and then make a decision about the holiday but like I said they grow slowly so if the max fax surgeon is ok with it, maybe getting treatment lined up for when you get back would be a good option?

If we were to go I’d like to take anti bs with us as a precaution (if that’s even possible). There is no pain right now, he has a blocked saliva gland (how it was discovered). He’d been complaining for a while of swollen lymph nodes but he’d had a few colds and I couldn’t see it. The doctors couldn’t either and so he was sent home. Thanks to a dental check up and a very thorough dentist, she did a detailed scan and he had an emergency referral the next day at the max fax dept.
when you got an infection did you get pain/fever? His mass is bottom left at the back near the wisdom teeth. At least consultant has dentist’s scan and then next weeks CT to see the growth rate. The dentist has put the fear into me, yesterday she was saying I need to push to get him operated on ASAP because of bone loss, max fax consultant was calm and said ct in 3 weeks, operation 2 weeks after that. I’m not sure if this is reassuring or whether the delay is NHS waiting lists. It’s been great to speak to you-thanks again for your prompt replies, I’m so grateful 🙏🏼

When I had the Infection it was really painful and I also had pus leaking out- it was horrible and you wouldn’t miss it.

with regards to how quickly your son needs surgery, it may depend on the CT result. Have they mentioned biopsying the area or are they planning on taking it all out in one go?

my understanding is that as long as the cyst is definitely benign then a week either way would probably be fine as they are so slow growing

That infection sounds awful-you must have felt lousy.
I think he said iits either a cyst or ameloblastoma (benign). His third choice was a dento something but thinks not as likely). If it’s a tumour he’ll take a biopsy and wait for pathology to operate again. If cyst they’ll take out and look to maybe take out his wisdom teeth at the same time. Not sure about bone situ etc. it’s been growing as I can see it now and my son said inside around his wisdom teeth seems bigger this week. He’s had since last summer but didn’t mention til October. I’m going to write some questions for the consultation. Hopefully we know more after the ct. until it’s out and confirmed as benign I’m a little on edge. I do think tho that he must be fairly sure it’s benign to have said it without mentioning the alternative. Will update Friday. Not sure how I’m meant to sleep til then lol

Yeah the infection was pretty bad but actually I think I had a low level infection for months prior that I wasn’t aware of because now it’s all cleared out and treated I feel so much better.

my CT showed a large cystic mass and as it was big my treating team were also concerned it could be an Ameloblastoma too so I went for a biopsy first. At that time I asked if they thought it could be cancerous and my surgeon was fairly certain as well it was more likely to be benign, but the wait for the biopsy and result felt ages and was very stressful!

It was found to be an Ondodontic Keratocyst which is another rare benign cyst that is not as aggressive as an Ameloblastoma. It’s been very strange being treated by my dentist and endodontist as it’s so rare but they do grow slowly.

it sounds like the team treating your son are being very proactive and have a plan which is reassuring. I imagine just from the appearances they have seen already that they are fairly certain this isn’t malignant. Head and neck cancers are pretty rare anyway and especially in someone so young. Don’t forget they would have seen many X-rays and examined many people and so have a fair idea what something is even before a biopsy.

good luck and solidarity, it’s a scary thing to go through. Please don’t google anything. It’s not helpful and I think made me more anxious. I made a conscious decision not to after the first few weeks and it definitely helped with the anxiety

So true-I keep trying to reassure myself of their expertise and the routine of examining x rays on a daily basis (one of the consultants has just won a national award for his work). I’ve also had clients that have had a cancer diagnosis say they were warned before biopsies were confirmed that it was likely they had it. Another with it in the jaw had biopsy and ct scan on the day of the consultation at the same max fax clinic. Anyhow will let you know Friday what the ct scan shows and if they have a date for the op, thanks for your kind words. It really helps ❤️

Hi, my son had the ct and then tel consultation the following day. Pretty much same conversation-ameloblastoma or cyst. If cyst they’ll put a drain in (I thought he said 6 months but wasn’t yours 6weeks?) but if tumour they’ll scrape it out. The bone is fragile so soft diet, he’s on antibiotics this week as had some tenderness and cheek slightly red. We’re going away and they’ve given us anti bs to take with us just incase. I won’t fully relax and have warned him no sport etc. We land back Fri 21st so op in that last week or early March. His consultant is off for all of Feb so I do think they’ve said go away partly because of this but the sun and rest will do him good prior to going in. He also said depending on what it is he’ll be monitored for 10yrs or his lifetime. I’m glad he’s 16 and still growing, I hope his jaw bone will recover 🤞🏼

Glad you had an update. I did have a drainage tube for 7 weeks but I’ve read some have this for far longer so that sounds about right.

as the surgeon isn’t around in Feb it sounds like a good idea to get away now and rest, especially if he has antibiotics to take with him.

the follow up I think depends on what it is as some recur often and as he is so young that’s reassuring he will be followed up for so long.

I think he has a really excellent chance of the bone growing back, I read a research paper that a teenager had one of these and her bone started rapidly growing once the drainage tube was in and the area started to decompress.

im in my forties and 2 months on and I can feel my jaw is stronger than before - (I’m eating again on that side including apples crusty bread etc which I was too worried to do for months) I can also feel the holes in the jaw have improved so I’m sure a younger person will heal very quickly

It's amazing how the bone grows back so quickly, isn't it?

Yeah it really is. I think as long as there’s no underlying gum disease and you follow a healthy diet etc to promote healing. Bodies are amazing. As part of my recovery from all this I’m trying to focus on giving my body the help it needs to heal- ( good diet, exercise and rest) and not focus too much on why I got this in the first place.

That’s so encouraging! My client yesterday said this happened to her husband when he was a teenager and he’s had no issues since. It’s probably more common than you think and yes I’m very happy he’ll be monitored for so long. Looking forward to getting it sorted, I think he’s already thinking it’s time to be healthier. He’s been earning his own money and so the empty fizzy drinks bottles and pizza boxes lying around his computer have been on another level. He’s back on water so it’s started. Keep you posted. One last thing-did you say you had a fracture already when they discovered the cyst? And what type was yours?

I haven’t been told what type of fracture but I think it was along one of the areas in the upper jaw where there was simply no more room for the cyst to grow so the bone started cracking.

mu brother described it like water in a crack that freezes and prises apart brickwork etc which sound like a good analogy. I had quite a lot of bone loss in that area too which obviously weakened it.like I said though week on week my jaw is feeling stronger. I’ll know for certain after my scan but fingers crossed I won’t need further treatment. Have a good holiday before the surgery. Hope it all goes smoothly

Hi, just thought I’d update. We had our holiday and had a great time. The op was brought forward a week so he had it on Tuesday just gone. It’s a cyst which they’ve drained and also put a drain in for any remnants. Theyre saying a few weeks with that in and he has a follow up appointment 13th March. We should know by then what type of cyst it is. He’s rinsing with salt water but is waking in the night with the pain. Ibuprofen and paracetamol are helping but it’s pretty constant dosing up (although yesterday he managed 1 dose all day). He’s sick if the taste of blood and it’s so hard to eat. Hoping he doesn’t get an infection or anything. There’s still a lot of swelling but improved since Thursday. His jaw bone is like eggshell apparently so hopefully it starts to grow back. Did you find it uncomfortable until the drain was removed?

Thanks for the update- I’ve been thinking about you and wondered if he had the op yet.

I would say this sounds about the same as my experience. I needed constant dosing for the first couple of weeks and then slowly was able to wean myself off the painkillers. I was also prescribed some cocodamol which I used sparingly but it does start to settle.

i found after a few weeks the area just felt a bit sore but manageable until it was taken out. I have a repeat CT on 18th March and then results on 4th April so will let you know if it’s all completely removed and ok. I hope your son continues to recover. It’s not easy having the drain but at least you know the area is now able to start healing. Towards the end of the 7 weeks I had the drain in I had a scan which showed the bone was already starting to regenerate and I’m in my 40s so I imagine a teenager will heal quickly.

I was wondering about asking for something stronger but hopefully it eases up. That’s great news-hopefully you’ll need no further treatment too. The consultant said prior to the op that he was likely to need checking for either 10years/or for life depending on what it is.
Today he’s able to open his mouth slightly wider which is really positive but is continuing on porridge, noodles, yoghurt, pasta. In desperation he’s been sucking space raiders lol.
one last question did you have a LA or GA to remove the drain?
Fingers crossed for your results early April 🤞🏼