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Original poster

Severe hypodontia requiring jaw surgery for DS16.?

31 replies

Squirrelsnut · 08/03/2023 11:55

Does anyone have any experience of this? His hypodontia is really severe and he's been given jaw surgery as an option as part of a restorative dentistry programme. Th consultants were amazing but it's still a shock and seems to be relatively rare,

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Lulu123abc · 23/08/2023 21:42

Hi . I have experience with hyperdontia but not jaw surgery. Why does he require this if you don't mind me asking?

Original poster
Squirrelsnut · 24/08/2023 07:11

Thanks for replying.
His upper jaw is not in the right position and needs bringing forward.
What experience do you have and would you mind sharing?

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Lulu123abc · 24/08/2023 07:18

My daughter has 3 extra teeth that were found in an xray. She might get more as is only 6. She had to have her baby teeth removed via GA. The hope is her supernumerary come down and will then get them out too. If they don't come down She will need a bigger surgery in 2 years as they are in the roof of her mouth. Her adulat teeth are pushed very far over to the side as the supernumerary are In the way so will also need work on them. It was all a bit of a shock and seems rare when you google it. First extractions went well that was 6 months ago but no sign of the others coming down. Did you get a date for surgery?

Original poster
Squirrelsnut · 24/08/2023 08:13

No, the consultants keep leaving...😟Feel a bit like we're on a hamster wheel.
He hasn't even started the basic orthodontic programme yet. I need to ring them again today - after getting gcse results!

DS has hyPOdontia, so only 10 adult teeth. He has most of his baby teeth still, which obviously doesn't look right in his nearly adult face. Fortunately his face looks 'normal' despite all his dental issues.

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thatsn0tmyname · 24/08/2023 08:21

Hi. A friend has it and her son has it more severely. He's 11. He'll need a temporary bridge until he's 21 and once he's finished growing he'll need crowns. The NHS are paying because it's genetic and unavoidable.

ImGoingThroughChanges · 24/08/2023 08:23

@Squirrelsnut my son is in the same boat. He’s had braces to try and help the jaw position but the waiting lists here (not UK) mean he isn’t getting appropriate treatment. In the meantime his milk teeth are sinking under the gum. It’s very concerning.

Original poster
Squirrelsnut · 24/08/2023 12:00

It is, isn't it? I can't help but feel guilty somehow which doesn't help. 😞
I keep telling myself he's not actually ill and it will get sorted eventually but sometimes it gets me down.

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Lulu123abc · 24/08/2023 12:24

Yes it is very hard and I also worry about her siblings. They told me it is very rare so more then likely not genetic. But it's hard to know. I did go private for this treatment as the supernumerary were discovered as part of another issue. It is very expensive but thankfully I took out dental insurance before I knew about the supernumerary and was able to use that. Best of luck with gcse results today!

Original poster
Squirrelsnut · 24/08/2023 12:24

Thanks, he did really well!

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DownRightAmazing · 24/08/2023 13:26

Hi @Squirrelsnut, my son has a genetic condition causing severe Hypodontia and will require jaw surgery. He is only 11 so I can't help with practicalities yet. What dental hospital are you under?

Greydogs123 · 24/08/2023 13:39

Not got hypodontia, but have had jaw surgery to move my jaw into correct position when I was 18. After surgery my jaw was wired together for 6 weeks to prevent movement while it all healed. The pain and discomfort of surgery was really only for a week, managed with painkillers. The jaw wiring was far more distressing as it prevented clear speech or being able to eat solid food.

thesugarbumfairy · 24/08/2023 13:56

Hi OP

No experience of hypodontia I'm afraid, but just to say my DS 16 also will require surgery to bring his upper jaw forward (he has a severe underbite). Possibly also lower jaw surgery. He will need a brace first to bring his teeth into the correct position. Its a very scary prospect.

Shopper727 · 24/08/2023 13:59

I had jaw surgery usually done once you stop growing. Not for same reasons but it wasn’t that bad really looking back. I did have a lot of orthodontic work but I was able to decide and consent for my own treatment. Hope all goes well op always a worry with your kids isn’t it

Original poster
Squirrelsnut · 24/08/2023 16:43

DownRightAmazing · 24/08/2023 13:26

Hi @Squirrelsnut, my son has a genetic condition causing severe Hypodontia and will require jaw surgery. He is only 11 so I can't help with practicalities yet. What dental hospital are you under?

We're under paediatric dentistry and restorative surgery at the John Radcliffe in Oxford. They've been amazing BUT their staff keep leaving and the wait for appointments is getting so.long.

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Original poster
Squirrelsnut · 24/08/2023 16:44

Glad to hear that jaw surgery isn't quite as traumatic as it sounds!

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DownRightAmazing · 24/08/2023 16:45

Ha, snap! We are under Mr Virdi in restorative and really like him. We had issues with staff leaving/appointment availability in the past but not recently.

Original poster
Squirrelsnut · 24/08/2023 16:48

Oh wow! Coincidence! I'll ring them first thing tomorrow - things got a bit chaotic today.

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Porridgeislife · 02/09/2023 07:13

@Squirrelsnut I have hypodontia and was missing 6 adult molars (4 x 5s and 2 x 6s). Annoyingly I went on to get 4 x wisdom teeth!

I was a bit younger than your son and had non-invasive palate expansion done aged 12 but needed two rounds of braces aged 12 and 20. If it’s reassuring at all I have nice looking teeth and get compliments on them.

Mine is linked to congenital issues - high arched palate and undiagnosed tongue tie leading to a far too small jaw. My infant daughter has exactly the same issues and fortunately they seem to be much more proactive now and she’ll start treatment (if needed) around age 4.

Original poster
Squirrelsnut · 02/09/2023 07:17

Porridgeislife · 02/09/2023 07:13

@Squirrelsnut I have hypodontia and was missing 6 adult molars (4 x 5s and 2 x 6s). Annoyingly I went on to get 4 x wisdom teeth!

I was a bit younger than your son and had non-invasive palate expansion done aged 12 but needed two rounds of braces aged 12 and 20. If it’s reassuring at all I have nice looking teeth and get compliments on them.

Mine is linked to congenital issues - high arched palate and undiagnosed tongue tie leading to a far too small jaw. My infant daughter has exactly the same issues and fortunately they seem to be much more proactive now and she’ll start treatment (if needed) around age 4.

Thanks for this; glad to hear your teeth look good now!

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shakeitoffsis · 02/09/2023 07:25

I'm an orthodontic and maxillofacial nurse. It's 'rare' to the average Joe but I see this all day every day and the results after surgery and braces are truly amazing. It's a few years worth of work but Iv never had a patient be disappointing at the end, it's been life changing for many.

Greenwitchhorse · 02/09/2023 08:27

Can I give you another perspective as someone who wished they had been given that surgery as a child/teen:

I had these issues (jaw not in the right position and not growing).

My parents chose to ignore medical advice. My mother simply moved me from dentist to dentist every time she was told I needed medical intervention.

Her sheer stupidity and neglect caused me severe medical issues in adult life.

I had surgery and orthodontics work as an adult but it was difficult, expensive and not that successful. My jaw joints have also deteriorated and are really painful. Aesthetically, this has caused me to feel ugly most of my life.

So my point is do all you can for your kid to get this at the right age so they don't end up with a litany of issues with their teeth/jaw and mouth.

MirrorMirror1247 · 02/09/2023 08:33

No hypodontia, but I had double jaw surgery as part of orthodontic treatment, although my jaws weren't wired like a PP, so I was (sort of!) able to speak and found I was able to eat most things if I cut them small enough that I didn't have to chew. The first few days afterwards are pretty rough, but I'm so glad I did it and would definitely do it again if I had to. Feel free to ask any questions.

Original poster
Squirrelsnut · 02/09/2023 09:34

shakeitoffsis · 02/09/2023 07:25

I'm an orthodontic and maxillofacial nurse. It's 'rare' to the average Joe but I see this all day every day and the results after surgery and braces are truly amazing. It's a few years worth of work but Iv never had a patient be disappointing at the end, it's been life changing for many.

Thank you all for taking the time to reply. It's reassuring to hear that it's not such a rare and bizarre condition - sometimes we feel so alone with it.

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Monstermunchy · 17/02/2024 10:31

Hi I know this thread is a few months old but it’s reassuring to hear that the end result can be positive for Hypodontia - I don’t have anyone else to talk to this about .
@Squirrelsnut Hope treatment is in progress now.

My ds is missing 6 adult teeth - and a year in to complex brace treatment - he has to have dental screws next.
I’m missing (I think) 3 adult teeth (still have 1 milk tooth) so he’s inherited it from me. I also wish I’d had orthodontic treatment as I have a cross bite too. Facially my dentist has reassured me that he couldn’t tell until he looked in my mouth but the older I get the more aware of my teeth I am! But feel more guilt that I’ve passed this on. Does anyone know (@shakeitoffsis?) if this gets worse every time it’s passed on? Eg could any kids that ds has have even more to deal with?

Original poster
Squirrelsnut · 17/02/2024 19:10

Hi @Monstermunchy. Believe it or not, it's only TODAY that his appointment letter came through - for May!
Interestingly, his aunt (my SIL) has recently started treatment for an hitherto undiagnosed jaw and tooth issue at 47, so there may be a genetic component involved for DS. The doctors always ask and we always say no up till now because we didn't know.
I guess forewarned is forearmed, although it doesn't alleviate the worry

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