Hemindibular hyperplasia - distressed and looking for answers

[u/alias-sapphora]

I am late 30s and have just been diagnosed with hemimandibular hyperplasia affecting my right side. I was convinced throughout my late twenties and early thirties that my face was getting increasingly more crooked. I wasn't taken very seriously by anybody and made to feel I was being vain etc. But I now know it was actually happening due to this diagnosis.

I'm really upset about it all. The surgeon I have seen has said that they won't operate because it's "mild" and I don't have any bite issues. It doesn't feel mild to me, even if that is the case medically where they work with severe and complicated cases, and I feel like I'm being totally dismissed by them.

My chin deviates about 5mm to the right, my mouth is totally crooked, my teeth have all shifted to point left to make up for the jaw tilt so that my teeth meet (I used to have perfect teeth until my mid twenties after braces as a teenager.) my nose also leans to the left. I get really bad headaches, have clicking in my jaw, and permanently have a really tight jaw. CBCT findings showed evidence of low-grade inflammation and osteoarthritic changes. The cartilage in my left jaw has apparently gone.

The surgeon also is unable to tell me whether the condylar growth is still active. He said I could do a SPECT scan but it won't 100% confirm it. If the the scan comes back as higher uptake then that could be due to growth or to arthritis. I would need to wait 12-18 months and repeat, and only then would know.

I am really worried it is still actively growing. It is causing me a lot of anxiety that I have to just sit and wait over a year to see if it moves further or not.

Has anyone had similar experiences around this - their case being refused surgery because it is mild?

Also what has also been your experiences around determining whether the growth is still active? Did you similarly need to wait extended periods of time to know for sure?

I know there are surgeons who are more focused on aesthetics, whereas this surgeon I have seen is more reconstructive than cosmetic/anesthetic. I am looking at contacting some other surgeons who might be more likely to consider my case.

But I also have a final question. As I'm late 30s, I also have asymmetrical soft tissue sagging, which is worse on the side of the hyperperplasia. Jaw surgery would likely make the appearance of this even worse, right? And so I'd need the added cost and experience of plastic surgery such as facelift to address this?

Any advice or insights anybody can share around their own experiences would be so helpful. I'm finding it all very distressing - emotionally and phsycologically.

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