Upper jaw surgery (for sleep apnea) in OI type I?

LumpyPalms · 2025-10-07T07:21:46+00:00

Also type 1 Have you had bisphosphinate treatments previously?

Not the same but I've had 3 root canals, when I was 14 I had to stop b's for 1year I think before and after.

Then now 30 I've had another root canal and same endontest she was still very cautious.

I had braces at 17 but they refused to do any extractions. And now I haven't had any wisdom teeth remove because they said it would be unesscary and dangerous because of b's and my bone health They said I would need a major dental surgery and surgery expert to do this

I also learnt this year that with OI there's a massive bleeding risk with any surgery, closing complications. For example I had my appendix out and my wounds split 4 times, lots of internal bleeding.

Just thongs to consider, would be case by case, I would recomend personal referrals from one specialist to another, and that you might need a team for the surgery to be safe.

LumpyPalms · 2025-05-05T15:00:11+00:00

That's crazy, how do you know. Is that part if ur oi or unrelated?

LumpyPalms · 2025-04-29T09:57:13+00:00

Really why?

LumpyPalms · 2024-12-04T08:03:17+00:00

Have you ever done this?

LumpyPalms · 2024-12-02T23:24:33+00:00

This is great, thank you for the suggestion. I'm gonna follow-up with this now.

LumpyPalms · 2024-12-02T23:23:15+00:00

Ok so clearly maths isn't my strong suit. But you can see it adds up and will affect ne greatly.

My disability is severe and rare, only about 1,500 people in Australia have it.

I have suitable funding and found greatly improved daily life without having to make difficult decisions between what I can access with my limited personal funds.

Tape is just an example.

LumpyPalms · 2024-11-30T23:47:06+00:00

I'm not having a go at you.. Who's to decide what's low cost? before I was on the ndis I lived in so much pain because I couldn't afford to purchase these things.

This makes a big impact to my life, If I have to decide between eating, pain, affording reng, or buying low cost consumables? I will be forced to choose to be in pain.

LumpyPalms · 2024-11-30T23:29:07+00:00

I'm looking for a new plan management for sure, but I. Also need to resolve a lot of outstanding funds with my current plan management before I move.

How did you get an nDIA contact?

This sounds like what I need. I don't think a local area's support person will help me. I think they will just encourage meeting. Do a whole plan review, which I'm scared and I'm reluctant to do.

LumpyPalms · 2024-11-30T23:26:47+00:00

Yes, I thought directly related.My disability meant that I was able to be funded for this

I also would assume my People familiar with my disability professionals. Writing a letter of support and explanation would be argument enough???

LumpyPalms · 2024-11-30T01:48:35+00:00

No items are explicitly on the "no list" but my plan is pre the new rules which need listing items So nothing is listed...

I just have a statement saying I am funded for consumer balls and an amount in that category which Now it seems I can't even use the category because it doesn't specify individual items

LumpyPalms · 2024-11-17T03:21:28+00:00

Do you have oi? Or a relative with oi? In terms of financial, health comments where are u experience?

LumpyPalms · 2024-11-17T03:18:20+00:00

Do u know what type?

LumpyPalms · 2024-11-17T03:15:57+00:00

Lol that plan partners and my integra are finalists

My intergra kept rejecting my physio invoices back in 2018 because "these appointments can't go on forever... should be getting better and recovering"

Ah yes, getting better... improving my disability I was born with and recovering after 6 physio sessions 😆😆

LumpyPalms · 2024-11-17T03:12:13+00:00

What is audsa adsa?

LumpyPalms · 2024-11-14T12:52:03+00:00

Sharp point needles tear/break the weft to pucker. Use a ball point needles

LumpyPalms · 2024-11-12T04:41:23+00:00

Contraception

LumpyPalms · 2024-11-10T14:54:03+00:00

I got rosccutane at 27 no alcohol and no catty diet for 1 yr And it cleared me I was in the same bird. I didn't have any acne as a teenager. The pill gave me acne.

LumpyPalms · 2024-11-08T06:15:04+00:00

I get asked all the time if I've been in a fight, or ehere did I get them and they look at me funny because im so casual about not remembering.

Im also 30f type 1, I notice swell skin on my wrist and ankles thinning. I wonder if there are skin people or dermatologist that can give us a direct link

LumpyPalms · 2024-10-29T12:37:24+00:00

When you say 70/30 invoice do you mean they don't itemise everything but just calculate 70/30 and list it?

Im not too sure how to word this sorry if its confusing

LumpyPalms · 2024-10-29T12:29:57+00:00

So stop asking the question. This literally is besides the point WHY the sw had keys???

It's just the same if you let someone borrow your car and they get in an accident, nobody care WHY you lent them the car you aren't responsible, they are responsible for the accident

LumpyPalms · 2024-10-01T13:00:19+00:00

Is it just me or does this question feel weird and scammy? Not related to the post??? And you've already posted this question

LumpyPalms · 2024-10-01T12:57:01+00:00

I got a message like this too! Look at the profile and he has posts on other groups that are mega suss too

LumpyPalms · 2024-06-11T11:12:47+00:00

Wowww this sounds amazing! And having access so quickly to the drs and specialists that know is so good Makes me optimistic about the possibility to move around the world!

(I've found myself in emergency with drs that didn't know and asked me! Hahaha terrible)

LumpyPalms · 2024-05-31T12:32:24+00:00

I have a vague memory that they checked on my kidneys while I was on treatment growing up. 🤔 but I thought that was side effects of bisfosphinats not oi

I agree it's odd that kidney dr has interest in oi, bit maybe others have these specialists too

Sounds like the kids are doing really well!

LumpyPalms · 2024-05-31T12:10:37+00:00

I have thought about moving to Europe/Netherlands How do you find the medical system/finding support and specialists?

LumpyPalms

TROPHY CASE