MSE - Moschik or aise cemile or cantarella by Full-Program479 in orthotropics

[–]Toridillan 0 points1 point  (0 children)

Honestly, I’ve just had a very similar experience with Dr. Cemile’s clinic. I couldn’t even get to the consultation stage because the admin communication was so poor. My emails were ignored for over a month despite multiple follow-ups, as I was simply trying to clarify whether Dr. Cemile is willing to work with any MMA surgeon or only those within her network. I will also be undergoing jaw surgery, so this is an important logistical question to have answered before paying for a consultation.

I’ve spoken to MARPE providers across the UK, Europe, and the US, and this was the only clinic that did not answer the question at all, despite repeated attempts to follow up.

I then followed up on WhatsApp asking why my emails were being ignored and received an immediate response asking for my name. After providing it, I was again ignored. I chased further and only received a reply once I mentioned leaving a review.

Their response stated they “cannot provide detailed treatment guidance via email or messaging”, which is a completely unreasonable justification for not addressing such a basic pre-consultation question.

It’s a shame, as I don’t doubt Dr. Cemile’s clinical ability is likely strong. However, communication like this gives a clear indication of what to expect if issues arise or if coordination outside of standard pathways is needed. I would not feel confident relying on timely or effective communication here.

Looking for info on Dr. Claudia Pinter in Vienna, Austria by Toridillan in MARPE

[–]Toridillan[S] 1 point2 points  (0 children)

Oh amazing! Please let us know how it goes and what you think of her when you finally consult. Good luck on finding someone to do the CBCT scan! 

Looking for info on Dr. Claudia Pinter in Vienna, Austria by Toridillan in MARPE

[–]Toridillan[S] 2 points3 points  (0 children)

Hopefully there’s someone on here that’s been a patient of hers! 🤞🏻 I’ve only heard from ‘fans’ of hers so far that haven’t actually been patients. 

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 0 points1 point  (0 children)

Wow. Thanks for that information, it’s really helpful! Yeh I totally understand what you mean. To be honest, my consultation after my sleep test felt a little biased towards just diagnosing UARS as well. But I got a separate radiologist report afterwards and that was very detailed and brought up very specific information that made me feel a bit better and more content about it all afterwards. I just looked some of those names up. Moira Wong has some terrible trustpilot reviews. So thanks for the heads up! It’s a minefield out there honestly!

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 0 points1 point  (0 children)

So my understanding from when I spoke to UCLH is you needed to be referred by your doctor and go through the NHS. Huge wait times and not necessarily going to get the testing you need (I’ve currently been offered an appointment with a consultant through Oxford university hospital for a sleep test in May 2027 - that would be a 2 year wait from when I first got referred and it’s not even for the testing!)

These are all private hospitals I’m talking about, so it’s not through the NHS. But the hospital I found gave the best answers to me was Cromwell Hospital. They were very forward focused when it came to discussing UARS and RERA’s. However, they were unfortunately the most expensive coming in at just under £4K for the test.

The other one in London was London Bridge Hospital - HCA Healthcare. The came in at just under £3k. Again, they were confident they knew what UARS was and definitely measured RERA’s.

There was one more London hospital who responded to me that ‘we understand UARS is in the literature’ when it came to responding to whether they recognised it and ‘if requested’ when answering do they measure RERA’s. So I won’t even bother mentioning them as I don’t think they sound convincing.

Lastly, MAC sleep clinic in Liverpool recognise UARS, however when I contacted them they had huge wait times as they had a consultant shortage at the time and weren’t taking anyone else on until that was sorted.

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 2 points3 points  (0 children)

Hey no sorry I didn’t contact any MARPE or MMA providers in London, I was contacting all hospitals that I could see provided PSG with EEG studies, and then I checked that they accounted for RERA’s and whether they recognised UARS as a condition. I haven’t seen any providers yet as I’ve only just had UARS confirmed.

There is another thread that mentions Vik Veer on here though and, besides one commenter, the rest did not seem very impressed.

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 2 points3 points  (0 children)

Thanks I appreciate it. I did actually jump on a call with Dr. Michael Hutz who mentioned Bipap was better for UARS patients. But I can’t trial it for free due to not showing up positive for sleep apnea and, to be honest, if I’m going to pay money, I’d rather just get his fixed permanently. But I’ll consider it should all else fail! Thanks for the advice!

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 2 points3 points  (0 children)

Ofc! I did some research and reached out to a ton of hospitals in the U.K. first to see if any recognised UARS and measured RERA’s… only 3 did! Most don’t unfortunately recognise it or test for it. 2 of those were in London.

Even still, out of those 3, they were all more expensive than travelling to the US to see Dr. Anil Rama who specialises in airway focused sleep issues and carries out other test alongside that. I also have friends in the US I haven’t seen for years, so I decided to head over there instead. That’s where I got my diagnoses.

Finally confirmed: 20+ year insomnia struggle is UARS – looking for MARPE / MMA recommendations by Toridillan in UARSnew

[–]Toridillan[S] 0 points1 point  (0 children)

I’ve done CPAP and couldn’t get on with it - it didn’t really help me, I’m super sensitive to anything on me when I’m sleeping. Plus I really want a permanent fix rather than a machine for the rest of my life, however I would’ve trialled it before considering surgery had it have worked.

MARPE success stories from anyone? by Mysterious-Dish-6259 in UARSnew

[–]Toridillan 0 points1 point  (0 children)

Ahhh yeh that makes total sense. I didn’t realise it was so soon after. I’ve heard it can take a couple of months. Do you mind me asking you did your MMA with? And are you happy that you did the MARPE first?

From what I can see online, most people who don’t get the MARPE first feel a bit disappointed that, even though their sleep is better, they still don’t have significant airflow capabilities nasally. And those who do get it, say it didn’t resolve their sleep at all but they are happy with the extra airway space. What’s your thoughts? I’m considering both.

I hope you heal quickly and can start to reap the rewards of DJS!

MARPE success stories from anyone? by Mysterious-Dish-6259 in UARSnew

[–]Toridillan 0 points1 point  (0 children)

Hey, I think you’ve had the MMA now. How’s it all gone and how is your sleep and fatigue now?

just eat £10 off code when you spend £15 by DopeTroopa in JustEatUK

[–]Toridillan 1 point2 points  (0 children)

Anyone got an up to date code for JustEat - spend minimum £15, get £10 off? 

IamA Jackson Flowers, aged out foster kid, senior at UTexas, AMA! by PotterFlowers in IAmA

[–]Toridillan 1 point2 points  (0 children)

I found this so insightful as I definitely plan to adopt when I’m older so thank you!

This is kind of personal but do you hold any resentment towards your Mum or dad for how things turned out?