What can one do - surgery needed for Procedure not available in ireland??

Shazamm

Hi

I require procedures that are not available in Ireland
no consultant in the country can treat or has experience in this area
and very few do worldwide.

They are not aware of the condition in this country.
Most have not even heard of it.

I have found no way to access this treatment as it is NOT available publicly -
again very few treat this worldwide.

There are hse schemes - and they have turned down every application. treatment abroad cross border -

These schemes are a total crock of nonsense as they will not pay or repay or fund anything and the staff who work there's job is solely to turn down the applications as posted in many newspaper articles.


There is a surgeon in american a Dr Paley who treats this condition and the costs are in the millions.

I have found no help from Td's, or the hse or irish based consultants.

What can be done to get help for surgeries needed urgently?

This condition is real and visible and not something that can be dismissed and yet they do.

Vestiapx

Shazamm wrote: »

Hi

I require procedures that are not available in Ireland
no consultant in the country can treat or has experience in this area
and very few do worldwide.

They are not aware of the condition in this country.
Most have not even heard of it.

I have found no way to access this treatment as it is NOT available publicly -
again very few treat this worldwide.

There are hse schemes - and they have turned down every application. treatment abroad cross border -

These schemes are a total crock of nonsense as they will not pay or repay or fund anything and the staff who work there's job is solely to turn down the applications as posted in many newspaper articles.


There is a surgeon in american a Dr Paley who treats this condition and the costs are in the millions.

I have found no help from Td's, or the hse or irish based consultants.

What can be done to get help for surgeries needed urgently?

This condition is real and visible and not something that can be dismissed and yet they do.

What is it

Bluwave

Joe Duffy?

Shazamm

Ombudsman highlights confusion over scheme for providing health care abroad

https://www.ombudsman.ie/news/ombudsman-highlights-conf/

Vestiapx

Shazamm wrote: »

Ombudsman highlights confusion over scheme for providing health care abroad

https://www.ombudsman.ie/news/ombudsman-highlights-conf/

What is the condition tho?

Shazamm

I've tried to get on Joe duffy several times and with no luck. Covid has taken over the media

Shazamm

It is an orthopaedic condition - it is hard to explain but it is an orthopaedic condition
called miserable mal-alignment syndrome

Shazamm

Miserable malalignment syndrome (MMS) is a term used to describe a triad of anatomic findings—

excessive femoral anteversion (inward rotation of the knee, relative to the hip),
increased knee Q angle (alignment that creates an outward pull on the kneecap by the connecting tendons),
and external tibial torsion

in summary -

Vestiapx

Why won't Irish orthopaedic Doctors help ? What do they say

Shazamm

There are facebook groups dedicated to the condition.

No surgery in the country can treat the condition, I've seen them all, most surgeon have never even heard of the condition.

https://www.facebook.com/groups/713048725502745/

Shazamm

They don't know anything about it, and that nothing is wrong.

They have no experience in it and label many patients as crazy and patients go a lifetime without being treated

Here is an excellent video showing the condition and the treatment


https://www.youtube.com/watch?v=dPHnWDdWLh4&ab_channel=OrthopaedicSpecialists

Stheno

Did a doctor in Ireland confirming your diagnosis?

Shazamm

https://www.youtube.com/watch?v=dPHnWDdWLh4&ab_channel=OrthopaedicSpecialists




<blockquote class="imgur-embed-pub" lang="en" data-id="a/NSb6Maq" ><a href="//imgur.com/a/NSb6Maq">miserable mal-alignment</a></blockquote><script async src="//s.imgur.com/min/embed.js" charset="utf-8"></script>

Shazamm

Stheno wrote: »

Did a doctor in Ireland confirming your diagnosis?

No

They have denied I have the condition,
I have it.

I was diagnosed by the doctors in the uk

No irish doctor understands, I was told I haven't it by irish doctors after getting the diagnosis. Pretty ridiculous and unreasonable stuff.
They then refused to see me and thats it in summary.

Irish surgeons in Cappagh and Tallaght hospital - very well known

Stheno

Shazamm wrote: »

No

They have denied I have the condition,
I have it.

I was diagnosed by the doctors in the uk

No irish doctor understands, I was told I haven't it by irish doctors after getting the diagnosis. Pretty ridiculous and unreasonable stuff.
They then refused to see me and thats it in summary.

Irish surgeons in Cappagh and Tallaght hospital - very well known

Well if its not recognised here you won't get it treated here tbh

Perhaps go back to the doctor in the UK who have you the diagnosis

[Deleted User]

Shazamm wrote: »

No

They have denied I have the condition,
I have it.

I was diagnosed by the doctors in the uk

No irish doctor understands, I was told I haven't it by irish doctors after getting the diagnosis. Pretty ridiculous and unreasonable stuff.
They then refused to see me and thats it in summary.

Irish surgeons in Cappagh and Tallaght hospital - very well known

So why can't you get treated in the uk then?

Sounds odd that Irish experts would be unaware of a condition that's known in the uk and the us. They do train and work in the same facilities

[Deleted User]

Shazamm wrote: »

There are facebook groups dedicated to the condition.

No surgery in the country can treat the condition, I've seen them all, most surgeon have never even heard of the condition.

https://www.facebook.com/groups/713048725502745/

So doctors don't know about it but it's on Facebook. Right so

Shazamm

Stheno wrote: »

Well if its not recognised here you won't get it treated here tbh

Perhaps go back to the doctor in the UK who have you the diagnosis

I have - it is only treated privately there

This is the issue

There is no support to get it done - no avenue or help from any consultant, while my gp has been very helpful and supportive, he has no idea how to get the help.

The hse schemes are no good without the help of the consultants and
in the video linked the surgeon explains how most other consultants cannot correct it.

Shazamm

Niner leprauchan wrote: »

So doctors don't know about it but it's on Facebook. Right so

Not sure what you mean by this.

Shazamm

Niner leprauchan wrote: »

So why can't you get treated in the uk then?

Sounds odd that Irish experts would be unaware of a condition that's known in the uk and the us. They do train and work in the same facilities

There are many many conditions not treated in ireland that require patients to travel.
Most patients get support from consultants here to travel and understand the situation.

But in this circumstance they don't.

It's not odd by any means, it's not a bog standard procedure like a hip replacement.

Stheno

Shazamm wrote: »

I have - it is only treated privately there

This is the issue

There is no support to get it done - no avenue or help from any consultant, while my gp has been very helpful and supportive, he has no idea how to get the help.

The hse schemes are no good without the help of the consultants and
in the video linked the surgeon explains how most other consultants cannot correct it.

Well thats how the HSE works tbh, there are some conditions/treatments that they will not provide funding for

Its basic cost benefit analysis, they have a finite budget

Stheno

Have you tried seeing a consultant in the likes of sports surgery clinic in Santry?

Shazamm

Look

Shazamm

Stheno wrote: »

Have you tried seeing a consultant in the likes of sports surgery clinic in Santry?

Yes , I have. They do not treat it there, I've seen several again. Mihai Vioreanu and others

Shazamm

Stheno wrote: »

Have you tried seeing a consultant in the likes of sports surgery clinic in Santry?

Thanks for the suggestion though , I appreciate any advice

Stheno

Shazamm wrote: »

Yes , I have. They do not treat it there, I've seen several again. Mihai Vioreanu and others

Sounds like your only option is to find the money to pay for treatment abroad tbh

Shazamm

Shazamm

it's unattainable - the price of a house

[Deleted User]

The HSE are not going to fund surgery for something you’ve not even been diagnosed for. Try GoFundMe or buy a National Lottery ticket.

Shazamm

Thanks for the comment.
It doesn't help.
Watch the video above and you'll have more understanding then.

beauf

Don't they have scheme for treatments not available in Ireland...

https://www2.hse.ie/services/treatment-abroad-scheme/treatment-abroad-scheme.html