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

Shazamm

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

Shazamm

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

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

Shazamm

Stheno wrote: »

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

Deleted User wrote: »

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.

It has been diagnosed.
From CT scans - Computed Tomography

The CT scans are a particular set of scans that it seems aren't performed in Ireland either or performed in some of the private hospitals but I was unable to have them here and contacted many centers.

A CT Scanogram it is called

Stheno

Shazamm wrote: »

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

The comment is the situation though and its not going to change

From the little reading I did less than 10% of the small amount of people who have this syndrome need surgery and there appear to be lots of non surgical treatments that can help so it sounds a bit to me like you should look at how you learn to live with this as you can't afford the surgery

Could you try crowd funding or something like that. Community fundraisers are also really good and communities have raised money to send people abroad for treatments There are definitely rare conditions out there and with our small population it’s not difficult to get that doctors won’t have seen everything. I wish you well and hope you get support.

Shazamm

beauf wrote: »

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

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

Thank you, I wish it was that simple and your help would work

I have not had any success applying for this through the treatment abroad scheme. And I've applied
I've spent 3 years on this already.

Shazamm

gansi wrote: »

Could you try crowd funding or something like that. Community fundraisers are also really good and communities have raised money to send people abroad for treatments There are definitely rare conditions out there and with our small population it’s not difficult to get that doctors won’t have seen everything. I wish you well and hope you get support.

Thanks, gansi
Yes it does seem to be the only hope
Unfortunately the costs are very high

strandroad

So what countries if any treat it in their public system?

Shazamm

Shazamm wrote: »

It has been diagnosed.
From CT scans - Computed Tomography

The CT scans are a particular set of scans that it seems aren't performed in Ireland either or performed in some of the private hospitals but I was unable to have them here and contacted many centers.

A CT Scanogram it is called

It hasn’t been diagnosed by a doctor in Ireland which is more my point.

Shazamm

strandroad wrote: »

So what countries if any treat it in their public system?

The UK used to treat it but not anymore it seems.

I'm not sure where else tbh, the netherlands and germany I think, I'm not sure about spain and france.

The USA do treat it and are very experienced in it but that is all private care.
There have been irish patients treated there in the past for similar conditions - through insurance though and the costs were over 1 million - paid via quinn insurance -

https://www.independent.ie/lifestyle/eight-year-old-sean-the-bravest-boy-in-ireland-28902630.html

https://www.independent.ie/lifestyle/eight-year-old-sean-the-bravest-boy-in-ireland-28902630.html

Curious_Case

Is temporarily moving to another jurisdiction an option ?

Maybe research various health insurance plans to see if the condition is listed in the small print ?

Enquire as to whether there are any UK consultants whose reports would be recognised by the HSE ?

Shazamm

Deleted User wrote: »

It hasn’t been diagnosed by a doctor in Ireland which is more my point.

I appreciate your point.

But he/she doesn't know exactly what they're looking for if you get me?
So how could they diagnose it then?


Cappagh hospital -

The CT scan and CD of it was shared with the consultant and he came back - and named a number of conditions that I didn't have

The scan was shared with a consultant in the UK also and I even shared diagnosis with the irish surgeon who wouldn't even comment on it.

Later on he did mention there abnormalities but again - this was after being told I did not have the condition.

But this is neither here nor there - If he has no experience in it, he has no way to treat it. But he also would not refer me to anyone who did and refused to see me afterwards.

Shazamm

Curious_Case wrote: »

Is temporarily moving to another jurisdiction an option ?

Maybe research various health insurance plans to see if the condition is listed in the small print ?

Enquire as to whether there are any UK consultants whose reports would be recognised by the HSE ?

The reports are recognised by the uk surgeons yes.
Up until the UK leaving there were for sure, every report throughout the EU would be recognized.

These are very good suggestions - I have exhausted the first one and seen many consultants on the nhs but funding for the NHS has now changed a lot.
I really wouldn't know where else to go to get the treatment - there are 4 surgeons worldwide that treat this successfully - 3 are in the US.

It is listed in the small print also - in order words

How many years since you first sought a diagnosis?

strandroad

Shazamm wrote: »

I'm not sure where else tbh, the netherlands and germany I think, I'm not sure about spain and france.

Research it then, as a EU citizen you have the right to move there if need be and it is indeed life changing.

Shazamm wrote: »

The USA do treat it and are very experienced in it but that is all private care.
There have been irish patients treated there in the past for similar conditions - through insurance though and the costs were over 1 million - paid via quinn insurance -

https://www.independent.ie/lifestyle/eight-year-old-sean-the-bravest-boy-in-ireland-28902630.html

https://www.independent.ie/lifestyle/eight-year-old-sean-the-bravest-boy-in-ireland-28902630.html

That boy had a femur missing. Are you sure that you're not falling for some internet quackery? Commercial clinics in the US are not always operating in good faith when it comes to patient's best interest vs their profit.

Shazamm

approx 3 I would say

Stheno

Shazamm wrote: »

I appreciate your point.

But he/she doesn't know exactly what they're looking for if you get me?
So how could they diagnose it then?


Cappagh hospital -

The CT scan and CD of it was shared with the consultant and he came back - and named a number of conditions that I didn't have

The scan was shared with a consultant in the UK also and I even shared diagnosis with the irish surgeon who wouldn't even comment on it.

Later on he did mention there abnormalities but again - this was after being told I did not have the condition.

But this is neither here nor there - If he has no experience in it, he has no way to treat it. But he also would not refer me to anyone who did and refused to see me afterwards.

I did a bit more googling and there are very few reputable sites that mention this syndrome, none of the likes of the Mayo Clinic, the NHS etc

Whereas if I Google another rare syndrome called ehlers dahoff syndrome there are plenty of those reputable sites with extensive information, so I'm a bit sceptical tbh

Shazamm

strandroad wrote: »

Research it then, as a EU citizen you have the right to move there if need be and it is indeed life changing.



That boy had a femur missing. Are you sure that you're not falling for some internet quackery? Commercial clinics in the US are not always operating in good faith when it comes to patient's best interest vs their profit.

Did you watch the video - I've it added to the first post again - Yes I'm not
Ain't . That. The truth ...........them yanks

Shazamm

Stheno wrote: »

I did a bit more googling and there are very few reputable sites that mention this syndrome, none of the likes of the Mayo Clinic, the NHS etc

Whereas if I Google another rare syndrome called ehlers dahoff syndrome there are plenty of those reputable sites with extensive information, so I'm a bit sceptical tbh

Very good point, it is just a name given for a combination of two different issues. it is good to be sceptical - it a condition slighltly like knock knee in a way for the layman - but its very diffeerent in reality - google the videos of it

Technichally it called femur anteversion and tibial torsion -
google these and google the photos of
torsional mal alignment syndrome
or the above
femur anteversion and tibial torsion

Rodin

The Americans will operate on anything of you give them enough money.
When someone has a financial incentive to treat you, I think that devalues their opinion.
The father of orthopaedic surgery is British. I find it strange they don't recognise the condition on the NHS.

strandroad

Shazamm wrote: »

Did you watch the video - I've it added to the first post again - Yes I'm not
Ain't . That. The truth ...........them yanks

The boy in the article you linked seems to have a completely different condition than the boy in the video though.

"Before Sean was born, we weren't aware there were any problems," she recalls. "So when we saw that his right leg was only level with his left knee (because his femur didn't grow), it was quite a shock.

"His left arm also ended at the elbow and his right elbow was missing.

Shazamm

Stheno wrote: »

I did a bit more googling and there are very few reputable sites that mention this syndrome, none of the likes of the Mayo Clinic, the NHS etc

Whereas if I Google another rare syndrome called ehlers dahoff syndrome there are plenty of those reputable sites with extensive information, so I'm a bit sceptical tbh

2 excellent short videos