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

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2

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    #32
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #33
    Stheno
    Moderators, Business & Finance Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 51,687 Mod ✭✭✭✭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


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    #34
    [Deleted User]
    Posts: 0 ✭ [Deleted User]


    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.


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    #35
    Shazamm
    Registered Users Posts: 241 ✭✭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.


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    #36
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #37
    strandroad
    Closed Accounts Posts: 4,676 ✭✭✭strandroad


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


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    #38
    [Deleted User]
    Posts: 596 ✭ [Deleted User]


    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.


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    #39
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #40
    Curious_Case
    Registered Users Posts: 1,525 ✭✭✭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 ?


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    #41
    Shazamm
    Registered Users Posts: 241 ✭✭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.


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    #42
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #43
    [Deleted User]
    Posts: 0 ✭ [Deleted User]


    How many years since you first sought a diagnosis?


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    #44
    strandroad
    Closed Accounts Posts: 4,676 ✭✭✭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.


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    #45
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    approx 3 I would say


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    #46
    Stheno
    Moderators, Business & Finance Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 51,687 Mod ✭✭✭✭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


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    #47
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #48
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #49
    Rodin
    Registered Users Posts: 3,130 ✭✭✭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.


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    #50
    strandroad
    Closed Accounts Posts: 4,676 ✭✭✭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.


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    #51
    Shazamm
    Registered Users Posts: 241 ✭✭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


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    #52
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    413da44f4eafda2e3592d29410d294df.jpg


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    #53
    Rodin
    Registered Users Posts: 3,130 ✭✭✭Rodin


    Shazamm wrote: »
    413da44f4eafda2e3592d29410d294df.jpg

    What's the cause of the pelvic tilt or is the photo just not straight?


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    #54
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    Rodin wrote: »
    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.

    They recognise the individual parts they do. The name is just a combition of the two

    https://www.nuh.nhs.uk/intoeing/


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    #55
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    Rodin wrote: »
    What's the cause of the pelvic tilt?

    come again?


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    #56
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    Rodin wrote: »
    What's the cause of the pelvic tilt or is the photo just not straight?

    The condition - the bone alignment tilts the pelvis


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    #57
    Rodin
    Registered Users Posts: 3,130 ✭✭✭Rodin


    Shazamm wrote: »
    They recognise the individual parts they do. The name is just a combition of the two

    https://www.nuh.nhs.uk/intoeing/

    But they don't fix the individual parts on the NHS?


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    #58
    Rodin
    Registered Users Posts: 3,130 ✭✭✭Rodin


    Shazamm wrote: »
    The condition - the bone alignment tilts the pelvis

    You've had previous arthroscopies?


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    #59
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


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

    That doctor is the one who treats the condition the most - He wrote the handbook on the biomechanics of orthopaedic surgeon.

    It was an example of patients from ireland being treated by him

    The reason why knee and hip replacements can be so successful is down to him


    dror paley principles of deformity correction


    Principles of Deformity Correction is a comprehensive text on the analysis, planning, and treatment of lower limb deformities in an accessible and instructive format. It teaches the analysis, planning, and methods of deformity correction.


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    #60
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    Rodin wrote: »
    But they don't fix the individual parts on the NHS?

    They do in children yes, but one bone at a time.
    The surgeons with more experience can do it all together *USA

    Unfortunately many in the uk don't have the experience it seems


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    #61
    Shazamm
    Registered Users Posts: 241 ✭✭Shazamm


    Rodin wrote: »
    You've had previous arthroscopies?

    No I haven't but most patients do end up with knee scopes many times yeah


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