A neurosurgeon who knows his onions!

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A neurosurgeon who knows his onions!

Postby Gill » Wed Dec 23, 2009 8:24 am

When I got a diagnosis of syringomyelia back at the end of July, I went away and did my internet research. I worked out who seemed to be the most knowledgable neurosurgeon in the UK, saw my GP in mid-August, and arranged an NHS referral.

I finally had the appointment in Birmingham this week, and it was worth the wait.

The NS recommended conservative managment - and explained why, going through MRI pictures with me. He flagged up future managment options if this doesn't work out, and some short-term options around drug treatment. He didn't tell me I was imagining my symptoms, and was explicit that the syrinx isn't an 'incidental' finding. He gave careful information around CSF flow and the concept of a 'crowded hindbrain' - stuff that neurologists, when I've asked, have told me not to go chasing off after. And, happily, he was reasonably optimistic about the prognosis - not with bland reassurance, but again with a clear and careful rationale.

I've still got a thoroughly nasty condition that makes me feel rotten sometimes, and that I'm likely to have for the rest of my life - but I feel more positive than I have done at any point in the last year, when symptoms really kicked off. This was the NHS at its very impressive best.

Gill
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Re: A neurosurgeon who knows his onions!

Postby reedy » Mon Mar 01, 2010 3:44 pm

Hello Gill,
I am really happy to have come across your post!

I'm being seen by a neurosurgeon at NHNNs in London, Dr David Choi. He seems fine (in fact a very well recognized researcher), but I'm having a hard time finding out what his clinical record is like. My appointments with him have been brief. He now recommends surgery (though told me I can wait too, of course, as the decision is ultimately mine), and I'd like to get some second opinions. I'm making some plans to try to see someone in the US (for the second opinions, though not the surgery, as of course as NHS I won't have funds for US medical care).

Any insight you can give on who to see in the UK and how to find out more will be welcome!
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Re: A neurosurgeon who knows his onions!

Postby amr » Mon Mar 01, 2010 5:36 pm

Ann Conroy trust (google it and it will take you to their site). Not brilliant but there is a list of surgeons on it who are clued up.

Chiari.co.uk is a support site for fellow chiarians - lots of good info on there with personal stories too.

Sorry for jumping in but read these kind of posts with interest as my daughter was diagnosed and treated by the NHS in less than 5 and is doing really well 2 years later.

AM 8)
Mum to Natalie diagnosed Jan 2008 (aged 14), ACM, Syringomyelia, Hydrocephalus. Decompression Jan 2008, VP shunt Feb 2008. Perfectly normal teenager and don't we know it!
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Re: A neurosurgeon who knows his onions!

Postby reedy » Mon Apr 05, 2010 10:22 am

Hi AMR,
I've kept my eye on the Ann Conroy site for years since I've been diagnosed, and to be honest, some of my concerns about the care in the UK are based on the moribund state of that site. Most of the pages have not been updated in years and read like a rough draft. The list of NS's includes people who have retired or don't have SM listed on their professional website profiles and it lacks people at the National Institute for Neurosurgery & Neurology, supposedly the nations top place for neuro-problems. There are two new things since I've been monitoring the site - a long-winded distracting discourse on shunts and some news about basic research on chiari in dog model systems. At least they are updates, if not particularly useful ones.

I want to know: who specialises in SM in the UK? How do we find out more about their track record? If we don't have the specialist help we need in the UK, can we go elsewhere (under the NHS)?
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Re: A neurosurgeon who knows his onions!

Postby amr » Mon Apr 05, 2010 2:09 pm

HI Reedy

Chiari.co.uk is a support website for sufferers of CM & SM (in the UK)

To be honest I do not rate the Ann Conroy Site for the same reason you gave , I have been looking at it for the last 2 1/2 years since my daughter was diagnosed and have noticed how little info there is on there but it is the only 'official' one in the UK

The above site for me has been much more useful and there is a very supportive forum too.

On that site there are links to various blogs, one of which has a list of surgeons that other sufferers recommend from personal experience. One thing tho that you need to remember is that 1 person may have a good experience with a surgeon but another may have a bad 1 with the same surgeon. (I highly recommend Natalie's surgeon but another member of the forum did not fare so well but WAS referred by him to some-one more local to him so WAS helped indirectly)

Several members of the forum have also tried to get the NHS to improve the knowledge base out there amongst NHS staff (quite poor at present as CM and SM are NOT EVEN mentioned on the NHS encyclopaedia) but this is proving an uphill struggle.

The Walton Centre for Neurology and Neurosurgery in Liverpool is a specialist Centre up north and do have staff who know about these conditions - they also have support meetings several times a year.

Sorry you are having such a rough time but under the NHS you can be referred ANYWHERE in the UK not so sure about outside the UK tho

Take care

AM
Mum to Natalie diagnosed Jan 2008 (aged 14), ACM, Syringomyelia, Hydrocephalus. Decompression Jan 2008, VP shunt Feb 2008. Perfectly normal teenager and don't we know it!
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Re: A neurosurgeon who knows his onions!

Postby Gill » Sun Apr 11, 2010 4:54 pm

Sorry, I should have posted this at the time. I saw Graham Flint in Birmingham (Queen Elizabeth Hospital).

I waited four or five months to see him, but I was really impressed. It was a sharp reminder of why we need the NHS.

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