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netty
23rd November 2006, 01:01 PM
Can anybody help on a query I have. We have gotten Mr. Ben Taylor to review Lauras notes. His suggestions are (1) right thoracotomy, anterior release and fusion with growth arrest. (2) T3 to L1 posterior spinal fusion with instrumentation. Can anyone explain what all that means? We wont see our irish consultant until the 12-12-06, so cant ask for his input on this opinion until then.Also she has a Chiari malformation, cerebella tonsil herniation in the foramen magnum. No associated Syrinx. Risser grade 0. 66 degree cobb angle T6 to L1.
He recommends early surgical correction and fusion.
Can anyone translate that into plain english? Netty

titch
23rd November 2006, 01:34 PM
Hiya,

Roughly speaking:

Right thoracotomy - this is an incision through the rib cage on the right side, to allow access to the front of the spine

Anterior release - the removal of discs, often done as it makes it easier to straighten the curve

Fusion - bone paste (and sometimes other materials to help maintain the correct spacing between the vertebrae) is inserted to allow the vertebrae to heal together and effectively become a single bone

Growth arrest - this basically means that instead of just making the ends of the vertebrae a bit rough so that the fusion will take, they are careful to destroy the growth plates. This is done in younger patients, because otherwise the vertebrae can continue to grow, which isn't good when they're held in place by rods and can cause a problem called crankshaft phenomenon. The growth arrest prevents this - as your daughter is skeletally immature, it's a very good idea.

Risser grade - this runs from 0-5, and is a measure of skeletal maturity, or how close a child is to finishing growth. 0.66 is very low, and means that she's got a lot of growing left to do.

Cobb angle - this is the usual way of measuring a curvature. Basically a point is picked at the top and bottom of the curve (the most tilted vertebra before the curve begins to return to straight), and a perpendicular line is taken from the top or bottom of the vertebra. Where the lines cross, the angle they make is measured.

T6-L1 is a fairly normal position for a curvature, and it's good that it looks like it can be sorted out without going into the lumbar region. Laura should maintain a good deal of flexibility, and long term outcomes are very good :-)

Has anything been suggested with regards to doing anything about the Chiari malformation? I'll need to go and do a little research before writing anything about Chiari, although I am sure it is good news that there is no associated syrinx (a syrinx is effectively a pocket of fluid that collects alongside the spinal cord and can cause some compression of it). It may well be that the Chiari is very mild, and will never require any treatment for itself, but it may need periodic monitoring with MRI scans to check it hasn't changed.

Hope that helps a bit!

netty
23rd November 2006, 05:54 PM
Dear Titch,
That was a fantastic help. My typo errror, her cobb angle is 66 degrees, and her bone maturation is at 0.
The worrying thing about the Chiari is that her neurosurgeon in Ireland says she does n't have one! Wheras Mr. Taylor differs on that diagnosis. The reason she was sent for a neurological consult was because her orthopedic surgeon suspected the presence of a syrinx. As you say we need to know more this Chiari for the long term, follow up MRI's for it etc.
Also she developed nystagmus, a condition of the eyes which 2 other doctors have said the Chiari caused. They say doctors differ and patients die, bit this is driving me crazy. At least on the 12th of Dec we can thrash it out with Mr Moore in Ireland.
We're waiting on word from the Wellington hspt in London for a casn price for the op. If we decide on balance to go with Mr. Taylor, I dont think that My Bupa cover in Ireland will cover for the op in England.Thanks again for all your help and support. Netty

Thaleias spirit
23rd November 2006, 06:34 PM
Netty I really don'y have anything to add except I'm really glad you got a second opinion. Sorry to hear there is a dofference in opinion with regards the Chiari though. Would you be able to maybe get an opinion from another consultant maybe in Ireland? Reason I say this is mainly because of what costs are involved in the whole surgery.

I myself see Ashley Poynton and find him extremely thorough. I went to him seeing a second opinion and he had a lot of tests done and sought many opinions from colleagues before he carried out my surgery.

chele

netty
24th November 2006, 10:32 AM
Hi Chele,
We had to wait 3 months to get our appointment with the neurosurgeon. There is only 1 pediatric neurosurgeon in Ireland, or so I was repeatedly told by my GP, when the wait was driving me mad! The neuro did n't agree with my orthopedic consultants oppinion. But now we are in a position that Mr.Taylor and our ortho consultant in Ireland say that there is a Chiari. But the neuro surgeon says there is a cerebellum herniation but no Chiari. As Titch says it may be the case that the Chiari is so small that no treatment is needed. But at the least you would think that they would monitor it over time to look for changes if nothing else. But if the neuro guy doesn't even think it exists then thats not even going to happen!
At least with Titchs explanation of what Mr. Taylors report says we are in a stronger position going into Mr Moore on the 12th. We can ask him to explain why he wants to take a different course of action and why his may be better than Mr Taylors surgical plan.
I cant help feeling rightly or wrongly that on sheer volume of population that the British surgeons would have more actual surgical experience than the Irish ones. Thanks for all yere support, I'm only finding my way around the computer, so apologies to anyone who I have not responded to. Netty

newgirl
26th November 2006, 10:21 PM
Hi Netty,
Fair play for getting the second opinion so quickly, it will be good to have your options clear in your head when you go back in Dec. It is frustrating that the orthopaeds and the neuro don't agree about the Chiari. I presume that a radiologist reported on the MRI, do you have access that information?

Take care,
Nicola