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Old 04-10-2011, 07:16 AM
MySon MySon is offline
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Default Mafran Syndrome

Hi everyone

trying to ensure I have everything covered before Dane's surgery and some of his other conditions have made me concerned about Mafran syndrome.

He has a very strong heart beat, trouble emptying his bladder fully, very long arms, legs, toes and fingers and I think a bit of claw toe.

Does anyone know about this syndrome - I am seeing a neurologist on Friday to ensure they take all the right precautions.

Any advice out there?

Chris
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Old 08-10-2011, 11:57 AM
MySon MySon is offline
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Default Re: Mafran Syndrome

An update for you. The GP said he did have a heart murmur, long limbs etc. But the neurologist said it was nothing to worry about - he said the heavy thumping was just because of the distortion caused by the scoliosis.

He was also not very worried about the bladder problems but has ordered an ultra sound the day before the op to be sure.

He also thought the long arms and legs and toes was of no significance and glacaoma in the family not enough to raise any concerns of Mafrans.

He checked out his eyes and all his reflexes etc and said he was fit and healthy - so I am much more relieved that I have had this extra opinion and feel we are ready for surgery in 10 days.

The loan came through (late but still just in time), accomodation is booked for our stay after the hospital. Dane has been eating well and exercising more.

The neurologist we saw had spine surgery himself last year and chose the same Doctor that is doing Dane's surgery. As the receptionist put it - that should make me feel good when this surgeon is the one chosen by the specialists for themselves.

I hope they don't get annoyed at me for taking all these extra precautions but I feel better now that I got them to check out all my fears prior to surgery.

Keep your fingers crossed for us.

Chris
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Old 10-10-2011, 10:46 AM
magic magic is offline
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Default Re: Mafran Syndrome

The positive news must be such a welcome to you and your family. Good Luck. Will wait to hear from you. My daughter is now scheduled for the 2nd of November.
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