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Hi all,

Joe is having more problems, this time with his right leg

not working (he's limping and not using the right leg

basically dragging it along).

After more X-rays and thorasic/lumbar spinal MRI, there is

concern that his spinal chord is having more problems.

Joe saw his local neurologist yesterday and confirmed that

the syrinx (fluid filled cavity in the spinal canal) is definitely

larger than on previous films and there appears to be more

fatty lipomas in the chord. Both issues (rethethering or enlarging

syrinx) seem to be at this point have another spinal chord surgery

looking very likely. It doesn't appear at this point to

be retethered (but it could be in the process of tethering again)

but she is very concerned that we see the neurosurgeon ASAP.

She also ordered an MRI of the brain and cervical spine, we go

monday for that. Hopefully there isn't more going on. We are

schedule for the 4th in DC but are trying to get Joe seen sooner.

Any input, support and prayers would be most appreciated.

Hope you all have a wonderful Easter weekend.

Praying for us all,

AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

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