Chiari Malformation

[izzys83]

My husband had decompression surgery on 19th April for chiari malformation, since then he has been in and out of hospital due to collapsing with seizure etc he lost the use of his legs but thankfully now can walk, he has pappilidemia (not sure how to spell) in his eyes which is not getting any better. And chronic headaches. Lumbar puncture showed pressure but MRI's didn't, docs here are stumped, do you have any ideas? He also has syringomylia C1-T10

[selmaS]

  Can u get an opinion from someone that is on the Trust's list? It may help to get another viewpoint as to what is going on.

I know from my own Drs and research a TC if left untreated can get worse post op following PFD.....

  Sending prayers u get some answers and he gets relief.

[izzys83]

The problem is that I dont think they are very experienced with chiari here in Scotland, nothing was said about tethered cord, and since the surgery he has had head MRI's done but never spine.

The neurosurgeon claimed he has done these before but how many we do not know, and he is not affiliated with the anne conroy trust either.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DH is having such a rough time post op.

There is a possibility of someone developing epilepsy post op, as  is the chance of developing intra cranial hypertension.....

Has his syrinx shrunk at all ?....If not he may have too much CSF being produced...leaning toward the ICP.....

  The other possibility is having cerebral ptosis...has he had a post op MRI yet?

    Was tethered cord ruled out prior to surgery?

  And last is his NS a chiari specialist?

   "selma"