chiari

[Littlepond]

My son was diagnose with Chiari I with 15mm cerebellum tonsils displacement. He has headache and pain all over and seem getting worse. we have seen one PD neurosurgeon. He suggests open dura decompression. Is there anyone's kid having had the same surgery? do EDS need to be decided first? is duralplaty or own tissue used as patch? Please help! Thank you so much!

[selmaS]

  A geneticist or a well informed neurologist...My NS had a NL working in his office and gave me my initial DX,,,and told me to see a geneticist for a more details eval.....There is a EDS clinic in Baltimore, MD and the Dr  in charge is the Dr I was to go see....but with a year wait list and I do not drive made it difficult to go....someday tho....

[selmaS]

  The open dura decompression although more invasive is more likely to provide benefits where the other less invasive method that does not open the dura tends to have very short lived benefits if there are any..

EDS must be known b4 surgery...if one has Chiari using their own tissue for a dura patch is best...the other types of dura plasty patch could cause the body to reject it so bovine, cadaver and synthetic are not the best for EDSers...and most with Chiari are found to have some form of EDS.

[Littlepond]

selmaS, Thanks a lot! This is also what I thought. I'm educated by a lot of your previous posts. what kind of specialist can do the EDS test?  I'm seeing a surgeon tomorrow. I definitely will discuss this with him.