Chiari is new to me, NS said surgery is a Go

[heatherRL]

I just learned a few months ago that I even had a Chiari Malformation, after seeing a pain specialist for quite sometime. They had seen it on my MRI but did not consider it significant enough to mention. After a procedure there was no end to my pain and fatigue for months. I begged, pleaded, scoured the Internet. They finally told me about the chiari, referred me to a neurologist, who did not think it was an issue either. Due to my persistence she finally sent me to a NS, Dr.Nauta., Louisville, KY. To my surprise he says just let me know when I am ready ready for the surgery. He seems very knowledgable, pegged my life and pointed out things no one else had. How do I find out about his patients, who did well with their surgery? How many needed more surgeries, etc? I have seen his name but no one says they have used him from what I have found here.

[selmaS]

  The thing is how a Dr refers to many symptoms may not be the way u see them, so make sure u do tell the Dr of ALL the symptoms or issues u r experiencing even if u do not feel it is related...let the Dr decide.

[heatherRL]

Thank you selmaS. A questionarre mentioned some of the things you have talked about. Many I have no reference or idea of what they are. Thank you for your advice, seems as if there is still much much more to look into.

[selmaS]

  Hi...u should be able to contact the Dr office and ask if they have referrals from patients....some will supply a list for u.....and by posting this, u may find someone else....

  Make sure this Dr knows about related conditions to Chiari as that seems to be where the bigger problems can occur post op...so ask if he knows about related conditions such as syringomyelia, tethered cord , ICP, POTS, ehlers-danlos, sleep apnea...and go from there....

It is also helpful to locate another Chiari specialist and compare what u were told by each,....educate urself so u will know which Dr to go forward with.