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Hi here is a list to help with a Chiarians visit to a NS with the assumption this is a true chiari specialist.(if you are not sure, do ask how many patients the Dr has seen with this and related conditions)
- once you get a dx and the drs suggestions it will be easier to ask questions, so this can be a difficult task to be ready for.
- with that in mind, have someone along to jot down notes as to the drs suggestions as we can become like a deer in headlights.( ask if you can record this meeting too)
-Ask for a way to contact the Dr with questions you think of , after the appointment.
-If surgery is suggested, asked which type they do, and why.....ie- endoscopy, bony decompression, or PFD w/duraplasty and what kind of patch is used.
-after surgery, how often will you be seen by the dr for follow up visits, MRI's ect..
-is everyone in the OR covered by your insurance, ask for their names and contact( check this with your insurance comp)
-if you traveled to your NS, how long after you are released from the hospital, does he need you to stay in the area.
-when scheduling surgery, ask about local "houses" that you and your family can stay at lower rates.
ie- WI- Kathy's House- see our links page for more info.
TCI in NY has Variety House- see links page for more info
-will the Dr check you for related conditions like tethered cord, syringomyelia(syrinx) or EHlers-Danlos (rejection issues)
-what % of benefits does the Dr feel you should get from having surgery
-if you are not a surgical candidate at this time, ask what treatment options are available, Pain Management, meds, ect...and how often you will be monitored, via a visit or MRI.
-ask if the NS can refer you to a good Neurologist in your area that understands chiari.