Newly diagnosed

Question

Hello, 

I am so glad I found this forum! I was just diagnosed yesterday by my neurologist after seeing him for severe headaches for about 3 months. I am just really scared about what the future holds. Do all Chiari Malformations end up in surgery? I just really want the pain in my head to stop, and get on with my life. I have a Neurosurgeon appointment in two weeks, so I am hoping to get some answers there. Thanks guys! :)

Lani14 · Accepted Answer

i realize every experience is different but PLEASE be careful with your second choice of albany medical...i'm going for repair surgery next month(brain surgery number 3) because they were a bit too agressive in their surgery and took out too much bone.....please please please do LOTS of research and find a real specialist that does more than 8 surgeries a year with you being the 8th....I dont mean to be a downer but i would NEVER want anyone to go down the same path that i have gone down....I pray you find a fantastic NS and that you do well....Many Blessing MoeCoe8 :)

MoeCo8 · Answer

Do you mean be careful with Albany Med or be careful with second opinions?

selmaS · Answer

Hi and welcome to the Chiari forum.

 No, not all with chiari are surgical candidates, but u really need a true chiari specialist not just a NS as they do not all have the experience or info on how to deal with chiari.

 We do have a list of drs compiled my the members here, u can use the list to research drs as we do not refer them.

  Surgery is not a fix or a cure, and knowing the related issues can help if u do have or need surgery.,.so get checked for all related issues and check to see if u have a CSF obstruction.

 U want the best care so also look for a NL that has experience with chiari as well to help u pre and post op as they dx, and u will need them for follow up care once u r released from the NS.

MoeCo8 · Answer

I live in the Capital Region, and will be seeing Dr. Lovely ( yes that's his real name lol :) ) from St. Peter's Hospital. He could get me in the soonest, but I also have a back-up doc, Dr. Adamo from Albany Med that I am looking into.

rae3342 · Answer

I am from the NY area also, which neurosurgeon are you going to see?

Newly diagnosed

Need Advice

Looking for neurosurgeon/specialist in the Northeast for Chiari/syrinx

Confused by MRI- Chiari

#HELP ANYTHING MORE THEY CAN DO?

Need Advice

Looking for neurosurgeon/specialist in the Northeast for Chiari/syrinx

Confused by MRI- Chiari

#HELP ANYTHING MORE THEY CAN DO?

You are reading content posted in the Chiari Malformation Community