Hi Sandy. Just checking if your daughter ended up having surgery. I have an appointment coming up with Dr. Butler I would like to know.
I am also searching for a good doc for my daughter for Chiari 1 decompression surgery in Boston.
Met with Dr.Carl Heilman at Tufts Medical Center but he has one way of doing things and insists on opening the dura no matter what. Not sure about him yet.
Any feedback from anyone who had surgery with Dr. Heilman??
I was hoping the 2nd doctor we saw would let us know if he thought opening the dura was necessary but he was a total waste of time. Went for a 2nd opinion at Children's (my daughter is 18 so she can see either adult or pedi right now) with Dr. R. Michael Scott. Didn't think she needed a surgery even though she's so sick all the time. Not even a surgeon anymore...just makes money doing 2nd opinions and apparently follow-ups as he wanted her to just keep having MRI's every six months. He was an absolute idiot! He moves patients in & out like cattle every 30 minutes and won't answer any questions. We spent 15-20 minutes with his nurse practitioner and only 5-10 minutes with the doctor, who wouldn't answer any questions. Just said don't have surgery. What a waste of time! My daughter has been sick for 2 years and just diagnosed. The kid can't even leave her bedroom and she's always feeling sick and suffering from headaches (only two of her symptoms).
We are waiting for an appt with Dr. Butler in early October 2017.
Is anyone out there as I see a lot of old comments from 2011??
Please, I'm looking for info from Boston patients, if possible. Also, I will travel if needed. Can anyone tell me more about Dr. William Butler? Anyone have surgery with him or Dr. Heilman, successful or otherwise?
Also, reading about less invasive surgeries, doctors only cutting 2-3 inches. Any of those around here? I'd welcome recommendations even if there aren't in Boston.
thank you selma. as you can figure out im burned out with doctors. lol i am going to make an appointment with him and i will let you know
Hi Sandy...I have heard of Dr Heilman b4, but not the other Dr...and it is entirely possible that he is a good chiari dr and just not on my radar...lol...
But Dr Heilman has been to chiari conferences and spoke and his name pops up quite often....
Just wanted to share that bit with u. I know we did have a member or 2 that went to Dr Heilman...wish I could remember who.
Good luck, and remember go with ur gut, who u r most comfortable with.