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1759188 tn?1324678308

chairi specialist in boston

  i called dr butler at mgh  he does the surgery , does a month  6 month  and 1 yr  after surgery     i would have to get a ns  for any problems.  i called dr heilman at tufts  he sounds a lil better. all cat scans and mri's and doctors notes have to be sent to him and you need a referel he will see you for your problems  after surgery.
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Avatar universal
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.
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3 Comments
Hi Id7367 since this is an older thread, it is very likely the original poster is no longer a  active member and may not see this to reply. You may get more replies if you create a NEW thread asking who has been to and treated by this Dr.
If you have general questions about this surgery, I had surgery with a different Dr and may be able to add some insight.
Do you live in Massachussets? Who was your doctor?
No I am in PA, but I did travel to NYC for my surgery....the Chiari Institute  is no longer open, but that is where I went....my Dr was Dr Salvatore Insinga. My surgery was in '09 and I may have the ability to answer some questions for you. Are you looking for Drs to research in the Boston area?
Avatar universal
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.
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1 Comments
Hi there Loreen, Hope things have improved since your post last year? curious to know about your experience with Butler, who has been highly recommended to us. We're just entering this diagnosis with my 18 yr old daughter. We're not even in Boston (anymore) but would travel there....
1759188 tn?1324678308
  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
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620923 tn?1452915648
COMMUNITY LEADER


  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.

           "selma"
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