CHIARI 1 DECOMPRESSION SURGERY IN BOSTON - HEILMAN? BUTLER? ANYONE ELSE?

[LoreenC21]

Hi, All.  I'm a newbie.  My daughter Jessica was just diagnosed with Chiari 1 malformation 10mm descent.  She has been sick for two years and we finally found the reason.  I've been researching like crazy and very scared by what I find and read.  Met with Dr. Carl Heilman already who would do surgery if we choose but he always does a dura patch because he says too many people come to him for surgery after another doctor just tried to remove some skull bone.  I'd appreciate feedback from patients about him and also about Dr. William Butler, who we will meet soon.  Also, I've been reading some medical studies and one said that 1) there are better outcomes without touching the dura.  Thoughts and feedback on this topic would be really appreciated from patients who've done it both ways.  I also read about a doctor in Japan who was performing less-invasive surgeries.  Can't travel that far but wondering if anyone on this forum knows of any.  Feedback on Dr. Heilman and Dr. Butler would also be very welcome from former patients, please.  Note: my daughter is only 18 so I could go with either an adult or pediatric neurosurgeon on this.

[selmaS]

Hi and welcome to the Chiari forum.
May I ask how old is your daughter.....
It is very important to have the right Dr....and it is not easy to make that choice unless you educate yourself on Chiari and ALL related conditions.....and you will find it easier to choose the right Dr for your daughter. As for your concern with opening the dura it can be cause for concern.....as there are many cases where patients that had this procedure developed all sorts of post op issues.....from meningitis....or a pseudomeningocele ......and several other issues....BUT this is why you want a true Chiari specialist and you want to educate yourself on ALL related conditions....more times then not those that had issues post op when the dura was opened were not aware they also have a related condition Ehlers-Danlos Syndrome EDS......having EDS can cause you to heal slower, develop a resistance to pain meds or anesthetics....and cause you to reject foreign matter such as a dura patch that is not your own tissue....this is where educating yourself and researching Drs comes in handy.

[LoreenC21]

My daughter is 18 years old.  I have done much research and have gone as far as reading medical journals and studies conducted on different types of Dura patches.  I am looking for feedback on two doctors specifically--Dr. Carl Heilman at Tufts Medical Center and Dr. William Bulter at Mass General Hospital, both with experience in Chiari decompression surgery.  Does anyone in this area have experience with either doctor?  What is the test for EDS and who performs it?  Do I need to find a geneticist now as well?

[selmaS]

Many of the top EDS specialists are geneticists.....so starting there may help....I know of Dr Heilman as he attended a Chiari conference I was at years ago...not sure if he will test for EDS, but my Chiari NS did.....

[LoreenC21]

Are you a Chiari patient or medical professional?  I guess we all have to become med pro's when chiari is mentioned but just curious...

[selmaS]

Patient....I only share what I have learned along the way......my surgery was in '09