Recommended Doctor in Massachusetts

[mullie45]

Hello All, I am a newly diagnosed female with Chiari - 12 mm.  I have had symptoms for 10 years and have done everything possible between chiropractors, pain management - shots & nerve lesion.  I would like a recommendation for a surgeon - my doctor is arranging for a doctor but I want to make certain I see someone who has performed this surgery.  I was shocked to hear that this malformation affects the bladder - i had three surgery to help and still have issues.  Any suggestions?  

[Chiaripatient61736]

Like I have seen a few others post Dr. Heilman is great. He has helped me a lot. Tufts is a really good hospital all the staff is awesome.

[selmaS]

  Hi and welcome to the Chiari forum..

The member you addressed you comments to has not been active since the original thread here...you can try to contact them via a PM (private message)which will generate an e-mail letting them know someone is trying to communicate.

You can use the search this community to read older threads...but do look to the dates and post to newer or current ones to be able to chat with active members.

We do have a list of Drs for you to use to research Drs....the list is compiled by the members here of Drs they have been to, ,treated by and liked....not all may be true Chiari specialists so it is important that you educate yourself on Chiari and ALL related conditions so you will know when you have found the right Dr for your wife.

These are the Drs on our list for your state.....if you want to travel let me know where you can /will go so I can post other states Drs lists.

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

[Vijay_alias_Rajendran]

Hello, not sure if you are still active on this site. My wife has been diagnosed with Type 1 and we are struggling to find a good surgeon. We are going to look at Dr. Heilman. Wondering if you could provide some additional details on your wife's health now and if you have any recommendations for a surgeon.
Thanks,
Vijay

[selmaS]

  I think it goes to ego and if they really know what is going on...if they know what chiari is and do a few surgeries and the pt has no issues...thy r fine, but when they have one that does, they r stuck and have no idea and do not know what to do...at this point u r better to find one that does.

  Most Drs will not refer u to someone else, bcuz that is acknowledging they were either wrong or did not know....this is JMHO

    "selma"

[sandy629]

  but to deny any issues ?  or recomend someone ?

[selmaS]

  Most NS's will release u from their care once u r healed after ur 1 yr post op MRI...u will need a NL to follow up with is u continue to have issues, and ur NS should see u if u have new issues, but they only see u when u need surgery....and so many of us want that dr to be our chiari dr going forward , but unless u need more surgery, there is no need.

  "selma"

[sandy629]

  i had dr curry at mass general, good doctor but when his surgery is done so is he. i have heard alot of good things about dr. heilman. i am going to see dr. ronald birkenfeld in milton, he did my disc surgery and he is up on chiari, if he cant help you he recomends dr heilman at tufts, i hope this helps you

[hokkeymom]

My e-mail is ***@****   i hope you beat this chiari...

[hokkeymom]

My wife had chiari surgery on Aug 24, 2011 at Tuffs Medical Center  in Boston, her doctors  name is Dr. Carl B. Heilman.  All I can tell you is he is the best doctor you will ever meet in your life< do yourself a big favor meet with him. My wife is still recovering and the jury is out on her recovery. But Dr Heilman is the best neurosurgen in Mass. with a great team to back him up.

[Cman101]

How is your wife doing

[selmaS]

Hi..since this is an older thread this member may no longer be an active member ...to contact them try sending a PM (private message) that should generate an e-mail to let them know someone wants to talk....or you could create a new thread with questions you may have regarding this condition.

[selmaS]

  Hi and welcome to the Chiari forum.

We do not refer members to Drs, but suggest u see a few that r true chiari specialists.To help u, the members have compiled a list of their drs names so ur research is not so difficult. U ultimately must choose whom u feel the most comfortable with.

We can try to inform u of questions to ask so u know how to interview ur NS....but, that has to be ur choice...I could say go to this dr I loved him and u may not like him at all, and that will not help u.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Since u have a Dx of chiari , u will want to rule out related conditions like syringomyelia , which can affect the bladder as well...and tethered cord, also will affect the bladder.

And u want to know if u have a CSF obstruction and over crowding.

  Ask us questions...and we will share what we have learned in our chiari journey.

     "selma"