Chiari Online Support Group

Newly updated Member Recommended Doctors List!


#1

Here's the updated member recommended doctors list.

A few things to remember. First, these are member recommendations. Which means these doctors may not be Chiari specialists, but they were recommended because the member felt they had a positive outcome at the time they posted the recommendation. It's up to YOU to decide if this doctor will work for you, and to do your own research.

Second, get multiple opinions if possible. The primary treatment for a Chiari Malformation and/or Syringomyelia is surgery. The success rate for this surgery is not ideal, and only 60% of patients feel the surgery is a success at the two year mark. Your chances improve by seeing a specialist.

Third, neurologists typically prescribe medications for migraines, which are usually not effective for Chiari patients. If you have a neurologist who is thorough, attentive, and wants to get to the root of your symptoms, to include referral to a neurosurgeon, PLEASE post them here. Finding a Chiari neurologist is difficult for many, and your recommendation can help people greatly.

Fourth, if you have a great doctor, please post their name and location here. We are looking for doctors in all specialties who are knowledgeable about Chiari.

And last, we can't have negative reviews of a doctor posted here, per site rules.

Please let me know about any mistakes, broken web links, or if a doctor is retired or no longer practicing by adding a comment to this discussion.

Thanks!

Mandy


#2

Thank you, Mandy! I appreciate your work on this list.


#3

Thanks Mandy! :)


#4

I want to recommend Dr. Glenn Harper to be added. He is with Seton Brain and Spine in Round Rock, TX. He is one of the most amazing doctors I have ever had to deal with. He is a neurosurgeon, but he is not one that believes surgery has to happen. However, if he believes surgery is right, he will tell you that as well. He is very thorough in running tests to see what is causing the issues. There are people that fly in from all over just to see him, he is amazing.


#5

Okay, I was just making sure.


Thanks :)


#6

My GP gave me my surgeon referral. She has been dealing with me since I was 16. She is GP and also an OBGYN and can tell when something is wrong with someone, even if they don't know. And amazingly, after all these years she can still read an MRI as well as most radiologists

Her Name is Margaret Conte

302-■■■■■■■■

Newark DE


#7

For pediatric neurosurgery Dr Michael Levy in San Diego Ca (rady childrens hospital) is absolutely amazing to work with. Extremely knowledgeable and handles the most difficult situations with complete professionalism! We Love him and his office staff!


#8

No problem Mandy, thanks for the consideration =)


#9

This is amazing that someone did all of this work..wow! :)


#10

Dr. Gerald Grant *sadly* is no longer at Duke in NC. He moved out to Stanford, CA.


#11

I would say Dr. Tew. should be removed as he is no longer practicing neurosurgery at Mayfield. he is still practicing only neurology at UC.


#12

Dr John Brayton, in Geneva IL did my Chairi Surgery in March of 2012. I have also seen and would recommend Dr. Sekula in Pittsburgh PA. Dr. Sekula trained under Dr. Janetta. I would recomment both of these doctors. They are both Neurosurgeons.

My neurologist is Dr. Santwani. Also Geneva IL. I would highly recommend him as well. When I was diagnosed with Chari he got Dr. Brayton involved right away and they have worked together on my case.

Not sure what additional information you might need. Let me know. Thanks.


#13

Dr. Barth Green at the University of Miami Hospital. He did my chiari surgery in December 2004. I was treated like a queen under his care. My only complication was a spinal fluid leak at my drain. That was repaired with a blood patch. My headaches and balance issues were gone immediately.


#14

I saw Dr. Dong Kim at Memorial Herman hospital in Houston, I loved him. He listened to my symptoms, performed my surgery 2011, I did have to have a shunt put in a couple of weeks later as I developed aseptic meningitis but he took good care of me and I have been good so far. I would recommend him.


#15

Hi, I would like to add a Dr but do not know how. I am from BC Canada. Help me please!


#16

Thanks, Desron, just list him here.


#17

His name is Dr. P. Govender of Kelowna BC Canada. He is a Neurosurgeon. He did my surgery and has treated me with the utmost kindness and respect. I developed an infection after surgery, and he has stuck with me and puts up with all my lists of questions.


#18

Hi Mandy,

I'm new to this group and this is my first time on this site. I am not seeing a list of recommended doctors. Am I missing something or is it just members each listing their recommendations? I am in Phoenix, AZ.

Thanks!

Kelly


#19

A departing moderator deleted the Data base list. We are reconstructing it at this time. Every bodies recommendations are welcome and we will include. A mobile app is in the works as well although we don't have a time frame.

Kelly said:

Hi Mandy,

I'm new to this group and this is my first time on this site. I am not seeing a list of recommended doctors. Am I missing something or is it just members each listing their recommendations? I am in Phoenix, AZ.

Thanks!

Kelly


#20

Hi Agunnink,

I was wondering if you ever sought another opinion or saw another neurologist or neurosurgeon in the Chicago area. I am from the northern suburbs of Chicago and am trying to find a recommendation for that region. I am familiar with the St. Charles area and know that Geneva is not too far, but I wanted to ask if you saw any other doctors near Chicago or if even during your research you came across some that you didn't end up seeing.

Thanks!

agunnink said:

Dr John Brayton, in Geneva IL did my Chairi Surgery in March of 2012. I have also seen and would recommend Dr. Sekula in Pittsburgh PA. Dr. Sekula trained under Dr. Janetta. I would recomment both of these doctors. They are both Neurosurgeons.

My neurologist is Dr. Santwani. Also Geneva IL. I would highly recommend him as well. When I was diagnosed with Chari he got Dr. Brayton involved right away and they have worked together on my case.

Not sure what additional information you might need. Let me know. Thanks.