Chiari Online Support Group

Newly updated Member Recommended Doctors List!


#21

I did see a doctor at Loyola for a second opinion but I don't actually remember his name. Do you have Chairi or Trigeminal Neuralgia? I had to deal with both. So needed a doctor that was familiar with both of these. I know there is some doctors in Madison that do some of this work as well but I don't know there names. Sorry.

Skye said:

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.


#22


No, I do not have TN. I am having another MRI done next week to see if anything has changed in the last two years and am looking for a NS to see for the first time. I was seeing a Neurologist for migraines when I was diagnosed with CM, but wasn't able to get referrals at the time to see a NS. So even though I've had the diagnosis for years, I'm starting from the very beginning now and hoping to find 3 well-recommended surgeons to get several opinions and then make a decision about treatment. Unfortunately, I am unable to see 2 of the 3 I had been planning on seeing so I'm just trying to find a few more that doctors had a good experience with.

Thanks for the reply!
agunnink said:

I did see a doctor at Loyola for a second opinion but I don't actually remember his name. Do you have Chairi or Trigeminal Neuralgia? I had to deal with both. So needed a doctor that was familiar with both of these. I know there is some doctors in Madison that do some of this work as well but I don't know there names. Sorry.

Skye said:

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.


#23

I highly recomemd Dr. Judy Huang at Johns Hopkins. She is a neurosurgeon and has changed my life. I had two brain surgeries in my hometown that made the Chairi worse. They also put a shunted in to see if that would help with the fluid building up around the incision site. Needs less to say no change. I then went to Dr. Huang with hopes that she could help. I had my 3rd surgery in October 2014 at Johns Hopkins and was shocked at how different I felt when i came out of surgery. Of course I had pain from the surgery but I felt totally different then after the other surgeries. I have also had the shunt removed (by Dr. Huang also) and feel great. She truly gave my life back to me. I couldn't work for 8 months from all the pain. I returned back to work in January and thank God every day for this miracle and for directing me to Dr. Huang.


#24

hey, so for some reason I cannot see where the pdf is? :)


#25

I would like to recommend Dr. Albert Kim in St. Louis MO. He is affiliated with Washington University and Barnes Jewish Hospital. He has knowledge and experience with Chiari and has done numerous successful surgeries for it.


#26

I would like to recommend Dr. Frim at the University of Chicago hospital at the South Side campus he is the Chief of nurosurgery that performed my decompression surgery may of 2014 and he later had to perform a repair when one of the stitches came loose. him and his team are very helpful and knowledgeable regarding Chiari malformations as he is also researching in that area


#27

I just found out today while trying to make an appointment that Dr. Oro is retired now and is no longer practicing, so he should be removed from this list as well. Disappointing, another road block on my journey.


#28

Oh my Lord,the fact that Dr.Oro is retired tears me up,he was my hope & prayer of a surgeon near me.


#29

I had heard so many good things about him, Chiari73, and he was the closest Chiari surgeon to where I live, so to hear that he's retired after getting my referral approved was pretty disappointing.

Chiari73 said:

Oh my Lord,the fact that Dr.Oro is retired tears me up,he was my hope & prayer of a surgeon near me.

#30

Anyone looking for a fantastic doctor in New York City- Dr. Jeffrey Greenfield is the best thing that happened to me. I had surgery two weeks ago and I've never been better.


#31

Thank you, Judith :-)


#32

I saw neurologist Dr. Keith Brecher at Neurohealth in Warwick, RI after having been diagnosed with Chiari years ago. When I described the incident that heralded the worsening of my symptoms, he called it "classic Chiari" and referred me to two surgeons so I could get a clear picture of my options. IOW he's not the one who initially diagnosed me, I don't have a lot of experience with him, but the experience I did have was great.


#33

Dr. Constantinos Hadjipanayis, he is Chairman of the department of Neurosurgery at Mount Sinai Hospital in NYC. Last year he was Chief of Neurology at Emory University Hospital here in Atlanta where he performed both of my surgerys.

Here is his information link at Mount Sinai.

http://mobile.mountsinai.org/profiles/constantinos-g-hadjipanayis


#34

Also in NYC, Dr Soudwhain, @ NY Presbyterian- he’s a pediatric NS but performed my decompression in 2013 even though I was 35 and it literally changed my life. Within a few days pretty much all my symptoms disappeared. He isn’t the best for bedside manners but the he isn’t unkind by any means, just professional and my god the man knows what he is doing. If I ever need another surgery, (God forbid), I will definitely go back to him.


#35

I can’t find the link either, but I have a couple of recommendations as well:
When I still lived in Cleveland, my GP was Dr Allison Hohenberger with UH. Even as a GP, she was fairly knowledgable about Chiari. Her practice is at UMPH in Chardon (bit of a hike, but worth it). My neurologist was Dr Leonard Weinberger, also with UH. Even though he wasn’t overly helpful in getting me relief, he answered my questions better than anyone else has. He’s in Concord.
Now that I’m here in Wilmington, DE it has been extremely difficult finding providers with the caliber of knowledge I got used to at UH and Cleveland Clinic. With that said, I’ve found a wonderful neurologist at the Delaware Neurological Institute. Dr Carunchio. A good portion of his patients are Chiarians, his wife included. So he has first-hand knowledge of what we go through. He has a significant waiting list and almost always runs at least an hour behind, but he’s taking an active role in helping me manage my pain.


#36

The Rowe Neurology Institute for those in the Kansas City area is a wonderful place to go to. All of the doctors there are fantastic.


#37

I would recommend Carl Heilman, MD chairman Department of Neurosurgery at Tufts Medical Center in Boston Ma


#38

Hi! I am from the St Louis area as well, and am wondering if you were able to find a support group or anyone with good experience. I already have my surgery scheduled with Dr Thomas Forget at Mercy but just would like to hear others experiences locally. Thanks!


#39

Me too! Took my son to see him, he was great. Fortunately my son did not need surgery. He was a chiari expert, would have trusted him to do the surgery if it was necessary at that time.


#40

Anyone have a recommendation for someone in Colorado now that Dr Oro is retired?