Chiari Online Support Group

Recommendations for Specialists in Ohio?


#1

Hello, everyone! At this point, I am not too picky when it comes to distance from where I live but I would just like to find a reputable doctor who actually knows something about Chiari. I am near Toledo, and looked up the Dr who I saw was suggested in an older post, but could not find information about him. I really appreciate any info you can pass along. Thank you!


#2

I am a newbie to CM. Just since 7/24. Long story short I’ve had stroke like symptoms while driving and a seizure while driving. So obviously I’m not able to drive for at least 6 months. I’ve done some research. I found on the CM website dr benzel. He is thru Cleveland Clinic. I will be seeing him at the end of October. Btw I’m in about an hour east of Cleveland. From what I saw he has wrote articles about chiari. Have you found anyone else yet?


#3

I am so sorry it has taken me so long to reply! I saw that dr’s name while doing research as well! I hope he helps with your symptoms…this whole CM thing is a bit scary, isn’t it? I have my third opinion with a neurologist in Toledo at the beginning of November. It’s probably not the right way to approach this, but I’m almost assuming he will write me off or ignore my symptoms like the other two drs have, so I’m trying to find someone who specializes in Chiari or at least knows a little more than the average Neuro doc. Anyway, hope you are doing well and thank you so much for the reply!


#4

Hello, I was just diagnosed yesterday with chiari at just over 5mm. I live in Findlay and we call our hospital death valley… real name it Blanchard Valley Health Systems… so needless to say I will not go to anyone in this area… Did you have any luck finding a good neurosurgeon in Toledo. I have been referred to UTMC, is there a good one there, do you know? Thanks for any and all help!


#5

Yikes! That’s terrible…I’m sorry your local hospital is that bad. I was able to find a neurologist who I like quite a lot in Toledo. I have not been seeing him for very long, so I can’t give a solid recommendation, but he is the first doctor who has listened to my questions and not made me feel crazy. Pretty important, if you ask me. Since you are asking about a neurosurgeon, you may already have a neurologist and this recommendation may not be of much use, but if you could use one his name is Dr. Subrahmanyam Chodisetty and he is in Toledo. Hope this helps! I’m sorry you are now a part of the “Chiari club” but hopefully you will be under the care of a good doc soon.


#6

Thank you so much for your response and, I will definitely look into him! I am so lost and overwhelmed by all this!


#7

I 100% know how you feel. I’m so sorry that you’re having to go through all of this! It’s really no fun at all. Having a doctor who you trust is such a key component to all of this, it seems, so I hope you are able to find someone soon. Just know you have a whole support system here if you need it. This site has been so helpful, and everyone has been great.


#8

I am beyond happy that this site exist, I never heard of this condition till Monday and coming across this site made it a little less overwhelming. Then finding you looking for specialist in Ohio and that close to me… well it was a relief! Thank you for all your kind words! I hope things are getting better for you and you are managing well!


#9

It is a strange diagnosis, for sure. I found that googling it was pretty scary, so I tend to stick to this site when I’m unsure or curious. It seems like symptoms change constantly, at least mine do, so I’m always on my toes! Haha. Hope you find some comfort and get the info you need :slight_smile:


#10

Oh my gosh googling it makes it sound like a death sentence! I am for sure sticking to this site, it gives me hope. My symptoms are for sure changing and as of right now are getting worse. Today my headache isn’t as bad, but I noticed my heart feels like it’s racing, almost like I drank too many cups of strong coffee… ugh what a yucky feeling! Then my right arm feels like it just doesn’t want to function… I hope the doctor I finally see will help make this more manageable!


#11

So sorry for the delayed response! Yuck…those symptoms are no joke! I have very similar ones (except on the left side) and they are no fun. Hopefully the dr has a plan and can get the symptoms in check.


#12

Me too! I am still waiting to hear when I can get scheduled into the neurosurgeon. My one doctor here wants me to go to Columbus now where she knows of one that specializes in this and hopes I can get better care there… I hope she is right!


#13

I hope she is too! Sending positive thoughts, prayers, everything else your way!