Sorry I can't remember the name or number for the doctor. Also I do not like to give out or tell someone who they sould see, since it is their health that is on the line if you will.
But I will tell you that the hospital is ranked one of the top 10 best hospitals in the U.S and they have some where around 10 doctors that specialize in Chiari Malformation. Remember you have to choose the doctor that you think it right for you.
I wish you all the best
Hi....I do not know why but it is possible to have seizures with Chiari so your Dr may be correct....some develop epilepsy...and some do not have them post op while others get it as a new symptoms post op....keep in mind not everyone gets this....we are all different, but it is also something not unheard of with this condition,
I also had a study for sleep apnea not a Cpap tho...I did not get that far as my oxygen levels were good....so they felt it was not an issue and since I had surgery I am doing better with my sleep patterns.
You will def want to locate a true Chiari specialist use the list we have posted and use it to research Drs....keep in mind the list is not a referral nor an endorsement for those listed on it...it is only a starting point for your research. And also keep in mind many have to travel to get to one of these Drs....
hang in there ,
Hi and welcome to the Chiari forum,.
Do you know anyone that went there for the treatment of Chiari?
Thanks.
thank you so much do you know the name of the doc and phone number
thankyou for getting back with me i just have sooooo many thoughts about this my current neurologist claims that i am having seizurers i have currently have become my own advocate about 4 years ago i was seeing a different neur and she only said that i had a problem with my brain stem and the ns that i had seen said that surgery would was not recommended until i start to have more problems with that being said back in nov i was at work abut my co workers said that i was having a seizure since then i have had an eeg a 72 hour one that did show seizure activity i am on 2 high doses of medications and my symptoms are just getting worse so i have been getting all my medical records and have read and researched and that is how i found about chiari and the light bulb went off and it was as if i had wrote alot of these posts i have recently stopped working because it has been so life altering that there are days that i can not even function let alone getting out of bed my current neur has not been interested of even getting my previous records and when i mention about the brain stem there is no response that is what has led me to do it myself i truleyt believe that i am on the right track nothing has worked so far am i so glade about these posts and to hear that others have had the almost all the same symptoms that i have i have even gotten a sleep study done and guess what i had a poor response to the cpap machine i always even from the start in nov i have said it is the brain stem there is so much more to be said this is the short end of a long story i welcome any suggestions form anyone thankyou so much for this forum
The best place that I know and recommend in Ohio is the Cleveland Clinic.
Hi and welcome to the Chiari forum,
We do have a list of Drs but they are NS's not NL's....the list is on here as a thread....it should be on the main page, if you have a problem finding it let me know.
Use the list to research Drs and mayb get a name of a NL they work with as many NS's do have a NL they work with....the list is not a referral nor an endorsement for those on the list, it is only meant to be used as a starting point in your research.