Hi,
I’m new here and I was hoping that maybe I could reach out to some of you for advice. I was only recently diagnosed with Chiari, just about a month ago. I had Bern struggling for years with headaches, neck pain, dizziness, fatigue, fogginess, etc, and I was getting nervous since my symptoms to be worsening with nausea, eye twitching, some facial and hand tingling and other problems. I broke down and went to my general practitioner who was very helpful and ordered an MRI. The results came back showing that I have Chiari with a cerebellar tonsils displacement of 13mm. He then refereed me to see a neurologist. I have a cousin who is a nurse and I choose a neurologist that was highly recommended by her and her coworkers. When I went to the appointment he told me that he didn’t think the chosen was causing any of my symptoms and tried to blame everything on stress and the anti-depressant medication I was taking. Now I have been on the medication for a long time, long enough to know what effects it has on my body. I just feel extremely frustrated that her seems to be dismissing me so easily. He did order a follow up MRI of my cervical spine after testing my reflexes and not liking the results. He said he may refer me to a neurosurgeon depending on the results. I know that this had been a rather long winded rant but I am completely frustrated because I feel like my neurologist wants nothing to do with helping me. I would appreciate any advice. Thanks!
Hi Jessica,
Im glad that you found this site. I havent been on here long but love it. You will get so much info and support. I would say that your dr just does not understand Chiari. A 13mm can sure be causing your problems. I was first at a 4 to 5mm and now 7 to 8mm and I have a ton of symptoms. I would search your area for a dr that understands Chiari. Someone on here might be able to help you with that. You do need someone that understands it and can help you. And if you decide to have surgery, just please make sure that it is with someone that is a specialist in this and not just a NS that may do a few a year. Even if you have to travel for it. Im in Texas and travel to Colorado for my dr. Its well worth it.
Best of luck.
Thank you for your support and advice. I’m very glad I found this site. If anyone knotted of any doctors or specialists in the Chicago area I would appreciate any info.
hi there
now this is going to come off as very blunt
forget this guy/ do not waste another penny or another minute of your time
see a neurosurgeon for input
this is just my opinion but i never got anywhere with the neurologists i had seen
give me a break/ stress causing all your symptoms/come on now
can you tell that i geet angry when i read about folks like yourself being shrugged off
keep us posted/hang in there
I agree with Everyone totally !!! Make sure the Neurosurgeon has Chiari experience. If he hasn't treated 100 patients ask for a referral to a NS that is a Specialist in CM. I am so sorry you received poor information from a "Specialist" of the Neurological System. Unfortunetly this happens all to frequently. Please know you can always come here and find friends that truly understand.
Tracy Z.
lori said:
hi there
now this is going to come off as very blunt
forget this guy/ do not waste another penny or another minute of your time
see a neurosurgeon for input
this is just my opinion but i never got anywhere with the neurologists i had seen
give me a break/ stress causing all your symptoms/come on now
can you tell that i geet angry when i read about folks like yourself being shrugged off
keep us posted/hang in there