I waited a month and a half to see a neurologist yesterday. He basically told me I do not have ms and the chiari isnt a 1 because i am not at 5mm..I'm at 3-4mm. He said he doesnt even no why the radiologist would put that on there. He said he is going to diagnose migraine symptoms and send me back to my pcp for her to deal with it because he wont be in the office until after the new year. I left there thinking this guy thinks im crazy or depressed. I have been through depression and anxiety. I know the difference between fatigue because something is not right and fatigue related to depression. I have every will to enjoy my life..i am being limited by fatigue and pain. I am beyond disappointed with the outcome of the appointment. My friends and family dont get it. Im not usually a venter but I had to get this out and Im sorry if it doesnt make complete sense..my head is spinning right now.
I am so sorry!! Can you get a second opinion? can you see a Neurosurgeon instead?
Hi..Sorry you had to waste your time and money on this NL..I would suggest seeing a eurosurgeon next...they are the ones that see and deal with this. Have you had a CINE MRI yet...that sees if your Cerebral spinal fluid is flowing correctly.
Remember..some NS's are still not up on Chiari and have the "5mm" rule..which research has shown that in the Chiari cases , SIZE DOES NOT MATTER!!!!!!
Take a deep breath and know we are here to listen ...and share our experiences.
Lori
Hang in there! I hope you get a second opinion or see a neurosurgeon. Don't give up. I left my neurologist appointment feeling the same way (even though I have a 7mm) cuz he said there is no way my Chiari is causing my extreme fatigue and I needed to see my PCP to discover a new cause. Thankfully I came home from that appointment and vented all over Facebook and a friend of mine pm'ed me cuz her 8 year old has Chiari that was discovered accidentally at 2 years old. She pointed me towards some links, I started researching, and my faith that I'm NOT crazy (at least about my diagnosis..lol) was restored.
One of the things my friend pointed me too was a Discovery Health special online. The girl in that special couldn't even be diagnosed w/ Chiari off of her MRI.... yet her symptoms were so severe that she was confined to a wheelchair most of the time.
I, thankfully, have a very helpful and understanding PCP and even though he basically knows nothing about Chiari.... he's completely willing to try and help me find whatever help I need. Definitely request a neurosurgeon consult.
i'm so sorry for you...i am in the same boat. neurologists been looking for ms for years now. guess what...no ms ever found. when i mentioned chiari to my neurologist she actually told me that she thought her radiologists would not have missed that. even then, when i talked about how sized doesnt matter and they wont report it usually unless it is greater than 5mm, she looked at me like i was crazy and said she didnt feel comfortable even commenting on that. so she referred me to another neurologist who is a ms specialist. again, same stuff...no ms. just another dr to tell me i'm nutz. I went in to my neurologist once with what i now know was Trigeminal Neuralgia and she tried telling me I had a cold. I said, well, 'I'm an RN, I'm 36 yrs old and I think I know what a cold feels like'. By the way, I did not have one single symptom of a cold either and I told her that. She drew a CBC and took a UA and sent me on my way. What a joke. I think your best bet is to find not only a neurosurgeon but a Chiari specialist. I found Dr. Heffez with the Wisconsin Chiari Institute and he agreed to review my records and mri's even though I have out of state Medicaid for insurance. He cant see me as a patient but at least maybe he can give me the diagnosis and consult with a neurosurgeon here to get me the help i need. Good luck to you and God Bless!
I think they are separate.... I asked for a cine mri when they scheduled my spine one, but they said the NS could tell the flow from it... so.... we'll see.
I'm still new in figuring this out even though I was 'technically' diagnosed 20 years ago I just found out this year because my symptoms increased to the point that I HAD to do something cuz I can't really function anymore.
Definately get your pcp to order the MRIs. The spine and the CINE are seperate. The CINE measures the flow of CSF through your brain in time with your pulse.
I know there are good NL out there somewhere, but both experiences I've had with them have been awful. I say if possible skip the NL and try for a NS who specializes in chiari!
That’s makes me a little scared. I was diagnosed with Chairi from my MRI last week when my rhuematologist was looking for MS. He also found syrinx, but he referred my to a nl and told me then I would be referred to a ns but what if I run into the same situation. I may go postal if I feel like there is nothing being done I’m living on a fine linE of pain and positive thinking. Good luck girl and be your own advocate. Fight for yourself
I was told I had Fibro and Chronic Fatigue Syndrome before they found the Chiari. It's extremely common to be diagnosed with one of these "catch-all" syndromes when a doctor doesn't know what's wrong or in this case the doctor doesn't know enough about chiari to diagnose it properly!!!
In fact there was some controversy awhile back due to some surgeons doing decompression surgery on patients with CFS and Fibro under the assumption they actually had chiari. http://www.rheumatology.org/publications/hotline/0400fmsurgery.asp
BTW a regular MRI will show if there is a large collection of CSF but cannot show how the flow is to know if it is normal or impeded. I would try to see a NS with experience in Chiari!!!