Hello everyone! I am new to the community and looking for any support and suggestions on how to cope with this. Over the past 6 months I have been experiencing some debilitating symptoms that to this severity were completely out of character for me before. I have a constant headache that shoots down my neck, in addition to regular migraines that last hours where I cannot function. I also am very dizzy/lightheaded and have had moments where I’ve briefly lost consciousness and fallen. I have slurred speech at times and trouble with memory. Also tingling and numbness in the limbs. My PCP sent me for an MRI in May where they discovered chiari malformation of 7mm (per my radiologist). All of imaging is otherwise unremarkable. Yesterday, I saw my first neurologist which I have waited months for. He is telling me that the chiari malformation is a non-issue because even though the cerebral tonsils are low lying, I don’t have a lot of crowding. Despite my symptoms, he thinks chiari has nothing to do with it. He thinks I have vertigo, migraines, possible carpal tunnel and highly suspects narcolepsy (which now that I have researched it, I do as well). I appreciated my doctors thorough analysis and honesty with me, but I felt it to be hasty to dismiss chiari without further testing (cervical spine, CSF flow study, ect). Has anyone had a similar experience? Maybe chiari is not to blame?
My herniation was 7mm and I had all the same symptoms you do. I am 19 days post op and it’s too soon to tell but I am hoping surgery worked for me.
According to a lot of research, size does not matter. Some can have a small Chiari and be very sympathetic, and some with a very large one have nothing more than an occasional headache.
We are all different. The symptom list is very helpful to refer back to.
It honestly does affect everyone differently. My herniation was 20mm and my symptoms were my eyes jumping, nausea, dizziness and if I looked up too quickly or I looked up to hug someone then I would have a hot rush in my head and I would lose my balance and have to hold on to something, but NEVER any pain/headaches. I had my surgery on Friday the 13th of November last year and on Thanksgiving day I was outside raking the yard before family arrived. I had returned back to work. I’m a single mom so I mean I was doing my usual activities, working out, etc. But then after almost 2 months ago it took a turn for the worse and I haven’t been able to work. Everyday is painful with pressure, some more timetable than others. I’ve had multiple CTs and MRIs, but every doctor says they look normal and can not find the source of the pain. I honestly dread getting sleepy because it’s SO painful to lay my head down, rolling over and then lifting back up I almost cry every time. I’ve tried to sleep sitting up, but my neck gets stiff and painful to even swallow. The pain prescriptions aren’t working nor are hot/cold compresses. I pray the best for all of you and that no surgery is required if so just keep the faith that everything will be fine.
I think you may have to get s second opinion because some of your headaches maybe caused from the Chiairi malformation. Just make sure you do the research,and try what works best for headaches. Trying cold packs or other natural methods for the pain. My neurologist told me just to keep an eye on symptoms and get yearly MRI to check for change on the size of malformation.
Thanks for all of the responses! The doctor I saw is one of the best in the area, but I don’t believe is necessarily a chiari specialist. I had an MRI with contrast, but this is not the same as a CSF flow study, correct? I wondered how he could be sure it wasnt causing symptoms without further tests. I also was concerned that he told me it didn’t even need to be monitored or rechecked, just blew it off completely. Can’t the CSF flow and severity of the herniation change over time?
Cine MRI scan is a special MRI study used to observe cerebrospinal fluid (CSF) flow. With each heartbeat, CSF is forced out of the ventricle of the brain, into the cisterna magna, and down the spinal canal. When the heart relaxes, the CSF flow reverses. The movie-like cine MRI captures the fluid movement. The test can determine if, and by how much, a Chiari is blocking the back-and-forth flow of CSF between the brain and spine.
It can change as we age, although in 7 years mine seems to not to have herniated any more.
Up in the tab section are some excellent resource reading material suggested in the help section for you to further learning about Chiari. A well informed patient makes a great patient.