New to this forum and unsure of Dx

[Stargazerlily95]

I recently had a basic MRI done and was found to have a 4mm cerebellum ectopia. Was seen by a neurosurgeon just a couple days ago they said everything looked good even my fluid levels so all my symptoms are probably just different types of migraines and nothing to do with chiari so I should just see a neurologist and I don’t need to do any follow up MRIs because nothing should ever change I was probably born with it.

My migraines started when I was a teenager and I have scoliosis as well. Only in the past year have other symptoms started ringing in ears, pressure in my head, neck pain, back pain, headaches that start at base of skull, sensitivity to lights (especially flickering or flashing if there is pressure in my head), numbness or tingling in feet and fingers, and tired all the time. I have just started taking 150 mg of topirimate before they with try anything else for migraines or headaches and then I have zolmitriptan nasal spray and pills for abortive medication and that is all I have been given for any pain even though ibuprofen and Tylenol do not work for my pain at all.

Anyone who can help give information, advice, really anything I thought them seeing something on the mri would mean I would finally get a dr to believe my symptoms I would get some answers and help with pain but I am still right back to the beginning.

[Kimberlyann1189]

I wouldn't say that your Chiari Malformation won't "ever change", it is possible, and mine did. I was at 5mm to 7mm within a year. I get bad neck tremors, mild hand tremors, and migraines very frequently (my neurologist put me on an oral dissolvable medication called Nurtec, and I do 1x monthly injections at home called Emgality). Tylenol doesn't really relieve my pain/migraines either. I found that most of the time, through research and from what doctors say, is that you are likely born with it but symptoms can come on anytime, mine was onset due to physical trauma. I get a lot of the symptoms you have too, minus the feet tingling. It's hard to find a neurologist who cares to really evaluate or help with this since there's not a whole lot of information out there. It took me 5 years and countless doctors to diagnose me finally, after being told "it's all in my head" by my primary physician, who also said "you just need to see a therapist". Turns out it's the Chiari, not my mental state (insert eye roll here). You don't necessarily need surgery until you get to a higher range of mm is what I was told, so definitely be glad it's at 4mm right now. I get botox now from my neurologist, she suggested it because of my muscle spasms in my cerebellum/neck area (tremors I say), and on the side of my face (muscle spasms), and this literally helped so much with the spasms/tremors, and I just had my second round. Seems like it triggers with high stress situations, overworking my mind or body. Doing light activity and cardio at the gym seemed to help, but don't lift an overbearing amount of weight, or high intensity (from what I was told). Hope this helps some.

[Stargazerlily95]

I don’t believe that it will never change either but getting a dr and insurance willing to do another mri has been hard enough because my primary dr was willing to order a csf flow mri but my insurance rejected it because I had one recently which is when I found out plus she wasn’t a specialist.

[selmaS]

Hi and welcome to the Chiari forum.

By Basic MRI what exactly do you mean? One of the cervical spine? Brain? If you have scoliosis, did they do thoracic and lumbar MRI's then to review that condition? Anyone ever mention tethered cord?

Most Drs feel this way, which to me indicates they were not fully educated on Chiari during med school. I do not know where you are located, but you may want to research Drs that have done extra interests in Chiari and ALL related conditions and are doing research on them.
Personally , I was told the same as you, had headaches in High school and even before, but they peaked in High school....I was sent to shrinks, and told I didn't have a brain tumor and I wasn't going to die....ALL that without any tests being done....WOW...but I will admit it was before MRI's were used to detect issues like they are now, it was also a very expense test at that time and only used for certain studies.

I had surgery after I researched and found not only did I have Chiari, but a partially retroflexed odontoid , along with Chiari, tethered cord and I had times when my CSF flow was stopped...only a CINE MRI can give that information....

Again, I will tell you to research Drs and find a true Chiari specialist.

[Stargazerlily95]

I had only a brain mri nothing for my spine only a neck X-ray because at the time the mri was just for headaches. I have been experiencing really bad back pain lately which I plan to talk with my primary dr about next week. I haven’t had anyone check my spine in years except X-rays to diagnosis it as a kid and a tethered cord has never been mentioned. Every time I have mentioned back pain in the past drs give me a muscle relaxer tell me to take ibuprofen use heat or ice and send me home.

I am in Iowa and the neurosurgeon I saw is supposed to be trained in Chiari and well known even written papers on it but I didn’t have a CINE CSF flow done they said they was able to tell my fluid was fine based off my images.

[selmaS]

The only Chiari Dr I am aware of in Iowa is Dr Arnold Menzes....and  would trust him...I actually had the  the privilege of meeting and speaking with him many years ago....and wish I was closer to his offices....I am in PA.....I still recall his analogy of how to describe Basilar invagination and how it affects those with it.....

Another question, have you ever tried CBD items? I found using CBD and Hemp products has helped me with different pain.

[Stargazerlily95]

Dr. Brian Dlouhy is the one I saw and he was supposedly trained by Dr Menzes.

I did try some CBD products when I lived in Colorado last year before I knew what I had and did find some relief with topicals but haven’t found anything really since being back in Iowa.

[selmaS]

You may want to try Hemp tea or CBD gummies along with your topicals....I use both as well...I started with the topicals and graduated to the use of the edibles . I am pleased with the results. We are all different so what works for one may not work for someone else.

[Stargazerlily95]

Thank you I will look into them.