Hi All! I wanted to update you all but also ask for some opinions and advice. i Had an appt at UCLA with a NL on 9/4. It did not go as planned at all. I feel like every time i see a NL they are very quick to diagnose me with something else or direct my symptoms to something other than CM. The NL at UCLA took a look at my MRI and said that my chiari is very mild. She said that none of my symptoms should be because of my chiari. She then went on and diagnosed me with Vertigo in the left ear and migranes due to sleep deprivation. i tried to explain to her that the reason as to why i was not getting any sleep was because of the pain i am in.I then saw another NL on 9/6 that just perscribed me with more medication and said that if it does not work he is going to recommend i get botox because he swears that my symptoms are not because of chiari. i have had no luck finding a NS that specializes in CM. i am currently on Topamax, Neurontin and Amitryltaline. All of these medications are causing unecessary and unwanted side effects. They do not help with my pain at all. I am on edge on wether i should even see another doctor because every one that i have seen has ruled out CM. i understand that my chiari might be mild but i also know that in some cases size does not matter. They are diagnosing me with different things and i feel like i am just wasting time and money. i feel like no one is listening and i am at the verge of giving up. Any advice on what i should do?
The size of herniation has no bearing on symptoms, I have a 5mm herniation and had/have every symptom possible. My NS didn’t think surgery would fix all of them but it did for the most part. The only NL I went to see told me I was having a psychotic break and imagining my symptoms. (I happened to be having a very good day symptom wise when I saw him) I don’t trust NLs especially since they treat me like I’m crazy. You just have to stand your ground. I had doctors telling me it was psychological and I said ‘I’ve lived in this body my whole life and I know something is wrong, scan my head and if nothing is wrong up there you can go ahead and give me all the crazy drugs you want.’… that kept them quiet.
Alejandra, what a disappointment. NLs, I’m sure help a lot of people, but not if it’s Chiari related! Even if they did understand Chiari and the conditions that come along with it they would still only be able to write a prescription. Know you are not alone with your experience- so many of us have left a NLs office either super angry or in tears. You really need to see a Chiari specialized NS. You need to be evaluated for the severity of the Chiari, for EDS, sleep apnea, dysautonomia, and tethered cord. Oh- and vitamin deficiencies especially D and the Bs.
There is a member recommended doctors list on this forum. If you like, Go to the doctors tab at the top of the page. You still need to be mindful that within that list there few doctors that actually screen for all of these other conditions.
I’m sorry you we’re let down, and that wasn’t your fault. Keep moving forward.