Chiari Online Support Group

Should I get a second opinion?


#1

I am confused and think I may need to get a second opinion. I had viral meningitis about 6months ago. Doctor did a mri and it came back normal. I have continued to have headaches in the lower back of my head and neck pain it became bearable after a couple of months then started getting bad again. I am having numbness in my feet and hands and balance problems, headaches worse when laying flat and shooting pain in head and back if I sneeze. So 6mo later doctor does another mri this time a borderline chiari 1 with minimal crowding is found. The doctor refers me to neurologist. The neurologist immediately dismisses the mri findings as not a problem because chiari was not reported on the previous mri. But also says that meningitis is not the problem either. Can chiari not show on one mri but then show up later? I am not improving and symptoms are getting worse. Should I get a second opinion? The neurologist has ordered another mri this time a cervical mri. And nerve tests for my arms and legs. I think he thinks the headache is migraine but I have had it continuously for 6months. I have had migraines in the past this is definitely different. He has given me a migraine medication to try but it doesn’t help at all. I am not sure if i should go to someone else or let him keep looking for other causes. He does not think the headaches and numbness and balance issues are related to each other. But they all started around the same time.


#2

Hi there! I wish I could offer answers, but I’m writing because we have a lot of common symptoms…
I had viral meningitis 8 years ago and an MRI at the time revealed a Chiari 1. They local hospital never told me much about it as they have little experience. In the years since, my arms have been going completely numb at night and it’s spreading to my legs now. That alone is causing a series of other issues. I’ve also had recurring excruciating headaches and ear issues.
Location, money and fear have kept me from seeking more medical help, but if you are in a position to figure out what’s going wrong, I say go for it. Please do your research and find the best care available to you.
In all of this, I’ve tried to take a antibiotics a few different times for my ear issues and found it amplifies everything. I met with a naturopath who said working towards an anti-inflammatory diet and stress free lifestyle was my best bet. That little bit of information has helped me the most.

Anyway, best of luck to you. I’d be very interested to hear how your story turns out.
Erika


#3

Neurologists have been the least helpful to me. The medical profession today is becoming more negative and selective about what they will do and show even less compassion.
Always get written reports of your MRIs and discs of the films; I cannot stress this enough. Back track and get copies of past ones. Read the written reports and highlight details that may be brief but have definite statements; like, “flow voids” because they will word many things as though they are insignificant then slip in a statement like “flow voids.”
Improper blood flow to the brain has a lasting impact. Chiari may not show with a great measure of the cerebellar tonsils protruding past the brain, but there can still be issues present stemming from Chiari. My cerebellar tonsils were 5 to 7mms past the skull, but the brain stem was being compromised as well.
Persistence is key in all things medical. Some neurosurgeons can and do insist that we do pain management first. Neurosurgeons get short tempered by all the numerous symptoms we have so choose symptoms that affect you most in your ability to function physically and that cause the most debilitation and pain.
Migraines unfortunately are one of those and that symptom can get you sent in the wrong direction. Loosing mobility, severe off balance, loosing strength in your limbs, your swallowing mechanism and gag reflex are weakening, you struggle with left, right coordination, and your penmanship has worsened; these name some of the symptoms other than migraine.
Cine MRIs are key and some neurologists deny that they exist. This will show any flow voids and level of constriction at the site of the Chiari Malformation and what level: I, II, III.
Persist because I struggled for 10 years and when diagnosed my family doctor played it down and I persisted through one specialist and the second neurosurgeon offered surgery right away; I was 51 years old.
You are not alone. Keep striving. Linda