I am 28 years old, I had headaches for more than 13 years, over those years I was diagnosed with migraine I lived with that for 10 years until I got tired of taking medication almost every day and noticing my “migraines“ didn’t go away, so long story short I started making notes every single day about my headache and I noticed that I do have them every day from dull to severe. Not only that I did have other symptoms sometimes like nausea, weakness, dizziness, tingling in arms and legs, neck pain, memory troubles, all followed by headaches. So I decided to try one more time and see my physician, she was awesome! She said we have to have an MRI on your brain to make sure there is nothing else besides headaches. I got my MRI done. I was diagnosed with Chiari 1 malformation. I was scared at first , I read so much info online, few weeks later I made an appointment to see neurosurgeon. I was very disappointing I don’t know what to do anymore, he said maybe you just have a headaches and those symptoms, well not all are associated with Chiari Malformation, he suggested chiropractor or acupuncture, and also said that he can do the surgery but its not going to help me. And also said I can get second opinion if I want. Yes my herniated cerebellum is not very downward the spine canal but is that enough information, do I need to get my neck and spine MRI done? I don’t know what to do, I feel sad that once again I just keep bumping into the wall. And also all those MRI and doctor visitations coming out of my pocket because I don’t have an insurance. Anybody has any ideas or suggestions please , please let me know I can't take this anymore! Thank you all for your help.
Definitely seek a second opinion with a doctor who is more familiar with chiari. Acupuncture may help control your pain and won't hurt you but avoid the chiropractor. It is not safe for a chiari patient to see a chiro. That you were advised to do so makes me think your NS doesn't treat many chiari patients and honestly I wouldn't want a doctor who didn't believe he could help you operating on you!
Hello Purple Girl,
I am so sorry that you are once again bumping into the wall. I know this is very frustrating, but unfortunately, not all that uncommon with Chiari. As frustrating as it is, please don't stop your search for help.
If I were you, I would search for a neurosurgeon near you (or at least close enough you don't mind the travel) and get a second opinion. Others may disagree, but it has been my experience with my personal research that size of the herniation isn't always a factor in the presenting of symptoms.
The silver lining (although you may not see it now) is that the doctor you saw told you that while they could do surgery, it won't help you. This is good because it means you don't want him/her operating on you! Whereas they could have just told you they could do surgery and leave it up to you.
But I digress from your question/concern. I'm fairly new to this group, but from going through other posts (as well as my own personal experience), you don't always hit a homerun with your first doctor. For me, early on I just took what the doctor said as my only option. But as I got older, I began to realize that there is more than 1 doctor doing the same type of medicine for a reason. And just because one says one thing doesn't mean you have to accept it.
The best thing to take with you is, you are not alone. I myself have gone through similar situation as you are going through now. And I am confident in saying that you and I are not the only 2. Yes, Merriam-Webster may describe our journey as "frustrating", but I haven't found a true definition of how this makes us feel.
Please keep searching for the answer(s) that fit you!
Cheers
Hi...
I must say that I agree with everyone who responded to you...personally, I was told to not go to a chiropractor....and that is too bad...as I live right near the Chiropractic College!
Just my 2 cents..as other mentioned..see a neurosurgeon....I agree...that , of course doesn't mean you have to have surgery..but..in my own experience, the NS was the only one who really seemed to have a full grasp on Chiari Malformation...though, I must say, my primary at the time..(I moved out of state shortly after my surgery)..did his homework and self taught himself about CM..he told me he also spoke at length to the Chief NS in the city hospital...in fact, it was my primary that urged me to go see that NS.
Please keep us updated on how you are making out.
Thank you all for replying to my post, it really helps to hear, from the people that been thru this or going true somehow. Because I was already thinking maybe I am exaggerating. So thanks to you all for you support, opinions and suggestions I will keep you updated on my searches.