Chiari Malformation type 1

Welcome to Connect, @denise32,

I moved your message to this active discussion about Chiari Malformation so that you can meet others who've shared their experiences with this condition, and you can also read through some of the posts by members discussing similar questions and concerns about surgery.
Here's some information from Mayo Clinic as well:
https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010

Please meet @lizwhite80 @mkell13 @vbrunette @johnnie @scotthinojosa @maidmarion @david33 @nanniesue4 @ziva @luckygirl @debim who have recently talked about living with Chiari malformation and surgery options.

I thought you might also like to read these stories about patients finding relief from pain caused by this condition
– Relief for pain caused by Chiari type I malformation https://sharing.mayoclinic.org/2012/12/24/relief-for-pain-caused-by-chiari-type-i-malformation/
– Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others https://sharing.mayoclinic.org/2016/10/17/diagnosis-and-treatment-of-chiari-malformation-spurs-nikki-prins-to-reach-out-to-others/

While we wait for others to join the conversation, can you tell us a bit more about yourself, @denise32? What symptoms do you experience and how do you manage them? Does the neurologist that you consulted specialize in chiari malformation?

My husband has that, and surgery isn't bad, and should help you. My husband had the shunt replaced after the first one got infected. He doing wonderful not only moderate headaches now.

They won't do surgery if it's 5mm it has to be 7mm. I went through this, and I'm sorry you have to wait, to see if it drops further. Doctors are wierd this way.

Hi evryone,
My name is Laura and I was wondering if anyone knew what a chronic pressure headache is and won't go away. (Feels like a rock constantly sitting on right side behind right ear). I had this feeling going on 5 years and I'm tired of taking meds that don't help.

I have a 5mm herniation and I had a decompression 4 months after being diagnosed. I was showing signs of permanent nerve damage. If not for that, the headaches, vertigo, balance issues and occasional passing out wasnt enough to have surgery.

I'm sorry I missed understood, is this do to your cerabellum? I want to make sure I can give you some opinions without giving you the wrong ones.

Has anyone been seen for Chiari and if so, any suggestions on a good Neurologist with knowledge on this condition?
Thank you!

Hi Jill, Welcome to Connect. I moved your message to this existing discussion group in the Brain & Nervous System. Here you will meet others like @david33 @lizwhite80 @mkell13 @vbrunette @johnnie @scotthinojosa @maidmarion @david33 @nanniesue4 @ziva @luckygirl @debim who have recently talked about living with Chiari malformation. Hopefully they can share their neurologist recommendations.

Jill, I encourage you to read through the discussion thread to learn more about the experiences of others and to ask questions. While we wait for others to chime in, can you tell us a bit more about yourself? Are you currently seeing a neurologist?

Thank you so much! No, my family practitioner has been prescribing my meds. I live in a rural area in Northern Wisconsin and the two Neurologists I have seen have been of no help.

Jill, have you considered seeking a second opinion at Mayo Clinic? Here's more information about the Chiari malformation care at Mayo https://www.mayoclinic.org/diseases-conditions/chiari-malformation/care-at-mayo-clinic/mac-20354017