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← Return to #MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull
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Hello @dink75,
Welcome to Connect, and thank you for introducing yourself to the Brain & Nervous system group.
I'd like you to meet a few members who are familiar with Chiari Malformation. @johnnie @anorwalk @trouse @sweetthing111059 @spoiledheather @ginabee @staceybeyer @ashleybryant @david33 @maidmarion @vbrunette @mkell13 @scotthinojosa @ajgray @donnak69 @smann68 @cynaburst @cnoethe, do you have any insight that might help @dink75?
Deana, what explanation or suggestions has your care team offered, for the complications you mention?
Replies to "Hello @dink75, Welcome to Connect, and thank you for introducing yourself to the Brain & Nervous..."
Hi @dink75,
While we wait for for other members to join in, I was wondering if your healthcare team had talked about reducing pressure by surgery? Here is some information from Mayo Clinic about the various treatment paths: http://mayocl.in/2n6gGbR
Deana @dink75,
I encourage you to join these active conversations about Chiari Malformation on Connect and connect with others:
- Chiari malformation type 1, http://mayocl.in/2emYs3Z
- Chiari Malformation type 1, Addison's Disease, Steroid induced diabetes http://mayocl.in/2nfPFTS
Thank you!
@kanaazpereira thank you for responding to my question. And the short answer is no I have not spoken to my neurosurgeon about any further problems that I have since developed. I was 34 before my condition was diagnosed and corrected. Everything moved so fast at that time. Of course many symptoms have since subsided. But like I mentioned the severe headaches, severe nausea, and vomiting that is associated has since developed. Not daily, but they are occurring more that 2 or 3 times a month. I honestly send most of time just laying in bed or the couch because of my Chiari symptoms and lupus. So I needed guidance on what to do next? Also is Vanderbilt the best place to go since I do not feel comfortable with the neurosurgeon I had at UT here in Knoxville? Again sorry for the length of my response..<br>
Hi Deana,
You may wish to read Nikki's story here: http://mayocl.in/2nYf4yB
It is important to do your research to find the care that is best for you, and where you can be a respected partner in your care. Vanderbilt ranks high in several specialty areas. However, it ranks #43 for Neurology & Neurosurgery with a score of 60.8/100 http://bit.ly/2nMlFgo
If you would like to find out more about options at Mayo Clinic, please contact us at the location of your choice http://mayocl.in/1mtmR63
We have sent your questions to the doctors presenting.
Connect
My next step is going to Vanderbilt to meet with the neuro team there. My original 3 were done here at UT. I feel that after 3 brain surgeries I should not be suffering as I do with such severe inner cranial pressure. It's almost unbearable. I just wanted opinions from experts if this is "normal". Not that any of this is.