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#MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull

Posted by @Margaret_Marie in Brain & Nervous System, Fri, Mar 10 at 8:41am CDT

Dr. Nicholas Wetjen, neurosurgeon, and Dr. Mai-Lan Ho, neuroradiologist, talk about congenital anomalies of the brain and skull.

Learn more about:

  • Causes
  • Risk factors
  • Treatment

Drs. Wetjen and Ho answer questions live during the event. 

tonyc55

Posted by @tonyc55, Fri, Mar 10 at 10:07pm CDT

Corticobasal syndrome do you have a medication for it?

colleenyoung

Posted by @colleenyoung, Mon, Mar 13 at 9:11pm CDT

@tonyc55, you asked "Corticobasal syndrome do you have a medication for it?"

According to the National Organization for Rare Disorders: "There is no specific treatment that slows down the progression of corticobasal degeneration. Treatment is directed toward the specific symptoms that are apparent in each individual, although most cases prove resistant to such therapy." You can read more on their website here: https://rarediseases.org/rare-diseases/corticobasal-degeneration/

You may also be interested in reading about this clinical study at Mayo Clinic
- Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) http://mayocl.in/2mlpuY0

Tony, do you have corticobasal degeneration?

tonij8281

Posted by @tonij8281, Mon, Mar 13 at 12:38am CDT

I've had trigeminal neuralgia for 15 yrs.Does any one the intense pain it causes in the face? Medication is a must to keep the electric shock like pain away. Does any one know what I experience?

colleenyoung

Posted by @colleenyoung, Mon, Mar 13 at 9:15pm CDT

Welcome to Connect, @tonij8281.
You are not alone. We have several members on Connect talking about trigeminal neuralgia. I invite you to join the other members in the Trigeminal Neuralgia discussion group here: http://mayocl.in/2bVAIAl

dink75

Posted by @dink75, 6 days ago

I have Chiari Malformation and had 3 brain surgeries where the patch was used. The patch leaked twice. I did not suffer from hydrocephalus so no shunt was needed. I am now having severe inner cranial pressure and drainage of spinal fluid from my nose at times. Will a shunt help resolve this? I now have lupus that manifested after my surgeries so I am dealing with that as well as the chiari. Thank you for listening!

Posted by @Margaret_Marie, 4 hours ago

Hi @dink75. Dr. Wetjen and Dr. Ho did respond to your question during today's Facebook Live. The video is available to view up above.

kanaazpereira

Posted by @kanaazpereira, 6 days ago

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?

dink75

Posted by @dink75, 4 days ago

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.

kanaazpereira

Posted by @kanaazpereira, 4 days ago

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

colleenyoung

Posted by @colleenyoung, 4 days ago

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

vbrunette

Posted by @vbrunette, 4 days ago

Thank you!

dink75

Posted by @dink75, 4 days ago

@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..

colleenyoung

Posted by @colleenyoung, 4 days ago

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.

upartist

Posted by @upartist, 4 days ago

I am interested in congenital overgrowth of the right mandible possibly causing Eustachian tube obstruction, leading to significant chronic ear infections. I am currently treated with continual ear tubes on that side, but the infections are getting frequent again and less responsive to antibiotics. These infections make me quite sick. I am a 60 year old female with a long history of repeated ruptures of the right ear drum. Should this be further evaluated, and are there other treatment options out there?

colleenyoung

Posted by @colleenyoung, 4 days ago

Great question @upartist. Thank you.

upartist

Posted by @upartist, 3 days ago

Good morning Colleen (connect director). I apologize, but I was just hoping to have bony growth question maybe addressed during the Upcoming Friday lecture by the Mayo team. I am just putting my feelers out there for possible new treatment options for my ear, and I am no spring chicken. I do have a good Mayo Doc right now, but I have never put my ear on the radar with him. This current infection has been rolling since before Christmas, so I am considering asking him to look at it now. It's a very big trip for me to take, so not a quick decision. You got my attention though, with the links, so thank you! I appreciate it.

colleenyoung

Posted by @colleenyoung, 3 days ago

No apologies necessary. Your questions have been sent to Drs Wetjen and Ho. I, too, hope the bony growth question will be addressed during Friday's presentation. Thank you for sending it in advance.

colleenyoung

Posted by @colleenyoung, 7 hours ago

Hi all,
The Video Q&A with Dr. Nicholas Wetjenand Dr. Mai-Lan Ho will be starting in 5 minutes. The video window will appear at the top of this page.

dink75

Posted by @dink75, 5 hours ago

@colleenyoung

I wanted to thank you for always responding to my questions. You have been extremely helpful and treated me like a person during this scary, unknown time. I am over the moon right now. 1st meeting you and all the others affiliated. Now a support group! If you have any ideas, literature, or anything you think I may need please pass the work on
Sincerely Thankful,

Deana
(Knoxville, TN)

dink75

Posted by @dink75, 5 hours ago

I thoroughly enjoyed Nikki's story and so much of it mirrored mine. Thank you recommending it.

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