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?
@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
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?
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
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!
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.
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?
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
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Corticobasal syndrome do you have a medication for it?
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?
@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?
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
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!
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?
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.
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?
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1 ReactionHi @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