//
archives

Uncategorized

This category contains 19 posts

Please Help Our TNKid & Our Doc Support Orange County Ronald McDonald House

Each year, Orange County Ronald McDonald House (OCRMH) holds a Walk for Kids to help support the families of seriously ill children who come to OCRMH  in the toughest times of life.  A very large number of our TNKids and their families have cycled through OCRMH when going to see Dr. Mark Linskey at University … Continue reading

Surgery From the Kid’s Point of View

KatieRose has had two Microvascular Decompression (brain) surgeries, one just a few days after her twelfth birthday, and a second two months after her 13th birthday  (additional compressions not found in by first neurosurgeon).  For a recent writing assignment, she had to write an essay about something that has happened to her, and chose to … Continue reading

The Joy of Dental Work

I am embarrassed to say how long we went with our daughter NOT going to the dentist once TN set in.  She had been to the dentist only 3 weeks prior to her first attack, which was one of the things that helped us rule out dental problems from nearly Day 1.  Clear, healthy x-rays … Continue reading

Education with Trigeminal Neuralgia: College

We LOVE the Young Patient’s Committee of the Facial Pain Association.  One of the reasons we are called ‘Youngest of the Young Patients’ is in homage to them.  They work hard to serve the younger TN patients, which for them are patients under 40.  They have good representation on their board of upper high school … Continue reading

Pediatric TN Issues: Four Key Points

As we have mentioned, this site is administered by four TN Mamas:  Tracy, Meg, Stacie & Ang.  We all came together because we all have kids with this awful condition.  Different pairs of us met just from having kids with TN, but the four of us really came together and bonded and found this purpose … Continue reading

Pediatric TN Challenges: “Doesn’t Happen In Kids.”

This makes many of us TN parents absolutely insane.  Especially those of us whose children were finally diagnosed correctly and then treated (at least somewhat) successfully.  We know the damage that can be done to our children and families when we keep running up against incorrect diagnoses. All the literature says that Trigeminal Neuralgia occurs … Continue reading

Pediatric TN Challenges: Doctors

I hate to put this challenge so close to the top of our list, but it has to be done.  I know there are some absolutely wonderful doctors out there – with some effort, persistance, and TN Mama networking, we found one we will always be thankful for. Due to the rarity of Trigeminal Neuralgia, … Continue reading

Pediatric TN Challenges: Communication

Having Trigeminal Neuralgia is painful and overwhelming and hard beyond the English language’s ability to describe it.  Someone with TN, in my experience, often does not even try to really communicate the depth of the battle that it is, so I can certainly not explain it sufficiently. If you child has Trigeminal Neuralgia, they are … Continue reading

Must-Listen 29 minute Podcast on TN. Seriously. Just do it.

This evening I listened to a 26 minute interview done by British Medical Journal’s Clinical Evidence, with Joanna Zakrzewska and Dr. Mark Linskey.  If you are trying to understand Trigeminal Neuralgia for yourself, your child, a patient, or someone you care about, I really believe this is a must listen.  This interview distills an amazing … Continue reading

Do I Have the Right MRI? What If My MRI Is “Clear”?

Watch this, then we will talk: http://www.facepain.us/linskey_should%20trigeminal%20neuralgia%20patients%20get%20neuroimaging.html You will all be told your child is too young, the MRI is clear, there is just no explanation for their TN, they will have to be on mind numbing medications maybe for the rest of their lives…… But did you hear what this video said? 100%. One … Continue reading