Question about TN and heredity?

General TN Discussion
1

Hello,

Trying to skip around and test this site. Excuse me for mistakes.

Does Anyone know if TN can be hereditary?

2

To my knowledge, there is a small risk of heredity caused TN. If I remember correctly it is in the vicinity of approximately 5%.

3

Hi thank you so much,
my sis is very sick with possible TN. I have been dealing with TMJ, FIBRO, NERVE PAIN for a a long time. Extensive work on my mouth. I never know what I will deal with next. So thanks. I went to my dentist yesterday and he helped with pain. I have been with him for 30 yrs. He is wonderful and has always helped me after my car accident over in 1983.ty

4

I saw your question in your other post. It can be hereditary and like the other poster said it is rare. I am the fourth in my family and this is of much interest to me, for obvious reasons.
I started a group on Facebook a couple of months ago for members with Familial TN and I have over 50 members now. I have one lady who has more then 10 family members affected. In my family it has been passed down through the maternal side and seems to affect about half of us so far.
There is actually a lot of research being done right now into the genetic factors of TN.

Jane

5

Thanks for the info. I hope I do not come down with this, I am suffering from Fibro, failed back surgery, TMJ since 1983. My sis is so bad and I can’t help her. She is seeing a neurologist in August, until then she is on the 10th day of tegratol from PCP until she receives help from Neurologist.I hope you don’t mind me asking and keeping in touch with you from time to time. I only know my sis’s painand hope you will find help that you need.
Thanks so much.

6

I also have other issues. I was diagnosed with Myofacial Pain Syndrome and I possibly have Fibro. Many people with TN also have TMJ problems you know, although that in itself is much more common then TN. One thing that I have noticed about people that have TN in their family is that they are more likely to have multiple nerve/pain disorders/diseases. We are a complicated bunch. I truly hope that you are not one of the unfortunate ones!

7

So far my sister is the only one with TN. She too has TMJ and it is common.I will need to go back to my TMJ Doc in hopes he can do more adjusting. Thanks JJ.

8

My mother had MS so that is the first thing they tested me for. I wonder if I don’t have a predisposition for TN because of it.

9

Sim,
This TN is all so new to me. I find it helpful to ask questions to those who have TN. I hope you are seeing a neurologist. Best of luck, let me know what you find out… God Bless.

10

My cousin & I both have had TN. My mother & her mother were sisters. We are female. My cousin’s TN manifested early in her 30’s but mine, not until mid 60’s. I had an MVD but she is still dealing with what I believe to be what has evolved into TN2.

11

Thanks for your reply Dixie. I can only hope and pray I do not ever suffer with this. My sis Susan is taking tegratol and is due to up the dosage on Tuesday of this coming week. We do not know what to expect. She has not seen a neurosurgeon yet but her PCP scripted her tegratol until she sees the Doctor.
I sure hope you will be feeling better soon, and your cousin as well. Please let me know. Thanks again.

12

I was fortunate to have a successful MVD nearly 4 years ago at age 68. I am pain free and off all meds. Dr.Ben Carson did the surgery @ John’s Hopkins, Baltimore.
I pray your sister will find relief from the TN monster. God bless you for all you do to help her.

13

Hello again Dixie. Hope this finds you well.

My sis is showing some improvement with tegratol. She still has not seen a n-surgeon, appointment is the 18th of Aug. She also had an MRI and it didn’t confirm TN., or anything else thank goodness. My question for you , if you don’t mind is did you have an MRI and it showed TN? Or did it just rule out things like tumor, etc??
Thank you Dixie

14

Hi Siminative,

My mom also has MS and I do not. TN and other neurological disorders run in my family. I also think there is a relation. Something structural or in our genes that causes a predisposition to this monster. There is actually quite a bit of research being done into this area right now.

Jane

15

Hi!
My MRI did show an artery compressing the nerve. As you do research, I’m sure you will read that an MRI does NOT always show the compressing culprit. As I understand, the patient’s symptoms & pain description can be more definitive in reaching a diagnosis than the MRI. The MRI may show nothing & then when the neurosurgeon gets in, he will then find the compression.
I believe she is having her MRI today, right? PLEASE let me know the findings.
I feel the most important planning she can do is to find a surgeon & institution that treats TN frequently, such as Dr.Lim @ John’s Hopkins in Baltimore, Mass General in Boston, Dr. Jeff Brown in New York, Dr. Kenneth Casey, Michigan. If she wants the very best outcome, she MUST go somewhere where the entire team does lots of procedures. DO NOT go somewhere that does one or two procedures a year. THE PROCEDURE WILL NOT BE SUCCESSFUL!!
Please keep in touch. May God be with you.
Dixie

16

Hi Dixie,

thanks, yes she was disappointed that he would not schedule surgery. I tried to tell her they will do meds. first but she only hears what she wants. It gets frustrating for her and me too. I will know more when she feels like talking to me about it. MRI as I said did not show a thing, he wants he to see a NS in the town that she lives in and try different meds. I knew that and I told her that but… she is feeling down and just wants it to be gone. I understand. I too am dealing with my own issues.

Hope this fines you well. If you don’t mind, I will keep in touch, thanks
Deborah