Hi, I'm Tin from VietNam. My mom had exprienced with TN for the past few years. We been going to the Doctors and get all kind of treatments but it never work. She just got admitted to the hospital, she had a surgery done, but i'm not quite sure what kind of surgery that she had, but they kept her there for about a week or so to keep an eye on her. Currently, she is Tegretol, gabapentin, lyrica and some other meds. Although, she been through alot, all kind of treatment, diagnosis and medications. But none of it had helping her at all. Right now, she is in her worse pain then ever. I can't stand seeing her like that, and I can't do this on my own. So, here i am seeking for help, comment, advice or any idea or recommendation would be greatly appreciate it.
I’m going to say a small prayer for her tonight. I’m not very religious but it sounds like your tried everything else so I’ll do what I can for you from Houston Texas
Hi Tin, I’m so sorry to hear of your helplessness and your Mom’s struggle with TN pain.
None of us are Doctors here so we can’t give medical advice,
Can you ask the doctor what kind of surgery she had?
There are many different kinds of medication and it sounds as though your Mom is on a few of these. Sometimes the medication needs to increase, and sometimes you need to change the medication. Do you go with her to her doctors appointments?
There are also creams or patches that can numb the area of the face, I use heat packs to help ease my pain, others use ice packs.
I hope the recent surgery your Mom had helps her! Please read as much as you can and feel free to am questions, I know it’s hard to see your mom suffer.
It’s do good of you to join thi group to help her.
I hope she finds relief soon.
(( hugs )) Mimi
Hi Tin,
Your trying to help your Mom is commendable. Its very difficult to watch any of our love ones is such terrible pain. We feel helpless not knowing what we can do for them. Your compassion and understanding is a big step in the right direction. Seeking out help is huge for you and Mom. There are alot of people here that understand how you feel and what Mom is going through. The medications are alot of drugs used for attempts to control the pain from TN. As Mimi said sometimes they have to be tweeked sometimes increase or decrease dosage. Sometimes trying other medications also. You need to find out what type of surgery Mom had and some here can help you understand what to expect from her recovery. Another words what is normal what can be an issue to talk to the doctor about. We are here as support and to share our stories most medical questions are directed to your doctor for explanation of what surgery she had done. There is alot of info on this website and can direct you to other sites too. Let us know what her surgery was and that can help abit. Right now you know what to do as a son, no explanation needed. You seem like a good son to her trying to help understand the disease itself. Its a tough disease and its very hard to watch someone we love it such horrific pain. Keep us posted. I will say a prayer for your Mom and you for strength. All my best Tin to you and Mom!
My Best
Joanne
Thanks for your comment. So difficult to show you clearly. My english not good. My mom had spend 26 years with TN. In Viet Nam, she also spend so many time by many method to get free. there aren’t method succeed. This is the link (http://www.ngoaithankinh.com.vn/en/training/update-knowlege/121-dau-day-than-kinh-so-v.html) about artical and the author is my mom’s doctor. Follow i know he’s very good and famous in my country. And my mom is only one can stop the paint. The doctor say he can’t find out the nerve no5 to Microvascular decompression and my mom must to accept to use medic with hight dosage. I fell to land in an embarrassing situation. Last week, she have to use 10 --> 12 lyrica 75mg pre day to confront with paint…so in your country is there any case like that’. Pls advies
If you are saying she had an MVD by a really good doctor....and he is saying it didn't work, and she needs to stay on high meds.... am I getting your correct? Many here have to stay on high meds for life. She is on some of the best meds.
But there are perhaps other best meds to try..... But if she has had this very long time -- maybe she tried many types?
It looks like doctor belongs to good brain group.
Can you ask him please - for something topical - some cream - called lidocaine or somthing that will numb the outside of her face - you rub it on and face goes numb -- better than having pain ---- sometimes it is all we can do.
Sometimes people have to wait a few months and get another MVD -- but rare.
Our disease is VERY rare -- hardly anybody knows how to fix it.
Does all this make sense? Do you have enough money to go to another country for another good doctor?
Hi Kc dancer
Thanks for your advies. My mom had 2 time MVD. When the doctor say they can’t find out the place decompression, i fell like a games and my mom is the ball ( open and close ). I’m in despair. She also try many kinds of medical. And very tired some time like drug. 26 year with TN, we use money for many method. Now, we haven’t enough time to save money to find another doctor in another country with high med. i will ask the doctor about cream which you say.
Wram regads