I am 20 years old now. I know that may not be a kid, but I have had TN since I was 13. I wished more than anything that while I was having such a hard time that I had someone to talk to. I have been able to talk to many young kids with TN. Ages:9, 13, 16 and more! I DO NOT want your kids to feel alone. Nor do I want the parents to feel alone. My mom is willing to talk to parents as well!
I have TN bilaterally and ALL over my face/throat. I have had 4MVD’s and nerves cut on both sides of my face. I just want you to know that there is support and people to talk to. I have been up and down the road with alternative treatments, meds and surguies I will not tell you or your child what to do, but I can give suggestions. All I want to do is help. I have felt very alone at times, I don’t want you to feel that way!!
Thank you Ally for your comments, I am so sorry that you have had to deal with the terrible pain for so long. I am very lucky that my daughter did not have to suffer long. We found out that it was TN in about 2 weeks and then after the meds failed we went to Dr. Carson for the MVD. She woke up pain free and continues to be that way today. The hope we have is to also help other familes and to get the word out that TN does occur in children, not just adults. Thank you for joining this group I hope other young girls can get help and advice from you.
Thank you-Kim
Kimberly- I am very happy to hear that you daughter is now pain free! I hope that she continues to be able live her life pain free! : ) YAY!
Wow, Allly…you have been through the ringer with your TN!!! I am sorry you have been through so much pain but it is very nice of you to offer your experiences for the help of others. I got TN when I was 19 and have had it for almost 4 years to the day now, and I thought I was young when I first got it!!! I have had 1 MVD, ! Gmma Knife, And 1 Radiofrequency Rhizotomy. The only thing that offered any help, and it was very little, was the Rhizotomy, which I just had last September; however, the effects of the surgery have worn off and I am slowly getting more and more pain back. I take a lot of medication each day and rather thwn continually increasing the pain meds I would like to increase the anti-seizure meds, like tegretol but I am on the most of tegretol my body can handle so I was just wondering if you would be willing to tell me what kind of meds you are on and let me know how they work for you.
My neirosurgeon said that if he cut my nerve I would be cured but you had your nerves cut and you are still in pain? I’m sooo sorry…I have a very extreme case according to my neurosurgeon, like the ammount of pain I experience is very extreme and I have a lot of pain and many periods where I have pains one after another that can last for hours. I have sharp lightening like pains, what about you?
If I can help you in anyway please let me know…
Hope you had a pain-free day
Michaela,
I am the other Ali’s mom. She was 12 when she started showing signs of TN. I would continue to search for options to help. I am not saying anything bad about your surgeon but since TN is so rare you might want to get second or third opions from some different docs. We took our daughter far away from our home town in Texas to Baltimore MD to see Dr. Ben Carson who is a wonderful man and doctor. He also helped Lily who was three and is now 4. Lily has bi-lateral TN and she is going back to see Dr. Carson again because he is so GREAT!
My daughter took two different anti-seizure drugs to try and help the pain. You may ask you neurologist if they can do that for you. She took Neurotin and Trileptal along with some other pain meds. This did not work for my daughter so she had the MVD.
Please let me know if you need anything else…let us know what you decide to do.
Hugs,
Kim
Michaela said:
Wow, Allly…you have been through the ringer with your TN!!! I am sorry you have been through so much pain but it is very nice of you to offer your experiences for the help of others. I got TN when I was 19 and have had it for almost 4 years to the day now, and I thought I was young when I first got it!!! I have had 1 MVD, ! Gmma Knife, And 1 Radiofrequency Rhizotomy. The only thing that offered any help, and it was very little, was the Rhizotomy, which I just had last September; however, the effects of the surgery have worn off and I am slowly getting more and more pain back. I take a lot of medication each day and rather thwn continually increasing the pain meds I would like to increase the anti-seizure meds, like tegretol but I am on the most of tegretol my body can handle so I was just wondering if you would be willing to tell me what kind of meds you are on and let me know how they work for you.
My neirosurgeon said that if he cut my nerve I would be cured but you had your nerves cut and you are still in pain? I’m sooo sorry…I have a very extreme case according to my neurosurgeon, like the ammount of pain I experience is very extreme and I have a lot of pain and many periods where I have pains one after another that can last for hours. I have sharp lightening like pains, what about you?
If I can help you in anyway please let me know…
Hope you had a pain-free day