Have not forgotten
Feeling very well but I still read the updates on my D.S. friends still battling T.N./A.T.N. and that demon called P.H.N. It is inspiring to read about the courage you have when you are offering support to others while still in pain.
To those spouses who are supporting a T.N. ravaged husband/wife, hang in there. Keep hammering those neurosurgeons for information and look for new information on the web. I believe that my relief came only four short months after finding out it was T.N. because I asked for a copy of my chart and got a copy of my MRI/MRA and carried all of it to a neurosurgeon begging for help. MVD can't cure all types of T.N. but only a neuro surgeon can tell you. There are a few neurologists who lean toward referral only after a regimen of several medications, but you have to keep telling them if you choose not to continue trying these meds with or without relief.
Looking forward to hearing more success stories. May the Lord's healing hand be upon you all.
Sincerely, MVDsuccess
To those spouses who are supporting a T.N. ravaged husband/wife, hang in there. Keep hammering those neurosurgeons for information and look for new information on the web. I believe that my relief came only four short months after finding out it was T.N. because I asked for a copy of my chart and got a copy of my MRI/MRA and carried all of it to a neurosurgeon begging for help. MVD can't cure all types of T.N. but only a neuro surgeon can tell you. There are a few neurologists who lean toward referral only after a regimen of several medications, but you have to keep telling them if you choose not to continue trying these meds with or without relief.
Looking forward to hearing more success stories. May the Lord's healing hand be upon you all.
Sincerely, MVDsuccess
Replies
My husband would love a support group for spouses dealing with those who have TN because he is really struggling with me and the effects of my medications (making me too sleepy to carry out chores & we have two little girls) and he often feels like he is both husband and wife. I have had TN during our 14 year marriage & I was only diagnosed a few years ago after needless other facial surgeries which made me worse. He really struggles with me & in turn I struggle with his attitude. He hasn\'t had a job with health insurance in many years so I am also struggling because I don\'t have the right medical help. It is hard, very hard. But thank you for staying here. It is very nice to have you here are a cheerleader and an encouragement to see our future selves :o)
Dear hollidayddd:
The closest support group I could find was http://www.dailystrength.org/c/Caregivers/support-group
I also put in a request to the Administrator for a group to support spouses of TN sufferers. I hope they start one.
I am glad that my posts are encouraging. Thank you for saying so.
I feel helpless but reaching out to my fellow TN patients and their spouses.
hollidayddd,
I got this reply from customer service here on the DS website regarding support groups for spouses of TN patients. Maybe you will want to do this....
Thanks for writing and suggesting a new support group for DailyStrength. I\'ve
recorded it as a future possible support group.
Additionally, please know that members can now create their own Member
Groups. You can explore the existing member groups (or create your own) by
clicking on the following link:
www.dailystrength.com/groups
Best Wishes,
DailyStrength Support
Having TN alone is hard enough, but living in an environment without support makes it unspeakably worse. If your husband can take the time to read the many stories of people who suffer from TN on this already established support group at DS, perhaps it will help him see how very real and difficult it is to go about daily tasks and even pleasurable undertakings. You especially need our prayers and thoughts. Let me know if it would help for my husband to talk to yours about what it has been like for him to help me. Also, call your local hospital and tell them you have no health insurance, and ask if they would consider your case for no cost help. The hospital as well as the medical center where I live have such programs. Perhaps you can get an operation to help alleviate your pain, or at the very least, a neurologist can help you with pain relief through proper medication and monitoring. You need support. If you do not feel well enough to seek help, ask a friend who understands your needs to contact your local grief support association near where you live. Such non-profit groups can help you find resources you need for yourself. My heart goes out to you - you are a brave woman to handle all of this alone, and you are doing it! Wow - I really am impressed. Many hugs to you, ~Laurel (AKA Not Afraid)