I'll try to make a long story short. Basically I am going to my family practice doctor on Wednesday afternoon and need to find the words to make her understand that I am done chasing this monster, it is time to file for full time disability.
I have had TN for 6 years. In the last year or so it has morphed to be ATN as well. After almost losing my job due to cognitive problems in January of this year I chose to have MVD to attempt to get off of the meds. The MVD did help a portion of the type 1 pain, although not at all with the type II pain. In fact the pain has gotten worse. I then had a gamma knife procedure in July. Again only making it worse. Now I have pain and numbness. My neurosurgeon advised me two weeks ago that he can do nothing further. A second gamma knife is out of the question due to possible additional numbness around my eye. He referred me to a couple of good pain doctors. My neurologist has some health problems herself and so has reduced her hours to part time, making almost impossible to get in to see her. I have tried two other neuro's with no luck (couldn't stand one of them and the second said since I had taken the "gold standard" (Tegratol - I had terrible stomach problems) and it didn't work the only option I had was additional surgery. He also told me he thought "the sponge from the MVD has slipped" (impossible according to my surgeon). I have been waiting three weeks to hear from another neuro that had to have my records before they would even schedule an appointment, making it clear that they will call me, I am not to call them (makes me wonder if I even want to see this guy) Called another neuro she is booking out to January for appointments. I thank God every day that my family physician is so wonderful. She has worked with me through all of this and refuses to give up. The problem - she doesn't know enough about TN. She has been great about keeping my spirits up when I was ready to give up, but now I just want to sit back for a while and rest, let everything settle down. Let the previous surgeries have plenty of time to come to full results. My pain was in almost full control with meds prior to the surgery. I'm tired. Tired of trying so many different meds. I brought to her the idea of multiple meds at lower doses, which she went along with. But knowing that I have had cognitive problems, she is keeping the doses so low that I am not gaining control again. She is pushing me to go to Mayo, but I have full confidence in my neurosurgeon (who worked and trained with Dr Ken Casey years ago). He visited with me for a long time and told me of all the up and coming research, possible treatments coming in the future. I hold hope. I don't feel like traveling to Mayo will do any good. I just am tired of chasing this. I am tired of pain. I feel that the right medications could again bring control. I am now OK with knowing I may not be able to work. I have not been able to work full time since the MVD. My husband and I have reorganized our finances to be able to live on my lower income on disability. She has supported a part time disability but has held firm that she feels I need to work, that I am too young to "retire". I am 56. I need to find the words to convince her on Wednesday that I have a full life outside of work. I need her to support a full time disability and give me enough meds to bring this monster back in control for a while. I fully realize that meds may not be a long term solution. But after talking to my neurosurgeon I have hope for future treatments if the meds fail. I just want to be out of pain NOW.
Thanks in advance for sharing any experiences and ideas you may have.