So I have been seeing a neurosurgeon for two months and I have maxed out on Tegretol in that time frame and still having pain. My TN has also turned bilateral in this time frame. I have stopped eating anything that needs to be chewed if I eat anything at all. Of course this has made me lightheaded and given me headaches, BUT I haven't had any of my hour long attacks!!! So my neurosurgeon sent me to a neurologist to discuss adding a second medication to hopefully stop ALL of the daily pain I am having. We have decided to go ahead with the MVD, but I cannot until next year so we figured more medication would hold me over until the surgery.
Today I went to see this neurologist. The entire appointment I felt like I was fighting with him to get a word in...he would not let me talk. He would ask a question and as I was answering he would cut me off!!! He couldn't believe I was considering MVD surgery when I could just keep jumping from medication to medication.
First off I decided 100% to have the MVD surgery after having a 5 hour attack. I was alone in my bedroom crying and trying to handle the pain while my fiance was downstairs playing and putting my 2 year old and my 7 month old to bed. I cannot keep living this way with my babies so small! I am missing EVERYTHING because of this pain! I want my life back and to be free to spend my time with my babies!!
As this neurologist was finishing up taking my blood pressure I said "My first priority is to be able to eat again" and he laughed like I was joking around!! If he was listening to me earlier in the appointment he would have known I am not eating much at all! He then told me I should MOSTLY be concerned about my weight and needed to lose some! I know I need to loose weight as my TN was kicked into over drive after the birth of my daughter!!!!! I have lost some weight from not eating much, but I also don't think throwing my weight in my face is going to help me. I am already constantly stressed, full of anxiety over the pain and fear of my next big attack!
Why was he more concerned about my weight than than the pain I am having daily and my headaches (which I know is from not eating and stress) but he didn't believe that was why. I weigh 180 pounds...I know I am over weight, but come on!!!!
What a way to help my stress levels doc!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Any possibility of changing neuro. If anyone treats me this way I just keep repeating " asked and answered". Why ask if they don’t want to hear an answer??? He is failing you and you deserve better. Any loving mother wants to be able to tend her infants. I hope for resolution for you very soon.
Sara, you just confirmed my belief that ice picks are required for all TN-related doctor's visits. Just tell them up front, "You say something stupid I get to stab you in the face. Deal?" Maybe then they would understand. A-holes.
Thank you everyone! I am feeling much better about everything today. I am just moving on and moving forward!!! I am seeing the referral neurosurgeon on Tuesday. So I will be optimistic and looking forward to a great appointment!! Hope everyone is having a great pain free day :)
I guess that is pretty hostile but I hate seeing folks mistreated. Having a doc sit there casually and tell you that "Your pain isn't really that bad." when you are hurting can make you crazy.
Rick said:
Sara, you just confirmed my belief that ice picks are required for all TN-related doctor's visits. Just tell them up front, "You say something stupid I get to stab you in the face. Deal?" Maybe then they would understand. A-holes.
No, I wanted to ask the neurologist that question but didn’t get much out! I am assuming it should be done prior. I see a neurosurgeon on Tuesday I am sure it will be a much more positive experience and can get my question answered!
Hahaha! I love that! OR they have to put a dog shock collar on their jaw & get zapped!!
Rick said:
Sara, you just confirmed my belief that ice picks are required for all TN-related doctor's visits. Just tell them up front, "You say something stupid I get to stab you in the face. Deal?" Maybe then they would understand. A-holes.
I understand your pain, I was having the attaks like you, hours long with no control over them. I had tears reading your story. I felt the pain and rmembered those days. My heart goes out to you, you need help!! My advice is a new neurologist. You need someone who will listen. I have had the MVD done, jus recently on Nov. 26th. Get it done!! Because they found complications with me, an artery wrapped around the T3 nerve I may still be on low dose gabapatin but still better then what I was doing. If you anything like me yo must not be able to function on the high dose drugs your on. Again my heart goes to you, please find another doc. You have too!!
i know it nay be hard to speak up to some dr s but he was just rude plain and simple make a point of speaking your mind dear you have a right to be heard listened to and understood i hope you find relief soon Al