I have a good doctor these hapen
Helen, so sorry to hear this. Ignorance and arrogance are a horrible combination.I honestly think some MDs are intimidated by us or the TN. If they can’t fix it then we must be crazy. Don’t doubt yourself! Stay strong and keep searching!!
Thanks Kathy x
Helen find another Doctor Hope you find someone with a knowledge of TN Ask before you make Att.You would be surprised at how many doctors don't keep up with learning new things. It is easier for them to say it is all in your head.
Helen, so sorry this has happened to you. The first neurologist I went to wrote me off as well. What he prescribed for my “plethora” of symptoms was reassurance and cymbalta. As soon as I feel up to the task I am going to send him my surgical report and suggest that if someone comes in with a lot of symptoms that don’t fit his limited knowledge, that he should at least take the time to find someone who does! Thankfully I have a great GP who didn’t believe him either, and she did find me a great neurologist in Vancouver. So please stick with the plan to find someone better. You deserve the best care, we all do. Don’t let that DUD get to you.
Keep Heart
Bellalarke
Time for new doctor I went through 3 before I found a decent one. Good luck second opinion are always good
Wow. I've heard stories like this on hear and have felt so lucky to have the neurologist and GP that I have. I felt like they accurately and quickly diagnosed me after rescuing me from a dental nightmare. Once diagnosed and reading up on this crazy thing called Trigeminal Neuralgia. I realized my symptoms were classic. Why or why hadn't I seen my doctor years before.
So, a few weeks ago I saw a neurosurgeon referred by my neurologist. He wanted to see if she had any help to offer me as I'm maxed out on the meds and still hurting. She (the neurosurgeon) immediately said that the only thing she could tell me for sure is that I did NOT have trigeminal neuralgia. She took three phone calls in the exam room and even chatted casually with the doc on the other end. She scrolled through my MRI's quickly while looking over her shoulder at them. Said there was no compression and she didn't see a reason for my pain and that I must have MS.She said I just had to keep taking the meds even though they were ruining my life. Her words not mine. I wondered if she was insinuating that I wanted my life ruined? She said "TN never affects all three branches of the trigeminal nerve and never, ever on both sides". Never mind that it was only in my left jaw for the first 6,7 or 8 years, in and out of remissions. Shorter remissions each time recurring with more intense pain each time. Shocks in my left forehead and jaw started in December and January this year. It only got worse from there.
I'm getting over that appointment. I just have to move on. I'm on 3 meds and at this time I feel like it mostly under control so I'm okay for now. Two weeks ago switching from oxcarbazapine to the slow release version has been a really good change for me.
I even stayed off this site after that appointment feeling like a fraud. But Helen, we are not that.
We fight so hard to balance the pain while trying to live happily and work hard. Hang in there and just find another doctor who answer your questions and manage your pain. Take care and hugs.
Wow Hope. That's unbelievable. Its devastating to know something is inoperable and we just have to find a way to manage it. Im struggling to get my head around this. Hope you have a good pain free day x
Find thee another neurosurgeon...one that specializes in TN! Check the links on this website for "finding a doctor". And yes...TN CAN INDEED affect both sides!
I have found that most neuro's don't know how to treat TN due to a lack of experience with TN and often just go with the text book protocol. Try to find one that has dealt with it before! I still don't have a neuro I'm completely satisfied with after 12 years. So frustrating to deal with...hang in there!
Don’t go back to him. Find another Dr.
Knottytree said:
Helen,
I am so sorry that you are dealing with this!!!! I have been told within the last 2 months the same thing. I went to see a new doctor, hoping for a "fresh look" at my TN and he asked me if I was sure I had TN. REALLY?!?! Why on earth would anyone make this up??? I was calm and clear with him and left his office with as much dignity as I could muster before crying in my car.
I was diagnosed December 2011. I have seen 4 different Neurologists, 2 "regular practice" doctors, 1 dentist, 2 specialty dentists, and an ENT doctor. I have had 3 MRI's, multiple x-rays and now I will be going in for a CT Scan. I understand what you are dealing with and unfortunately for us there are no easy answers.
I had an allergic reaction to Gabapentine so I take Tegritol daily. I have Oxycodone to help numb my pain (although it helps very little). I have pain daily and severe attacks up to 2 times a month. I have changed my diet to drinking nutritional shakes in place of "food", this seems to help the daily pain.
I wish you all the best and I am sending you lots of ((HUGS))!!!!
-Knottytree
Hi Helen,
Do you mind giving me an idea of what you put in your shakes. I need to start on daily shakes as eating does increase my pain a lot. I have looked on the net and most of them are all alike. Thought you might be able to put a new spin on them. Thanks
Cheryl
Dear Helen,
I am so sorry that you have to go through this and be in pain at the same time. I heard once that the only reason for the MRI was to be certain that nothing else was causing the pain, like a tumor. They do not have to see a compression. Go to the TNA site where there is a list of doctors that maybe are near where you live that you could go to and then you can by pass all the garbage. Where do you live? Maybe I will know of someone or can find a doc for you. Take car.
Cheryl
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Thanks Cheryl x
I found many words came to mind, none of them nice. I am so sorry. Yes, stress can make TN much worse, but to say what he did to you was totally uncalled for. Can you change neurologists?
Hi Sara. I’ve requested an apt with a neurosurgeon in a different city who has an interest in tn x
So sorry you have had this experience. Dr.s who are not well versed in trigeminal neuralgia can be real asses (please pardon my language). Definitely find a specialist in trigeminal neuralgia! There is a great referral list on this site. You may have to travel...but it is well worth it. Best of luck to you that you find treatment that helps.