Long story short I had a glycerine rhizotomy done yesterday. I dont believe it did anything to help, and I had horrible side effects from the anesthesia, which is normal for me. The surgeon said it could take a week to take effect, but he drops a bomb on me and says that the pain in my ears has nothing to do with TN...are you freaking kidding me? He advised me that I "was on a long road" and would need to see other specialists, like ENT to diagnose the ear pain, and the source may never be found. I still have pain in my teeth, but will give it a few days and see what happens. I am at a loss here. After induring the rhizotomy, being sick to my stomach for hours and having a crushing migraine now , I wonder if I will ever go back to work. I am scared to death right now. Is it possible that my ear pain is from something else? It is constant now, I feel tons of pressure, feels like an earache with an occasional stab that feels like there is an icepick jammed into my eardrum. Or should I be pursuing a different avenue? Just really wondering as well that if its not traditional TN that the surgeon really doesnt want to do anymore and hurt his "numbers' , so to speak
Ummmm.. I have ear pain. and Trileptal is the only thing that helps me. and when I have breakthrough occasionally..I take percocet. Soooo i think he is full of bologny. HAH!!!
I think I would seek out a different neurologist....if I were in your shoes.... :(
The ear pain is pretty easy to figure out. The ice pick stabbing probably is the geniculate nerve. There's a whole group here for those with ear pain/geniculate neuralgia. You're not alone with that one. I'm so sorry that this procedure didn't help. I am getting bitter, running into doctors who are ready to do procedures just for the cash, and they don't care how it affects the patient. I have had to teach my doctors, because they know so very little about TN and GN and other neuropathies of the nerves on the skull. (Cranial neuropathies). Don't give up hope. Many of us have had periods of remission that last for weeks, months and even years. Also, the best approach to this nerve pain seems to be a combination of meds, rather than high doses of anti-seizure meds that make you feel groggy. Ask your doctor about the options, such as a newer anti-epileptic such as trileptal, plus a muscle relaxant. If those 2 don't work, some people have had relief from anti-anxiety drugs but not for anxiety, but because it stops the irritation of the nerve endings. Others have found that the above meds need a strong pain med to go with them for the worst times. There are discussions about natural things that help, and tips that people do at home to lower the pain a few levels. I use a number of different techniques, because if each thing works 10%, I can lower it about 50%.
One of the most severe cases I ever met here is Stef, one of the moderators. Suddenly last month she was able to go back to work! You need to search for her in the search box at the far right top corner. She can give you hope. One week, completely immobilized. Next week, in a remission and resuming her career. She had to give it up for many years.
Thanks so much for the kind words and the information. I am really bitter as well with the medical field. They give you 10 minutes of thier time, yet I may have a lifetime of pain. I did send a note to Stef and asked her for advise, I appreciate that you mentioned someone with success. I am on Lyrica now and its useless, my teeth still burn and my ear pain hasnt stopped in over a week. I am going to my primary care this week and will run some of these other meds by her.
I think most doctors are in a box about this and thier way of thinking doesnt go out of the boundaries, if I cant see it on the mri then it doesnt exist type attitude. I could get on a soapbox for hours about doctor incompetence and dissinterest!
Thanks again, Wendy
Sheila W. said:
The ear pain is pretty easy to figure out. The ice pick stabbing probably is the geniculate nerve. There's a whole group here for those with ear pain/geniculate neuralgia. You're not alone with that one. I'm so sorry that this procedure didn't help. I am getting bitter, running into doctors who are ready to do procedures just for the cash, and they don't care how it affects the patient. I have had to teach my doctors, because they know so very little about TN and GN and other neuropathies of the nerves on the skull. (Cranial neuropathies). Don't give up hope. Many of us have had periods of remission that last for weeks, months and even years. Also, the best approach to this nerve pain seems to be a combination of meds, rather than high doses of anti-seizure meds that make you feel groggy. Ask your doctor about the options, such as a newer anti-epileptic such as trileptal, plus a muscle relaxant. If those 2 don't work, some people have had relief from anti-anxiety drugs but not for anxiety, but because it stops the irritation of the nerve endings. Others have found that the above meds need a strong pain med to go with them for the worst times. There are discussions about natural things that help, and tips that people do at home to lower the pain a few levels. I use a number of different techniques, because if each thing works 10%, I can lower it about 50%.
One of the most severe cases I ever met here is Stef, one of the moderators. Suddenly last month she was able to go back to work! You need to search for her in the search box at the far right top corner. She can give you hope. One week, completely immobilized. Next week, in a remission and resuming her career. She had to give it up for many years.
You're welcome Wendy. Another thing that helps my pain is D3 (protects central nervous system) and subkingual (under the tongue) vitamin B complex, in either liquid or pills. The pain eases up so I forget to take them, and after a week or 2, the pain starts rising, so I go back on them, and they do help me.
Well, if you don’t have TN pain in your ear then I don’t and x and y and… So many of us say the same thing. When I startled the Group for Geniculate TN I never for one minute expected the explosion of members that ensued. Just astonishing how many of us have the pain. My pain sounds identical to yours in every way.
I thought many have the same as well, the neuro told me to go to an ENT, he felt it was viral, what the hell I am out of work anyway and have good insurance. Will check it out since you never know what kind of advise you can get, but doubtful that it is anything other than tn, would be a blessing in a way if it was
Wendy Jackie said:
Well, if you don't have TN pain in your ear then I don't and x and y and.......... So many of us say the same thing. When I startled the Group for Geniculate TN I never for one minute expected the explosion of members that ensued. Just astonishing how many of us have the pain. My pain sounds identical to yours in every way.
You're welcome Wendy. Another thing that helps my pain is D3 (protects central nervous system) and subkingual (under the tongue) vitamin B complex, in either liquid or pills. The pain eases up so I forget to take them, and after a week or 2, the pain starts rising, so I go back on them, and they do help me.
Wendy for my burning pain in my tooth I found Effexor to be helpful and for my burning pain on my chin I take amitryptyline. Just thought I would mention it in case it would be helpful.. Good luck at the doctor!! I hope you get some answers and some meds that work for you! :D