As many of you know I've had Geniculate Neuralgia for over three years now, and it began after a horrid tooth extraction. I made arrangements,set up a fundraiser, spent money I do not have to get to upmc because the neurosurgery nurse promised 60% success in cutting nervus intermedius. I was very clear that prior neuro had not seen any compression. Yesterday- all day at upmc, finally met neuro. Told he does not believe tooth extractions, dental issues cause Geniculate Neuralgia, he does not believe surgery will help nor does he believe anything will help, so in summary, this pain that has taken over my life will never end. He said he would cut nervus intermedius only at my insistence with success rate only being 20%.
Any advice friends? Have any of you been told dental issues can or cannot cause GN? If you have GN do you have moments of horrible stabbing pain and hen dull sensations of pain, or like me do you feel as though you are constatly in the worst pain imaginable? The dental damage and fact that my GN pain is intense and never ending was what neuro used to say I either don't have GN or it is atypical GN and this is damage to the tissues in my mouth from badly done tooth extraction? I am devastated to have come this far, after telling the nurse and filing out paperwork to explain that there was no compression found a year and a half ago when I had a failed MVD, and now this is being used as a reason, along with pain starting after poorly executed wisdom tooth extraction, to not complete the surgery. Every reason to not perform the surgery was in multiple emails, phone calls and extensive medical history sent well before my surgery date. In upsets me that none of my info was shared with the neuro ahead of time, as then traveling so far, spending money I do not have and pulling my sister-in-law out of work and on four flights could have been avoided. I traveled for and paid thousands don't have to get here. Oh, an important fact I forgot t mention in the prior post- I have taken all meds for this pain that are on the market, get pain med goo in ear each month that helps for a day and many rounds of Botox were unsuccessful. Any similar experiences, or neurosurgeons with a different opinion would be very very appreciated.Thank you!
Oh RueAnn,
I can only imagine how you must feel…it angers me that a so called professional is spewing incorrect info. He’s entitled to his opinions BUT dental injury can and does affect the trigeminal nerve . http://trigeminalnerve.org.uk/patient-resources/need-to-know/
It wasn’t the cause of mine, but there is plenty of research supporting it along with many TN patients personal stories.
Here’s the thing however, this discussion with the specialist should have been had prior to you spending money and travelling there.
Based on what you’ve written it sounds like this guy knows nothing of TN.
May I ask why you went to see him?
I’m a bit confused.
Do not agree to having this Dr. Cut your nervus intermedius , NO good doctor says he’ll do something so severe at your insistence…Um, NO!!
I’ve seen way to many people in the throes of desperation for relief agree to treatments and procedures that often worsen their condition.
You must have full confidence in the Doctor before agreeing to anything.
My opinion only, but I strongly believe this.
I know we become so desperate with this pain but there are many other professionals who specialize in treatments/procedures for TN…I know just the thought of changing direction is overwhelming but you need to trust that this happened for a reason and do NOT lose HOPE. There is always HOPE!
I suffer greatly from the pain RueAnn, my MVD did not work for any great length of time, I know this to be true, hope and faith that there is an answer is often times ALL we have…we must cling to it, take a break from pursuing and then pick up and pursue some more.
Wow, you just wrote my experience at UMPC 18 months ago (except Dr. Sekula was extremely compassionate and helpful). He basically told me that after seeing the results from my MRI he felt he would do more harm than good. I was scheduled for surgery the next day when I saw him and it was cancelled at the final hour after I had already had earlier that day a specialized fiesta 3D MRI, hearing test, blood work, hearing mapping for surgery there at UMPC earlier that day just prior to seeing Dr. Sekula. In the long run it was a blessing. He recommended changing my medication regimen, try Botox, cervical chiropractic and learning how to live with chronic pain. Since then I changed my medications, which helped and have had 3 sets of botox injections which have also helped a great deal. I still have daily pain, but know there was a reason why I didn't have surgery that day. I have adjusted my life to live within my limitations, it's the best I can do for now.
Sorry you had such a terrible experience, UMPC needs to be called our for their practice of bring out of town patients in for an appointment with surgery scheduled even before they are seen by the surgeon. Yes, it may mean two trips to Pittsburgh for those who travel, but I'm sure we are not the only ones who have had this experience.