Last week my face was so bad I woke my husband up in the middle of the night to take me to the hospital. The doctor gave me more pain meds on top of the 2 oxeycet I was taking every 3-4 hrs. He also sent me for at catscan. The end result was a second dr. telling me I had a sinus infection and told me not to take the other pain meds because I will od. The next day I spent with my head in the toilet od I think!! The next day my lower jaw swelled up so I went to see my family doctor who inturn sent me to a dentist. Great x-ray was taken but not well because I couldnt bite down. Dentist gave me antibiotic and sent me to an oral surgeon to have a tooth removed due to an abcess. I could understand this it made sence to me I have had two abcesses at the same time before and the pain this time didn't even compair though. Yesturday I saw the surgeon where he to a pan x-ray of the entire jaw. He told me there was nothing wrong with any of my teeth??? He showed me the x-ray pointed out my sinuses were also fine. Today I saw a neurosurgeon in Toronto for my second opinion where she looked at my MRI and said she could see something but she usually doesn't discuss surgery untill people have been in pain for years it is a last resort. She suggested that I up my medication. She also said what happened last week had nothing to do the TN and the constant ache in my face and pain is also not TN, but she couldn't tell me what it was. So now conflicting news between all doctors and I am no further ahead. All I want is some answers not different ones but the same and than some suggestions as to where to go to help me get my life back. I have lived with fibromialgia since childhood with dr's acting like I am crazy, I have lived with migrains, I have even lived with nerve damage to my wedding finger, my ancle after a bad sprain, and back pain from a car accident. Crazy I know it's alot for one person but still I had a life and sucked it up as they say. But.... this I can not handle and I am sick of doctors and conflicting stories I know what is happening to me ,, I know I am not crazy and I don't want anyones simpathy I just want answers something solid. Is there actually help out there a doctor who knows everything that understands and believes what I am going through???
Dear Tonya,
I am so sorry to hear of all you've been through and I know exactly what you mean when you say why won't they just tell you what is going on!
I think you need to go back to this last Neurosurgeon, take someone with you preferably someone who understands what you're going through and ask her to explain.
If your Neurosurgeon is saying that nothing of your face pain is TN - why does she suggest you keep taking your medication? If she can see "something" in your MRI, I would insist that she explain this further to you or advise you of who you can see who can explain it to you. I am confused by what you have also been told and I don't blame you for feeling confused also. Take along a notepad and pen and ask her to repeat anything you consider crucial information to you so you can write it down, this is important point to consider at any doctors appointment for those of us living with chronic pain.
I do know how you feel - but if she has a differing opinion as to your diagnosis I would want to know her opinions. Try to stay calm at the appointment as our emotions, yes me too - do get away from us and doctors don't deal well with emotion. At the very least ask her to write a letter to whoever is your primary doctor, be it your GP or PCP - explaining her point of view. If you don't return for a follow up appointment with her, maybe write a letter to her office asking her to forward a letter anyway to your primary care doctor.
Sorry if my answers here don't help or make sense. I'm feeling pretty sick right now and need to go and lie down. I"ll try to write better tomorrow.
Best wishes Tonya,
Kerry
I am feeling a lot of the same frustrations with being passed around to different doctors, dentists, oral specialists but I think I will believe the neurologist after all this to stop me geting confused. Know how it feels.
thank you both at times it is just comforting knowing I am not the only one; not that I would wish this on anyone else! I am curious if anyone else has had the swelling in the face or if the constantly feel like they have a sinus infection along with tooth aches on a daily basis.
Sometimes I feel like the right side of my face is swelling up as it feels to me like it should be so noticeable so I look in the mirror and there is no difference, this would happen all the time and it used to confuse me before I went to the neuro and it all made sense.
I just re assure myself now that I am not walking around with an apple sticking out of my face !