Hi all...

As most of you know I go to the doc for check ups every 2 months. When I go she looks all around in my mouth and feels my neck and recently said all looks good including my last appointment in December. She actually said once I see her again in February we can change from every 2 months because it will be a year since my surgery. This is all good right?...well....I'm no sure anymore.

My right ear has been bothering me for a while now and I mentioned it at an appointment before my last surgery. She said everything looks fine and then I didn't notice too much anymore. The past month I notice it more than I care to admit and I've been trying to ignore it until I go back in February. Now I'm just getting scared b/c I was so excited at the thought of not going every 2 months.

I don't get any scans since I started going to Fox Chase but had plenty when I went to Penn. My current doc doesn't like the PET but shouldn't I get something? I will ask this question to her but I'm wondering what you guys think.

I know if the big C is back I can handle it but I'm so ready for the rest of my life and that will force it to stop. Ray and I will be married 1 year in March...we are in the process of buying a new construction home and want to start a family. If the big C makes a comeback I can do everything but have children. I can't risk being pregnant and needing surgery or any other treatment.

So....what are your thoughts on ear pain?

Suzanne,


First, where fear is understandable and normal, why let it get in the way of taking action? That's what bravery is...doing what needs to be done in the face of fear, not the absence of it.

Second, it doesn't matter what tests your medical professional likes or dislikes...what do you want to do? Short of exploratory surgery, what other way to find anomolies not readily apparent...PET and/or CT. Where fallible they do serve a purpose. So in short, "F" your Dr's likes and dislikes and tell him what you want done, if only for your peace of mind.

You can't live in fear of recurrance and try to live your life "just in case". Live, do what you want in life...of all people you know how fragile and unpredictable it is. Where a recurrance is a possibility, so is getting hit by a bus. Would you make life decisions (other then insurance decisions of course) based on the probability of getting hit by a bus?

Get a scan or a referral to an ENT if you are not currently seeing one...or have your Dr get to the bottom of the pain...that's what they are paid for.

Good luck

Eric

Suzanne

I am very biased here since "Ear Pain" was my one and only symptom that was misdiagnosed so long that I was Stage IV.
A simple CT scan showed there was a tumor pushing on the nerve. So I think you should get a CT or MRI. I agree with Eric that this is your decision and the ENT should honor it. I would not get nor recommend a PETscan. It could be a simple explanation like sinus, or blocked Eustachian tube, but asking for a CT scan sounds very reasonable and would help ease your mind once it comes back clear.
Charm

Suzanne,

Eric is spot on. If you have pain near your ear an ENT should be consulted. My doctor prefers CT scans over PET for soft palet which is OK with me as long as I get a scan.

I had a doctor almost kill me years ago. He misdiagnosed a very serious illness and sent me home. I went back to him three times over two weeks and he kept sending me home. I spent the next three weeks in intensive care with a new doctor who saved my life.

That experience taught me that we as the patients are our own best patient advocates. Get what you feel you need and if your doctor dismisses your concern, get a new doctor.

Kelly

Thank you for your input...you gave me the push I needed. I've been feeling the pain for too long and I've tried to explain it away. I'm mad at myself because I know better....I really do.

Charm....in your experience the CT Scan shows if there is a tumor there? I don't see an ENT now and I never had. I have always seen an Otolaryngologist (sp?) is that weird? Since I joined the forums about a year ago I noticed most people see an ENT...

Sweetie- I totlaly understand.

I want to start a family too and move on with my life - I know how strong that urge is to just get back to normal. I want to make sure I'm out of the danger zone as much as possible. Such a hard thing.

Definitely get a CT or MRI. I had extreme ear pain but when the doctors looked inside my ear they couldn't see any swelling or irritating at all and kept telling me it must be post nasal drip... yet I felt this constant pressure and throbbing pain that wouldn't stop. It might just be a really bad sinus infection or something like that too but get it further investigated and get osme pain meds too!

XOXOX Kate

Suzanne --

Otolaryngologist and ENT (ear/nose/throat) = same thing. ENT is simply shorter (and a lot easier to spell!).

Also (just curious) -- did you ever have that appointment for another opinion at Sloan Kettering?

Suzanne, I know your fear all too well. The ear pain I had with both tumors on my tongue and that was what prompted my ENT to take action. I would push for that scan just for your peace of mind. I pray everything goes well for you.

Suzanne mine started with ear pain also lucky to catch it at stage 2 But now I will tell you something you must realize! Do not look at your drs.as above you! You in essence are their boss ie you hired them! Part of this protocol is working together on this project for success or what I describe as a WIN-WIN situation! Sit him or her down and tell them what YOU!!! want! grab the brass rig girl! go for it and you will see results! donald

Thank you all:) Leslie...yes I did go to Sloan Kettering and the doc there said I was fine. Honestly..he didn't give me the time of day or listen to one word I said. He read my chart and reports, looked in my mouth and we left. It took me about 6 hours of travel and I was with him for about 15 minutes. He didn't even read my chart before I got there...he read it while he was in the room with us. Anyway...he is supposed to be one of the best so maybe he can look that quickly and make a decision...