Hello all! I am newly diagnosed (last week) but have been dealing with symptoms for almost 2 years. CT showed left side is about 4cms and right side is 3cms. I was completely unprepared for the diagnosis and offer for surgery, so don't remember anything else that was said beyond "we can fix this, but there's going to be a scar". Oh and he did say that we could try to go inside but in his experience (20 procedures) he prefers external and make sure the scar heals nicely. But I didn't ask any other questions, when had I been mentally ready for this I would have had a long list. A little patient info about me--45 years old, female, athlete and active lifestyle.
I've had a very supportive family doctor when I first presented 2 years ago and subsequent visits (maybe 3 or 4 desperate attempts in the last couple of years), but he just couldn't find anything to explain my issues. He ordered CT, endoscopy, referral to ENT (same one who is doing the surgery) and MRI. I took prescription omneproxyl (even though they couldn't find reflux) and that helped for about 6 months. But the winter times have been the worst and this winter when it flared up 3 months ago, it was too ugly to ignore or quell with inappropriate prescriptions.
I was certain that I was going to die--a feeling like something large and gross is stuck in your throat , spitting phlem all over and getting dizzy when I'm running, terribly angry muscles on one side of your neck that do not get better with ice, chiropractor and/or massage, frequent stabbing pains in your ear and a feeling as if a large tool is inside my mouth pressing down on the left base of my tongue trying to push it down my throat CANNOT be good.
At first when it started 2 years ago, it was a pain along the entire sterno kleina mastoid muscle. My good friend is a dentist and told me not to worry, that it was just a pulled muscle. Last year my symptoms advanced to the entire left side of my neck, the base of my neck and stabbing pains into my ear. A CT was done and evaluated/positive for cervical degenerative disc (arthritis), but nobody said anything about my styloid process (this is the same CT used last week to show the elongated styloid). In retrospect, I had even thought that my pain was relating to muscular structures, so probably wasn't as CLEAR about my symptoms as I should have been. And, really, I hated complaining all of the time to my wonderful doctor--I thought he probably thought I was crazy. I'm sure he never knew the extent of my discomfort until last month's results of MRI showed only arthritis again. He said there's nothing we can do for that and I told him that I'm going to need some prescription pain killers than because I can't live like this. He told me that kind of pain is NOT my neck muscles or arthritis and sent me back to ENT--and told me to ask about Eagles.
The ENT did his palpitation thing and reviewed my CT and said I have ES. I was very excited to be diagnosed with something that wasn't going to kill me. But I was leary, I asked him--are you sure I don't have cancer? He held my shoulders, looked in my eyes and said, you don't have anything else. This is what you have and it's going to get better. After that I pretty much zoned out in a blissful state for the rest of the appointment. I do remember telling him that I didn't care about the scar, because I had thought of cutting my own throat open due to the pain--to try to get whatever is in there to come out (I would not really have done that but I did imagine it a few times).
However, after my MRI apt (2 weeks before my ENT apt last week), my doctor had Rxd me Celebrex. And last week I had the least amount of pain I can remember in months. So that got me thinking, should I just continue Celebrex, should I have let the ENT explain other pain management instead of cutting him off telling him surgery was my route. Does anyone have experience with this?
Unless I cancel, he's going in tomorrow extraorally. I'm really concerned that maybe I don't have to have this surgery (I've had plenty of other ones, but come on this one is really close to some major life blood areas) and jumped too quickly when offered the apple. I do trust my ENT who is performing the surgery . . . in fact from what I've read, it's really rare to have a doctor in a relatively small Midwest town with 10 surgeries under his belt. He's done both internal and external and prefers external . . . I want to be compliant with his preferences. Scars are not the end of the world, feeling this pain all of the time has definitely altered my life much more than a scar will. Course he told me he's done 10 surgeries when I asked him, so maybe that means at least 5 . . . still pretty good with this rare of a surgery.
Anyway, I'm just having last minute freak out syndrome now :). I'm going to Central America for a month at the end of January. I will be backpacking through Nicaragua, canoeing up the Jungle in Honduras and staying in tents and stick huts and then spending a week in Guatemala on a house build project (again sketchy hygiene conditions). Seriously, should I have just gotten a shot??!! My rationale brain says it's ok to do the surgery . . . I don't want this pain to deal with while I'm gone, I'd rather have a wound dressing to deal with--but what if I have nerve pain or worse as complications? Anyone out there who can offer some reassurance . . . as really I'm 99% sure I'm going through with the surgery.
Last note of interest, my brother is an ER doctor for about 15 years. He had never heard of this and had to do the same research as me to advice me. His advise was to get the surgery, in whatever method that the doctor recommends. I'm not normally one to be online a lot with chatting and blogs, even FB is limited for me -- I like to be active outside and quiet inside; however, if there are other people going through this and have not been diagnose, I want to be a little bit loud in the hopes that awareness of patients and doctors continues to increase.
Can you do the surgery after your trip?
