Thanks so much for all your hugs & support Ry, Susie, Jen, & Palady! I really can't put into words how much I appreciate it.
I'm feeling a little better now after getting a good cry out for a bit & then snuggling with the puppy. I'm still pretty upset, but I'm calming down. I was just hoping, praying, so badly that I would get at least some sort of partial answer or that he would have said, "well I don't see anything, but maybe...." Everything really just hit me hard today, especially since I'm still struggling about
what to do with this coming semester & I was hoping that seeing this doc might help. I had been looking forward to seeing him for months. The way he worded his answer didn't help either -- saying that there is "no medical explanation," instead of saying, that he didn't have an explanation. It just made me feel like he thought it was all in my head, although I don't think he meant it to sound that way.
This guy is supposedly one of the best neurophthalmologists in my state. I'm not sure I will see him again after the MRI, I think we will talk via phone, but I will only go back if they find something. Maybe they will. I'm going to an excellent university hospital for this one, and my last one was done at a small local hospital & I know that their MRI machine is pretty old & not the best. I probably should have gone to one of the big hospitals near my school the first time around, but it was more convenient at the time for me to go to the one nearer to my house. It also helped to talk to my father, who is a general practitioner & he basically reinforced the fact that just because he didn't see anything obvious (which we didn't expect him to anyway, since I have had sooo many tests done & seen sooo many different types of doctors over the last couple of years) doesn't mean that there isn't something wrong & something that is causing the pain. We just don't know enough about
the body or have good enough diagnostics yet.
My eye pain is directly linked to the damage caused by the injury, so I've never had at CT before, although the last MRI was of my entire brain, including the eyes & I think this one will be the same. I do know that neck & eye problems can go together. I think I actually have some neck problems created by my eye problems. I've never had a doctor look at it, but it bothers me a lot right over the occipital region (which is the region associated with vision. When I go to acupuncture, they always work on my neck too because it is a mess, at least muscle-wise on the same side as my eye pain & it is always tight and cracking. I wouldn't really call it painful though, it just aches like the muscles are sore and knotted. Supposedly my neck & spine are crooked and my hips are rotated, all from my body compensating from my eye pain & they always have to straighten me out!
Not having an answer is the worst! Obviously the pain is horrible, but the frustration associated with not knowing WHY you are in so much pain makes it just that much worse! It really makes you realize how limited medicine still is. It's definitely made me lose a lot of faith in healthcare. Thanks for the suggestion of the neuropsychiatrist! I've never heard of them before. I have been to a psychologist that specializes in pain before. Is it at all like that? He taught me biofeedback, but I haven't had much luck with it, but then again, I haven't practiced it as much as I should, because when I'm in so much pain, I don't always remember things like that.
Do a lot of doctors really dictate in front of their patients?! I had never heard of anyone doing that before experiencing it today. It was just a strange experience. I felt kind of like I was eavesdropping or something, and I felt a bit like he talked more the that machine than to me! I'm trying not to give up hope about
this MRI, but I think it would be easier to be more optimistic if the doc hadn't have said that he didn't expect to see anything on it. I think I'll do okay with the psychiatrist. I'm really only going to be seeing him a couple of times for a med eval, not psychotherapy, as I have a wonderful psychologist that I have been working with for a couple of years. He recommended some psychiatrists to me, so I'm going to give one of them a call tomorrow & try to set up an appointment. I do hear psychiatrists are really hard to get appointments with though. I guess you usually have to wait quite a while to get in for the initial visit.
I know he based his answer off of not seeing any visible abnormality that could explain the pain & my test results from today being relatively normal (although my eye has been pretty "quiet" looking since the initial injuries healed, all my remaining abnormalities are external or functional). However, I did ask him something along the lines, of "do you have any possible thoughts about
what could be causing all my pain & other associated symptoms," thinking that he might have some sort of a theory or say something along the lines of what you just mentioned about
a cause that isn't visible. Instead, however, he he said that he "could not even begin to speculate" about
a cause & that kind of took me aback. Even though I have been to many other different doctors & they too have not turned up anything significant enough to cause all the pain, etc, at the very least, they all had their theories, so I was kind of shocked that his guy had literally nothing to say. I will ask him again after the MRI, but at least I have other doctors who can verify my history & that I am in a lot of pain & do have other symptoms associated with (although not causing) the pain/whatever process is causing the pain. And hopefully most doctors realize that we don't know everything in medicine yet. So far I haven't had a problem with not having a solid, well supported diagnosis, as quite a few chronic pain patients also do not, but I'm sure there is always a first.
Well I suppose I should try to get to bed. Having had gotten a total of less than one hour of sleep last night certainly didn't help things today either!
Thanks again to everyone for all your support & ideas! You guys really help me to cope, understand, and keeping going!
Post Edited (skeye) : 1/12/2009 10:29:50 PM (GMT-7)