the results are in

Well, my MRI results are back. I may be starting to get some answers!

The MRI showed that there is a "gross enlargement" of the optic nerve. My doctor said it was basically taking up all the space behind my eye. BUT, now here's the kicker, he said that this should NOT cause all the pain that I'm in -- some of the visual & functional problems yes, but the pain, no. That just doesn't make any sense to me, because if the nerve is so huge, then wouldn't it be compressing other nerves & tissues back there (which was our original thought)?

This doc is not very helpful, he is very curt, blunt & is not willing to theorize. I've got to call my regular doc tomorrow (today was a holiday, so he was off) to discuss this with him. I'm sure he'll have some thoughts about all this & will probably be much more helpful. He is great. I guess it helps that he has been seeing me regularly for the last 20 plus years.

I'm so relieved to have FINALLY found something, even if we don't know what it means yet & it is not the main culprit of all this pain. At least it is something, a clue. I saw my pcp today & he gave me a big hug & said "congrats, you're not crazy! I knew it."

I'm now on massive doses of prednisone for the next month to try to decrease all the swelling. It's not going to be fun. Last time I was on this much prednisone for my eye, I barely made it through ONE week, the side effects were so bad (not to mention it didn't help at all). This doc doesn't actually think that the prednisone is going to help (at least with the pain, especially since I've been on it in the past, with no luck), lovely, right? But he wants to thorough, so I'm trying it for now. We'll see.

First day of classes for the semester is tomorrow. Wish me luck! I'm sure going to need it, with everything going on. I'm going to try it out for a week or two before I make any decisions about dropping classes, or dropping out for the semester, or longer, in general.

I apologize if I rambled at all. It has been a pretty crazy day for me & my brain is kind of fried between the pain, stress about starting school tomorrow, the MRI findings, someone trying to steal my car from a parking lot on campus last night , and this psychiatrist I saw tonight who basically told me that I am depressed because I was going through oxycodone withdrawls (as I'm currently tapering off of it to re-evaluate where I'm at after being off of it for a week or two), but I won't go into much detail about that. I did yell at him, or at least forcible argue with him though, as he was waaaay out of line, since the depression started long long before I was even on ANY pain meds & in the couple of weeks that I've been tapering, I've never once felt ANY withdrawl symptoms, because my doc is doing a nice slow controlled taper. If he had actually listened to anything I had told him over the hour we were talking he would have known this. I'm going to try seeing him one more time, but if I don't care for him again the next time I see him, I'm going elsewhere. I don't need this, I don't feel like he really listened to a word I said, and he was certainly not easy to talk to. Okay, sorry for getting off topic.

Skeye

Post Edited (skeye) : 1/19/2009 9:48:37 PM (GMT-7)

Thanks Chart, my friend! I knew it wasn't "in my head," but sometimes you can't help but wondering, especially after seeing so many docs & not getting any answers! It is beyond frustrating!

I sure hope I am okay on the pred, too! I'm pretty worried, as last time, I was ready to call it quits after about 3 days because I was so riddled with side effects. The only reason I kept taking it was because I was desperate & I also knew that if it did not help, I would be done with it in a few more days. A whole month is going to be a killer. It is probably the most awful med that I have ever taken. I remember being hysterical on the phone with my parents because it just made me feel so sick. I told myself I'd never take it again, and here I am... I'm hoping my regular ophthalmologist might have another suggestion. He mentioned doing steroid injections behind my eye when I saw him the other week. I wonder if that wouldn't give the same effect & less side effects (although I know it comes with its own problems, and sounds like the injections themselves are oh so much fun!).

Skeye

Skeye,
That's great news about them finding the swollen nerve! My take on the pain is that the doctors almost never know what they're talking about. Probably the only way you'll find out whether or not it's causing you the pain is to get it treated. I really hope the Prednisone doesn't cause you too much trouble. Maybe they can just lower the dose if it starts to make you sick. Maybe it's an option, or maybe they can give you a cortisone shot in your eye like you said. I would think the shot would keep down the systemic problems, but a needle in the eye sounds pretty risky. Hopefully you can find a special neuro-ophthalmologist who does those all the time if you have to go that route.

I'm really sorry to hear about your bad experience with the psychiatrist. Unfortunately, that was always my experience: they never bothered to listen to a word I was saying. One thing that might help is to get your pain specialist & psychiatrist to talk to one another. This is an especially difficult feat to accomplish, but can make quite an impact if you actually get them talking. Also, I found the psychiatrist was the one doctor where it actually helped to bring family with to the appointment. That was never, ever the case with psychologists or counselors, but with every psychiatrist it really did seem to make a difference when they heard the exact same information from a family member. Who knows? Maybe it's worth a try. I hate to hear about people suffering while their silly doctor keeps asking the same questions over & over again. I sure hope you find the help you need soon.

take care,
frances

Thanks for all the replies everyone, you all make me feel so loved!

Palady, I don't know whether or not the oxycodone would help with the prednisone side effects. That is an interesting thought. I've been working on getting off the oxycodone for the last two weeks or so & I should be completely off of it within a week. Then the goal is to go at least a week without any & see if my pain changes (worsens) at all. So far my thought that it had not been helping much have been confirmed. I think we are planning to switch to something else at the end of the trial (about two weeks from now) unless I miraculously discover that the oxy was helping more than I thought, in which case I'd go back on it. So due to the time frame, I suppose I will experience the prednisone for a couple of weeks with nothing else in my system, and then for another couple of weeks with another pain med on board. It will be interesting to see if it makes a difference with the side effects, although it could potentially make them worse, or add to them, since I would be messing with something completely new. I haven't spoken with my regular ophthalmologist yet, but I'm still hopeful that he is going to think of something else to try that is less harsh. I really really hate steroids (have I said that enough?).

Frances, I did call my psychologist today & asked him to talk to the psychiatrist, as he knows me & my struggle w/ CP and what I have been though very well. I thought that might help. I might bring someone along with me in the future. If I stick with him, anyway.

Thanks for the command, Me . I made it through the day alright, although all I could think about while sitting in my class today "was can I do this? What if I can't do this?" I'm going to drive myself nuts if I keep worrying. I just need to relax & let what happens happen (so much easier said than done). Tomorrow is an even bigger day for me, as I start my internship (which is one of the reasons I'm trying to hang in there this semester, despite most people's instincts & my own body, which are telling me to drop out).

Skeye

Skeye

Skeye,

I just wanted to say how proud I am of you and your courage through all of this. Then add a doc who's like talking to a brick?!? That's just wrong. I'm with you 100% that if he doesn't "shape up" he's outta here!...lol

Keep us posted,
Chutzie

Thanks Chutzie & Pete! Pete, I'm actually doing an internship in a hospital this semester. Good thing I'm not working in the infectious diseases department, huh?! The last thing I need to do is get sick, on top of everything else! I think my immune system isn't so great to begin with thanks to good old chronic sleep deprivation. Two or three hours a night just doesn't cut it .

Well, I talked to my personal ophthalmologist last night & he pretty much agrees with the neurophthalmologist, although he did explain things much better. He said that the nerve enlargement is due to a build-up of cerebral spinal fluid in the nerve sheath. We still don't know the cause. He also doesn't think that the nerve enlargement is causing the pain, only some of my vision issues, due to the way the CSF compresses the nerve. Likewise, he doesn't think that the steroids are going to help at all, but it is worth trying. I'm already feeling the side effects, with one of them being increased focusing difficulties in my eyes (how wonderful it is that the meds are making things even worse ) and I've got about another month to go (assuming I can stick it out that long)! No luck with the pain department so far. If anything, I've been in more pain this week (I'm sure its partly from the added reading & stress of starting classes, etc). My pcp wants to get a copy of my MRI films & to review them with a special radiologist (I forget what he called them). He doesn't accept that this finding is unrelated to my pain & the injury, and I'd have to agree (although I'm making that assumption purely on my gut feelings, rather than any kind of real professional knowledge). Maybe some day this will all fit into place, but I'm starting to feel like I'm back at square one again. The momentary break in frustration was nice, but was too short lived. But at least we know that there is something going on, even if it is only a small piece of the puzzle & we have not a clue what it means. Don't you just wish there was someone out there that had a magic wand that they could wave over you & tell you exactly what is wrong (and not to mention how to fix it).

I've been pretty scare this week between dealing with the pred, the pain, no sleep, and classes & internship starting up. I've just been too tired & too much pain to come on here & read. I'm still not sure how long I'm going to be able to hang in there. I absolutely love my internship so far, but I am very concerned about my ability to read & get my work done. We'll see. I desperately don't want to have to drop out & there really isn't any way that I could drop or rearrange any classes this semester because of the internship.

Skeye

Post Edited (skeye) : 1/23/2009 9:47:45 PM (GMT-7)

Hi Dagger,

The school does get books on tape for me, although they are highly unreliable & often cannot get the books that I need, or do not get them within the time frame that I need them, despite months of advanced notice. I also get all of my papers enlarged & extra time on exams since reading is so tough for me. I do have to talk to the school about other things that can be done this week, but when I've spoken with them in the past, they haven't been very forthcoming about suggesting other ideas. And unfortunately, I am a very visual learner.

Skeye

Thanks Chart! You're right, my best is all I can do. Unfortunately there are no magic answers. I've got 3 semesters left, counting this one, so I'm on the home stretch. I wish your daughter all the best for next year, those are all great schools! I hope she gets in! The waiting is the worst part!

Skeye

Skeye:

Have you ever read about or heard about Wegener's granulomatosis? I am not sure it sounds right for what you are experiencing, but I happened upon information about it today and it mentioned that it sometimes had eye symptoms and was typically very difficult to diagnose. There's info on webmd and mayo and other sites if you google it. I hope you are getting some relief from your pain right now. I'm so proud of you for sticking with the schooling... I know that is so difficult with the pain and eye strain with reading. I'm rooting for you!

Ry

Just wanted to offer up more soft hugz...
Found out today Rice University chose not to have my daughter audition, it broke her heart, but it's truly their loss,
as she's very good with her flute and she's had a hard struggle as she has a heart condition (she had open heart surgery at just
12 days of life), so she's come through a lot and if they'd had her audition she would've been choosen, anyways their loss. She has three other
colleges in mind so keep your finger's crossed. I wonder how many Rice did choose that will not live up to their playing, I wonder if Rice thought
about that ...
Anyways keep your finger crossed, this waiting game is hard...
Prayers for you too Skeye...

Aw Chart, sorry to hear that your daughter didn't get into Rice. Sometimes there is just no real reason for why someone doesn't get in who has all the qualifications & more. Unfortunately, sometimes it is just political. I know how devastating it can be. The one school that I desperately wanted to go to was the only school that I was rejected from, but it works out in the end. I am very happy where I am now, especially with everything that I have going on! There will be someone that wants a student as dedicated and talented as your daughter & those that don't are really missing out!

Skeye

Aw, thanks Pete! I've been having a real rough day today ~ wondering why I ever decided to go back, I'm starting to think I shouldn't have.

Skeye

Unfortunately, your school may not be very helpful. It is drilled into us to be very careful what we say to parents of special needs students. We are not allowed to mention anything that will cost the district money even if it would really help the child. We can only discuss it if the parents bring it up and then we are supposed to steer them to the lowest cost option.

I've worked in two school districts (k-8) on opposite sides of the country and both were like this, even the well-funded school district.

They don't rush to help you because they hope you'll give up and either do without or buy it yourself.

I have seen first hand that the squeaky wheel gets the grease. The persistent parents did get the services their kids needed and deserved but it was almost a full time job. It is enough to make you ill.

You may find someone that really wants to make a difference and help you get the services that you need (and are legally entitled to) but the system is stacked against you.

I don't want to discourage you at all. I just want you to know that you may need to be really assertive and figure out what you need on your own then bug them until you get it. Do you have anyone that can be your advocate?

I am so sorry you have to struggle like this.