Possible AN? Advice needed

[ZacharyJames]

So let me start off by saying that I have not been diagnosed with an Acoustic Neuroma. That being said, this post is to seek advice because I have reason to believe that I might have an AN, here's why:

When I was around 15 years old I began to notice that my eyebrow on the right side of my face was drooping slightly lower than the one on my left. I wasn't concerned at the time, but after a couple years the drooping got a bit worse so I went to see my general practitioner about it. He basically told me not to worry since it wasn't that noticeable and sent me on my way. Over the course of the next few years (I'm 21 now) the drooping got worse and now extends to my cheek. I would describe the facial symptoms as resembling mild Bell's palsy, as it's not very noticeable at first glance and I can still move most of my face though my smile is somewhat crooked and I have a constant dark circle under my eye and a swollen looking cheek. Aside from the drooping, the feeling is fairly uncomfortable and I experience a constant numbness in the affected area. I can also feel some sort of pressure behind my ear on the side of my head which feels as if it's the source of the issue. I don't have any hearing loss as far as a I can tell, but I do have a weird feeling in the my ear that feels like when you change altitudes and the pressure changes so you have to pop your ears. In the past year I've started getting motion sickness very easily which I feel could potentially be related to the issue. About a year ago I went to see a local neurologist about the issue and he wasn't very helpful. At the time I had no knowledge of AN or FNS nor did he make any mention of either. He didn't seem to know what to make of my symptoms and after a standard MRI he still could not diagnose the issue. I never did take a good look at the MRI but from my understanding sometimes smaller AN's can be hard to identify. A few months after that I kept doing research and came across intratemporal tumors which seemed a very likely cause for my condition. I went to see a different neurologist who examined my facial motor function and deduced that it was no big deal and I shouldn't worry about it, despite my concerns. I discussed the possibility of a nerve tumor with him and he brushed it off as a non-possibility due to my MRI results supposedly being good and my motor facial function being satisfactory even after years of noticing the issue. I realize now that I probably should have requested more scans. So fast forward to now, after months and months of more worrying and a feeling of helplessness I was doing more research and came across acoustic neuromas and facial nerve schwannomas. I have a strong feeling that my symptoms are related to having an AN, but I have a few issues. Right now I'm a student at the University of Alabama and don't have much time or money to travel to try and get a diagnosis from a knowledgeable doctor with AN experience. My parents have been doubtful and generally unconcerned with my complaints since my symptoms have been so mild and my concerns have been shrugged off by the doctors I've been to, though I've recently made it clear to them that I consider this a very serious issue and I would like to seek legitimate medical expertise as soon as possible, rather than wait a couple years after school to try and take care of it (because if an AN is truly the cause then time seems to be quite important).

Sorry for the whole spiel, I just figured I'd outline my situation to give a better understanding. Basically, I'm wondering if anyone has any advice in terms of where to go/what to do to get properly scanned and reach a diagnosis, as well as wondering if anyone has any recommendations for good doctors and practices in the southeast for AN.

[alabamajane]

ZacharyJames,,
Welcome,, so sorry for your health issues. Sounds like you have had a hard time getting someone to take them seriously,,, so sorry. That can be very discouraging! Not many doctors have experience with ANs and a diagnostic MRI without using the contrast agent, gandolinium, (Sp?),, would not be likely to show a small AN ,,

I just wanted to give you a suggestion of doctors in the area from my experience,, you say you are at U of AL,, I'm guessing at Tuscaloosa,,, there are knowledgeable doctors at UAB at the Kirklin Center who would probably be your closest. Dr Ben McGrew is an otolaryngologist with experience and he teams with Dr Winfield Fisher, a neurosurgeon, for surgery. This is the team I used and they are quite knowledgeable and qualified,, if you can get to Birmingham that would be a good place " locally" to start. ( I have not heard of any doctors in T-town).

Then you also have a good resource at Vanderbilt in Nashville for a second opinion once you are diagnosed,,,, they have wonderful doctors there and a wealth of knowledge,,,

I hope that helps and I hope you get some relief and answers soon,,,
If I can help further,, feel free to PM me,,good luck!

Jane

[milhaus]

ZacharyJames:

I'm a worrier like you. I know what it feels like to know that there is something wrong with you than you can't quite pinpoint, and to go to doctor after doctor never getting taken seriously. I was going to doctors appointments, physical therapy, and even the emergency room for over a year before I finally got diagnosed. I even had a CAT scan that missed my 3.8 cm AN. I fully sympathize with your experience.

If you really do have an AN though, you do have plenty of time! If you have an AN that is small enough that they didn't see it with an MRI (Did you have an MRI done with contrast? Are you certain it wasn't a CAT scan?) then you have years and years ahead of you. It is likely that your doctor would even give you the option to not do anything about it, and put you in watch and wait status (assuming it is small). My doctors told me I had likely had my AN for at least ten years.

The unfortunate part of AN's is that, while they are not malignant, most of the problems they cause are not fixed by treating them. If you indeed have a very small AN, I wouldn't rush into surgery if I were you. I wish I could have put off my translab by ten years, but I didn't have the option because my tumor was very large and in a bad spot. You will indeed still have to live with the symptoms while you have the tumor, but getting it out often just makes them worse. For example, I had hearing loss, vertigo, and tinnitus before my translab, and now afterwards I have single sided deafness, dizziness, and tinnitus. I would recommend to most people who need surgery for an AN to wait as long as they can. AN's are very slow tumors. I have read about studies done on cadavers that showed a very large number of people go to their graves and never even know they have an AN.

My point is, relax. This isn't going to kill you. You may have some uncomfortable symptoms, but if you have a tumor and get treated, not much will change. Go get checked out, especially if you haven't actually had an MRI with contrast done. But relax.

I totally understand worry. I have worried myself sick for years. Often, I was right to worry about what I was worrying about. I did actually have a brain tumor! But one thing I have learned from all those years of worry is that while getting answers may have been helpful, worrying was not. People might think I'm crazy for saying this, but the other thing I would recommend for you is to get used to the idea of being uncomfortable. If you have an AN, you are going to be uncomfortable. If you don't, and you never find out what's wrong with you, you are going to be uncomfortable. Learn to accept that discomfort, and carry on.

Make a plan to resolve this issue. You mention not having money, so it may take time. That's OK. You have time. In the meantime don't let worry, or your symptoms, keep you from doing anything. Whatever it is in life that you need to get done, get done. Discomfort will be an unfortunate part of the deal. Carry on.

[ANSydney]

Speaking of cadaver studies, here's the result from five such studies ( http://thejns.org/doi/pdf/10.3171/2012.7.FOCUS12186 ):



About 1 in 100 people die with an acoustic neuroma, most undiagnosed.