ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: cindyj on April 21, 2008, 04:21:36 pm
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This is not a post-treatment question as I haven't had treatment yet, but thought it might be ok to post it here...
I have had several severe vertigo attacks over the last 8 or 9 years and in between those attacks, I have mild vertigo daily (when I lay/lie down, roll over, etc) and feel "woozy" at the drop of a hat. In trying to find the right doctor and treatment for my AN, I had a final new consult on Friday with Dr. Mattox here in Atl. He was the first doctor to really take any interest in my vertigo, which I have been thinking was surely related to this AN. Well, he said he thought it was a separate issue, just happens to be on the same side as the AN. He did an "exam" w/ these goggle things - threw me backwards and watched things spin. Is this "nystigmus" which I've seen some of you post about? I could see the reflection of the spinning in those goggles - it still makes me sick to think about it. Anyway, he had his nurse do some therapy on me (put me upside down in various head posittions) in hopes of moving those loose particles to a better spot. This brought on one of the worse vertigo attacks I've had in years!!!!!! Horrible, horrible next 12 hours or so. They told me prior to the therapy that most people leave feeling much better...I did not fall into that category, to say the least.
I feel better today and will go back to let them try one more time to resolve it. If it doesn't work, I know there is some type of surgery that can be done...My other question is, have any of you had that surgery? I'm thinking that perhaps I could have it done at the same time they take the AN out, if I choose surgery for the AN - do you think that is possible? I'll ask the doc about it when I go back, but you guys are all so knowledgeable, I thought someone might have some thoughts.
Thanks - hope you are all having the beautiful Spring weather that we're having!
Cindy
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I'm no expert on vestibular stuff, but I did have vestibular lab testing, including the goggles thing. All they found in me was a little positional nystagmus when I lie on my right side. Nystagmus is "beating" of the eyes, where they flick back and forth, attempting to correct for missing or scrambled balance signals. It is considered "consistent" with having a neuroma on the balance nerve.
That "put me upside down in various head postions", followed by a serious bout of vertigo, sounds more like the issue where stuff (crystals? flakes?) gets stuck in the semi-circular canals (more like tubes) that make up your main balance organ. I think Dr. Mattox is right, it is probably not directly related to the AN. I also think, based on casual conversations with the therapist at the vestibular lab, that the therapy is often quite effective at clearing out the tubes so they can function properly. Once they get it cleared out, that is. Sorry it has to get darkest before the dawn...
As far as surgery, I think they basically just take out the balance organs on the affected side. After some weeks, your brain adapts to having balance on only one side, and you can do fine again, as long as you are not in the circus. I believe that the organ also comes out in the standard trans-lab surgery for ANs, or at least the nerve is cut, which has the same effect. I'm hoping the vestibular therapy will do the trick, though.
Take care. PS, it has snowed, of all things, over the last couple of days. Only a few flakes, but come on, the tulips are up and it is almost May!
Steve
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Thanks, Steve. Yes, it is flakes/rocks floating around in the wrong place and they're trying to get them to move. I am scheduled to let them try it one more time in a couple of weeks - we'll see if it helps. I am now thinking this might actually be what I need to help me in my decision about the AN treatment- if the surgery will take care of this vertigo, I may go w/ surgery for the AN - kill two birds, kind of thing...
Sorry to hear you guys had snow - while it is unbearably hot here in the summer, this time of year makes me glad to be in GA!
cindy
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Hey cindy sorry you're having a hard time with vertigo.Did you ever have a consultation with Dr. Steerson and if so how did that go?majority of people say he's alittle aloof ,but he's a great surgen. Teresa
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Hey Teresa,
Yes, I did meet Dr. Steenerson...I had been told about his personality, so was prepared. But, actually found him quite personable after the initial moments of exam. While he didn't really focus on my vertigo, he did mention that they do vestibular therapy at his office. He is definitely on my list for consideration for either surgery or GK at St. Joe's. I just also wanted to meet Dr. Mattox and Dr. Crocker at Emory - I have liked everyone! Now I really have no one else to meet, I've just got to figure out what to do.
Thanks,
cj
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Definitely do the vestibular therapy after your treatment, also. It works wonders. I did it 5 months ago, and still have to do my exercises everyday. If I walk up the driveway, I look like a drunk. I can imagine what my neighbors are thinking!!
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Thanks, Dani.
Did you have vertigo before your Translab? Is it getting any better for you? So hard to do those excercises when it causes such nauseousness...ugh.
c
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I had no problems with vertigo, hearing loss, headaches, etc. This thing just came out of the blue. I was having heart problems and passing out at work. They sent me to a neurologist to see if I had epilepsy or something like that...After AN surgery, not as much with the heart problems and no passing out. Hey, a new symptom? ???
Yes it is getting better, but I have very dizzy days and some not so dizzy ones. I just back into a corner and look up and down and back and forth for about 15 min, then sit down for awhile and that makes it better.
Good luck with whatever approach you decide on. We're all here for you. :)
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Thanks, Dani. Think I'm just going to have to toss a coin - I see the benefits in both surgery and radiation...
My son is graduating from high school in a couple of weeks (hopefully :)) so I think I'll not try to think about this too much til that's over.
Thanks again everyone for all your input and support to all the newbies here,
cindy
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Hey cindy How is your vertigo?Any decisions yet on surgery or doctors here?Been thinking about you. Teresa
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Thanks for checking on me, Teresa. My vertigo is back to where it was before the upside down excercises were done...a tolerable level. I was supposed to go back for another go at the treatment to see if we could completely get rid of it, but I think I'm not going to do it for now. I was just SO sick, I can't stand the thought of going thru it again right now. My son is graduating from high school in a couple of weeks, so I'm trying to get ready for all of that.
As far as my AN treatment, no I have not made a decision. I posted somewhere the other day that I have a gynecological issue I need to deal w/ first. I am scheduled for a diagnostic procedure on May 28th to rule out cancer...I am confident it will be ruled out, but it's taken priority at the moment. I hope to have a "light" come on after that to help me make the decision about the AN...
Thanks again - hope you're doing well,
Cindy