balance testing

[goinbatty]

My 6 month MRI is in a few weeks and needless to say, it is almost constantly on my mind.  My symptoms are minimal but it does seem that the tinnitis is worse than when diagnosed.  This of course could just be that I notice it more knowing the tumor is there.  Also have very mild balance issues.  My question is, whether or not the AN has grown, should I get baseline balance testing done? 
And yes, this watch/wait is a little tougher than I anticipated.  Any advice would certainly be appreciated. 

[barbjo]

Hi and hang in there!  Truly sorry.   I am also in a watch and wait limbo, not fun.  But your not alone.  I don't think it leaves any of our minds.  I had my original tumor removed in '03 and they found more this past May.  So, I wait for my 6 months watch time.   ???My opinion on balance, stay on top of it.  I didn't have any doctors bother with staying on my balance, and it just was gone after surgery.  (Now I also had a spinal tumor 10 years prior that did a number on it)  I had to almost request some balance therapy after surgery.  LOL...walls are great for holding up buildings, but they hurt after a while holding me up!    The more you do now the better the outcome. Just my thought. 
All my best!
Barb

[sgerrard]

I just had some balance tests done, at the suggestion of the doc, as a way of assessing the status of the nerves prior to deciding on treatment. Some interesting results, which I think the doc will find interesting, so I would say yes, they can provide useful information. Mine showed more effect on the inferior branch of the vestibular nerve, meaning that's probably where the AN started. I also had the auditory brain stem response test at the same time, for the same reason. Information is good.

[goinbatty]

Thanks for the input.  I will certainly request it at my appt in Aug. 

[pearchica]

You know, out of all the tests I had done, my balance test was the most awkward by far. the hardest part of the test involved keeping my eyes open for 2-3 minutes no blinking and following the path of red dotted lights to test my eye reaction I guess.  Also had warm water and cold water squirted into both ears and had to keep my eyes open for that.  All while wearing a very uncomfortable eye mask.  The session lasted about 40 minutes.  My cyber knife, MRI's and CT scans were a breeze in comparision.  I don't know if they will do the same type of testing for you.  As yucky as the balance test was, it did prove that my balance was fine, and having the test with me when I went to Stanford really expedited the process.

I think the more testing you have done, it will help you in the long term. Hope I didn't freak you out with my balance test experience- your experience may be very different.  And in my case, as the surgeon ( my first doctor) had decided to do a translab procedure on me which involved cutting the vestibular nerve to remove the tumor and to preserve the facial nerve, they really needed to make sure that my right vestibular was compensating for my left one.  I was lucky, the test proved that my right vestibular was fine, and after going to 3 other surgeons and deciding on cyberknife instead of surgery, one of the reasons I am convinced it was a no brainer for the doctor was precisely that I still had good balance for having a middle size tumor.  Hope this is helpful to you and yeah, I really feel for the watch and wait crowd... As my tumor was 2.5 CM, I had about 6 months to make a desicion.  Prior to the decision and the treatment, I felt like my life was on hold so I really admire all of you for having the patience to wait...if I had had a smaller tumor I would have done that too, but it's hard I'm sure.  Take care of yourself and keep us updated.  Annie

[claire1]

I just had some balance tests done, at the suggestion of the doc, as a way of assessing the status of the nerves prior to deciding on treatment. Some interesting results, which I think the doc will find interesting, so I would say yes, they can provide useful information. Mine showed more effect on the inferior branch of the vestibular nerve, meaning that's probably where the AN started. I also had the auditory brain stem response test at the same time, for the same reason. Information is good.

[claire1]

Hi.        I'm new here and really scared of my future. I have an AN on the eighth cranial nerve.  I have tinnitis,dizziness,clicking,dripping noise,fullness,headaches,coordination and balance issues with also significant hearing loss in my left ear.  It seems the dr's are sending me again for more test with an ear specialist. Would he be the one doing the balance test and the auditory brain stem response test? I've tried to keep a journal but with all this information thrown at me, my concentration is difficult at times. I will be haveing the gamma knife surgery in a couple of months but the dr's want to make sure there's nothing else going on.  I have been thinking this is there way of a "wait & watch"? I don't know which way to go now
thanks for the ears.
claire

[sgerrard]

Hi claire,

Sorry to hear about the AN. Glad you found this site. Don't be scared. It's not a great thing to have happen, but it's not the end of the world, either. You will get through it. They are lots of people here who can help you out, whether you want information, advice, or support.

My balance tests were done at a vestibular lab, at one of the local hospitals. I don't think most ENTs (ear nose and throat doctors) would have the equipment for the tests in their office, though some might. The ENT may refer you to a lab if they think the testing would be helpful.

Your list of symptoms sounds pretty typical. Not everyone gets everything, though you seem to have most of them. You may find it helpful to post a little more information, such as when were you diagnosed, have you had an MRI, and how big is the AN. That way people can give you more specific advice, and more specific sympathy - we've got lots of that around here. Don't be shy! 

Best wishes,

Steve

[claire1]

Hi
Thank you Steve for your words of support.  My AN is very small but it's the most significant with everything else going on.  I have an arachnoid cyst in the left side of the brain that is 2.5cm. If that isn't bad enough, I also have a bleed in the left cerebellum that measures 1.5 by 1.4 and has been reaking havoc with the tumor. My neurosurgeon says that I had a stroke and that the brain has been trying to compensate but the tumor is throwing out signals of it's own, thus causing all my symptoms.  He doesn't want to do the gamma knife radiosurgery until all reports are in for fear that the radiation will prevent healing of the other factors.  SOOOO, I'm on hold.  I feel like a walking time bomb and find myself starting to islolate.  I have severe spinal and neck problems that contribute to the amount of time needed to be lying flat on the table that goes into the machine. Mental status?? Yeah,I've got one but not sure where it is as yet.
Well you asked. I have to always remember that there are people worse off than me, That gets me through anything I have to.
best wishes to all.
Claire     

[elderbirds]

Hi everyone,
what is the significance of the balence testing prior to surgery?  I had one doc recommend it to see how much the nerve was functioning.  I understand that the balence nerve is severed (sp?) during either surgical procedure (translab & retrosig), so I don't understand how this info is useful in this scenerio.  Am I missing something?  The docs here at Hopkins (where I have decided to have surgery) haven't mentioned balence testing.
Thanks for the insight.
Hope

[sgerrard]

Claire: Okay, so you have some complicated stuff going on. I don't even know what an arachnoid cyst is, it sounds like a spider thing to me. I guess it makes sense that the doctor wants to be careful before setting you up for radiation treatment. I expect that it will work out in the end, and that at least the AN problem can get taken care of. I don't know about the other things, but hopefully there are treatments for them as well. Hang in there, improvements are bound to come sooner or later. No sense in pretending to be cheerful about it, I'm sure it can't be fun, but having a little attitude and finding your way through it is certainly worth the effort.

Hope: I think you are right, once you have decided on trans-lab or retro-sig, the balance nerve on the affected side is going to get snipped, so balance testing wouldn't provide anything useful. It is mainly useful for deciding if radiation treatment has a good chance of leaving the balance nerve in good working order.

Best to you both,

Steve

[Kate B]

Hi My AN is very small but it's the most significant with everything else going on.  I have an arachnoid cyst in the left side of the brain that is 2.5cm. If that isn't bad enough, I also have a bleed in the left cerebellum that measures 1.5 by 1.4 and has been reaking havoc with the tumor. My neurosurgeon says that I had a stroke and that the brain has been trying to compensate but the tumor is throwing out signals of it's own, thus causing all my symptoms.  He doesn't want to do the gamma knife radiosurgery until all reports are in for fear that the radiation will prevent healing of the other factors.  SOOOO, I'm on hold.  I feel like a walking time bomb and find myself starting to islolate.  I have severe spinal and neck problems that contribute to the amount of time needed to be lying flat on the table that goes into the machine. Mental status?? Yeah,I've got one but not sure where it is as yet.     

Claire,
-Out  of curiosity, have you consulted more than one doctor?  Which center have you gone to thus far?  IMHO,
Because you  have some other circumstances surrounding your AN, I'd consult the gold standard experts in the field.

Here are a couple of other places to seek information.

For Cyberknife, there is a doctor question and answer forum.
http://www.cyberknifesupport.org/forum/default.aspx

House Ear Institute also does a free consult when you send your MRI and reports.  Once received, they respond quickly.
Here is the info from their website.
<If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)>



All the best,
Kate

[Nancy Drew]

First of all, claire1 your situation sounds complicated, and I think it is definitely good to get to the best doctors if you haven't already.

Goinbatty, I had the balance test (done at my ENTs office) before my AN was diagnosed.  The ENT was looking for something else and the AN showed up on the MRI.  Total surprise for me since I wasn't really having in problems to complain about.  Watch and Wait was ok since I didn't think the thing would grow.  Now that it is starting to grow, the W & W is something I question every day.  It stinks.  Back to the balance test.  I had the same test as Annie and Steve, I believe.  I did ok with pretty much all of it except the water in the ears which made me throw up. However, I get motion sickness so probably not related to balance issues since they said I had normal balance.  Now that my AN has grown a bit, I notice I am having some balance issues, not the worst, but nevertheless they are there.  Before I have treatment, I think I am going to request another balance test to see if there is any change or if it is a psychological issue.  I think it would be a good idea to go ahead and get the balance test if the doc will let you.  It can't hurt.  Get all of the testing you can get from your doctor and your insurance.  It is "your" ear afterall, and you have to advocate and be proactive in some cases.  I wish you the best of luck.

nancy