introducing myself, + a few questions

[pbloom]

hi,

It's so good to find you all!!!

My name is Pete. I'm almost 66 ears old. I live with my wife Sonja inAlexandria, Va.. I was diagnosed with an acoustic neuroma on Dec 18 and saw Dr. Niparko at Johns Hopkins on Dec. 30. He wants me to watch and wait since the tumor is small-4x6 mms.

Today is my last day on Prednisone, after 2 weeks on it. Dizziness and imbalance pretty much stopped while on Prednisone. Dr. Niparko recommended I begin taking Motrin, 400 mgs with breakfast and 400 mgs with dinner, hoping to continue some dizziness/imbalance control.

Questions:

-What experience have you all had with Motrin?

-How long has it taken for your imbalance and dizziness to be reduced, as the other side of your brain compensates?

-Have any exercises or other physical approaches helped with dizziness and imbalance?

-What results have you had with a hearing aide in the ear with little hearing left?

thanks a lot, Pete

[suboo73]

Hi Pete!

Wanted to say hello and welcome to this group - they are wonderful!
I am also from Virginia and in W & W, with only hearing loss at this point - so i am sorry, i can't help you with your questions....
However, there are many others here that will be able to tell you what has helped them.

I return to Hopkins in Jan. for some additional opinions on my own condition. 
It sure can be a lot to absorb some days; but this group has helped me immensely, and i am grateful for all their information and support.

I also found out that there is a AN support group in Washington, DC that will meet in January.  If you are interested, let me know. 

Take care and welcome!

Sue

[fbarbera]

Hello and Happy New Year,

I had a much larger AN which treated with CK in August 2007.  I had intermittent balance episodes before and after treatment.  These basically went away around 14 months after my CK treatment and now I have a slight, barely noticeable balance thing going on.  I never tried exercises - my doctor assured me that the symptoms would settle down within 18 months of treatment.  My hearing has been unaffected by the treatment and is good enough that a hearing aid is not required.

After treatment, I took up to 1200 mg of ibuprofen a day for symptom relief and found it only marginally effective - and not particularly effective against balance issues.  Perhaps you will have better luck.  I think the balance issues are individual and depend on the specific location of your tumor and the state of the balance nerve.  Be careful to protect your stomach of course.  I got concerned that my stomach was suffering damage and so I stopped as I did not want another health issue to add to the list. 

My website below details the research process I underwent when trying to select a treatment and also describes my post-treatment progress and has a couple of additional resources for newbies.   Obviously we'd all prefer not to have an AN but the bottom line is it is treatable and you will be fine.  With a tumor as small as yours, you will have all treatment options on the table.  I strongly urge you to consider all of them carefully and speak with two or three doctors with different areas of specialization (surgery and radiation).

Best regards,
Francesco

 

   

[sgerrard]

Hi Pete,

Welcome to the forum, we're glad you found us too. Watch and wait is a good time to do some research on various options and symptoms at a comfortable pace. Members on this forum will help you out with any and all questions you may have.

Since your balance issues responded to steroids, there is a decent chance that Motrin (ibuprofen) will help as well. They both suppress inflammation, which often causes symptoms. I found that ibuprofen was helpful for ear pressure and fullness; I haven't had significant balance issues, so I can't really comment on them specifically.

Your question about getting the other side to compensate is interesting. That happens within months after surgery, because surgery will take out the balance nerve on the AN side. Otherwise, though, you can sometimes have disrupted balance nerve function on the AN side that persists, and doesn't really clear up on its own. As you will soon discover is the case with most AN related issues, results vary over a wide range for different patients.

As for exercises, they range from simple head movement routines, to using a Wii Fit (http://anausa.org/forum/index.php?topic=7919.0), to just recently, stand up paddle board (http://anausa.org/forum/index.php?topic=8379.0). What are you up for?

I think hearing aid results depend a lot on both your level of hearing, and your word recognition score. They can compensate for low level very well; they are some help, but not as much, for poor word recognition. My hearing is about 50 db down, but I get about 85% word recognition, and my hearing aid is working well for me.

Steve

[Jim Scott]

Hi, Pete ~

Welcome to our group, although I'm sorry you had to receive a diagnosis of an acoustic neuroma.  We're about the same age (I'll be 66 next month) but my AN experience was quite different, making my ability to answer your pertinent questions somewhat limited.  That being the case, I'll defer to others with better insight into a situation like yours, although I can state from experience that Motrin does help with swelling.  Other than that, I'll wish you all the best and trust that some of other members can offer you some more useful information. 

Jim

[HCSTARWIND]

Hi Pete-- and welcome to the forum. You will find invaluable support and answers here on the forum. I just really sorry you have to join us.

I am also in the Watch and Wait mode. I am now staying in Alexandria, VA with my family. I will be seen tom. at Johns Hopkins Tom. for a 3 consultation. I am having more neurological symptoms now.

As far as the dizziness and imbalance issues. It does get better with time. I'm not as dizzy now. Just occ. imbalance issues. My tumor is also small like yours.  I think you will find that it isn't always to size of the tumor that matters. If you become more symptomatic then I would encourage you to seek further consults. Get as many as you need to feel comfortable.

I do believe you will feel better on the prednisone. I did and my hearing actually improved. I gained 15 lbs. though!

Take care and keep in touch. Helen

[Rivergirl]

Hi Pete,
Welcome.  I have not tried or heard that motrin helps but it does boast to reduce inflamation so maybe.  Anything is worth a try, if it helps than do it but motrin comes with its bad side too.  If you take motrin regularly it can start to erode your stomach lining so be careful, always take it layered with food to reduce this risk.