Recently Diagnosed

[fairwynne]

Hi,

I am a 42 year old female who was recently diagnosed with an intracranial Schwannoma at the base of my RT cochlea. I was seen by Dr. Larry Lundy at the Mayo Clinic in Jacksonville, FL yesterday. The lesion is small right now (1mmX3mmX2mm) and I am having balance testing to determine whether or not the vertigo I am having is related to this lesion. I also have tinnitus but have learned to live with it. I am disappointed that even if I have surgery my hearing cannot be preserved due to the location of the tumor and will most likely lose 100% of my hearing in that ear no matter what course of action I take. Is there anyone else out there who has had experience with this same problem? Also, what should I expect for the balance/vertigo testing? Does surgery get rid of the vertigo?  I greatly appreciate any and all information any of you could provide.

Patty

[Pam Fraley]

The VNG (balance/vertigo) test is not bad at all.  You have to follow some lights with your eyes and they see how everything reacts.  Then you have to look certain ways and say works with each letter of the alphabet.  They will have monitors hooked up to see how your brain is responding to all of this.  It's all in how your eyes and brain react.  I thought I would have to balance on one leg or something but it is nothing like that at all.  Very painless!!

Good Luck!

[jaylogs]

Hi Patty! Welcome to our little club! Sorry you had to be here but this is a great place for all sorts of support and information! I know this can be a bit intimidating having that lil bugger in your head, but try not to get too freaked out about it.  Somewhere on this forum is a thread with a link to a great article about how the balance system works.  Do a search and you should be able to find it.  As far as the vertigo and balance, these things will in time mellow out.  As the balance nerve gets compromised by the AN, your balance nerve in the other ear will start to compensate. There's no magic number of days that determine how long that will be.  I am getting close to 4 years post op and I still have minor balance issues, and probably will for the rest of my life.  The surgery itself, should you choose it, will not eliminate the problem as they will be cutting out that balance nerve when removing the tumor, hence the whole compensation thing I explained about.  In fact, most people will have MORE balance issues after a surgery if they haven't had much in the way of balance issues because the other balance nerve hasn't compensated yet.  Your tumor is very small right now, almost an infant in the grand scheme of things, so you have a LOT of time to explore your options besides surgery (ie: gamma or cyber knife).  Others choose to watch and wait, it all depends on your personal preferences.  We are here to help in any way we can. Take care and good luck!
Jay

[Chances3]

Hi Patty,

Sorry you have a AN.  This is a great place for information, and to speak with others who are a little further down the road than you.  It is also a place to let out some steam because you can share with people who truly understand what you are going through.

I want to tell you a little about my experience.  I also had a small AN, it was on my 8th cranial nerve deep inside near my brain stem.  It was wrecking havoc on me, and I was having full spin vertigo attacks 2-4 times a week, it was rather disgusting.  I was not in a postion to wait, so I decided to have surgery.  The surgeons used the middle fossa approach because I was a good candidate to have my hearing preserved.  My hearing is pretty good, and I am grateful for that.  They severed my vestibular nerve, and it took me a long time to get my balance back.  Unfortunately, after 3 years the balance is not 100%, but I have no regrets.  The vertigo attacks eventually went away, but that took almost 2 years to happen.  If you decide on surgery, have a look at the middle fossa approach, it might be the best procedure for hearing preservation.

Whatever you decide, I highly recommend to learn as much as you can, so that you can make an infomed decision that you can live with the rest of your life.

God Bless.

[fairwynne]

  Thanks so much for all of the support! I will continue to read the many posts and great resources available throughout this website.

Again, thanks for your words of encouragement and support.

Take Care,
Patty

[robinb]

Hi Patty-

Since your hearing is good, if I were you I would move more quickly as if you go the GK or CK route, there is a higher chance of hearing preservation. Most of the time, whats lost is lost for good.

You can see link to my treatment journal below. Feel free to PM me if you want more details.

[nftwoed]

Hellp Patty;
   I'm sorry to read about your hearing and surprised! Your AN is so small. Where is the AN located?
   Re, balance testing; If most Mayo Neurotologists are the same, I would expect the tilting table test where they would put you in a harness and have you stand on a table which tilts. In general, the more the falls and ankle movements, the greater your vestibular loss.
   Re, surgery and true vertigo, yes, it should reduce that to at least a dizzy state. The severity of that is impossible to predict.


Hi,

I am a 42 year old female who was recently diagnosed with an intracranial Schwannoma at the base of my RT cochlea. I was seen by Dr. Larry Lundy at the Mayo Clinic in Jacksonville, FL yesterday. The lesion is small right now (1mmX3mmX2mm) and I am having balance testing to determine whether or not the vertigo I am having is related to this lesion. I also have tinnitus but have learned to live with it. I am disappointed that even if I have surgery my hearing cannot be preserved due to the location of the tumor and will most likely lose 100% of my hearing in that ear no matter what course of action I take. Is there anyone else out there who has had experience with this same problem? Also, what should I expect for the balance/vertigo testing? Does surgery get rid of the vertigo?  I greatly appreciate any and all information any of you could provide.

Patty

[RachelSta]

Hi Patty,
I'm sorry to hear about your diagnosis. I had surgery 2 months ago to remove my AN (about 1.2 x 1.6 cm at removal. Prior to that,I had tue vertigo for about 2 weeks in February which then reduced to balance issues (couldn't walk in a straight line, had a hard time on uneven surfaces, etc.).

After surgery and doing my vestibular exercises, I now have just about no balance issues. I do not feel dizzy at all. If I lose my balancei have a little harder time regaining it and I don't do so well turning to look behind me on my bike - I need to get a mirror.

Like you, I'm 42 years old. I was in great shape prior to surgery and am working to get back there. Taking a month off from exercising really gets rid of a lot of conditioning!

Good luck.

Rachel

[It is what it is]

Patti, welcome to the list and I am also sorry you are experiencing all of this.  I had a small tumor and was able to preserve my hearing with middle fossa surgery at House in L. A.  If you send your MRI and hearing test, they will consult with you for free and give you the percentage chance of saving your hearing if they do surgery on a tumor that small.  Let us know how things progress for you.  karen

[fairwynne]

Thanks Karen I truly appreciate your suggestion.