Just been told I might have an Acoustic Neuroma

[Sandyrat]

Hi,
A few weeks ago I had a CT for migraines.  A small mass lead to an MRI.  My neurologist said there appears to be something that's about 3mm by 8mm, and that it's possibly an acoustic neuroma or an aberrant vein.  I have my first appointment with a neurosurgeon in a month at Johns Hopkins in Baltimore.  Two other women in the past on my mother's side of the family had benign brain tumors (unknown what type, though), and I've even had a tumor on my arm (but can't remember what it was called) that I was told I might get in other places.  For these reasons, I preparing for it being an AN.  So my question is, what do I expect?  What medical treatments, and in what time frame?  From what I've read, mine is fairly small.  But they grow, so what kind of time frame am I looking at?  Can expect it to change my life, now or in the future?  Any insightful comments would be welcome, because I'm a wee bit stressed about the whole thing.  I'm also a little frightened that I have neurofibromatosis, too.  Thank you!!!

Sandy 

[jamie]

Hi Sandy

These tumors usually grow very slowly, and yours is small. It's called a schwannoma, in people with nuerofibromatosis, it's called a neurofibroma. You will probably be given three options, 1. watch and wait- having serial MRI's to monitor the growth rate, some actually stop growing on their own for a long period of time; 2. radiosurgery- precisiely focused beams of radiation that scramble the tumors DNA, causing it to stop growing and shrink over time; 3. surgical removal- there are a few surgical approaches used, depending on the size of the tumor, and whether you still have good hearing or not.

With radiosurgery and surgery, tumor control rates are about the same. With radiosurgery, there is less chance of nerve damage resulting in hearing loss or other issues, but there is still a chance. With surgery, the tumor is usually removed immediately, however there are more risks of complications and nerve damage, and a slight chance they may not remove the tumor 100%, in which case you can always have radiosurgery on any remaining tumor to stop it's growth. Both options are viable, and both have pros and cons. If you are considering radiosurgery, check out www.anarchive.org , it has alot of patient stories and info on myths and misinformation you may encounter on your new journey. John Hopkins is a facility that practices both treatments, so they are probably a good place to go for unbiased opinions.

I had CyberKnife radiosurgery for my schwannoma, which is on a lower cranial nerve than an AN, but pretty much the same thing.

Good luck, don't panic, and do your research. You'll be fine.

As for neurofibromatosis, there are two kinds. NF-1, which is what the elephant man was thought to have, is usually diagnosed during childhood. It is very rare and symptoms include multiple nerve sheath tumors on many parts of the body, multiple dark large round or oval birth marks, freckles on your armpits or other skin folds that usually are not exposed to sun, bone deformities, small brown tumors on the iris of the eyes called lisch nodules, and sometimes learning disabilities. NF-2 is also rare, it's completely different from NF-1 and the main symptom is having an AN on both sides.

[russ]

Hi Sandy
  Seems there's little doubt you need at least a closed tube T-3 weighted MRI to visualize the brain well. C-Scans are not so goodl at detecting ANs and have been known to even miss some as large as 1.5 cm.
  Re: The arm tumor and stated potential for others similar, I would study a bit on NF-2 and Schwannomatosis. Especially if under 30 year old. Of course the odds against you having NF-2 are great! The spinal tumors associated with NF-2 are also called "neurofibromas". I've some of those.
   Not sure if this link still works. It is by memory..http://www.nf.org/
  Seems a good time not to get pregnent if you are condidering this.
  Russ ( NF-2 )

[Sandyrat]

Thank you for the posts 

Russ,
  As a matter of fact I am under 30, 27 to be precise.  Does that increase my risk of NF-2?  I am trying to contact the surgeon and hospital where I had the arm tumor removed (1993-ish) to find out what it was called. Is Schwannomatosis a different disorder than NF-2?  And does NF-2 have similar exterior symptoms as NF-1 (I have only one VERY light brown spot the size of a quarter on my stomach; and what I affectionately referred to as an 'eye mole' in the iris of one eye, which from what I've read might actually be a lisch nodule).  Reference pregnancy, I had been tentatively planning on starting a family at the end of 2006.  What are the problems/risks associated with AN/NF and pregnancy?  Thank you!!!!

Sandy 

[jamie]

Age isn't a risk factor, it's something you're born with, but you are usually diagnosed at a younger age, usually in childhood with NF-1. Not sure about NF-2, but NF-2 shouldn't cause an arm tumor, just CNS tumors (brain/spine). Schwannomatosis has recently been identified possibly as a third form of NF, there's not alot of info on it yet I don't think. As for your birthmark, you would likely have many with NF1, but nothing is set in stone, here's a link:

http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=402&topcategory=Children

The risk associated with pregnancy is that if you have a form of NF, there's a 50/50 chance your child will too.

[Sandyrat]

Rats,  I'd prefer better chances for any future children I'd have.  Thank you for all good info, Jamie.    My mother's side of the family get's a lot of benign tumors (my arm, my mother's toe, a 2nd cousin with an unknown brain tumor, and a great great aunt with an unknown brain tumor) so there's a possibility there's SOMETHING in our genes; yet, we lack all the other signs of NF.  Maybe is the Swannomotosis (sp?) thing, or even something else.  Either way,  I will definitely follow up on the recommended websites, and I'll stay current with this forum for new information.  After I get this all figured out, I'll post what the results were so I can add to the collective knowledge in this forum.  By the way, this site is wonderful!

Sandy   

[jamie]

No problem Here is a link with some info on schwannomatosis:
http://72.14.207.104/search?q=cache:kWcxIyR-Dw4J:www.ctf.org/pdf/brochures/schwanno.pdf+schwannomatosis+symptoms&hl=en