Newly diagnosed

[cakulmom]

Hello,
I am new to this Forum, but enjoying it immensely.  As an online retailer, I love being able to find whatever I need on the Web. 

I was just diagnosed in July with a 2cm acoustic neuroma.  Oddly, my only symptoms were an ongoing balance issue (attributed to the stress of my then 23-year-old being diagnosed with a glioblastoma in Jan. '09), constant tinnutis, and then this past Spring, a feeling of fullness.  Now, of course, I do notice the slight hearing loss.  Didn't really do much about any of it until recently as I had bigger fish to fry.

Having surgery Nov. 30.  I was offered the gamma knife option by my son's neurosurgeon, but don't like even the 3% chance of possible malignancy, nor am I crazy about radiation.  I opted for the team at Loyola (Chicago), Drs. Leonetti & Anderson.  Needed to find a long enough period when I had time for the recovery as my work involves lots of lifting and moving stuff and travel around the country.  Hoping 6 weeks will do it as I have a trade show booked for Jan. 16!  Hence, the delay until November for the surgery.

I guess I should be more frightened or depressed or something, but after what we've gone through (and are still going through) with the GBM, this seems kind of in the no-big-deal category.  BTW, I am 60 years old and in pretty good overall health.  And our son has had no recurrence, still on chemo, but back in medical school.  So life is good.

My only problem recently is the balance thing which seems to worsen and then get better, and recently, a fuzzy taste at the top of my tongue which also comes and goes (AN or not related? I don't know).

Has anyone thought about learning ASL (American Sign Language) post-surgery?  I don't relish depending on only one ear at my age, having had a profoundly deaf elderly father who was unable to communicate in his last years.  Wondering if my "elderly" brain can learn this?

Best of luck to everyone.  Our familly are staunch supporters of the American Brain Tumor Association (abta.org), so I try to keep up on all the research out there.

[jaylogs]

Hi there and welcome to our little club! I am sorry you had to be in this particular club, but you'll find no better group of people!!  This board is a great place to find information, vent, or just knowing you are not alone and not crazy with some of the things you feel/will feel! Your story is a very familiar one to a lot of us on here, so I know how you feel! I am sorry you had to go through all that with your son, I can only imagine how that all was. I am glad he is back in school and getting on with life, life is INDEED good!  I am glad you have already made your decision to have surgery, for me that was the hardest and most stressful part.  As far as your recovery time, six weeks for some people is about on par...for me I could have used a good three months (I was out of work for 2 months recovering so returning was kind of grueling for a while there).  So it all depends on how your surgery goes as to how much time you need to recover.  LIke you, my balance seemed to be getting worse as time went on, that's the balance nerve getting the life choked out of it by your AN.  The good news for that, possibly, is the more you have to go through that BEFORE surgery, the less you may have to deal with it AFTER surgery as the other good balance nerve will hopefully have started compensation for the damaged one.  But one never knows until it's all over with.  What kind of sugery are you going to have? (middle fossa, translab, retrosigmoid?)  It sounds like by your last question about sign language you are already expecting to lose your hearing, so usually that's translab.  I am glad you have a very good positive outlook on all this, it definitely helps...especially since you have to wait so long for your surgery!! Anyways, sorry to ramble on so, but please if you have any questions between now and then, please don't hesitate to ask!! Good luck and take care!
Jay

[Desilu]

Hi Cakulmom,

So glad to hear that you have a positive attitude about this whole situation.  Don't know where you are in Chicago but we are going to have a Local Support Group Meeting on Sunday, August 15th at the Downers Grove Public Library from 2-4 pm. The meetings are very informative and it's nice to meet with others who totally understand your situation. If you would like more information or would like to talk, please send me a personal email. My recovery from surgery took a total of 8 weeks from start to finish (back to work, full time) so 6 weeks is not unreasonable. I wish you the best on your AN journey. Ann

[cakulmom]

Thanks, all.  I'm having retrosigmoid surgery.  Insofar as hearing goes, I just feel if I don't expect much, I can't be too disappointed.  I've learned not too expect much when it comes to brain tumors cause the suckers are always surprising you--in sometimes terrible ways.
Would love to come to the support group in Downers Grove (I am in the western suburbs), but not sure of my schedule yet.  I'll contact you directly if I can make it.

What are your thoughts about the neuro-oto team approach vs. neurosurgeon alone doing surgery?

[pjb]

I am not one for words of wisdom or much of a source of information I just wanted you to know that I had both and there are numerous others that had a team as well. I know that the neurosurgeon of course is there to open and the neuroto...is usually the expert removing the tumor and then the neurosurgeon closes.. Why and if it is better with both I cannot answer that hopefully the others will respond with their great words of advice and be able to explain it better.

My thoughts and prayers are with you,

Pat

[Jim Scott]

cakulmom ~

Please accept my welcome to the ANA website discussion forums - and thanks for posting!  I'm sorry you have to deal with an acoustic neuroma diagnosis after your son's successful struggle with a malignant brain tumor.  However, as you know, ANs are almost never malignant and can be successfully treated.  See my 'signature' (below) for a brief synopsis of my AN experience. 

Your symptoms are typical for an acoustic neuroma, which begins on the sheathing of the eighth cranial nerve and if left unimpeded, will gradually compromise the nerve, rendering it ineffective.  In time, the brain learns to compensate for the loss of input from the 'hearing' nerve and depends on the working nerve in the unaffected ear.  Most AN patients regain enough balance to be, as I call it: 'servicable'.  I no longer need to grasp a handrail when ascending or descending stairs and my balance is quite good, if not what it was prior to developing an acoustic neuroma.  With AN patients, the trigeminal nerve is often involved to some degree, which accounts for the sensations in your mouth.   I have a very small 'numb' spot on one side of my tongue, which is basically inconsequential at this point because my sense of taste, once almost destroyed (triggering a subsequent severe lack of appetite and resultant 30+ lb. weight loss) is excellent these days. The trigemial nerve can also cause problems with facial mobility, including the eye.

Losing the hearing in one ear can be traumatic and frustrating.  My hearing was lost very gradually as my AN grew (unbeknown to me) so I've been able to cope quite well being SSD (Single Side Deaf).  However, there are BAHA (Bone Anchored Hearing Aids) available that can do much to restore the lost hearing for AN patients. They have some limitations (doesn't everything?) and are pricey, although medical insurance often will cover the cost.

You seem to have most of your 'ducks in a row' concerning your upcoming AN surgery.  I'm sure you're in good hands and will have a successful surgery and a rapid, complete recovery.  We're here to inform and, mostly, support you as you work your way through this journey.  We don't second guess or judge anyone and we understand the very specific problems an acoustic neuroma can bring into our lives.   We all wish you the very best outcome and will be here to cheer you on.  Please come back, often.

Jim

[LisaP]

cakulmom,

Hi and welcome,  My brother was dx witha glioblastoma back in September 07 and I was dx with the AN in March of 08.  Since my dx, I have come across other family members that have some kind of brain tumors  Glad to hear that your son is doing well.   I continue to W&W with my next MRI in Oct. of this year.  Welcome again to this wonderful forum for support and knowledge.


Lisa P

[CHD63]

Cakulmom .....

Adding my welcome to this forum of caring, supportive friends.  My AN was about the same size as yours and we are in the same age group so I can empathize with some of your emotions.

I had my retrosigmoid surgery at Duke University and had excellent results.  I pray you will do equally well.

Thoughts and prayers.

Clarice

[cakulmom]

Thank you all, so much. 

Another thing I love about the internet....there are so many caring, supportive people out there we are now able to reach.  Glad to know that the funny stuff on tongue might actually be related to this thing in my head.  I tell people I feel like a drunken sailor on a rolling ship!  Son home for HIS MRI on Thursday--he thinks I shouldn't be driving; I told him, it's really only a problem when I'm walking, not sitting.  Oddly enough. 

First surgery on the docket--getting more of my nose sliced off...basal cell carcinoma...Mohs surgery on deck for September.  Never ends.  At least I reached my $7500 oop, so insurance now gets to pay!  There is always a bright side to everything!

[Desilu]

Hi Cakulmom,

Attitude is half the battle, keep it positive! You are doing great. Hang in there. We are here for you. Ann

[leapyrtwins]

Don't know where you are in Chicago but we are going to have a Local Support Group Meeting on Sunday, August 15th at the Downers Grove Public Library from 2-4 pm.

I'll be at this meeting myself - the topic is the BAHA and it's being presented by one of my neurotologist's colleagues from the Ear Institute of Chicago.  I'm going to be available to show people my BP100 and answer their questions - just an extension of my Cochlear volunteer duties and another great opportunity to spread my love of the BAHA 

Am looking forward to seeing you there, Ann - and hopefully meeting you, Cakulmom.

I'm also hopeful that Linda (icebowlpacker's wife who just had surgery a few weeks ago with my doc) will be in attendance.  She's doing great and I'd love to meet her.

Jan

[free2be]

cakulmom,

It is good that you have a good attitude and appear strong despite you and your son's conditions. I wish you both the best.

This thread has brought up an interesting issue: ANs and glioblastomas in the family. My mother had a glioblastoma multiforme. I've tried to ignore this, given my own tumor, knowing they are entirely different animals. I have wondered though if there could be any issue with irradiating the AN and subsequent malignancy. The incidence of malignancy in the literature is so infinitesimal that I can't really consider that remote possibility. But, I have wondered if there could be any predisposed genetic link that could be a factor.

Has anyone done any research on this?

Connie

[james e]

Welcome to your new on-line family. I am your age. In December 2009 I found out I had a tumor and had translab surgery in March and I am SSD on the right side. Eight months before my tumor was discovered, I had a stroke and a hole was found in my heart. I had surgery in May to close the hole. In spite of these set backs, my recovery has been remarkable. I am different than I used to be. I have trouble telling people what I want to say...word finding issues...but all of my friends know about my problem, and they still love me, and they know I have this problem. Then the tumor. Started losing my balance, throwing up, ear got full, lost a lot of my hearing. They all still love me. Had the surgery. My face works like it is new, but my balance went all to hell...but they still love me. SSD is not the worst thing in the world, but I got a BAHA, and it is a life changer...the grandkids think it is pretty neat, and everyone wants to know about that thingy on the side of my head (short hair). I stagger a lot. Took lots of physical therapy and it had limited impact. Now my neighbors and friends know that the guy staggering behind his dog cannot tell you what he did today, is okay...just talk into that little thingy on the side of his head, and he will talk back.

I don't think you will need to learn sign language. The BAHA is a life changer. You also said you are in good shape. I am a weight lifter, eat right, no alcohol, no smokes, and believe my excellent physical health is one of the key reasons my recovery has been so good. Get in the best physical shape of your life. Loose any extra weight. Stay on this site and keep us informed of your status. All of the people here really helped me, and I am also here to cheer you on.

Just went to get my drivers license renewed, and now I have a BAHA restriction on my license!

[Lizard]

Welcome to the forum, I didn't get a chance to post so everyone has pretty much said everything so I just wanted to extend my warm cyber welcome to you as well.
Keep the faith,
Liz

[cakulmom]

It is heartwarming to read about all the support from those in the Forum.  After speaking with my son this past weekend when he was home, we've decided that since I received 2 very different opinions: one, definitely surgery; one, go for gamma knife, I should go for a 3rd opinion.

Can anyone recommend another expert who will not push one way or the other?