25-year Survivor

[Deb_S]

I'm new to this forum and while I personally have not experienced AN, my mom has. She had a very large AN surgically removed at the age of 67 (the neurosurgeon told us it was the size of an orange!) She is now 91. I found this board while searching for information that could help her. She has done amazingly well over the past 25 years despite complete hearing loss, facial nerve damage, and vision difficulties on her left side. She managed to preserve some sight in the affected eye until about a year ago at which point there was basically no vision left and she now wears an eye patch (we tease her about her pirate-like appearance). After having sporadic issues with dizziness/vertigo for many years, it is now her biggest ongoing problem, and from what I have read it is most likley attributable to AN, likely exascerbated by the complete sight loss in one eye.

Unfortunately, at the time of her surgery we weren't given much information and there was no follow-up once the surgical recovery period was over. She was basically sent off to live her life as best she could, and I think she did a good job of it. Over the years her GP has ordered a couple of scans when the dizziness flared up, but no tumour re-growth was ever revealed. However now my mom is now so wobbly on her feet that her mobility is severely limited and my family and I fear for her safety. It seems inevitable that she will fall and injure herself sooner than later. She lives semi-independently in her own quarters in the home of my husband and I, and is fierce about maintaining that independence. She constantly curses what she calls the "wooly" feeling in her head, which is often accompanied by hearing loss in her good ear and sometimes a feeling of nausea.

I'm not sure what I was hoping to gain from posting this -- maybe just some empathy from people who can commisserate with this situation. But perhaps there are resources out there that someone could suggest. We are located in Canada, near Vancouver (I visited the Canadian ANA site, but there wasn't much info there). I want my mom to continue living the life she chooses, but fear that a nursing home may be the only viable option soon. Her health is otherwise generally good and it's frustrating to see her struggling. Any and all suggestions would be welcome.

[Brendalu]

Deb,
Welcome!  Your Mom sounds like quite the lady.  You need to read our Good Morning thread...................pirates and all! I hope that in reading through some of this you will find answers for your Mom and yourself.  Good luck.
hugs,
Brenda

[leapyrtwins]

Deb -

I can't even imagine 25 years!  I'm heading towards my 1 year surgery date and I thought that was a long time

And at the age of 67, no less.  Amazing!

I wish I had some suggestions on where you could take her for medical help, but I'm sorry to say I don't.  Hopefully some others here will.

Wishing her the best,

Jan

[Kaybo]

Hi Deb~
I don't have any specific help to give except that we just had to put my grandmother in a home.  A couple of years ago, we had to put my dad in assisted living (after keeping him home longer than we should have) for Alzheimer's and then were going to have to move him to an A's unit -- he passed away the week that we were to move him.  All that to say that it is VERY stressful to decide what to do in the 1st place, but even worse then to have to move them.  When it came time to make that decision for my grandmother, we heard of a "private group home" here.  We live in a smaller town and were surprised to find out there was some (3) here.  It has 3 little ladies in a beautiful home with a caretaker 24/7 and a nurse who is a phone call away -- it is WONDERFUL (& it is cheaper than what we would've paid in a nursing home)!!!  The best thing is that she is there for the long haul -- they will not boot her out if her conditions worsen.  I would encourage ANYONE to check into this to see if there is something comperable in your community.  As with any decision concerning long-term care, check everything out and ask LOTS of questions.  I know that doesn't help with the AN stuff, but I hope it can help some.  If you have any other questions, please feel free to send me a PM.
Good Luck!
K

[HeadCase2]

Hi Deb,
  Thanks for sharing your mom's story.  We don't hear about many people who had their AN treated that long ago.  Sounds like she's a fighter.
   As far as the balance issues, would it be worth having her evaluated by a Physical Therapist versed in Vestibular Retraining?  They may be able to help her compensate for the loss of vision in one eye and its affect on balance. I can tell you that vision and balance are interrelated.  Many of us on the forum had verstibular retraining after treatment for AN, since An treatment can result in the loss of one of the vestibular nerves.
  Here's hoping your mom can continue to maintain her independence in the way she wants to.
Regards,
  Rob

[Jim Scott]

Hi, Deb, and welcome.

You'll receive lots of empathy here.  Unfortunately, we're not physicians and so, we can only offer practical advice and suggestions as to how you can help your mother.  You may wish to determine whether she has had a regrowth of the original AN - or a new growth (it happens).  I seriously doubt a surgeon would attempt to excise an acoustic neuroma on a patient of your mothers age (91) but non-invasive radiation might be considered.  Even if nothing were done, which is the most likely scenario, at least you would know the cause of her imbalance.  Vestibular therapy (as Rob mentioned) can be quite effective in resolving balance problems, so you may wish to consider this as a possible solution to alleviate your mother's disequilibrium problem.  You may need to find a different PCP (Primary Care Physician) that will acknowledge your mother's balance issues/AN history and act appropriately in order to find your way to this therapy (and an MRI scan). 

That your mother underwent surgery for an acoustic neuroma 25 years ago, at age 67, is interesting.  That she has had to deal with long-term post-op complications is unfortunate but typical of how most AN patients fared at that time.  Surgeons cut out the AN but cut or damaged vital nerves and that was accepted as 'standard procedure'.  Follow-up was rare as MRI facilities were scarce and few physicians knew much (if anything) about an acoustic neuroma.  Your mother's experience is probably pretty typical of AN patients of that era.  Today, we have MRI machines almost everywhere and much more is known about this condition. 

My neurosurgeon debulked my large AN, then it was radiated.  I had few complications but undergo semi-annual MRI scans.  I'm still under my neurosurgeon's care as well as being seen by my PCP on an annual basis.  Little is left to chance and I like it that way, especially considering the fact that the approach used to address my AN was effective and I was mercifully spared any real complications.  My life is back to normal with only the slightest adjustments and those are invisible to others and have no negative effect on my quality of life.   I'm extremely grateful to God, my doctors and the fact that I developed an AN now and not years ago when treatment was, frankly, a bit primitive and complications were all too common.  I salute your mother for her ability to surmount the difficulties that arose from her surgery so long ago and the fact that she struggles for independence at her age   However, in light of her balance problems, your concern for her falling and the often dire results that occur when that happens to someone her age, are valid.

I trust these forums will be useful and aid you helping your mother deal with her balance problems.  That you are seeking help for her is admirable.  If we can assist in any way, we're pleased to be able to do so. 

Jim
 

[TP]

Deb_S

Thank you for sharing your Mother's AN experience. At 91 some balance issues may be related to other health matters, however, my grandma ran her own business until she was 92 and finally at age 99 went into a nursing home and she is still alive at 102. She had balance issues in her early 90's and she did aerobics for older folks. It helped her a great deal as she has very bad vericose vains as well. Now she is in a wheelchair but hey, she is 102 years old. 

As far as a nursing home. My uncles really didn't want her to go into a home. She was living in her own home (although her home was not in good condition) and she was still fairly active. She had a slight stroke and the family finally decided she needed to go to a home. Well, once she got into a nursing home she actually improved. She was sleeping in a warm bed, someone was preparing her meals and she even had access to a piano to play plus she was getting more visitors. As far a choosing a nursing home it can be very difficult for the family to come to that decision. I hope everything works out well for your mom and your family.

[Deb_S]

Thanks everyone for your words of encouragement and support. Sorry I disappeared from the forum shortly after my first post -- I was away on a much needed break while my sister cared for my mom. I have returned home to find the situation as depressing as when I left. It's so sad to see my mom, whose mental faculties are still completely sharp, struggling to cope as her body fails her. While the dizziness (I like the term "brain fog" because it sounds totally like what she describes) has, for the moment, subsided somewhat, in the past 4-6 weeks the hearing in her good ear has become more and more problematic and she continues to feel nauseated. She has seen two doctors plus an emergency room physician recently and none can detect any obvious problem; they say she's simply at a point where her body isn't working well any more. One doctor felt the after-effects of the tumour are significantly contributing to her problems but could not recommend any treatment for someone of her advanced age and overall condition.

So... it's looking like my mom is going to need a change of residence where she can have ongoing nursing care sooner than later. She's definitely not able, at this point, to attempt any exercises that might improve her symptoms or embark on more rounds of testing; she simply can't cope with anything like that. I'm sad about it -- she has always been SO independent -- but I'm heartened to hear the positive stories about nursing care that some of you have shared. I am personally thinking that she would be relieved not to have to keep trying so hard to do the things she feels she must do, and that having ongoing care would reduce her stress levels. Now it's up to one of my family members -- most likely me -- to have the difficult conversation with her as to whether or not she feels ready to take that step. I suspect she is, and that she will feel relieved to discuss it openly; now I just need to overcome my own fear (shared by my sister and brother) of broaching the topic. We don't want her to feel like we have anything but her own best interests at heart and given that she has shared strong opinions in the past about families who "dump" senior family members in institutions, we're understandably nervous as to how she will react. But nervousness aside, I think the time has come to at least talk about it.

My mom's story might come across as very sad, but I recently feel like I've made peace with the situation. My mom has lived a long, full life despite difficult circumstances, and rather than mourn the fact that she's nearing the end of her days, we should celebrate her achievements, especially given the challenges she has overcome.

To be continued...

[Sheryl]

Deb - "The Talk" may go better than you anticipate.  Both of my parents are fiercely independent in their mid-80's.  After extensive memory testing for both of them (we were beginning to notice things happening), they were BOTH diagnosed with the early signs of Alzheimer's.  My brother arranged to be there for "The Talk" and it went very well.  We have begun our visits and tours of facilities and are weeding out potential living arrangements.  Please keep us posted.
Sheryl

[Jim Scott]

My mom's story might come across as very sad, but I recently feel like I've made peace with the situation. My mom has lived a long, full life despite difficult circumstances, and rather than mourn the fact that she's nearing the end of her days, we should celebrate her achievements, especially given the challenges she has overcome.

To be continued...

Deb: 

I concur that your mother has not only lived a long and full life, a major achievement, but has overcome a multitude of challenges, yet another notable achievement.  Your attitude toward your mother's (deteriorating) situation is both moving and yet, realistic, a combination that is fairly unique in these situations.  I admire your ability to be empathetic and concerned toward your mom, yet retain the ability to remain clear-eyed regarding what is best for her at this stage of her long life.   Your love for your mother is abundantly apparent and with your love and concern coupled with her character, I think you'll both be fine about what comes next.

Thank you for sharing your story with us.

Jim