Any advice would be appreciated....New here

[LissieP]

Hello everyone,
I'm glad to have found this site.  I am hoping to find some answers.  We just found out that my mother in law has been diagnosed with acoustic neuroma vs. meningioma some time ago.  Unfortunately, she never told my husband and he just found this out.  Apparently this has been brewing for some time.  She is starting to have trouble with her balance and is falling.  She has always been hearing impaired, since birth, but it has obviously gotten worse.  It also seems that perhaps her cognitive function is declining some.  She is 72 years old and from what I understand her doctor doesn't feel she would survive surgery.  She had a MRI in 2004 that showed the tumor to be 21mmX14mmX14mm.   She has just had a repeat MRI last week showing the tumor to be 34X24X29. 
My husband said there are no plans to do radiation or anything, says that the doctor feels that the treatment would be worse.

Could anyone tell me what this means for my mother in law?  I don't understand the prognosis and the course we can expect.  We don't know what to ask, what to do, or how to help at this point.  So, any comments and advice would be so appreciated.  thank you so much.

[sgerrard]

Hi LissieP,

I think my advice would be to contact the pros. Growth of 10mm in 4 years is a fair amount, and it would seem there is a good chance it will grow more. Eventually even a benign acoustic neuroma can become a serious problem, if it grows big enough to start compressing the brainstem.

One good contact would be the House Clinic in Los Angeles. If you can send them a CD of the MRI (or a set of films), they will do a free evaluation. They are one of the best places in the country for acoustic neuroma treatment, with a great deal of experience and expertise in AN surgery. Contact them here:
http://www.houseearclinic.com/acousticneuromaconsultation.htm

Another contact would be one of the cyberknife doctors, who will often give free evaluations of MRIs if you contact them first. Cyberknife is a one kind of radiation treatment.
The web site is currently http://www.cyberknifesupport.org/about_the_doctors.html
After Oct 10th, it is supposed to change to http://www.cyberknife.com/

There are several other places around the country that you could contact instead. It may turn out that waiting and watching is the best thing, but I think contacting some experts and getting some additional opinions would be a smart thing to do.

Best wishes,

Steve

[Tumbleweed]

LissieP:

The bottom line is you should not rely on one doctor's opinion in deciding your course of action (or inaction). I agree with Steve that you should seek consultations with House Ear Clinic and with at least one radiosurgery doctor (I highly recommend Dr. Chang, who is included in the list of CyberKnife doctors that Steve provided a link for). Also, I would recommend you contact Staten Island University Hospital, as they will reportedly treat with radiosurgery tumors over 3 cm in size that most other facilities will not. (Most facilities rule out Cyberknife or GammaKnife treatment for tumors over 3 cm in size. SIUH uses FSR radiosurgery to treat much larger tumors.) Radiosurgery is widely regarded as easier and safer than surgery for elderly or infirm patients.

At the risk of speaking too bluntly, I'll say this: a 34x24x29mm tumor is somewhat large and the rate of growth over the past 4 years that you have reported is above average. If your mother-in-law's overall health is so poor that doctors expect she hasn't got many more years ahead of her before she passes, then "watching and waiting" may indeed be the best course of action. However, if she is expected to live quite a bit longer than that, doing nothing may not be the best option because the tumor may cause new symptoms (one-sided facial numbness or paralysis) and more severe balance symptoms (disabling vertigo or oscillopsia) that could be far worse than what side effects treatment might bring. An untreated and growing AN (not all ANs continue to grow) does have the potential to eventually kill, although western medicine has all but eliminated mortality as a risk -- provided the patient receives some form of treatment. The only way to assess the risk-benefit ratio for various courses of action is to consult several top professionals who are experts in treating ANs.

There is also a wealth of information available in posts on this board. Welcome. We're here to help with any other questions you may have and with emotional support.

Best wishes,
Tumbleweed

[LissieP]

Thank you both for your responses.  The biggest difficulty is that we live in different states.  My husband is with her right now and we're planning on moving her here within the next few weeks. 

I have a place to start now.  I appreciate it!

[Cheryl R]

Sorry to hear about your mother in law.     Does she have other health issues?      That would make a difference in how she could withstand surgery.           Is the dr that she has seen experienced with this type of surgery.    There are some which can diagnosis  it but do not have experience removing one or even totally understanding it.           The dr who does this needs to do this every week to really be experienced. 
There are people here in their 60's who have had this surgery with no long term problem.   There can be some long term after effects but most are liveable with.              I am a retired nurse and have seen older people do well with other types of surgery.            It all depends on their whole health history.                        Her cognitive issues could be from the tumor or other causes.
What state are you in?         House Ear Institute is good but there are other hospitals with a good reputation also. 
     It is a scary time for you and we wish you and your family  well with what is best for her.
                                                         Cheryl R

[Jim Scott]

Lissie:

I'm sorry to learn of your mother-in-law's AN and the fact that a doctor has basically rejected any treatment for her.  I have to echo the prior posters advice to seek other medical opinions.  Frankly, an acoustic neuroma tumor that remains untreated can lead to very serious problems, including eventual coma and death.  This is simply unnecessary in this day and age.  I was 63 (and in good health) when I had my AN surgically debulked and then treated with radiation.  I did just fine.  That is no guarantee that your mother-in-law will have the exact same experience, but at 72, she is hardly old enough to simply write off as inoperable. 

I know how difficult is is to deal with this kind of issue when you reside in another state - but I would try to do the best you can.  Your mother-in-law deserves to at least have a chance at treatment, not simply 'written off' by one doctors opinion. Please continue to research - this website is a trove of useful information - and feel free to ask whatever you need to know to help you deal with this trying situation.  We stand ready to help in whatever way we can with the understanding that we aren't doctors but we do have valuable, practical advice to offer and are very willing to share our accumulated, collective knowledge with you as you request it.

Jim

[leapyrtwins]

Lissie -

I'm with the others on this one.  Your mother-in-law needs another medical opinion.  She is not that old, and unless she has other health problems that are factored into her doctor's opinion, it seems logical to me that she should be treated for her AN.  As Tumbleweed noted it is somewhat large and it's growing fairly fast - especially based on her age. 

Jan

[LissieP]

Thanks again everyone.  She does have other health problems, history of strokes and heart attack, high blood pressure and so on.  I think once we get her here (Minnesota) we can get a better handle on what we should do next and see a doctor at U of MN or Mayo.  She is in Indiana right now and has been going somewhere in Indianapolis for this. 
My husband should be on his way home today and I can get a better handle on what is going on. I'm sure I'll have more questions.

Thank you all for the advice and welcoming community.  Folks like you make things like this a little easier!

[lugnuts]

Lissie,
Get another opinion.  I had an excellent phone consultation with the MD at House Ear Institute in LA.  He independently said the same as my neurosurgeon and H & N surgeon.  Your MIL shows growth; the surgery is scarey; 72 can be young.
JD