I need some information

[bfratis]

September 2006, my Mom had what was diagnosed as a stroke, after 4 months and a MRI, doctor said it was an acoustic neuroma, right ear.  She was already deaf in the left ear so this was very hard on her.  We did not know how to handle this situation and are still struggling to understand and to help her.  She still believes this can be fixed but doctor says "no" given her age and health.  Has anyone else had this happen in their family?  She is mad most of the time and seems to have mild dementia.  We have a nurse with her 24 hours a day but she hates having someone else in the house.  She is so unhappy and this family is trying to help her but nothing works.  Any suggestions?  We communicate via a dry erase board.  Are there any support groups for those left without any hearing at all after this diagnosis?  Thank you for any information you have.

[Larry]

So sorry your mother has to endure this.

Not sure which docs you are seeing but there are a number you may want to check out. Also get second opinions. You may want to tell us where you live because there are a diverse array of locations on this forum.

My advice would be to see a neurosurgeon about the AN to see how bad it is - whether it is close to the brainstem or not.

For the hearing. You may want to go to a hearing specialist as there are different types of hearing "aids". the traditional ones but they may not work on your mother. there are others around that work on bone conductivity. There are many posters with SSD (single sided deafness) who have devices like BAHA or Transear which give them back some hearing but work differently to normal hearing aids. Your mother would have to be tested to see if these will work. The test is pretty simple and straight forward.

Others will post but you may want to share some more detail to enable more specific advice.


Laz

[nancyann]

Wow - I feel for your mom, you/family.   This really stinks big time.   I agree with Laz wholeheartedly.   You need a super specialist to give the best advice
re: watch & wait, radiation, etc.  in order to save hearing on the right side (if at all possible).   I can't imagine what you all are going thru.
Definitely let us know where you're located, like Laz said.

Please, keep a peaceful heart....       Nancy

[bfratis]

Thank you for your suggestions, going to a neurologist will be our next step.  Her present doctor is a specialist in Otology and Neurotology and will do another MRI in the next few months and hopefully we will know more.  We live in the Sacramento California area. Thank you for be so understanding. 

[Sue]

How old is your mom?  I've heard of a woman in her 80's who had the surgery for this.  But, everyone is different.  Not a fun thing to have to deal with at any age, but really frustrating if you are higher up in the senior years.


Sue in Vancouver

[Captain Deb]

I would for sure aquire a copy of the radiologists report along with a copy of the MRI on CD and see what size her AN is before jumping to any conclusions about anything. The size and location are indeed major factors. Also where are you located?  Many of us here can recommend great specialsts and support groups in many cities if we know where you are.

Capt Deb

[bfratis]

I would for sure aquire a copy of the radiologists report along with a copy of the MRI on CD and see what size her AN is before jumping to any conclusions about anything. The size and location are indeed major factors. Also where are you located?  Many of us here can recommend great specialsts and support groups in many cities if we know where you are.

Capt Deb

  We live in the Sacramento, California area.  Thank you for any information you can give me.

[lori67]

I really don't have any medical advice to offer you that hasn't already been mentioned, but as far as support groups, the League for the Deaf and Hard of Hearing has chapters all over - I would imagine they have one near you too.  They have different programs available and probably some sort of support group for your Mom and maybe even for the family, as this is tough on everyone.

I know it must be frustrating.  My Dad was diagnosed with a small AN a few years ago and he's been watch and wait.  He also has Alzheimer's so he's not a candidate for surgery.  Fortunately for him, he has had minimal symptoms, aside from the hearing loss on one side.  When he started getting mad and frustrated that we weren't letting him drive, or when we had someone stay with him all the time, his doctor started him on a low dose of Prozac.  That seemed to help him deal with all the changes he was going through a little better.  Now, if the doctor would just give us a truckload for the rest of the family.....geez...

Good luck to you and your Mom.  I hope you find someone who is able to do what's best.
Lori

[OMG16]

Dealing with aging parents is difficult enough without having a tumor and deafness.  Your Mom sounds like she may be depressed due to this and I would talk to her Primary Care Dr and let him/her know what is going on and see what he/she recommends.  We have a son with a brain tumor and who has had a stroke and it is very difficult on the family members.  So please get a good support system in place and use it so that you do not get care giver burn out.  You need to take care of yourself first.
 
Why did they think she had a stroke?  What were her presenting symptoms and did they do a spiral CT or just a plain CT with and without contrast to see if she also had a small stroke.  Sometimes a stroke can cause these same symptoms along with the AN.

I can not give you advice as far as the AN goes but I would follow the advice of the other members on the forum.  They are all experts in the treatment of ANs.

Remember that we are all here to support you and help you through this.  Kisses to your forehead.    16

[Dealy]

Sorry to hear this has happened to your mom. My input and opinion only. I am an Nf2. I have had Single Sided deafness in my left Ear for 18 years until another tumor was found in my Right Ear in 2005. I had 100% Hearing at that time-now I am down too only 29% left in that ear. I had radiation a year and a half ago. I cannot hear unless I utilize a Hearing Aid which cost $2500.00 dollars. They are not cheap by no means and the cheaper models may do no good. I know what it is like too be practically deaf. People with SSD have no idea what this is like. So now your mom is not only dealing with the consequences of a Stroke (my older brother had one 4 years ago) she is too some degree deaf (apparently) and also dealing with an AN. Alot too deal with. You have not mentioned the sise of the AN. I am surprized that no doctor recommended removal if it caused or lead too a stroke. Their is another option for hearing called an ABR Brain stem which is implanted during surgery or in rare cases if the hearing Nerve can be preserved-a Cochlear Implant. I have been told by my Neuro-the older you are the less they grow due to Blood Reduction in the Brain and aging. If your mother is up in age that can readily explain why no one has suggested removal-many times some are just left. However-hearing can continue to be compromised. I hope I added alittle and wish your mother some means to deal with this tragedy. I am in the process myself i taking Sign Language with my wife to compensate when I go completely deaf. God Bless-and take care. Ron

[ppearl214]

Thank you for your suggestions, going to a neurologist will be our next step.  Her present doctor is a specialist in Otology and Neurotology and will do another MRI in the next few months and hopefully we will know more.  We live in the Sacramento California area. Thank you for be so understanding. 

Hi and welcome. Well, if you can get to Stanford, they have a fabulous AN treatment team in Dr. Steven Chang (I forget the neurosurgeons name there, maybe matti/cheryl or someone can provide the name).  They offer surgical and radiosurgery (Cyberknife) and many here will attest to their reputation in treating AN's.....from both treatment protocols... they are deemed as some of the best of the best in N. Cal. 

Know we are here to help as best as we can and sending wishes for wellness to her... and to you.... please hang in there.

Again, welcome!
Phyl