Have to make a decision soon...

[LN]

Hi

My mother who is 83 years old with a AN, 7 x 8 mm,  in the left internal auditory canal.  After speaking with a doctor at the House Clinic in california, the recommendation was to remove completely  her internal auditory canal which would relieve her symptoms.  This is a 45 minute surgical procedure with few risk.  Of course she will become deaf in her left ear.  At present time, her hearing is marginal with her left ear being her better hearing ear.  My mother's other choice was to have CK, but it may or may not relive her symptoms or it could make it worse.  Has anyone heard of the first procedure, removing the IAC? 
LN

[Kate B]

Hi LN,

What are your mother's symptoms?

Which doctor did she speak with at House?

Sorry for all of the questions...Before I answer, I need a little more info.

Kate

[LN]

Hi Kate

Thanks for your reply. The symptoms that my mother is experiencing are dizziness, balance problems when walking and now a lip twitch.  Unfortunately I do not have the name of the doctor who spoke to her.  I was not there at that time and she did not write it down.  I recently called the House Clinic and ask to speak with the doctor who spoke to my mother.  I was told I would get a call back from that doctor soon.  I have many questions to ask as well.  My mother is not your typical 83 year old.  She is full of energy and is always on the go, unfortunately her symptoms has slowed her down much to her dismay.  Any information you have about this kind of surgery would be helpful..thank you so much.  LN

[Kate B]

Hi LN,

Yes, I know an atypical 85 year old, so I can imagine your 83 year old mom.

I am glad that you will also speak to the doctor.  Here are some questions that you can print off to ask when he calls.  I would also ask if there are ways to minimize the dizziness without surgery.
Dr. Brackmann told me that the other side takes over relative to balance after time.

Questions to ask the Doctor: The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/

Kate

[sgerrard]

Maybe they mean a labyrinthectomy, which is removal of the balance organ. They don't actually remove the AN itself, and is a shorter procedure, although I think it is still fairly serious and involves a stay in the hospital. There are several kinds, and they are performed specifically to address balance problems.

The loss of balance on one side takes a few weeks to get used to, but after that, the dizziness and balance problems are usually gone for good. A full surgery on the AN itself would be longer than 45 minutes, although House has done enough of them that they can probably do them pretty quickly these days.

It seems a shame to give up the good hearing to fix the balance issue, but that may be the better choice. CK does not generally affect balance much one way or the other, depending on what is happening to it. If it will clear up on its own, then CK is a gentler choice with a good chance of keeping the hearing.

Best wishes,

Steve

[LN]

Hi Kate and Steve

You both gave me some good questions to ask the doctor when he finally calls back.  Kate, I printed out the questions and made a copy to give to my mother as well.  Thank you for sharing that site with me.    I once posted a question about the use of Gentamicin to alleviate balance issues.  The ENT doctor that my mother is seeing suggested injecting Gentamicin into the ear with the AN which would destroy her hearing entirely in that ear, but most of all it would alleviate her balance issues completely.  This procedure would only be done if after having CK and the balance was still a problem.  It seems that nobody on this site has heard of this type of procedure and that worried me!

Tomorrow morning I will be going with my mother to her ENT doctor with many questions.  I sure hope I get a call from the House Clinic tomorrow so we can figure out the best possible approach for my mother.

Thank you both for your interest, it is a real comfort for me knowing you are there to talk to.

Ellen

[LN]

Hi Kate and Everybody,

I received a call back from the House Clinic and spoke to a Dr. De La Cruz.  He was very nice and seemed knowledgeable about my mother's situation.  Steve, you were correct with the name of the procedure he suggested, Labyrinthectomy.  I now have a better understand of what it entails. The doctor felt this would be the best treatment for my mother because it would rid her of the tumor and also her side effects without having major surgery.  This would be an out patient procedure taking 45 minutes with minimal risk.  The major downside would be the loss of hearing in that ear which unfortunately  is her good ear.  We went to my mother's ENT doctor yesterday and the good news is my mother is feeling remarkable better which she  contributes to the physical therapy she completed two weeks ago.  During and immediately after completing her therapy sessions, she was not doing well at all.  The ENT doctor was pleased and suggested doing another round of therapy.  Her last MRI did not show growth which is encouraging as well.  The only complication that we are facing now is she must have knee surgery!!!  She can't do the therapy for her AN until she repairs her knee because part of the AN therapy is strengthening her legs!  So she must do the knee surgery and go through physical therapy for the knee and then start physical therapy for her AN. 

So, that is where everything stands as of today.  Kate, do you know anything about Dr. De La Cruz from House Clinic?

take care
LN

[ppearl214]

Hi LN and welcome (to your mother as well).

I have to ask one question... in light of your mother's age and size of AN (deemed as "small")... we know docs can recommend this and recommend that... has she also had the chance to visit, face to face, with potential docs so they can see her in person and discuss any other issues that she may have that would also need to be taken into consideration?  I know performing invasive surgery on one of that "maturity" can be tricky and do they feel (those met in person) it is wise to subject her to invasive procedure? I only ask out of curiousity.... example: My mom is of "mature" age and recently had major surgery with another forthcoming... can be tricky.  Also curious if "wait/watch" is option as there seems to be discussions (although I have not seen it confirmed) that the older you are, the slower AN's may tend to grow.....

Again, I only ask out of curiousity as another with "mature" age parents that I also keep an eye open.....

Again, welcome.
Phyl

[LN]

Hi Phyl

Thank you for your reply. My mother has visited local doctors and they suggested the CK.  We haven't visited the House clinic, but if we were considering this type of surgery, we would definitely take a trip to L.A to meet with the doctor before making a decision.  To me the labyrinthectomy would be the way to go especially if the person was younger than my mother and this procedure was offered. 

Though my mother is 83 year old, in the last year her AN has grown from a 4.3mm to a 6.3mm, but the last MRI showed no growth which we are happy about.  We are now doing a "watch and wait" approach with more physical therapy which has helped her immensely.

LN

[ppearl214]

Hey LN and thanks for sharing that.... sounds like you all are doing everything you need to do and covering all bases! Your mom is very lucky to have you helping her out, doing research and being the terrific person you are!

FYI... head MRI's have a margin of error of +/- 2mm, so if the films show from 4.3mm to a 6.3mm, your mom falls right in the +/-2mm range.... and gives you all time continue the research.

Hoping you are finding answers here that you seek... looks like everyone is giving their all, as they always do, in providing the best support possible.

Please give your mum my best and please tell her to hang in there.... you, too... familiy is far too important during this "journey".

Be well,
Phyl

[Jim Scott]

Hi, LN:

You and your mother seem to be dealing with this AN situation as well as anyone could.  I'm sure your assistance gives comfort to your mom.  Unfortunately, not all adult children of octogenarian parents are quite so involved and caring, so you are definitely to be commended. 

At this point, with your mother's knee surgery looming, a 'watch-and-wait' approach (observation via MRI scans) to the AN seems sensible.  If the AN begins growing at a later date, radiation and possibly a labyrinthectomy may well be the best course.  However, these are decisions to be made by you and your mother with the input of knowledgeable physicians.  Aside from our inability to offer credible, specific medical recommendations, we're here to help.  Frankly, with your (admirable) proactive approach, I think the best we can do now is simply offer encouragement to you and your mom.   Here's my offering: I think you're both going to do just fine. 

Jim