Positive surgical outcomes??

[Boppie]

I had a positive surgical experience.  By the time of diagnosis my hearing was drastically diminished. I had the photo you see here taken one month before my Translab, in hopes I'd have a nice smile record to keep for my aging years.  Fortunately, the smile I have today is exactly the same.  Yes, I lost the remainder of my already distorted and poor word recognition to a now deaf ear.  SSD is small price to pay for a surgery to keep the tumor off my brainstem. 

If I'd discovered a much, much smaller tumor in 2005 perhaps I'd still be on wait and watch.  Each of us finds the answer that best suits us personally.  I have no regrets, only happiness with my life today, as is.

Keep researching and remember that the small AN is not a threat. 

[Kaybo]

Wonderfoully said, Jan.  All I could think of when I read this was what I use with my kids:  "You get what you get and you don't throw a fit!!!"  I don't know why that popped up...   

K

[Debbi]

Jan, you are SO right!  I am with you - if this is all I have to deal with in life, I will consider myself truly blessed.  I know two people with cancerous brain tumors - a reminder that an AN is not such a bad thing. 

Life is ours to live and we each get to choose how we deal with whatever life throws us - look at Randy Pausch if you want to see someone who is facing the worst life can dish out, and still finds joy in simple things. 

Sorry, hope this doesn't sound preachy - and I certainly don't want to minimize our acoustic neuromas - but I know that I have much to be grateful for every day...

Debbi - having a zen moment in NJ... turban and all...

[sgerrard]

Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc?  I find these "positive" reports pretty unsettling.

We have been doing research for about 2 months re our son's 4 mm AN, and reading about your, also very small, AN, I really hope you make sure that you research alternatives such as CK, GN, and "watch and wait."  I believe that surgery is warranted in many cases when the AN is 3+ cm, but the unpredictable results that seem uncorrolated to tumor size, weigh against the surgery alternative for us.

Katherine

Hi Katherine,

I wanted to respond directly to your comment, since you seem to be in the minority in this thread. The choice between surgery and radiation treatment is a complicated one, and depends on many factors, including patient preference. I do want to endorse your perception that for you and your son, radiation treatment may be a better choice. His AN is quite small, so waiting may make sense, and if it is treated, a small AN like his has an excellent chance of a positive outcome from radiation treatment. I am curious, in fact, if you have had a consultation with Dr. Chang, and if so, how that went.

So no, it's not just you.

Steve

[Jim Scott]

Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc?  I find these "positive" reports pretty unsettling.

Hi, Katherine:

Please allow me to chime in here as you raise a salient point. 

An Acoustic Neuroma - doctors refer to them as a vestibular schwannoma - is a (benign) growth on the sheathing of the 8th ( vestibulo-cochlear) nerve.   Usually, hearing loss is the symptom that motivates AN patients to seek a doctor's help.  Unfortunately, hearing loss is a fact of having an Acoustic Neuroma, although a small percentage of AN patients do not lose their hearing in the AN-affected ear.  Hence, hearing loss is not generally considered a negative outcome for AN surgery.  My surgery was without complications and my hearing was already 'lost' in the AN-affected ear, so, I consider my experience to have been positive.

Facial paralysis is another factor in dealing with an Acoustic Neuroma because the 7th (facial) nerve can be involved.  Because that is the case, some AN patients begin to lose sensation in their face prior to surgery and some lose it following surgery.  Post surgical facial paralysis or loss of sensation is often temporary as the facial nerve has been disturbed.  Eventually things 'settle down' and facial symmetry is restored.  This can take weeks or months.  I had a few almost imperceptible facial anomalies post-surgery but what little there was (my smile was 'off' just a tad) resolved within six months to a year and were never noticable to others.  I consider that a positive outcome.

As others have tried to point out (and done so quite well, I might add) Acoustic Neuroma patients have a difficult challenge to surmount because the relatively small tumor has far-reaching effects.  While some do better than others (for a host of reasons - or for no obvious reason at all)  no AN patient comes throught the experience totally unscathed in any way.  I didn't and by any logical standard, I had a splendid recovery from both AN surgery and radiation treatment - or just call it a positive outcome. 

Jim       

[lacey7]

Jan, I love your outlook on life!  There ARE alot worse things to have wrong, than AN. 
It seems none of us gets thru life, without problems.  I feel we grow ALOT thru things that happen in our lives that are unexpected.
If someone lived 90 years, and had no problems some people wouldn't know how to be thankful, or blessed.  They might just concentrate on the "little things", and be unhappy b/c of them.  I'm just generalizing here.
Problems teach us how to be sensitive, caring, and help other people.  We become NEW, and BETTER people.
My hubby and I went thru what I think is the worst thing in the world.  We lost our son.  He was age 16.  I'm not telling you this so that you feel sorry for us, I'm just mentioning it, b/c it happened.  He was a wonderful son, and I miss him terriblly.
But, even that, will turn out good in the end.  When we are back with him in eternity. 
So....to get back to AN......I will make it thru this, also.  Will probably have some bad days after surgery, but it will get better.
Just like all of you have said here.  So thanks everyone, for all the positive thoughts here!
WE even laugh here!  That helps heal all of us.
Love,
Lacey

[Kaybo]

Lacey~
I am so sorry about your son, but I think you have a wonderful attitude about that & everything else!  I was just telling my SIL the other day that if we never had pain or hard times, we would never recognize the good.

Keep up the positive thoughts!   

K

[km5]

Hello Steve,

Thanks for responding directly to my concerns.  I am the same person who has written over the last several months about my 23-yr-old son's 4 mm AN.  In short, I feel we have been fortunate to have extremely good advice, from doctors as well as from the knowledgeable and kind people on this message board.

In short, Dr. Brackman at House Institute says middle fossa surgery is the best approach for a young man due to the long-term effects of radiation being still unclear.  Dr. Chang at Stanford, with whom we consulted, says CK is the best approach for a young man but he is comfortable with "watch and wait."  Through a crazy coincidence we made contact with Dr. Carlo Giovannini, who has just arrived at House to head their neural tumor research department.  He says that in Europe, a young man our son's age with a 4 mm AN would be watched, and definately not operated upon.

Our son's hearing now is extremely serviceable, although he wants the TV louder than anyone else in the family.  His face is gorgeous (I'm his mom, after all), he is single, and the possibility of facial paralysis, even temporary, is pretty scary.  In fact, several weeks after the meeting with Dr. Brackman he developed hives, for the first time in his life, and probably from stress.  He felt a lot better after consulting with Dr. Chang.

So it is difficult to proceed with a treatment that could affect him negatively for the next 60+ years when he is doing so very well.  We have decided to do another MRI in September, after waiting 6 months from the first one.  That makes the most sense for us right now.  Also, David has always had a hearing loss on one side.  We are tracking down his audiology records from when he was 12, to see if his loss in the high frequencies has remained fairly constant, or deteriorated.

It is so helpful to have everyone here on which to bounce off ideas.  After we were referred to Dr. Brackman by our son's ENT, I wouldn't even have known about the radiotherapy alternative without these message boards. 
Thanks again,
Katherine

[sgerrard]

Hi Katherine,

Sounds like a good plan. I look forward to hearing about the next MRI in September, and how your son's hearing is doing. I like the sound of Dr. Giovannini as well. I hope you are able to watch and wait patiently, that is often the hardest part.

Steve

[ROCKYB]

Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you. Thank god for this board I got a fair and balanced choice. I am in the medical field so don't fool yourself they are there to make money and when you see the cost of surgery you see why. My first consultation was with two of the top guys in NYC who told me don't do gamma knife you can die from brain cancer down the road. I feel what ever choice a person makes is a good one I just wish these so called experts would  tell the patients all the options in a fair and balanced manner. By the way mine is only 6mm so I do have options.

[ppearl214]

Rocky,

it's one of the things we stress around here... to do your research and to be the best well-informed patient you can be. Of course, in life, peeps are going to recommend what they know... where their "comfort levels" are... and to me, in the AN struggle in life, we must take it upon ourselves to find out what others don't (or won't) tell us.  Now, not to overwhelm yourself with info, but do as you are doing... consult with dr's... and patients alike.  Then, you will know what is best for you and your situation.

Hang in there!
Phyl

[leapyrtwins]

Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you. 

Rocky -

I think that unfortunately you are seeing the wrong doctors.  I'm in Illinois and I know that my doctor and his medical partner do not try to sell you on a specific treatment if you have options.  They do both radiation (gamma knife) and surgery and if your AN can be treated by either, they basically let you decide.  Of course there are cases where surgery is the only option due to the size of the AN.  Both these doctors also recommend watch and wait - if the AN is small enough.

If someone travels from another state to consult with them, they will actually recommend a doctor in the patient's home state if they feel there is someone just as qualified as they are.  IMO, these guys are the kind of doctors you want.

If you want more information on them, PM me.

Good luck,

Jan

[chopper]

Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you.

Which hammers home the "do lots of research and interview multiple doctors" approach the patient should take.  The internet is a godsend in this aspect.   When the time comes to get your noggin split, you will feel more at ease knowing you made the best decision for you, by you, not someone else.

In the docs defense, they know what they know.  Some expand on their knowledge and change as the technology and techniques change, some stay with what they learned as the tried and true method.

LMH,

I had a positive outcome.  Of course, the surgery and ICU stay sucks to no end, but it was quick compared to some (2 days total).   Was back to work nearly one month to the day of having surgery (I think it was one day sooner).  Only long term issue is the SSD.

Would I do it again with the unconventional and not (yet) widely accepted endoscopic method I chose?  Absolutely.

[Jim Scott]

Katherine:

I'm pleased to read that the message boards are helpful to you.  That justifies their existence. 

Your concerns for the long-term effects of radiation on your son are valid and your decision to wait until September and the next scheduled MRI to make a decision is also reasonable because your son's AN is relatively small at this point.  This offers you the luxury of waiting a bit and using the time to research and come to an informed decision.  I believe you're on the right track. 

I must point out that when dealing with an acoustic neuroma, there are no guarantees.  As my very experienced and skillful neurosurgeon told me: the AN tumor develops in a very sensitive location and is difficult to remove (or radiate) without at least a few ramifications to the patient, even if temporary.  Unfortunately, because of it's placement on the 8th nerve, hearing loss is common - but not automatic.  However, one must be realistic and understand that when dealing with an acoustic neuroma, some hearing loss is quite possible, no matter the procedure chosen to address the AN, because the 'hearing nerve' has already been compromised.   However, facial paralysis and the other issues that seem to be associated with Acoustic Neuroma tumors can be avoided but again, that kind of outcome cannot be credibly guaranteed by anyone, especially a doctor.

Radiation is a popular treatment for small AN tumors - and usually quite effective.  There are always risks, of course, but a bit less than with invasive surgery.  I trust you'll find the best course to take and do so with the knowledge you've gained here and elsewhere.  We wish your son the very best possible outcome in whatever treatment you choose. 

Jim

[calimama]

Lacey...

I read your post and tears welled up.

I am so sorry to hear of your loss. I know you were not looking for sympathy but as a new mom, i couldn't help but feel a deep ache when i read your words.

You are a strong woman to go through this and find a silver lining. Bless you.

Trish