Author Topic: questions  (Read 5498 times)

Tamara

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questions
« on: February 19, 2008, 12:50:52 pm »
Hi all,
  I'm another newbie.  I've had ongoing hearing problems for the past 15 years, but thought it was due to working in a noisy environment, and having 3 babies screaming in my ear, though sequentially, not all at once! I've had significant SSD for the past 10 years, so am no stranger to the elevator issue mentioned in previous posts.  My favorite is when I'm trying to find my husband in a store and I call his name, and ask "Where are you?", and he says "Here".  LIKE THAT HELPS!  ;) 
  My question is, since the only symptom I have is the deafness, and since my AN is small (7mm), do you think I'm likely to have the post-op issues I'm reading about, like headaches (I've had 2 in my life), or balance issues?  I am looking at having the surgery in summer.  My 10-year-old daughter is severely disabled, so I will have my 16 and 14 year old sons to help me with her then.  I don't know how I will deal with the fatigue issue that I've seen posted too.  Do ya think I can pop No-Doz regularly???

Thanks in advance,
Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

tony

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Re: questions
« Reply #1 on: February 19, 2008, 12:59:36 pm »
I understand your concerns
and of course every case is different - so hard to be sure
My guess is that the prudent course might be to
organise a little "junior is helper" programme
with rewards and teaching/training to get the little ones
fired up and motivated
it may be the making of them
Best Regards
Tony

ppearl214

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Re: questions
« Reply #2 on: February 19, 2008, 01:00:19 pm »
Hi Tamara and welcome. Glad you found us and hope you find answers (and support) you seek by all that participate here! :)

Your AN is definately small! Have you also researched "watch/wait" to see if it even grows  or checked into any radio-treatment options?  7mm is definately small and with your hands full with little ones....

As we all know, surgery is surgery and risks definately are involved, regardless of type of procedure.  As you can see by your reading here, individual results may vary, so really can't say. We've seen good outcomes and not so good.  

I have faith in you to research to the best of your abilities and know, that regardless of what you decide to do, we are here to support you.

Be well.... and again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Joef

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Re: questions
« Reply #3 on: February 19, 2008, 01:56:32 pm »
  I don't know how I will deal with the fatigue issue that I've seen posted too.  Do ya think I can pop No-Doz regularly???

Thanks in advance,
Tamara

  Its not a sleepy issue (I did sleep a lot the first month) ... its more like running around the house 20 times to get the mail .. come back in and wonder why I need to rest  ???
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Kaybo

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Re: questions
« Reply #4 on: February 19, 2008, 02:16:35 pm »
Tamara~
Welcome!

It drives me CRAZY when my sweet hubby or girlies say, "Here!"  I can feel your pain!!

I can't offer you what many others can b/c there were not a lot of choices out there when I had my surgery, but I would recommend checking out all of the options (which you may have already done).  However, I am certainly here for you and would be glad to answer any questions you have about life AFTER surgery -- I had mine 12 years ago when I was 25!

Good luck!
K

PS- I had horrible headaches before surgery and basically NONE now...
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

LADavid

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Re: questions
« Reply #5 on: February 19, 2008, 02:23:01 pm »
Hi Tamara
Welcome.
I'm a recent surgery patient.  My tumor was relatively small.  But during the surgery my facial muscle nerve was stretched.  It's made recovery a bit longer and more trying -- especially with the eye issue.  They also say that folks with smaller ANs tend to have a little more problem with balance.  The people with the larger tumors have already been dealing with it prior to surgery and it isn't that big of as issue post-op.  It's a new deal for people with smaller tumors.  My balance hasn't been severely off -- sort of like walking on a deck of a rolling ship -- but for the first two months I walked with a cane to be on the safe side.  I don't want to be gloomy -- but it's always wise to prepare for the downside.  I wasn't prepared and it's made things a bit more difficult.  As far as the fatigue issue -- mine only lasted for the first two or three weeks -- sudden nap attacks.  It did take awhile to develop a normal sleep schedule.  I hope that sheds some light from one perspective.  But as you will hear from everyone -- each case is different.
You found a good home here.  There's a lot of support, knowledge, encouragement and most importantly, good-natured humor.  Best wishes.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Jim Scott

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Re: questions
« Reply #6 on: February 19, 2008, 05:08:25 pm »
Hi and welcome, Tamara:

We can all sympathize with your SSD as most of us have the same condition.  My hearing in the 'AN ear' (my left) slowly diminished over five years so, like you, I've throughly adjusted - but it remains a handicap.  Not being able to differentiate where sound is coming from is sometimes maddening.  My wife would call to me in a store and I would do a 360 degree turn trying to tell where she was.  I felt foolish doing that but had no choice, unless she was close by.  Now, when we're shopping in a big store or a mall and going our separate ways, we use walkie-talkies to communicate and find each other, usually by simply designating a place to meet, such as the snack bar or entrance, then setting a time to meet, say in ten minutes.  This way, we don't 'lose' each other or waste time waiting  unnecessarily. 

With a 7mm AN, you have options.  One option may be radiation ('radiosurgery') which is non-invasive (no cutting) and requires no more than an overnight hospital stay.  In many cases, it can be done on an outpatient basis (no overnight stay).  This is something you'll want to discuss with your doctor as location is almost as important as size when choosing a treatment.  In some cases, radiation isn't feasible due to the location of the tumor, so surgery is strongly advised by the medical experts.  However, be aware that some doctors are biased against radiation and some are just as biased against surgery.  You have to discern who is being totally honest with you and not simply take the first doctor's advice without asking specific questions and doing some research which is fairly easy, using the internet.

On these forums, you'll often see the comment 'every AN case/patient is different' for good reason...its true.  That truth should be a constant when you read the various posts.  Posters can and do willingly offer their personal experience with surgery and/or radiation (I had both) but because one patient with a similar-size AN had a good or not-so-good post-op experience, whether undergoing surgery or radiation, doesn't mean you'll have the same experience, for better or worse.  One size does not fit all. 

Should you choose surgery, there will be a recovery period when you will simply be unable to function normally due to fatigue.  That could last days, weeks or even longer.  This is the unknown part.  Much depends on the surgeon's skill and the location of the tumor.  The after-effect of the anesthesia will linger for a few days and whatever steroids you're given (to reduce swelling) will also have a deleterious effect on your body.  In addition, performing this kind of very invasive surgery definitely takes it's toll on you and thus, fatigue is usually a very real after-effect.  Radiation has it's own risks and is easier to bear but not a panacea or a treatment that can be guaranteed.  The imbalance issue varies with the individual but it is often something the AN post-op/post-radiation patient has to deal with to some degree.  With time and effort, imbalance can be overcome.  I had some imbalance issues, post-op (see my signature, below, for details) but I was able to surmount them and have negligible balance problems, today.  Headaches are become less common with surgery and while not entirely eradicated, they are manageable and probably not a major concern, but you have to be aware that post-op headaches can occur and they can be debilitating.  Fortunately, I had no postoperative headaches.

The reality is that with any surgery or treatment, especially when dealing with an acoustic neuroma, there are no guarantees.  An acoustic neuroma, even a tiny one, like yours, can present you with a minefield of possibilities.  Odds are, you'll be a candidate for non-invasive radiation treatment if you want it, and experience a fairly smooth and swift recovery, but no one, including a doctor or anyone here, can promise that rosy scenario with any degree of honesty.  I wish I could.

I would suggest that if you haven't already done so, you try to do as much AN research as you can to educate yourself, have more than one surgical consultation and prepare yourself and your family for a six-week recuperation period following surgery.  If you come through with no complications, you'll simply get back to your normal routine that much faster.  If not, you'll be somewhat prepared, as will your family.  Of course, we stand ready to offer you whatever advice and information we can, as non-physicians. 

Tamara, we wish you all the best.  We're definitely sorry you have one of these AN buggers but pleased you found this website (it's loaded with excellent information) and that you've engaged the members of these message boards.  Please stay connected.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tamara

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Re: questions
« Reply #7 on: February 19, 2008, 07:45:18 pm »
Wow, you guys are fast...thanks for the replies.  Yes, I've done some research on treatments.  I've googled my dr, and found that he seems to be more than competent.  He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow, as the chance of that happening increases with time.  If that happens, it's much harder to remove.  Also, since my tumor is small, and my hearing loss is large, he suspects that it is actually on the hearing nerve, instead of on the balance nerve, like most of these are.  I'm not really a "watch-and-waiter" either, as the dr said that ANs are easier to remove when they are small.

Does this sound like what you know?

I read on another thread that someone is in Milwaukee.  I'm in Greenfield - HI!!
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Kaybo

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Re: questions
« Reply #8 on: February 19, 2008, 07:56:32 pm »
I may be totally off here, but I thought that the 8th nerve was hearing AND balance...
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

OMG16

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Re: questions
« Reply #9 on: February 19, 2008, 08:28:01 pm »
Tamara maybe you could look into respite care while you are recovering for your daughter.  I do not know the specifics in your state but you could talk to a social worker in your area that could help you with this.  You can also PM me and I might be able to help you a little more.  I would prepare for the worst and hope for the best.

Start cooking meals in duplicate and freezing to reheat when you are recovering.  You can also do all of your bills ahead of time and just mail them each week.  This would save your energy that you will not have allot of for your family.  Start now by teaching the older kids how to do laundry, cleaning and reheating of the pre-prepared foods that you have stocked up in the freezer.  Maybe you can hire a high school girl to help out with your daughter also.  Contact the high school counselors and they can give you info on who would be a good fit with your family.  Sometimes they can even get so many credit hours for volunteering.

I do not think I would take no-doz as you will need to listen to your body and take the time needed to heal properly and it can interact with medication you may need to take.

Let us know how you are doing and what you decide.  Kisses to your forehead.  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

fbarbera

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Re: questions
« Reply #10 on: February 19, 2008, 08:38:59 pm »
hi tamara,  

sorry about your diagnosis, which i know can be from experience can be pretty unsettling, especially those first few weeks.  i am 35 years old and treated my 2.6 cm Acoustic Neuroma with Cyberknife last August.  i think the information you are receiving about radiotherapy is not accurate.  the neurosurgeons with whom i spoke (i really did speak to some of the best and most experienced AN doctors on the west coast) told me that the success rate with radiotherapy is just as good as with surgery, my relative youth at the time of treatment should not matter in your treatment decision, and that the risks in surgery in general are greater than those from radiotherapy.  Of seven neurosurgeons I consulted with, six said radiotherapy was a good option for me, and all except two recommended radiotherapy.  Of the two exceptions, one said either surgery or radiotherapy would make sense (he did not recommend either approach above the other).  The other was a neurosurgeon with no experience with radiation, who told me (mistakenly) that radiotherapy was not an option for me because of the location of the tumor.  He was completely off base and did not know what he was talking about.    

When it comes to a decision as serious as brain surgery, i think it is worth it to hear from multiple specialists and certainly worth talking to at least one doctor who specializes in treating ANs with Gamma Knife or Cyberknife.  There have been great advances in these treatments, and sometimes older doctors are just not fully up to speed.  Sometimes surgeons are unduly biased against radiotherapy.     

You can speak to some excellent specialists without setting up formal consults:

http://anausa.org/forum/index.php?topic=5794.msg53843#msg53843

If you are interested, I am more than happy to talk with you to discuss my own experience consulting with doctors and deciding on a treatment.  Please email me any time.

Best of luck,

Francesco



leapyrtwins

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Re: questions
« Reply #11 on: February 20, 2008, 12:07:57 am »
He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow,

Okay, it may be off topic, but I just had to chime in and say that 45 is still most definitely "young"  ;D

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Esperanza

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Re: questions
« Reply #12 on: February 20, 2008, 02:28:14 am »
Hi Tamara,

Sorry you have had to join this forum but welcome - you will find the information on here and the support invaluable!

Just wanted to say my AN is 10mm and I lost all my hearing on the AN side suddenly - only diagnosed a few weeks ago.  My speclist suggested watch and wait as you have to weigh up the risks of surgery and any risks of radiation against the risks of the AN growing suddenly (which does happen I know but is unusual?) and the fact there is no heairng to preserve.  I have my next MRI in July so my situation will be reviewed then.      However, I have been frequently thinking I would just like it out just to be done with it and I do get other niggly symptoms which I think are linked but then I worry that they may not go away after surgery anyway....  and the longer I go before 'needing' to have it removed the better the techniques/skills get etc...

It's personal choice but I would say make sure YOU are happy with the treatment decision as you are the one who will have to live with it whatever happens.

Take care
x
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

ppearl214

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Re: questions
« Reply #13 on: February 20, 2008, 06:36:32 am »
He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow....

Tamara,

UGH!!!!!!!!!!!!!!!!!!!   >:(   I wish dr's were better informed about AN radio-treatments....... GRRRRRRRRRR!!!!!!!!!

Ok, well, I had my Cyberknife at *gulp* at 45, now I'm *oy* 47, met with my team last week, including having my MRI and hearing test.... and we have shown for the last 3 consective MRI's that my growth has stablized in size (actually minimal shrinkage... keep in mind that the goal of radio treatment is not to reduce the size of the growth but to stop it from growing by attempting to kill the core DNA) and my hearing is the same as it was at the time of treatment (as we know, individual results may vary)..... so, for me, my stats totally disclaim what your dr noted.... and I'm sure others here may come close to these results (give or take, depending on which form of radio-treatment was done on their AN).

If radiation is a sincere consideration for you, I (personally) would ask dr's directly that treat AN's via radio-treatments. You can check with the dr's (they volunteer their time to answer patient questions) at http://www.cyberknifesupport.org/forum/.  They are extremely well-versed in AN's and all forms of treatments (yes, even microsurgery) and if you pose the question to them (try the "Brain" section), they are quick for responding back (unless they are on the golf course). :)

Please hang in there...
Phyl
« Last Edit: February 20, 2008, 06:40:15 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Charlotte Lady

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Re: questions
« Reply #14 on: February 20, 2008, 09:48:24 am »
Tamara-


It sounds like you've got things under control!   As for the possible side effects of the surgery, one of the key questions to ask your surgeon is HIS percentage of facial paralysis and deafness.  My surgeon was very upfront about that - of his patients this year approximately 10% had paralysis.  He also told me, based on the location and size and amount of hearing left, I had only a 25% chance of keeping what was left of my hearing.   

As for life after surgery, mine's great.  Four months post op, I have barely any paralysis.  It took me two weeks to notice I actually had paralysis at all - slight drooping of the eye, crooked smile, that sort of stuff.  Fatigue is almost noexistent.   I work at Barnes and Noble, and went back to work (after six weeks) November 4, the beginning of the Xmas shopping season.  Balance issues are not bad.  Sometimes getting up fast or turning fast makes me take a step to catch my balance.   

I too went with the surgery for the same reasons...long term recurrence rate is less.  But let's face it.  In twenty years you'll be <ahem> 65 (and I'll be 70 something) so if it comes back, you are a great candidate for CK or surgery. 

If you go for the surgery, I have one piece of advice for you.  Get the softest pillow you can find.  When i came home, I couldn't use my pillow - too hard.  My head didn't hurt; it was my neck from being twisted for 4.5 hours that was the "killer".  I had to go out pillow shopping two days after coming home from the hospital and that was no fun.  Oh and a bag of frozen peas to use as an ice pack.  I loathe peas so I had to send my significaant other out to get a bag. 

Donna
1.5 cm AN removed 9/25/07.