ANA Discussion Forum
General Category => Inquiries => Topic started by: Rivergirl on April 24, 2010, 04:01:08 pm
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Just wondering how all of you feel about this, did the surgery help? Are you glad you did it?
Thanks
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what surgery are you referring to exactly...I'm kind of lost here...
K ???
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Hi Rivergirl .....
If you are referring to surgery for AN removal, I am very glad I did it ..... with no regrets whatsoever. See signature below.
Clarice
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Rivergirl:
The cure (surgery) can result in additional damage. I lost additional hearing on my AN side with the surgery. But, I didn't want to let the darn thing grow and risk more damage. The bigger the tumor the more complicated the situation gets. It's a risk either way.
Syl
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Rivergirl ~
You pose an interesting question that I suspect cannot have a definitive answer, as each AN surgery patient is unique in many ways, i.e. symptoms, tumor size and exact location, surgeon's skill,etc.
The inescapable reality is that the AN, if left untreated, will eventually kill the patient. That being the case, the next decision is the form of treatment. For some, like me, being diagnosed with a 4.5 cm AN precluded radiation so debulking surgery was recommended. That worked out splendidly for me, but as we know, AN removal surgery does not always have a totally positive result and some AN surgery patients would answer your query with a resounding 'no!' I'm not one of those.
So, in my case, yes, the surgery (retrosigmoid approach) helped tremendously; all of my pre-op symptoms disappeared within 24 hours of the operation. What post-op issues I had were mostly minor and transitory, for which I'm very thankful. The debulking procedure allowed the remaining tumor to be successfully irradiated and this pretty much ended the problem, albeit with a few very minor remaining deficits. I should add that the AN had destroyed my hearing in the affected ear well before my diagnosis and surgery and I had completely adjusted to being SSD before I ever saw my neurosurgeon.
I can only speak for myself, of course, but I suspect that the majority of AN surgery patients would answer your question ("was it worth it?") in the affirmative. We'll find out.
Jim
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I agree with Jim. Depends on when you would have asked me.
Prior to knowing I had an AN, I didn't think I had many symptoms. I had slight hearing loss in one ear. So in that regard, I would have been happy to stay like that with such minimal symptoms!
As I waited for my surgery, I became more aware of some symptoms. Sharp electric shocks down the side of my face that I would have done anything to get rid of. Double vision. Not great balance (although nothing to really complain about). I knew that this would all get worse though, so I was excited (?! seems weird to get excited over brain surgery) to get it over with and get on with my life. Having said that, I was also PETRIFIED. My surgical team made it clear that they hate doing this surgery on people because in almost all cases you come out of it worse than when you went in (at the very minimum, with less hearing.......and with all kinds of other risks).
Hindsight being 20/20 though, I had the best of all worlds in some regards. My facial shocks are completely gone (seriously wouldn't wish these on my worst enemy), my balance wasn't affected by the surgery, I kept some of my hearing (about 1/2 of what I had prior to surgery) and not really any other long term side effects (several short term ones after surgery, like headaches for a few months and numbness on my face/tongue, no fluid in my eye for a few weeks). I did get tinnitus though, which I never had prior to surgery. The trade off for getting rid of the shocking is a small price to pay in that regard.
In a perfect world we wouldn't need to make these choices at all, would we !!! Am I glad I had brain surgery? Heck, I sure wish I didn't NEED to! Did I turn out great? Absolutely. Sure was hell anticipating it and all the nasty side effects though. Talk about stressful!
As another plus though, I feel like it would take a heck of a lot to get to me these days. Once you make it through something like this I can't speak for anyone else but I sure feel unstoppable at times (with a greater understanding of how fragile life is at the same time........how that's possible, I'm not sure).
I sure hope your resolution brings you peace some day and you aren't left wondering about the what ifs anymore.......Thinking about these things can make us crazy!
Adrienne
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Rivergirl:
I just realized I didn't answer the part about whether I'm glad I had the surgery. I don't regret having the surgery.
I want to add that I rarely had headaches before the surgery. Now, I suffer from chronic headaches. Still, I don't regret having had the surgery. Something had to be done about the tumor.
Syl
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Like Jim, I was diagnosed at such a size and location precluded radiation therapy.. I had very little choice in what approach was used. Am I glad I had surgery? I'm glad I did it because SOMETHING (i.e. surgery) had to be done, but like others I sure wish I didn't HAVE to do surgery. I would have been just find with a broken leg, or arm or something as opposed to a brain tumor.. With that said, without the AN and subsequent surgery, I would have never met you fine folks. I would have gone and and been comfortably oblivious to the fact that there are those people out there that suffer, struggle and overcome something called an "acoustic neuroma". I'm a better person, in my opinion, for having a brain tumor. I'm not sure I ever would have said that prior to 2 years ago.
Regards,
Brian
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Well, I guess I am glad I did it, if the alternative would eventually be my death. 4 months post surgery and I am not better than I was before I had it. Not that I am doing real bad, but I wasn't bad at all before I had surgery, just the hearinig and very few bouts of dizzyness. Now, the hearing is about the same and the dizzyness is way worse than before, but manageable. I am just glad to get that out of my head so I can go on with life! :)
Jay
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Both my surgeries - AN and BAHA - were definitely better than not treating my AN and my SSD.
Neither are decisions that I regret.
Jan
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Despite all my post op problems, yes I am definitely glad I had surgery. My tumor was leaning against my brainstem, so who knows what could have happened. Just because AN's are benign, this does not mean they are not deadly!
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Interesting question Rivergirl, because my Dr told my husband and I back in Feb in my case the cure is worse than the disease. I've had the facial neuroma debulked so now I am watch and wait for a nerve graft.
Would the nerve graft cure my chronic headaches and facial pain? Probably not. Would I have facial paralysis? Yes. Do I suffer anxiety over this yes?
Anne Marie
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Sometimes when I have a day of really bad headaches I wish I didn't have the surgery and went for the radiation, but only for brief moments. Over all I was just happy to get that thing out of my head.
Tough question...made me really thing about it.
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Count me in the no regrets-glad column. :)
Neal
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Dr. Thedinger pretty much told me that I didn't have any option. My words, not his that I need surgery. I fully agree.
I do wish that I had been diagnosed before I'd lost so much of my hearing. As the date of the surgery grows nearer, I am experiencing more frequent and severe headaches.
If given the choice to wait, I don't know that I could. While I don't see it as a "cure", its prevention of inevitable digression of my health.
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I have no regrets.
Lyn
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Hi Rivergirl,
I have no regrets and would have surgery again with the same doctors if I had too. Keeping a positive attitude is half the battle. Ann
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A little late getting in on this. My surgery was March 24 this year. Symptoms prior to surgery was mild stumbling but it was not a problem in my life. Every once in a while, I had problems standing up because of a horrible wonky vertigo problem...problem in my life. My surgery was only about 6 weeks ago, and I am far from fully being recovered. I have no facial problems. I am SSD, but not a problem. My balance is pretty good and getting better every day. I never have the horrible wonky feeling. I had the BAHA surgery and will be hearing again pretty soon. The only draw back is my balance is not perfect. It might not ever get any better, but I am willing to bet it will. I would do this surgery again without fail. I know you read about how horrible this surgery is, but it really was not that bad. I never had any pain. There was some discomfort from lying in bed all day, people waking you up to take blood pressure, etc. Everyone will have different recoveries, but if I could have written the script about my recovery, I would not change anything.
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I have bided my time putting my two cents into this topic. I am exactly 6 weeks post op today and I had a large tumour removed. I would say I don't regret having surgery now, I think 6 weeks post op is when you really start thinking its not so bad. Hair grows back, scar isn't visible. I am use to my face not working now. Balance is good, back at work, walking an hour a day. There was a time after my surgery where I thought I was worse off - like I had swapped one set of symptoms for an entire new lot. However surgery is necessary for some of us and there is no other option so you just have to learn to cope and get on with it.
Ding ding ding - ready for round 2 of surgery
Jacqui
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Sorry to buck the system here but I am so annoyed at my decision to have surgery. As I have repeatedly said, i was stupid and ignorant. I took the surgeon's word for it - that is, that I needed surgery.
Since surgery - chronic headaches and lots of pills and injections to stop them - to no avail. And to cap it off - the AN grew back. So i was back to where i started from - poorer and in constant pain every day.
Thus far, my radiation treatment on the regrowth has been doing what its meant to do but more definitive MRI coming up in a month will be the telling moment.
SURGERY - HUMBUG!
Oh, my initial growth was small enough to watch and wait - more humbug!
laz
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Larry,
Maybe your HUMBUG should be on not researching the treatments available for your AN not on surgery per se.
no research + quick decision = HUMBUG.
Neal
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Had surgery 6 years ago just the other day. My hearing was out of whack prior to surgery but definitely still serviceable. Couldn’t use the phone and everything sounded strange however I still had sound awareness and the phone is not a very good acoustic instrument. I believe that if I had waited I would have still lost hearing even if the tumor didn’t grow. Being only 35 at the time I knew the tumor would eventually grow. I felt that if I had radiation I would still lose more hearing quickly or over time and between radiation or watching the very presence of the tumor would have drove me nuts. No headaches and no facial problems. I am deaf in one ear and the tinnitus fluctuates. Ear pain has never returned following surgery. Maybe another route would have proved better but maybe not either. Surgery was tough but today I barely remember. The key to this entire experience before and after is acceptance. Years ago I often wondered why me and not this jerk standing next to me but we will never find peace with ourselves unless we accept things the way they were and the way they are now.
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Hi All,
Just wanted to let everyone know how much I appreciate hearing or should I say reading everyones' heartfelt feelings regarding this very important thread.
Thank-you for your honesty,
Jackie in Oregon
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YES & NO... :-\
Well I went into surgery with a functioning face that smiled :) on both side, eyes were just fine, hearing was excellent with 100% word recognition 8) with only some high frequency loss in the one ear. What was wrong with me is I could not poop :-[ nor sleep :'( properly as my brain stem was so impacted by the 4cm and squished into a letter “s†shape. I had the occasional :-\ balance issue and often put my back or knee out… yet not significant enough for me to figure it was a balance issue and I just thought I has a bad knee or weak back (or abs ???) etc and need to work out more.
My recovery has been slow with some things returning to normalcy ... quicker with others things. I have 70% facial function now with synkenisis (this is THE hardest for me mentally, physically and spiritually) to deal with. I am deaf on one side now (SSD), I have a huge crater in my skull, I have the occasional balance issues … but hey now I can poop ::) and sleep :) and I'm no longer a toxic constipated sleep deprived :P zombie.
I have learned more about neuroscience than I ever would have before the topic became important (or relevant) to me. I have met some of the most intelligent neuroscientists as I interviewed many -before trying to make an “educated†decision. Some of those neuroscientists may not like me :-\ as I assertively make sure they GET the “patient perspective" as sometimes I do not think they truly understand how much their own actions changes the course of another person’s life- forever. Some of those neuroscientists are most cautious of me and feel threatened ::) by my candor …yet some applaud me in my efforts 8) to educate people about AN tumor “stuffâ€. I have also met the most amazing people through the ANA: either on this forum, at the symposium or in ANA support groups meetings. I have made it my mission (and maybe feel called) to step up the education about acoustic neuromas not just to patients, the general public, but also to the MEDICAL community. I was finally listened to WAY-too-late-in-the-game of the tumor and I finally got the MRI that I had been requesting – for YEARS. It was so big :o I only really had only 2 options: retrosygmoid or translab surgery. (NO W & W, radiation or gamma etc) I think I should have chose the latter surgery now I know what I know … but I can’t do the “shoulda-coulda-woulda†dance now and I must “keep moving forwardâ€. I just hope the residual “brain booger†does NOT grown back. (I won’t even start on my issues with an ENT convincing me to have a sinus CAT scan that exposed my brain to more radiation >:( … oy ya ya :-\ )
When I was at Stanford University Hospital I met some students who I would give failing grades to (and yes even some instructors :-\) …but I also met some brilliant gifted minds too who deserved top marks.
This young fellow comes to mind, Sumit Agrawal, as one I would give high marks to.
http://www.fims.uwo.ca/olr/Mar3110/UWOentreprenuers.html
He was the “human†side to my treatment and held the hand of a VERY scared fellow Canadian, down here in the USA, as she became a dissection rat in a neuroscience class. He witnessed the errors made in my surgery and is moving forward to create technology to better train students and already certified surgeons. However once he graduated and returned to Canada, to teach there, my lead surgeon totally dropped the ball on my case and I lost my #1 advocate… and my file got lost in the big university hospital impersonal system. (Won’t even start on all the follow up MRI orders being lost just within the ENT department ::) :-\ ::) ). I am convinced that this young man will be one of the “kids†who will make it better for the next group of patients in the new generation.
Methods and technology are improving and getting more and sophisticated every day. I truly believe that "the next generation" of AN’ers will have better outcomes in their “cureâ€. (Gee don’t I sound like a Treky? ;) ::) "Beam me up Scotty!†;) ;D :D) IF we can catch these tumors sooner, by identifying these earlier, than I think the outcome of treatment will be better.
This past month I took my child to a pediatrician who had never heard of an acoustic neuroma. :o (Did I take a moment to interrupt my child's exam to enlighten the good DR? You bet!) This was evidence to me that not only do we need to step up our education initiatives, as the ANA, to enlighten the medical community by starting not with just the PCP’s (GPâ€) … BUT ALSO, I am realizing now, that we need to go further and also get this into a pediatrician's training (& education). I am thinking of a young teenage Taylor- who I sat at dinner with at the symposium, and her mom, plus she is also on our forum here. Taylor had a 5cm removed in an emergency situation. Why did it get so big before she landed in ER!?! (Young Chris and his mom come to my mind here too)… Well because the pediatrician and/or PCP have NO idea :-X what to look for when these symptoms present in a patient -because they are just NOT educated.
You ARE going to get a variety of answers here.
I will say one thing for sure is we cannot solve tomorrow problems with yesterday’s information or technology… (Or even today’s for that matter.)
My hope is that even in a decade from now you will get very different answers from the ANA posties than you are getting here today… with an overwhelming,
“NO the cure treatment was not worse than the conditionâ€
… but as you can see there are variables with: tumor size and position, age of patient, treatment options available (not to forget insurance coverage or lack there of) etc.
My answer to your question "Is the cure worse than the condition?â€
Yes and NO.
MY VISION
My hope is that the next generation of patients is going to give you and overwhelming “NO the cure is not worse than the condition†… In the meantime we have a heck of a lot of work to do as doctors, educators, a non-profit organization such as the ANA, and patients…
I wish I could say NO :-\ but I just can’t – yet.
When I was a teenager we had LP’s and cassettes that were THE wow wee technology. ::) Now I look at the I-Pod shuffle that is smaller than our pinky fingers. 8)
AS long as we keep encouraging brilliant young minds (be it the TAG kid in 3rd grade or the fellowship neuroscience student at a prestigious university) and keep funding “research and development†(R & D) there is a REAL possibility that you are going to get overwhelming "NO!" …in the future.
Rivergirl know that the getting information and opinions about AN tumor treatment can be totally overwhelming.
I am going to recommend 3 books that you read before you start on the neuroscience text books, papers, pamphlets etc (I am not promoting Amazon books here I just like that their links allow you to read the covers 8) and have a sneak peek)
1) Seven Blind Mice by Ed young (you will be done reading in less than 10 minutes)
http://www.amazon.com/Seven-Blind-Mice-Caldecott-Honor/dp/0399222618
2) Daisy Head Mayzie by Dr Seuss
http://www.amazon.com/Daisy-Head-Mayzie-Classic-Seuss-Dr/dp/0679867120
...will give you an insight into opportunists who will take advantage if a patient is naive and helpless yet also helps you to identify (discern) who truly wants to help and wants you back to where you belong in good condition just with a more enlighten state of mind. (This will take less than 12 minutes of your time to read.) It is a book that will spark you to use discernment when choosing a “Neuro†doctor… and listening to the well-intended (but not always correct) advice of those around you.
3) Brain: The Complete Mind by Michael S Sweeny © 2009 National Geographic Books
The last (3rd) book has many wonderful illustrations and will explain neuroscience in layman (or laywoman’s ;) :) ) terms. (GAWD I wish I had this book available to me in 2007 when I was trying o figure out what to do for AN TUMA treatment and was clueless about the physiology of the brain -as I tried to interpret the MRI radiology report!!) It relates neuroscience - its development education, research and application to our EVERYDAY world. It mentions people like Michael J Fox, Ronald Reagan and their health issues… If it had been published later it probably would have mentioned Ted Kennedy and his brain tumor. It sits on my coffee table and appears to grab the attention of visitors to my living room, young and old a like, like no other.
Signed
Daisy Head Mayzie
(aka DHM, formerly “4†… and oh there are probably others names I have been called that I am not aware of who want to “run her out of town†;) quoting the great DR... Seuss. :D But currently I still identify mostly with Daisy :) )
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For me, I never regret having surgery. Just over a year on and life is pretty much back to normal, or thereabouts. I'm very fortunate, my surgeons did a great job, but I definitely went in with my eyes open - my surgeon was brutally honest with me beforehand about the risks etc. If the outcome was less favourable I'm sure I'd still be glad I had surgery because I'd far rather not have a random lump in my head. I am full of gratitude - if I'd been born in any number of countries I may not have had the opportunity to have surgery, so for me, life is good.
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Do I regret surgery?
No, but I am 1 1/2 year post op and still dealing with a lot of issues, I am looking forward to the day that my head does not throb when I stand up, headaches, face swelling and hot sensations, getting hearing aid and getting buzzed!!!!!!!!!!!!
I thank God for my blessings and I know I will get better and I keep healing! I am very thankful for this forum!!!!!!!!!!!!!!Have a great day! (hopefully)
Bell
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Although my AN was small, there is no telling whether or not it would have stayed that way. Since I was so symptomatic prior to surgery (hearing loss, some balance problems I felt, as did my doctors, it was better to treat it sooner than later. I also had BAHA surgery due to complete hearing loss in my AN ear. I have no regrets -- my life has changed, but it is still good.
Wendy
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Basically I'll take life over death anytime.
ANs that are left untreated have the potential of growing and eventually leading to death.
Jan
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ANs that are left untreated have the potential of growing and eventually leading to death.
To clarify: If the AN is not addressed and allowed to grow, unimpeded, it can eventually grow so large and push so hard against the brainstem, essentially strangling it, that the patient's death is a real possibility. Usually, long before that point is ever reached, AN symptoms become so severe that no one can ignore them. AN removal surgeries are performed all over the world. I would speculate that few people die of an unaddressed AN, today. However, ANs do pose an ultimately fatal threat, so, Jan's statement is factual.
Jim
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Hi guys,
My anger in my earlier post was not about having to have treatment as that is inevitable. It was my choice of treatment that annoys me. that is opting for surgery when i could have watched and waited for a while and then had radiation treatment.
I am worse off having had surgery in that it has grown back, so the surgery was a waste of space, I have had constant headaches since that I never had before. My hearing is worse following the op - pre op i had some hearing - whether that would have dissappeared naturally is anyones guess and I have slight balance issues that i didn't have before.
Financially it cost me $10,000 out of pocket and I missed 6 weeks work - being self employed that was quite costly.
So yes, my so called cure which was a monumental stuff up made things worse.
cheers
Laz
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Sometimes in life there isnt a choice.When they finally found the an they said without the op i had about 3mths to live.So there was no choice for me.On a positive note the horrible trigeminal pain has gone.I couldnt talk,eat function,a bad time.But i feel i have swapped the pain for some minor problems ie altered taste,ssd,numb heavy head,minor balance problems,lack of confidence,but at the end of it glad to be alive
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I have been away for a while but want to thank all of you for your honest feelings about my question, your input is so helpful as eventually almost all of us have to make that decision and it is scary. It is reassuring that most of you would do it again. Thank you so much.
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For me, my cure was way worse than the condition. My symptoms were not really troublesome--hearing loss, stuffy feeling ear and some headaches that may or may not have een related to the AN. They were very manageable with 2 Advil and a little rest. At 6 months post-op I was bed-ridden with daily horrid migraines, was living on narcotic pain meds, went to the ER at least 6 times because the pain was so bad my husband was afraid I was having a stroke. This went on for 3 years. I finally found a specialist who was able to put me on a drug cocktail which at least got me out of bed a bit.
I believe all those drugs really affected my over-all health as now I have an irreversible stomach condition (from over-use of OTC NSAIDs) and osteoporosis, which is affecting my sacroiliac joints, causing me to be in a lot of pain for over a year. The meds I was on block calcium absorption (no doc told me that I had to take extra calcium) Right now I am trying non-systemic and holistic remedies, like an anti-inflammatory diet, supplements, nerve blocks and Botox, and those last two are pretty pricey, believe me, even with MEDICARE. My previous insurance refused to cover the Botox.
It took 4 years, but I finally won my disability claim. I totally lost my lucrative art career--I was selling work for $4000- $9000 at 4 different galleries. They have all dropped me because I cannot produce any new art. I also suffer from depression, making it even harder to work. I cannot do anything physical without triggering a headache. Even taking a walk brings one on. Before surgery, I used to do things like renting a boat and taking my hubby on a sailing vacation in the Virgin Islands (I used to be a charterboat captain down there), hike the Appalachian Trail, windsurfing, etc. I was extremely athletic.
Do I regret the surgery? Absolutely. I wish I had at least W&W for 6 months to a year and then researched more on gammaknife of cyberknife. I made an emotional decision. My favorite cousin and best buddy had just been through a malignant brain tumor and I just wanted the thing gone. I met a man at one of the symposiums who has been in W&W for eleven years and his AN just quit growing and he's doing great.
I have mixed feelings about flying across country to have it at House in LA. I know I had among the best surgeons in the world, but the aftercare was difficult in my small town here in North Carolina, and I could not tolerate or afford to fly across the country again to see why I was having such headaches.
So much for the horror story. We are all different, but it's really a crap shoot.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-4.gif)
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I have mixed feelings about flying across country to have it at House in LA. I know I had among the best surgeons in the world, but the aftercare was difficult in my small town here in North Carolina, and I could not tolerate or afford to fly across the country again to see why I was having such headaches.
So much for the horror story. We are all different, but it's really a crap shoot.
BIG ole gianourmous Canadian Mother Bear HUG coming from Oregon being sent to North Carolina... for the Captain
HUGS
DHM
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Deb,
Over the years I've got to know a lot of people's aches and pains and issues but when its put into such a concise post, its really upsetting. I do hope you (and a number of us) get some relief down the track. As I have said beofre "Oh for just one day without a brainwreck".
hugs and stuff
Laz
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Sorry, I didn't mean to scare anyone. It just burns me up when docs want to do surgery on folks with mostly asymptomatic tiny tumors without monitoring their growth for at least a year. It also seems that people with smaller tumors have a greater risk of post-op headaches. One of these days there will actually be a consensus of opinion about how to treat small--less than 1cm--tumors. Right now they leave it up to the least informed people--US.
Capt Deb
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Words of wisdom Capt Deb!!!
Anne Marie
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Captain Deb makes a significant point when she posts that she now considers her decision to undergo surgery for a relatively small AN was made on emotion instead of an objective, considered analysis that may well have resulted in doing nothing at all or, most likely, having the tumor addressed with irradiation instead of surgery. She is correct about some doctors recommending surgery for AN patients that may not need it and could benefit from observation ('watch-and-wait'). I was fortunate to find an AN-experienced neurosurgeon that considers the patients quality of life before he recommends/performs surgery. Although my AN was far too large (and severely intruding on my brainstem) for anything but surgery, I once recommended my neurosurgeon to a fellow who lived in my state and inquired about him via my posts on these forums. He made an appointment and when the doctor saw his MRI (he had a small AN) he immediately informed him that he wasn't a candidate for surgery but could benefit from radiation. He quickly made an appointment for the man (getting him in almost instantly) with a radiation oncologist that he had previously worked with and who was located in the same medical center. The neurosurgeon personally escorted him to the other doctor's office. The man eventually chose to go elsewhere for treatment but I was impressed with 'my' neurosurgeon's consideration for this fellow AN patient. It reminded me of why I had such great confidence in him when I underwent my surgery.
As Deb noted, choosing whether to have surgery, radiation or just observe (via MRI scans) to see if the AN grows remains a bit of a gamble (O.K., she used the more earthy metaphor 'crap shoot'). Acoustic neuromas are definitely a 'challenge' to both patients and doctors. I commiserate with Deb, knowing (through her posts) the torment she's endured since her AN surgery and the subsequent problems that have emerged to plague her.
Frankly, as I stated in my original post in this thread, posing the question 'is the cure worse than the condition?' is always going to elicit a wide variety of responses. Those with good outcomes will answer affirmatively (as I would). Those with less-than good outcomes, negatively, while those, like Deb, that believe they might have waited will have more complicated answers but from a different perspective - that of someone who now regrets not taking the time to analyze her AN situation with a bit more diligence and make a decision on facts and logic, not emotion. Something that is often easier said than done. An unsmiling doctor in a lab coat telling you "you have a brain tumor" can have a numbing effect on a person.
Captain Deb is a valued member of these forums and has become our 'go-to-gal ' for headache questions. A position she earned the hardest way possible. I appreciate that she offers her unique perspective here and hope that it (and the others) enlighten those looking at AN surgery (or radiation) with more emotion than may be prudent, can benefit.
Jim
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To further on the points that Captain Deb and Jim made, I wanted to say that in many countries it is standard practice to put patients with small ANs in W&W and not recommend treatment unless growth is established or symptoms become too troublesome. I remember that Ann (Keeping up) had posted once an article written by Canadian doctors Rutka et al who are well respected in the field, substantiating this approach.
Marianna
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I agree with Capt Deb. I had a small tumor and got very emotional about getting it out ASAP. Mine was not causing me any problems and I had just had a baby with my hormones going crazy. I wish I had waited for at least one MRI to monitor growth before I went under the knife. I convinced myself that all the percentages quoted were in my favor and I was not even very scared before surgery. After surgery, I was shocked at all the complications I experienced and I never imagined what life would be like SSD with crazy tinnitus. I have been trying to be positive about my recovery (only 7 months now), but everyday I feel sadness and regret that my quality of life has been greatly reduced. I wish I hadn't been so anxious and waited, not a long time, but long enough to see if it was growing and how fast. I also think sometimes small tumors are harder on the balance recovery and total hearing loss which happened to me during my surgery can be very shocking to your brain. I think it's easier when people have lost a little over time and it's not so disorienting.
I have a good friend who had surgery because her AN was huge and pressing on her brainstem. She urged me to wait, but I did not take her advice. I was very stubborn and honestly believed my recovery was going to be fairly easy. I wonder still about the 70% chance of saving hearing quote that I was counting on and wish I had not been so over confident without really considering the things that could happen. I feel like I was cheated out of my baby boy's first year as I have suffered so much dealing with the noise in my head and the noise any baby is going to make. Not a good combination. I wish my docs would have recommended I wait a little and enjoy my new boy.
I realize we all have different experiences and I am grateful that I don't suffer some of the other possible side effects and that my facial function is mostly back to normal. It was really a nightmare for me for at least 3 months, but things are getting better. I'm just scared to think about living with this noise for the rest of my life. I'll never lose hope that things will improve and there will be some new relief in the future. I wish I had known how disabling tinnitus can be and I did a ton of research before my surgery, but never worried much about the noise. It can change your life.
Maybe we should have a separate thread here in the Post Treatment section about tinnitus? I never know where to find posts on the topic and where to rant exactly. I do believe tinnitus is different for those who are SSD. I've spent a lot of time on ATA support groups and found that the things that soothe other sufferers like the shower and many masking noises only make mine go through the roof. No doctors seem to understand this either.
I hope we all heal over time and find a way to look back on this experience without regret as it only makes you feel worse. We all move forward from here.
Here's to continued improvement for all!
Hugs,
Amy
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Donnalynn says it so well - AMEN, SISTA!!! ;D ;D ;D
K ;D
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For some of us it means being here on the forum sharing our bad days, or not being here at all. I'd much rather be here to share :)
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i think we are all pretty well aliigned here in that everyone is different. Whilst a for a few of us the cure was worse than the condition, for many others the cure was successful and that is great.
I look forward to the day when AN's are zapped with a laser beam in a very simple procedure 9we can dream can't we?) till then I'm confident that our posts help others in making up their own minds one way or the other
laz
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There are so many calculations that go into the decision!!! Like Capt Deb, I had a very small tumor, and began having incapacitatiing head pain two weeks after the surgery. Pre-surgery, I was having moderate tinnitus and balance issues and just wanted the tumor out. I also was working at a job where they were starting to cut benefits and I was still relatively young when I was diagnosed. I decided I'd better have the surgery while I still had good insurance and sick leave and would likely have an easier recovery because of my age (so much for that last thought!) I don't regret the decision I made, but I wish the docs had been more forthcoming about the potential for headaches. They were probably the last thing the doctors listed among the many potential side effects and what many of us experience is not a headache, it's a HEADACHE.
staypoz
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When I first new of my AN 3 years ago I was so happy that I found this forum. It gave me the information I needed to help make a good decision. With all the pros and cons of all the treatments I decided to Wait and Watch. I figured with the symptoms I had for so many years anyhow and the size of the AN .12x.06 and my age 59 why take a chance on coming out worse. So here I stand today with every thing still the same as then, so far so good. Actually with the pro active healthy lifestyle I may have even improved a little. Here`s hoping that this option will last forever. Best wishes, Mickey
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You are so right! Although the doctors di mention the possibility of headaches post-op, they never explained how severe and debilitating they could become. As someone who has been suffering from these HEADACHES for 8 months now, I think doctors need to be more forthcoming with their patients. I would have still had the surgery, (didn't have much choice since it was leaning against my brainstem), but I would have been much more agressive in those first few months with seeking headache treatments, instead of thinking it would soon pass.
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Wow, Capt Deb, thank you so much for your honesty. I am in watch and wait and have not lost my hearing, my balance nerve is cooked, I have tinnitus, pressure, headaches occasionally, some trigeminal pain but I can put up with it for now, because sometimes the cure is worse and I am not ready for that. I understand that at times there is no choice but for as long as I can W &W I will. I hope you have have found peace with your new normal, keep fighting. Thank you all for your wonderful advice, I so needed it.
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Now that I'm post-op I can truthfully respond. I can't say that my post-surgery sensations are "worse", definitely different.
I had all but lost my hearing, and the Dr told me I wouldn't notice the difference. I lost my directionality. I notice the loss more now when in loud places, and when I'm driving my car with the window down, anything that blocks out my good ear. I think it was only a matter of time before I lost it if I hadn't had surgery.
I wasn't dizzy pre-op, and I still fight that 5 weeks post-op. Its a slow acclimation.
The only thing that truly drives me bonkers still is the chronic dry mouth and partial taste loss. I'm still praying for the day that significantly improves/returns altogether.
I think the fear of not knowing to what extent I would have left the tumor to grow had I not had surgery was worse than the surgery itself. From reading everyone's posts, I still feel lucky that I haven't had complications like CSF leaks or facial palsy.
Perhaps I may feel differently down the road, but I 'm glad I had surgery, just wish I'd have had my hearing tested earlier so we could've possibly saved my hearing.
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Rather than asking a new question, I searched and found this old thread. As the last posts were back in 2010 and knowing that over those five years there have probably been great advancements in surgical practices, I'm curious about how people who have had more recent surgeries would respond. I'm about to be 66 years old. I have been diagnosed with a 2.5-2.8cm acoustic neuroma in my left ear. I have minimal symptoms . . . a bit of hearing loss (but still 100% word recognition) and some tinnitus. I ride a motorbike daily, so I guess my balance is ok. All the doctors I've consulted have said "it has to come out". I am grateful for their care and want to believe them. It's only one month since I've been diagnosed and I'm still researching. I may decide to wait 6 months and have another MRI. OR, I may decide to schedule the surgery sooner. I know each case is different and I suppose someone who opted not to be treated wouldn't be represented on this forum. I'm still struggling with what life might be like post-surgery. I hope revisiting this thread isn't the wrong thing to do, but I do still hope responses will be helpful.
Thanks for everyone's patience as I (and others) work through the decision making process!
Gary
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Thanks for reviving this thread.
It just confirms my decision to "Watch & Wait."
I believe at the end of the day only "you and your family" really have your best interest at heart. Do all your research and make a wise decision that benefits you.
Thanks to everyone who contributed and shared their story. After reading some of these horror stories, now I know what they mean that an AN can be a terrifying diagnosis. It seems like it's one big gamble regardless of how much research you do. There will never be any guarantee when it comes to AN's.
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I read all the posts on this thread, and found the topic extremely interesting. I think the strongest message one can gain from reading this thread (whether you are considering surgery or radiation) is to not jump head first into any treatment until you do your research. This message is as important today in 2015 as it was in 2010.
Thanks for bringing this thread forward.
Cathie
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I guess you can say I jumped into surgery. According to the doctors I consulted that was my only choice. But I was much better before than I am after, even fours years later.
I was slowly losing my hearing and that was my only symptom. I was 39 at the time of diagnosis. The doctors thought that with my age and size of the tumor that it would eventually need to be removed. So I did it.
I don't necessarily regret it because I too think that was my only choice but I do wish I was better prepared for the recovery. Although the issues of headache, hearing loss, facial paralysis, balance issues, dry eye and more were touch upon before the surgery I just never grasped it. I would do more research now if I could do it over again.
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My cure wasn't worse than the condition.
Had retrosigmoid surgery on 5/31/07. AN was 3+ cms
Only permanent "side effect" is SSD - and I addressed that with a BAHA implant 9 months post op.
Life is great - and it's exactly the same except that I need "help" with my hearing.
Although surgery isn't the best choice for everyone, it definitely was for me, and I've always been (and continue to be) happy with my decision.
I consulted with one doc (a neurotologist who does both surgery and radiation) - knew he was the "guy" for me and never looked back.
The decision for the BAHA implant (also performed by my neurotologist) was one of the best I've made in my entire life; no exaggeration.
Jan
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I know I am a rare case - but I have actually gotten more benefits from my surgery than harm!
I had my tumor removed 2+ years ago, and now I no longer have headaches and motion sickness (which I did before my surgery). My slight loss of hearing and mild tinnitus are exactly the same, so I call that a wash. My balance and facial functions have remained the same as before surgery. The one thing that I had read on here was that I probably shouldn't ride roller coasters - which I have yet to try. I am going to Disney next week though, so I will see? But if that is the only thing that I can't do anymore, it was well worth it to know that I no longer have a tumor in my brain.
I would definitely re-iterate what people have been saying that you need to do as much research as you can until you make a decision that feels right for you.
I know there are a lot of "horror stories" on these threads, but there are also positive success stories too! They are much less common, but they are out there!
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Rollercoasters..
If anything with a stuffed up balance nerve I find roller coasters and other rides, and boats far less a problem now than I did before...
Call it an advantage of an Acoustic Neuroma.
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I truly appreciate the responses to revisiting this thread. I continue to do research and enjoy a relatively symptom free life. I guess that is what makes the decision to have surgery so challenging.
Gary
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Hi guys, new guy here and just got diagnosed. Can anybody tell me if University California San Francisco or Stanford is better with this issue. My tumor size is 3.5mm x 9.5mm is this considered small or large? Thanks
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Hi guys, new guy here and just got diagnosed. Can anybody tell me if University California San Francisco or Stanford is better with this issue. My tumor size is 3.5mm x 9.5mm is this considered small or large? Thanks
Since you're talking millimeters your tumor is considered small. At this stage, I am exactly 1 month post Gamma Knife and I'm happy I had it done.
Hopefully the Gamma Knifwe did the trick with minimal side effects. Only time will tell.
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I'll chime in and say I'm definitely worse post surgery, but I didn't really have a choice. I'd love to go back to partial hearing loss and slight imbalance/tinnitus.
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4.5 CM tumor and my removal definitely had it's challenges: SSD, facial nerve was removed during surgery, ringing in ears, eye problems, facial numbness (inside of mouth and on the side of the face), etc...
Honestly, I couldn't be happier. Clearly I would rather not have my issues, but these are the cards I have been given, so I now need to "play the hand".
At 4.5 CM, my only choice was surgery. The tumor was going to kill me. So in my case, the cure was NOT worse than the condition. After surgery there was a chance I would be on a feeding tube for the rest of my life. So why complain.. I'm NOT on a feeding tube.
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I agree with the above, you either live with headaches and all or learn to live with the hand ur were dealt with, at least ur living. I also have eye problems, facial paralysis, etc-but I am alive.
Feline
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Both my surgeries - AN and BAHA - were definitely better than not treating my AN and my SSD.
Neither are decisions that I regret.
Jan
Today, almost 10 years post op, my answer is still the same.
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I'm 8 years postop translab for a 2.7 x 2.5 cm left sided tumor. I am SO glad I had surgery. For me, the hell before definately got better. Yep, I'm deaf in that ear, balance nerve is gone, but walking our Golden Retriever every day sure helped with the balance. Even now 8 years later, I still have weird little facial twitches that show up on occasion. Well, that might be from the tumor regrowth but who knows?
I chose to radiate the sucker this time around, but if it decides to come back AGAIN, I will chose surgery again. It is challenging, some of the things to deal with afterwards, butfor me the outcome was psoitive and I liked know the sucker was out of my head (even tough it apparently liked it there so much it came back)!!! ;D
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"there is no compelling evidence of the superiority of SRS [stereotactic radiosurgery] to microsurgical resection or even conservative management" http://appliedradiationoncology.com/articles/interdisciplinary-management-of-acoustic-neuromas