Is the cure worse than the condition?

[lawmama]

I have no regrets.

Lyn

[Desilu]

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

[james e]

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.

[kiwi]

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

[Larry]

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

[nteeman]

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

[FlyersFan68]

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.

[Jackie]

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

[4cm in Pacific Northwest]

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    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   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   to educate people about AN tumor “stuff”. 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   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 forward”. 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 “cure”.  (Gee don’t I sound like a Treky?     "Beam me up Scotty!”   ) 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.   (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 (GP”) …  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   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 condition”
… 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?”
 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.

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   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.   But currently I still identify mostly with Daisy   )

[joebloggs]

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.

[bell]

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 

[wendysig]

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

[leapyrtwins]

Basically I'll take life over death anytime.

ANs that are left untreated have the potential of growing and eventually leading to death.

Jan

[Jim Scott]

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

[Larry]

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