Author Topic: newly diagnosed  (Read 5907 times)

bobby

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newly diagnosed
« on: January 29, 2007, 01:56:39 pm »
I have been recently diagnosed with a 2.5 cm acoustic Neuroma.  I have lots of questions about what to expect.  I am scheduled for surgery at OHSU in Portland Or. on the 12th of march. I have lost 65% of my hearing on tumor side.  I am experiencing head aches, light headedness, can't concentrate, etc.  Are these symptoms common for pre-treatment?  Or are they more related to the stress.  Or are my symptoms a sign that I need to get this tumor removed.  Has anyone opted for the watch and wait?  Post opp people- Was it worth it? 
I am having second thoughts about the surgery.  If I watch and wait or have the radiation treatment, will I still have these symptoms?  I don't know what to do, still in shock. ???
Thanks, Bob

ppearl214

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Re: newly diagnosed
« Reply #1 on: January 29, 2007, 02:17:01 pm »
Hi Bob and welcome :)  Glad to see you here (although not glad for the reason) but know that we are certainly here to help you out.

No, you are not alone in the symptoms, the anxiety, etc that you are feeling. There's a great thread here that was recently started, that has wonderful inputs from others here that have gone (or are going) through all forms of AN treatments... from microsurgery to radiosurgery to watch/wait.  Here is the link to the thread:

http://anausa.org/forum/index.php?topic=2811.0

There some great thoughts/inputs there and may be worth taking a peek.

Although most of the post is regarding a particular treatment center in CA, if you dig through the thread, there are some wonderful referencing regarding researching, different approaches, etc.  To me, worth a good read.

the only real suggestion I can give you is this.  Take a VERY deep breath.  Now, try it again! :)  Know that by reaching out here, we can share thoughts/experiences with you to help you make the best/well-informed decision you can make for you and your sitaution.  If you decide to keep the surgical date that you  currently have scheduled, we are going to cheer you on during the surgery and recuperation.  If you opt for different, well heck.. you're still stuck with us :)

We're here for you Bob. Hang in there!

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"

Lorenzo

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Re: newly diagnosed
« Reply #2 on: January 29, 2007, 02:25:02 pm »
HI Bob,

Did you have those symptoms before you were diagnosed? If not, then one could assume they are more stress related since the news. Stress can increase symptoms' intensity in my experience.

My AN was 26mm at treatment time (CK) and I had a 70% hearing loss. At the time of diagnosis the size was around 22mm. I opted for W&W for a year but then I felt things started moving in there... W&W gave me time to look into alternatives to surgery. I found CK!

As for post-treatment, we're all different. It all depends so much on location as well as size. I didn't have headaches before treatment except occasional ones, but now I get them more often particularly when the waeather impacts / changes. Concentration difficulties will still be there after treatment, possibly worse intitially but improving over time. Hearing loss is now -5% from before treatment, so down a little. I don't mind really, it's useless anyway to me.

I must point out again though that this is MY experience, not everybody has the same story.

I would suggest that you take a bit of time and do some research and talk to radiosurgery specialists. That way you know for sure what the options are for you and you get answers from the people that know. Most of all, try to keep calm and stay focused, this usually gives us time to look around for options.

The limit for radiosurgery in terms of size is around 26-30mm depending on the system used. But you really need to talk to specialists in the field to have a definitive opinion on that.

So, good luck, and feel free to ask questions.

Ciao, Lorenzo


nancyann

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Re: newly diagnosed
« Reply #3 on: January 29, 2007, 02:56:41 pm »
Hi Bob:
I had 80% hearing loss pre-op; didn't think a thing about the surgery, thought it would be a piece of cake:WHAT A MISTAKE !!!

Just make sure you're in capable hands. 
I ended up with right facial paralysis,   if I sound harsh, forgive me - after 7+ months of dealing with the paralysis I'm about fed up, it's very tiring, having to work, etc.  & deal with eye issues, balance issues, etc. 

The size of your AN is just on the border of having radiation instead - it's a toss up. It'll depend on where your tumor is located, etc.
I had very experienced surgeons, & still ended up with the facial paralysis - for some reason my facial nerve stopped signaling as soon as they hooked it up to the machine, before even beginning the tumor removal.

Don't blame you at all for having second thoughts.   If I had to do it again I'd have radiation.  My tumor was a full 2cm.

Wish you all the best Bob,    Nancy
« Last Edit: January 29, 2007, 08:34:43 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Obita

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Re: newly diagnosed
« Reply #4 on: January 29, 2007, 04:01:30 pm »
Hi Bob and welcome to the forum:

Your AN is exactly the same size mine was.  I had a radiation consult also and I might have gone that route IF the AN would not have swelled after treatment and if it was not starting to compress the brainstem.  The pressure in my head was awful, but no headaches.

If you are second guessing yourself, at least postpone the surgery for now.  Microsurgery is a huge deal.  The surgeons don't know what they are up against until they get in there.  Some come out easy, some are stuck to the facial nerve and sometimes they will need to leave a little to save the facial nerve.  The residual tumor is then radiated after recovery from surgery. 

An AN is a scary diagnosis and I think even more frightning is that treatment is up to the patient.  BUT, after many hours of reasearch and talking to people, you will be glad that the decision is yours.

I had microsurgery 3 years ago this May and I am fine other than being deaf in my left ear as I knew I would be and multi-tasking does not come easy.  My hearing loss was 70% and words were garbled on the phone.  I did not notice the facial twitching until the day I was diagnosed.  I had the normal facial numbness post-op but no balance problems.  My good side had already compensated for the loss of vestibular function on my AN side so that part of recovery was easy for me.

Whatever you decide, you must totally trust your doctors and be convinced that they have treated enough ANs to know you will have the best possible outcome.

Good luck Bob and send me a note if you have any questions. 

Kathy

ps:  For me, yes it was worth it.  BUT, I was very lucky.

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

nancyann

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Re: newly diagnosed
« Reply #5 on: January 29, 2007, 08:19:31 pm »

   Nice save to my bluntness Bruce,

                                                    THANK YOU !!!!!


  ps.  glad you ' have my back', as the 'younger generation' says.

    Good luck with your ENT appt.,     Nancy


 

   
« Last Edit: January 29, 2007, 08:29:13 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

ceeceek

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Re: newly diagnosed
« Reply #6 on: January 29, 2007, 08:44:17 pm »
Hi Bob and welcome to our group.
I too am newly diagnosed but have learned a wealth of info in the last several weeks. There is no way I would have surgery so soon unless there is a huge potential problem...Batty princess was a case that was super rush but so far most of us have had the time to at least consider some options.
I am currenlty waiting hopefully to see if I am candidate for CK. the size of the mass and where it is does limit whether or not you can use GK, but with CK it does not matter. There are lots of info sites about both but so far the most helpful to me has been www.cyberKnife.org if you dont find it that way, just look for cyberknife patient support group and it will come up. It has been major resource.

There are many people whom have also had succesful surgery and I have found that many people on the support groups such as this one tend to have problems which makes it seem worse than it is, as those that were succesfull 100% no longer need said support, so don't panic when you read about the various problems...

My biggest suggestion is get SEVERAL opinions before proceeding. If you are concerned about determining exactly what type of growth you have perhaps you can consider a biopsy..depends on location....research research research.....
AND, Hang in there, alot of info on the web etc. is really outdated. Many more people have these types of growths than what appears on the web etc. So the info is out there, you just have to look look look.

Let us know how it goes.
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

nancyann

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Re: newly diagnosed
« Reply #7 on: January 30, 2007, 11:16:52 am »
Hi Ceeceek:

An FYI:  I was told there was a 5% chance for facial paralysis,
            I think alot more now when I hear there's a '5%' chance for anything.
            It IS worse than it seems as far as I'm concerned.

Regards, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Sue

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Re: newly diagnosed
« Reply #8 on: January 30, 2007, 04:53:13 pm »
Hi Bob:

I am a transplanted Portlander, living in Vancouver. I suppose you live in the Portland are so it's nice to see a fellow Oregonian (I'll always be an Oregonian, no matter where I live...) on the forum, although I'm sorry you have to be here.  I too, was shocked to learn that I have a brain tumor, although after a year of not understanding why the doctors couldn't figure out what was wrong with me, it was nice to finally get a diagnosis.  My family doctor is through the Vancouver Clinic and I was refered to neurosurgeons who have their offices in the Southwest Washington Medical Center. They are with Rebound. I have Dr. Modha and he suggested I was a good candidate for radiosurgery.  Vancouver now has a Cyberknife set up at Legacy, but that wasn't ready yet so we went to Providence at the Gamma Knife Center.  So, if you end up changing your mind about surgery, you have the option locally of GK or CK.  My procedure was done April 18, '06 and my next MRI is now scheduled for Feb 8th and I really hope that rotten thing will be in necrosis. Die, Tumor, Die!!!   ;D

I never had the headaches or extreme balance problems, but I can relate to the light-headed feeling and the lack of concentration.  I also have tinnitus (as most of us do) and I have facial numbness on my AN side. That includes the inside of the mouth on that side and part of the tongue. Are we having fun yet? Tinnitus rarely goes away once your brain latches on to it. If you don't have that, consider yourself a lucky man. The "fullness" in the ear that I had did go away for the most part, and I'm glad at least one symptom subsided. My doctor thinks the numbness should eventually go away, but I'm not expecting that to happen so I can be pleasantly surprised if it does. I'm just hoping nothing gets worse!  I doubt "watch and wait" is an option for you since your AN is already at 2.5 cm.  You want to kill that thing sooner, rather than later - - at least that's my opinion.  It's slow growing, but somewhere along the line it finally tips the scale so to speak and can cause your symptoms to change/intensify. At least, that's what I think.  Anyway, AN's are a weird tumor, because it just depends on where it has decided to grow in relationship to the symptoms that you have. Some people experience extreme problems and their AN is very small. Other's have grown huge AN's without a clue they had it until it was literally life threatening.

And I'll tell you one more thing, Bob!  You have found a wonderful site here and these guys and gals are wonderful people.  They are vastly more knowledgeable than me, and they will be happy to answer any question you can throw at them.  I wish you the best of luck in your treatment and road to recovery. If you would like to talk to me personally, that would be fine. Collins30038@aol.com  We can always chat on the phone if you prefer.  Or not.  Hang in there, kiddo.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

ceeceek

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Re: newly diagnosed
« Reply #9 on: January 31, 2007, 12:11:52 pm »
Hang in there, and Nancy makes a good point, 5% is 5%, BUT compared to 5% of other problems is what needs to be weighed....no proceedure is without risks, after all, we all have in common a growth in a bad place period..and no matter what surgical or Gk, or CK, normally a decision needs to be made or that 5% can really turn ugly.
One of the toughest decisions will be for you to decide, what indivudually is correct for you. Each person has there own priorities, I have seen people post that they had say, loss of hearing and it was not big deal where others it was a huge issue. It all depends upon what is of major importance for you...you may even consider the watch and wait, plenty of people do (most definately not for me..but see, that is my  personality), keep researching keep asking lots of questions and you will come up with the right proceedure for you and remember we are here for you when it gets overwhelming.
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

pearchica

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Re: newly diagnosed
« Reply #10 on: February 01, 2007, 02:01:15 pm »
Bobby: I too was diagnosed with your size tumor- And after 3 surgical opinions I finally went to see Dr. Stephen Chang @ Stanford. He is a Neurosurgeon that specializes both in surgery and radiation. Everything on the web will tell you that you aren't a viable option for radiation, given the size of your tumor. (This is not true- Chang told me yesterday during my appointment that the largest neuroma he has treated is 3.6 CM). Chang will give you an unbiased opinion- I'd give it a shot and hold off on surgery if you can (I myself have been kicking and screaming all the way through this resisting surgery - only to have given up hope prior to my consult with Chang.  I am in the process of scheduling a cyberknife session as Chang said it was in my best interest.  Many people have positive outcomes with surgery- however for me surgery has so much more risk than what is warrented.  If you do decide to have surgery, I think it will be great that you are at a academic institution where a team approach is used- that's critical for a surgery. Take care, know we are here to support you. Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

jtd71465

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Re: newly diagnosed
« Reply #11 on: February 01, 2007, 05:53:08 pm »
B-

I opted for surgery, retrosigmoid approach on January 10, 2007 @ NYU Medical Center with Dr.'s Roland(Neurotologist) and Golfinos(Neurosurgeon).  My outcome to me was great.  No facial paralysis.  No complications from surgery.  Surgery was only 3.5 hours long.  Hospital stay was 4 days.  The one thing I do not have at this point is useable hearing in my right ear (but I knew that there was a 50 - 50 going into surgery that I may lose it).

I was diagnosed in the middle on November 2006.  Wait and Watch was not for me, I would have driven my wife nuts asking her everyday if she thought I was going to be OK, or does my face look different....I just couldn't do it. 

I consulted with 4 teams (2 in NY, 1 in NJ and 1 in LA(who's that?).  And I opted for NYU.  Golfinos does both type of surgery's that have been mentioned on this post and he said that microsurgery was the way to go for me(41 years old, tumor was 1cmX1cmX7mm)....I felt at extremly comfortable with this team, making MY decision easy....

On 1/10/07 I walked myself into the O.R.....would I do it again?   In a heartbeat, with Roland and Golfinos.  Research, research, research....get as many opinions as you need to feel comfortable...then make YOUR decision.

Everything in life is a risk...am I lucky...maybe...did I put myself in the best hands...absolutley.

Also, keep in mind no two people are the same and no two tumors are the same. 

I wish you the best.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Jim Scott

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Re: newly diagnosed
« Reply #12 on: February 04, 2007, 04:44:59 pm »
Hi, Bob:

Welcome to the forum.  Too bad you have to develop an acoustic neuroma tumor to join us, :(  but at least you'll find both needed information and lots of support here.   Although radiation remains an option in your case, and I would certainly consider it, you need to get at least a second opinion from another doctor.  Probably a third or fourth opinion, to be realistic.  Some nuerosurgeons seem fixated on surgery, while some are more concerned with what's best for you.  I had a surgeon like that.  He recommended retrosigmoid microsurgery, followed by FSR treatments.  Of course, I had nerve monitoring during the operation.  All went well.  No facial paralysis or numbness, CSF leaks and so on.  I was driving within 2 weeks of the operation and resumed most normal activity within a month.  I'm very thankful.  To be fair, I have to insert the caveat that we are all unique and because one AN patient has a trouble-free surgical outcome doesn't mean everyone else will.   Even radiation, although not 'invasive', carries it's own risks and rewards.   

Many of us had similar symptoms as the ones you describe, pre-op, although I really believe that stress is a factor in some AN symptoms.  I'm one of those AN 'survivors' Sue described who developed a huge AN tumor yet had few symptoms, until it began pressing on my brain stem.  7 months post-surgery, I'm fine.  My previous balance 'issues' are about resolved, my hair has long since grown over my surgical scar and except for being stone deaf in my left ear, as I have been for quite a few years, you would never know that I had what almost amounted to emergency surgery plus 5 weeks of low-dose radiation last year to remove a huge AN tumor.  Life goes on. 

AN microsurgery is very necessarily intense and somewhat challenging for the surgeon.  The neurosurgeon as well as his or her 'team' must be highly skilled.  Even then, there are no 'guarantees' (about a successful outcome) due to the unknown nature of exactly what the surgeon will find once he/she 'opens up' your skull to remove the AN tumor.  Then, a variety of factors kick in.  Where the tumor lies, etc.  This kind of delicate surgery is a definite risk, as any honest surgeon will tell you, although, for AN removals, the mortality rate is negligible (under 1%).  Most AN microsurgeries last from 6 to 12 hours, depending on complications and/or the surgeon's skill..  My AN was 4.5 cm and the operation, which removed only about 50% of the tumor, lasted a bit less than 9 hours.

Following surgery you'll go to an ICU.  You'll be very tired and sleep - a lot.  You could be in ICU for 2 to 5 days, depending on how well you respond, your doctor's evaluation of your post-op condition and whether any complications arise in your recovery, such as a CSF 'leak', which can happen.  In the  ICU, doctors and nurses will be doing quick neurological tests on you ("follow my finger") about every four hours.  You'll be given steroids to prevent brain swelling.  It's tedious, at best, even if you do sleep most of the time.  Your doctor will make the call as to when you can be released to a'regular' floor and/or be discharged  I was in the ICU for a bit over 4 days.  I had no complications (and no headaches, either) and rebounded really well.  I was discharged on my fifth day in hospital after 'proving' to the nurses and PT folks that I could walk by myself with no real problems.  Then my surgeon said "O.K."  This is fairly typical.  Once home, you'll still be quite weak and need a lot of rest.  You could have eye, balance and/or headache complications - or not.  No one can foretell exactly what will occur in any specific post-op AN surgical (or radiation) patient. 

You still have time to opt for radiation treatment over microsurgery but, of course, that decision will be up to you.  It's a big decision and you should continue to educate yourself before making it final.  This site is a great place to do that.

I wish you well.

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.

mellowrama

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Re: newly diagnosed
« Reply #13 on: February 04, 2007, 09:27:42 pm »
Hi Bob,

Welcome to our group - I"m probably sounding a bit like a broken record by now, but be sure to take your time (assuming you have it) and make the right choice, based upon lots of research and feedback from multiple docs on your situation.  I heard many different opinions thru my period of "wait and watch" - and research.  I feel as though it was definitly worth the 6 months I waited before I made the final decision after a yo-yo rollercoaster - for me, making the least invasive decision was best.

best wishes for you,
melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011