Newly diagnosed – frightened, depressed and anxious

[edhayes]

I was just diagnosed with an acoustic neuroma after I had a MRI and IAC with gadolinium.
My chief complaints, which lead me to having an MRI was dizziness, headache and tinnitus.
The MRI showed “There is a extraaxial enhancing mass at the right CP angle extending into the right internal auditory canal.  This is inseparable from the right 7th and 8th nerve complexes.  It measures 1.3cm in width and 0.6cm in diameter.  It’s appearance is consistent with that of an acoustic schwannoma although the differential also includes a meningioma.â€?

I work in a large teaching hospital and my gut feeling is that they prefer surgery over non-surgical approaches such as radiosurgery.  I watched several videos of actual surgery and an excellent video from the University of Pittsburgh explaining the radiosurgery.

Radiosurgery seems  like a great option, no invasive anything, much faster recovery and less post procedure side effects.

Anyone have any idea or thoughts.

Thanks so much

[Dana]

Yes, it's frightening and anxiety-producing when you're first diagnosed.  I'm glad you found this forum, which gives LOTS of two ESSENTIALS -- compassion and knowledge.  I'm sure many others will 'chime' in with their support and feedback.  The first thing is to find out as much as you can about your situation, which is best achieved I think by having a team that is experienced with acoustic neuromas look at your MRI pictures.  I think I'm right that most teams expert with ANs are also expert in meningiomas, so they could give you the whole picture.  I have been very pleased with the team I found at UWashington (Seattle) that includes a otolarynologist surgeon (ear and balance expert), a base skull neuro-microsurgeon, and a base skull radiation oncologist.  If you can't find a TEAM that gives you all the options in an open forum/discussion, the next best would be to consult individually with one of each and get their opinions.  The ANA organization is right is emphasize the importance of finding those with acoustic neuroma EXPERIENCE.

The size stated in the MRI report would imply that you DO have options - wait and watch, radiological procedures (Gamma Knife, or Cyberknife, ...) or microsurgery (for which they are also several decidedly different procedures).

So, after you know all the physical facts about your AN etc, then start reading here and elsewhere about the different choices and decide which fits best for you.  We're all different, not just in the physical realities of our ANs, but in what feels right to us.  At a get-together in November, another gal and I were comparing notes -- to her, it was really important to "get the thing out", whereas I knew from experience the difficulties of even successful microsurgeries on the brain, so I was happy to choose Gamma Knife.

There's lots of experience and knowledge on this board, but it can also be overwhelming to try to sort thru it, so please feel free to ask questions.  Also, join ANA and get the brochures; they're very helpful in clarifying and outlining things.

Mainly, please know that you're not alone, there are many of us who have gone through what you're experiencing.  It's a blessing that the internet brings us together.

Where are you located?

Take care,
Dana

[edhayes]

I am located in New York, Long Island to be specific.

[jtd71465]

I had my suregry at NYU on January 10, 2007.  If you wish to discuss feel free to contact me directly.  I live in Princeton, NJ.

Joe-

[edhayes]

Thanks Joe
I will email you some questions.

[nancyann]

Hi Ed:  I had retrosigmoid & am one of the few who ended up with right sided facial paralysis.   I thank God it is an infrequent occurence, but it CAN & DOES occur.
I'm glad to see your looking at radiation.

Radiosurgery is a definite & smart option for you, given the size of your AN.

Wishing you all the best (from a New Hyde Park, Long Island girl),   Nancy

[edhayes]

Nancy
Where and who did the surgery and how long ago?
Would you recommend them?
If you had to do it over again would you look into the CK or the GK?

I live in Setauket and work at Stony Brook.  I know they do AN repair at Stony Brook but as far as I know only the surgical procedure.
That may be the best for me or anyone else but I want to explore my options.
Something about someone pooking around my brain frightens the hell out of me. (not that I could be more frightened at this point in time)
Take care.

Edmund

Hi Ed:  I had retrosigmoid & am one of the few who ended up with right sided facial paralysis.   I thank God it is an infrequent occurence, but it CAN & DOES occur.
I'm glad to see your looking at radiation.

Radiosurgery is a definite & smart option for you, given the size of your AN.

Wishing you all the best (from a New Hyde Park, Long Island girl),   Nancy

[nancyann]

Edmund:  I just returned you PM.    I had my surgery at University of Miami/Jackson Medical Center 6/19/2006 (I'll never forget that date).
I've lived in South Florida since 1990.
I would recommend CK, just from what I've read about others who went that route.

You're in NY, a good place to be.    I think Joe (jtd) can help you out as he posted earlier if you're interested in surgery.
Since I had a bad time with surgery,  I don't think I could be objective about it.
Joe did very well with his surgery,   I on the other hand, ended up with lots of complications....

Again,  wishing you all the best,   Nancy

[marymomof3]

Hi Edmund - I was diagnosed less than 2 weeks ago (and am also a resident of Long Island).  My AN is 1.8 cm.  I didn't even know what that meant 2 weeks ago - but boy have I been researching this to death!!!  I am grateful that interent exists to allow for this type of forum, and it's fortunate that we both found it during our search.

I have pretty much decided that surgery is the option for me.  I don't discount the benefits of radiation, but I can't live my live knowing that htere's something in my head that doesn't belong there.  I also don't really get a good sense of the long term effects of radiation... it seems like a newer treatment.  It is also my understanding that if the radiation therapy is unsuccessful, a subsequent surgery may be significantly more complicated.

Trust me, I feel the same way about someone poking around in my head...  but I feel like I just want this out of me.  and I pray that I don't end up with serious complications.

[nancyann]

Yes, Mary is right...   IF surgery is required after radiation, then it IS more difficult because the tumor becomes 'sticky' on the nerve.
But,  the majority of the time the tumor is 'laid to rest' with radiation.

People take into account their age, lifestyle, 'psyche.'

Well, there are pros & cons to all options.     You need to do what you're comfortable with.

I wish you both all the best whatever your decisions are.    This isn't an easy situation to be in......         Nancy

[edhayes]

Well I will see the chairman of the neurosurgical department on Tuesday and see what he says.  I work there so he is kind of doing this as a favor.
He is a great doctor but I just want to weigh all of the options.
If you go to http://www.acousticneuroma.neurosurgery.pitt.edu/index.html there is a great video that talks about gamma knife radiosurgery.
The doctor speaks about the "what happens if I need surgery after the GK" and he says it is not true that it is technically harder to do.
Hey you go to a Honda dealership and guess what, Honda's are the best, next door are the Madza's and guess what they say.
The GK guys all agree GK is the best and the same goes for CK and regular old surgery.
The only reason why I would like to opt for GK or CK is that the complication rates are much lower and time back to normal life is almost instant whereas surgery it could take 2 - 3 months before you are back to normal.
Have you found anyone on LI or are you going to head into the city?
Maybe we can get a group discount thing going.....  (kidding)
I will keep you updated.

Hi Edmund - I was diagnosed less than 2 weeks ago (and am also a resident of Long Island).  My AN is 1.8 cm.  I didn't even know what that meant 2 weeks ago - but boy have I been researching this to death!!!  I am grateful that interent exists to allow for this type of forum, and it's fortunate that we both found it during our search.

I have pretty much decided that surgery is the option for me.  I don't discount the benefits of radiation, but I can't live my live knowing that htere's something in my head that doesn't belong there.  I also don't really get a good sense of the long term effects of radiation... it seems like a newer treatment.  It is also my understanding that if the radiation therapy is unsuccessful, a subsequent surgery may be significantly more complicated.

Trust me, I feel the same way about someone poking around in my head...  but I feel like I just want this out of me.  and I pray that I don't end up with serious complications.

[Esperanza]

Hello Edmund, 

Sorry about your AN.  I had never even heard of them a month ago....

With regard to the GK, I keep coming up against the risks of radiation therapy with long term side effects and that here in the UK there are tending to raise the recommended age limit because of this (can I ask which 'decade' you belong to?!).
Anyway I will be really interested to read what you find out about some unbiased  pros and cons of treatments.  What size is your AN ? (if you don't mind me asking!)

Thanks, take care and good luck!

[edhayes]

I didn't hear anything about CK and age restrictions.
My AN is presently 1.3 x 0.6cm

Edmund

Hello Edmund, 

Sorry about your AN.  I had never even heard of them a month ago....

With regard to the GK, I keep coming up against the risks of radiation therapy with long term side effects and that here in the UK there are tending to raise the recommended age limit because of this (can I ask which 'decade' you belong to?!).
Anyway I will be really interested to read what you find out about some unbiased  pros and cons of treatments.  What size is your AN ? (if you don't mind me asking!)

Thanks, take care and good luck!

[leapyrtwins]

Edmund -

welcome.  I can certainly understand your feelings upon being diagnosed.  Most of us were thrown for a loop upon hearing that we had an AN - and most of us had no idea what an AN was. 

I don't want to tell you which option to choose - radiation vs surgery - as that is your own personal choice and should be something you decide.  Radiation is right for some, surgery is right for others.  However, I do want to chime in and say that if you have surgery, it doesn't necessarily take 2 to 3 months to return to "normal".  The usual time frame for recovery post op is 6 weeks.  I had retrosigmoid surgery on 5/31/07 and was back to work part-time 2 1/2 weeks post op.  Granted, I work a desk job and I didn't have any major side effects, but there are lots of others who had similar experiences - just read some of the posts on this forum.  The main thing to keep in mind is that everyone's recovery is different - whether they choose radiation or surgery.  I also have never heard anything that supports your claim that complication rates are lower for GK or CK vs surgery.  You might want to ask the neurosurgeon about that when you meet with him on Tuesday.

Choosing your treatment option is a hard decision, but once you educate yourself about each choice it will become easier to make a decision.  Make sure you ask a lot of questions and that your doctor has a lot of experience in whichever path you choose to take.  Whatever choice you make, you have the full support of the members of this forum.

Good luck with your appointment; please keep us posted,

Jan   

[sgerrard]

Hi Edmund,

I think I'll do some ranting today on a couple of persistent issues regarding radiation treatment. First though, let me post a link to the cyberknife support group. In addition to the Pittsburgh link you obviously already have, it is another important radiation link. There is a message board for posting questions that are usually answered by doctors currently practicing cyberknife, and you can also contact some of the doctors by email. It would definitely be worth a visit: http://www.cyberknifesupport.org/

Rant #1: While people seem to understand that consulting a surgeon about possible surgery makes sense, they seem to forget that consulting a radiation oncologist about radiation also makes sense. Neurosurgeons do not generally have radiation training; they don't practice radiation treatment; they can't possibly keep up with all the literature on radiation treatment, and they are not expected to, either - they are surgeons, not oncologists. Many of them simply refer back to the NIH Consensus Report on AN Treatment, published over 15 years ago in 1991 (e.g. it is still cited on the House Ear Clinic web site). That report pre-dates the 1997 clinical results from U. of Pittsburgh in 1997, and the last 10 years of cyberknife clinical results from Stanford.

So talk to a radiation oncologist about radiation, and talk to a neurosurgeon about surgery. If you are lucky, you may find an ENT or neurotologist who "brokers" treatment, and is fairly current on developments in both areas. Dr. Chang at Stanford is the rare exception, a neurosurgeon who performs surgery every week, and also practices CK every week, and publishes papers on CK. Of course he works with several radiation oncologists on the CK side, including Dr. Gibbs and others.

Rant #2: If any treated AN regrows, it will be more difficult to treat the second time, regardless of initial treatment. You can quibble about the relative regrowth rates of different radiation treatments and different surgical approaches, but overall, the chance of regrowth is basically the same for radiation and surgery. In both cases, if the tumor regrows, it will now be tangled up with scar tissue as well as nerves, and be more difficult to treat. The notion that regrowth after surgery is somehow cleaner than regrowth after radiation is not borne out in the real world - surgery also creates sticky scar tissue. The illogical comparison sometimes made between initial surgery versus surgery on regrowth after radiation, is an apples and oranges comparison of little value. Besides, some surgeons have stated that the additional stickiness is not a big problem anyway.

Rant #3: Radiation might cause cancer - if you were exposed to full body radiation when the atomic bomb went off over Hiroshima. There is scant evidence that it ever happens as a result of radio-surgery, that is radiation focused on a specific target. If you must list this as a possible danger for AN radiation, then you must also point out that more people die from AN surgery than get cancer from AN radiation treatment (by both count and percentage). Fortunately, neither event occurs often enough to be relevant, it is part of the general background of risk in all medical procedures.

Okay, I feel better now.

Steve