Questions re: Watch and Wait, surgery and middle fossa for small tumor (newbie)

[jockieau]

Hello All

I've been very grateful to the forum which I have been browsing over the last two months.  I was diagnosed with a small (8mm x 5mm x 4mm) AN in early Decembe 2010. My symptoms are minor, fullness of ear and some "wonkyness". My hearing test shows my hearing as normal.

My appointment with the specialist was earlier this week. He advises watch and wait, on the basis that 1. I'm doing fine now and 2. Surgery (my preference if something is to be done, as I would want to get rid of the AN) brings risks, to the facial nerve and hearing, in that priority, and 3. ANs are slow growing, which mine "probably will be".  I'm concerned that 6 months ago I felt fine, then over a week I felt fullness in the ear, which says to me things are nudging along...  

Prior to going in to the specialist I was convinced they'd be recommending taking it out asap. The reason I thought that was because by removing the AN, they could possibly keep my hearing as is (I do know of course the risk of losing it, the specialist said 50%).  After having seen him I can understand the logic of watch and wait. My current strategy is to find the doctor I want to have to manage my case (I didn't warm to my guy), and wait and see what the MRI in 4 months time tells me. Even if he had recommended surgery, I still think I should wait until the next MRI to see how things are panning out.

I have seen that some people have had surgery with ANs the same size as mine (or thereabouts) and am interested to know why they chose to. I'm just concerned I might be missing something here that I should be considering.  In any case, I will be seeking other opinions from specialists to get their thoughts.

The other thing the doctor said was that he does not recommend middle fossa - he said less doctors are doing it now because of post surgery complications (harder to get brain sawdust out of the skull??? or some such? leading to headaches). I told him I had not heard that and that from what I knew the House Institute was doing it as a standard. Does anyone have any views on this?

Just by the way I am in Australia, and - deep breath - 47 years of age  

Any thoughts most welcome.

Regards
Jockieau

P.S.

I forgot to add that he also told me that even though I don't have tinnitus now, I could have after surgery.  I tried to clarify whether he meant "as much chance as the next person in the street who might just happen to get tinnitus one day" or as a result of the surgery. He was a bit squirmy on giving me a clear answer (I felt like he was painting worst case scenario re: surgery for me).  I told him I wasn't aware of that and had not read that was a possible outcome. Has this happened to anyone (no tinnitus beforehand, tinnitus after surgery)?

Thank you!

[TJ]

Welcome to the forum,

Your AN is just a bit smaller than the one I had.  And you have to remember that the decision you make will have to be made for you t.  My AN had grown to 1 cm after being on
W & W for about 2 years.  I decided to have CyberKnife Radiation instead of surgery.  The main reason I made that decision is because of saving my hearing it on that side.  You are correct in saying about 50% loss of hearing with surgery, plus there may be damage to the other nerves.  Radiation is a bit better at about 85% saving the hearing.

At first I wanted the thing out as many do, but I looked at the side effects of surgery and went with CK.  Of course there are side effects with each surgery or radiation.  Also since your AN is still considered small as mine was the CK was an easy process.

Best of luck and I hope this helps some

TJ

[Sue]

G'Day and welcome to the Forum.  We have had several Aussies on this forum and maybe one or two might chime in here, if they see you live in Australia.  Sounds like you are doing some homework with regards to your AN treatment.  Good!!  Knowledge is power.  Sadly, none of us can say what our outcome will be, no matter how much info we accumulate.  Each person is unique and will respond differently to the treatments.  So, having said that..this is what you do.      You make sure that your doctor is the BEST that you can find.  You make sure that whoever does this has many, many, many surgeries under their belt.  Some people have had the blessing of a great doctor with a great bedside manor.  Some people have had a great doctor with not much bedside appeal, but they took experience over personality.  Some people have gone with the first doctor through the door, and have regretted it.  So, yes...shop around until you find the one that puts as many checks in those boxes as possible. 

Tinnitus was my first symptom.  Many AN patients have tinnitus.  There are a lucky few who don't.  I envy them.  My tinnitus is a constant zzzzzzzzzzzzzzzzzzzzzz that has minor fluctuations in tone and intensity.  It's hard to describe.   It started off as a very minor noise, and has gotten louder over the years.  I'm sure that what it has stabilized to now, is what I will have for the rest of my life.  If I could get rid of my symptoms in the order of annoyance it would be a toss up between tinnitus and my facial numbness for number one. 

This is a great place for information, comfort, commiserating, and venting.  Some of the folks on here are very knowledgeable and a great resource for new patients.  I wish you well on  your treatment and recovery.

Sue in Vancouver, USA

[CHD63]

Hi Jockieau and welcome to this forum .....

Sue gave you good advice regarding seeking a medical professional with the most experience specifically in treating acoustic neuromas.  Because of the location of ANs, it can potentially involve several cranial nerves that run very close together off the brain stem.  You want someone with vast experience dealing with these tiny nerves in a very small space.  ANs can come out very cleanly or they can be very sticky ...... and to my knowledge (I am not a doctor) it is virtually impossible to tell which type you have before getting in there.  This is also why it is impossible to guarantee the outcome for anyone beforehand.

As TJ said, only you can make the final decision on type of treatment.  I chose surgery for three reasons:  1) mine was deemed to be a rapidly growing type (very unusual) 2) I had had radiation treatments to my head as a teenager and did not like the thought of risking more exposure 3) I really just wanted the thing out of there.  But, these were my reasons and I do not regret choosing the surgical removal route.  However, you must do what is comfortable for you.

About the sawdust ..... I have heard this idea thrown around and I do not know if it is valid.  I personally think much of it depends upon the skill of the surgeon.  To the best of my knowledge, HEI does all three approaches and decides upon the approach depending upon many factors including the size and location of the AN, the amount of hearing the patient still has, and the wishes of the patient.

Re the tinnitus:  sadly to say, I am one of those who never had it before surgery, but I do now.  Much of the time I can refocus and ignore it and it is indeed better when I wear a hearing aid in that ear (I retained 20% of my hearing, with 100% speech discrimination).  It is pretty universal that those of us with any kind of hearing loss do much better in a quiet environment with one on one conversation.

Many thoughts and prayers as you work through this decision-making process.

Clarice

[Cheryl R]

I was thinking the saw dust issue was more with retrosigmoid.          I have had mid fossa on both sides due to NF2 and had no headaches  or sawdust issue.          In the US there are some drs who do mid fossa but in other countries have no idea.    Whereever, you have to choose a surgeon who does that form of AN surgery on a frequent basis and not just one or two.   
I had tinnitus before and also after surgeries with not not much change in loudness but I do get varying types of noises from day to day.    Louder by evening when is more tired.    Not fun but can ignore it most of the time.   
            Good luck in what ever dr and treatment you choose!                         Cheryl R

[jockieau]

Thank you so much to all for replying. It is really helpful to hear your stories. Interesting about no tinnitus before and having it afterwards - I have learnt something new with that. I have corresponded with a few peole from the forum in Australia and it has been really helpful to hear local stories. I will continue to research and see further opinions. I may even send off my MRI etc to the House Clinic and see what they have to say (now that would be an investment  ) - I would be interested in their take, especially as they do middle fossa.

Thanks again, I do appreciate you taking the time to respond to me.

Best regards
Jockieau

[chrisransom]

Jockieau, welcome to this forum.  I too was recently diagnosed and am still considering the options.  First - "sawdust"?  Thank you so much for that image!  I thought I was getting over my trepidation about the whole thing.  Sawdust.  Thanks, mate!  Seriously, you're among a good group of people here.  I hope it brings you some comfort.

All kidding aside, I've had tinnitus all my life and I am anticipating that if I have it after whichever option I choose that I will already be used to it and won't have that to deal with.  I manage my ringing by having a modest amount of background noise around me at all times.  Quiet summer nights when I am trying to sleep are the worst for me but I recently bought a little machine that makes sounds like ocean waves, or a babbling brook which I can turn on when it bothers me.

I hope that helps!

Welcome and Take Care!
Chris

[Mickey]

Hi Jockieau! I see your off to a good start by doing  your homework and getting all the knowledge you can. You can pick up alot here from everyone`s experiences by going into the data bases. Fortunately your AN is very small with minimal symptoms which leaves you the time to choose any option you feel is good for you. My AN is .12x.06 and I have chosen to W+W going into my 4th year now (stable). Diognosed at 59 I`ve had tinnitus for 30+ years   my only symptom of any disturbance, with minor hearing loss and headaches very minimal. I feel good! My plan of attack is for a very healthy lifestyle staying the course unless something tells me its time to act on onother option. Wishing you the best, Mickey

[Keeping Up]

Hello Jockieau

Welcome to this whole new world! 

Your story sounds similar to mine - small, asymptomatic tumor (aside from fullness, hearing loss and I have constant white noise tinnitus).  In my opinion, the notice of additional symptoms may be because you are looking for the symptoms.  I only notice tinnitus after I was told I had hearing loss ... I know it just didn't show up overnight, I just started to notice it.

You will read people's stories - similar size tumors can have dramatically different symptoms, add in insurance availability, stage of life, personality and post-diagnosis MRI results and many different decisions will be made.

I am watch and wait - after a diagnosis in November 2008 (so 2+ years ago).  I was seeing an ENT who recommended W&W for small stable tumors (or older patients).  He has been following a group of patients for now 10+ years - and his studies suggest 60%+ of these tumors won't grow materially in 10 years and won't require any active treatment.  (I have the copy of the study if you are interested).  I strongly believe I will fall into that lucky group (I think the percentage was 68%) and won't need any treatment for many years to come.  I obviously will have the tumor monitored as recommended by the doctor (18 months between my last MRI and the next one - due up in July 2011) and I also know I will progressively lose my hearing (I have a pure tone average of about 35db on the tumor side - so still a mild/moderate hearing loss.)  I did consult with GK and a neurosurgeon - both recommended to wait it out.  GK said as long as it doesn't grow wait until the hearing is no longer useful (many more DBs to go) then contemplate GK (the Toronto GK clinic wasn't that supportive of maintaining useful hearing much longer than a simple W&W protocol - a very debatable topic!).  The surgeon was bold and said he could nip out the tumor in a short period of time with good facial nerve outcome (80%)but not so good hearing outcome (20%) - so he too said to wait until I lose the hearing. 

So, I am just waiting and show up for my MRIs as prescribed.  I am relatively young - diagnosed at 36, now 39 years old.  I am the mother to four young and very busy children.  I work full time.  I am relatively active (ski, bike, swim, skate and otherwise run after children.) This tumor doesn't create any issues for me (hearing loss on the other hand is a bit more curious ... I really don't hear that well in certain circumstances which frustrates the crap out of my husband!).

Keep reading, keep researching, keep looking for the right doctor for you.  Eventually, the correct path for you will become clear. 

Ann

PS ... for the record, if I did need active treatment soon, then I would go with surgery.  It is my gut instinct of the best long term treatment for me.

[moe]

A belated welcome Jockieau
I had to go the surgery route because of size and location, but wanted to say hi. This is quite the journey and we are here for you!
Moe

[Rivergirl]

I chose to W & W when first diagnosed in the hopes that it would not grow.....I wasn't ready to loose my hearing if I didn't need to just then.  But some can W & W and some can't, just research your options, best of luck in your decision process, it is not easy, wish it was as simple as an appendix.

[leapyrtwins]

Jock -

although my AN was larger than yours, I totally understand where you are coming from.  I had the options of W&W (but not for too long), radiation, or surgery.  After weighing all the pros and cons, I decided that surgery was the best thing for me.

That's the key.  You have to do what you feel is best for YOU.

Some people W&W for years and it works very well for them, but you have to ask yourself "am I the type of person who can watch and wait".  In my case, I wasn't - it would have driven me crazy.

Facial nerve damage and hearing loss are very real possibilities in the case of surgery, but keep in mind that mid-fossa usually minizes these possibilities.

Is radiation a possibility for you?  It's usually a possibility for most small tumors.

As for the tinnitus.  I, thankfully, didn't have it prior to my surgery.  After my surgery I didn't develop it.  I don't know if I'm a unique case in this aspect for not; this is just my experience.

If you haven't contacted the ANA yet to request their informational brochures, you should do so.  They are very well-written and may help you make your treatment choice.  In the end, go with what you are comfortable with.

Best,

Jan

[OTO]

Somewhere in the archives (back from 2007) there was a discussion thread started by an Aussie that mentioned the same thing re: middle fossa, dust for the incision thru the skull and headaches.   That person said his doctor in Austrailia will no longer use middle fossa because of it.  So I remember reading that before.   I know within the forum and in other literature there is discussion on incidence of headaches post-surgery caused by the various methods.   I can't remember the exact reasons why it might occur.     

[TELiner]

To Keeping up-

 You said your doctor had been following a group of patients for now 10+ years - and his studies suggest 60%+ of these tumors won't grow materially in 10 years and won't require any active treatment.  (I have the copy of the study if you are interested).

Could you send me a copy of his study?

Thank you,

Hi TELiner and welcome.  Your personal email/contact info removed due to site/forum rules but... folks can PM/Email you here on the site to share if they have the info you seek.  Best wishes and thanks for understanding. Phyl