Do all watchers and waiters eventually get treatment-even if its years later?

[HeidiC]

I'm sorry to hear that Phillip.  Mine is small as well, but since I am having symptoms I am leaning more towards surgery.  My consultation with the Neurotologist isn't till August 2nd, so for now I am waiting!

[LisaP]

Hi,

I have daily symptoms, still W&W, 3.5 years now into this journey, not sure if all AN's seek treatment once dx.  My next MRI is in Oct.  If no growth, try to get thru another year, if growth then will have to make a decision, leaning more toward radiation.

LisaP

[alabamajane]

Heidi,
I have been a w&w also for about three years,, but this past year my symptoms  have worsened so I consulted with another Dr and am transitioning to surgery with in the next 4-6 weeks..waiting on appt. It is a VERY difficult time because you wonder if you are doing right by waiting and don't want to wait "too" long and have more complications.. for me,, mine is a large tumor 2.8cm mostly in the CPA area with little extension into the IAC (ear canal) and pressing on the brain stem.. so it is time for me to transition.. my symptoms include pretty severe headaches, dizziness, fullness in the ear and some ear pain, wonky headed,, and fatigue.. many days I take a short nap in the afternoon just to make it through..

My best advice after being w&w,, is you will know when it is time for you to move forward... I would definitely send your MRI out to House clinic in LA  for free second opinion and phone consult,, no obligations,, and get several Dr opinions.. I found this very helpful in deciding in my case.. I found you can get differing opinions about size ,, treatment options,, and just about everything involved from each different Dr.. they most all have an "agenda" that they think you should follow.. it is ENTIRELY up to you what you do.. be at peace with your decision.. I think at first I did not have many symptoms and really just wanted to "deny" I had the thing so I just watched awhile,, but as I said , my symptoms have just gotten worse and tumor has grown on MRI scan and so it is time to move forward and I am at peace with that,, radiation was out of the question for me the Dr said as the tumor was too large and pressing on brain stem already. as he explained "usually" the tumor will enlarge after radiation before it shrinks and I could not risk any more pressing on the brain stem...
these are just my thoughts and feelings as one who has been w&w and now is surgery bound... it is VERY scary but as I told the Dr.. " It is not going to go away on it's own,, so I must do something to have better quality of life again"... GOOD LUCK in your decisions and just go with your gut and know you are doing what is best for YOU and not anyone else and you will find peace.... much best wishes in your journey... Jane

[lrobie]

I'm reading all the posts on this subject and have come up with another question.  If someone is in the watch and wait status for two years and then the MRI shows growth at the 2 year check-up, do most people then decide on treatment or do you continue to watch and wait?  I'm being told I need to make a decision now.  My symptoms include a little hearing loss, constant tinnitus (at times gets louder) and dizziness.

Lisa

[Rivergirl]

I was watch and wait for 3 years.  I had a lot of symptoms, the worse was the pain and pressure on the AN side.  This year it showed the tumor had been remodeling the bone to accommodate it's growth, thus the pain and pressure so had no choice but to do surgery.  The surgery was difficult, I lost the hearing on my right side, it has been 3 months and I am still recovering.  I wish I had it done a couple of years ago before the pain got too bad and before it grew more and before it remodeled the bone but sometimes you do what is in the moment and my moment was to wait.  I don't know what I was waiting for.  So some people can W&W and some can't. It was always in my thoughts daily and now my thoughts are waiting for full recovery.  It is a tough surgery, look at all  your options.  And make sure you are in the best physical condition before surgery, I was not and am still paying for that.  Good luck with your decision, it is hard no matter what you choose.  Welcome to our forum.

[alabamajane]

Lisa,
questions.. have you had your MRIs done at same place each time? Have you had more than one Dr. opinion? Have you sent info out to House clinic just for the sake of a "free" second opinion from reputable, experienced Drs.?

I found just having that info available to compare to local Dr.s was very helpful ,, even though I would consider going  out there,, personal issues dictate I am not really able to at this time,, but their consult was very rewarding and I was able to compare if my Dr suggested the same things.. if you get my drift here,,,,, PLUS if someone is telling you YOU MUST make a decision right NOW,, I would step back from them and get another opinion...

 In my experience and most Drs will tell you,, these are slow growing and most all of us have time to think.... some less than others due to size and location,, but yours ,, to me and I am not a Dr by any means,,,,yours seems small and symptoms do not seem intolerable from what you describe... you must be comfortable with your decision whatever it is,, to w&w or move forward and you will know when it is right... I did anyway,, I just could not tolerate the headaches and other symptoms any longer... but try to find other opinions if you can,, the more you input/info you can get from others, Drs included,, the better you will feel about your decision I believe,,
Hope I have not rambled on too much,, but I hate to hear someone rushed into this decision unless there is medical reasons or bad symptoms to warrant it......good luck..

[lrobie]

I don't think my doctors are rushing me into a decision.  I believe that maybe they feel that since it is showing growth, but is still small in size, it would be easier to seek the treatment now.  I have had three MRI's from UPMC and then one in Erie (my initial one). 

Of course, as most people would, I hope that my outcome is that I will return to normal regardless of what treatment I decide.  The scary part about me sending my information to House, is that with all the posts that I've read from people who have had their surgeries there, they lost all hearing, have facial paralysis or other issues that have continued. 

I've read the John Hopkins website on ANs and it appears to be a top hospital in treating them.  You can go with them for 2nd opinions, but I don't think it's in person. 

I definitely will be getting a second opinion, I just haven't decided where yet.

Lisa

[HeidiC]

I don't think my doctors are rushing me into a decision.  I believe that maybe they feel that since it is showing growth, but is still small in size, it would be easier to seek the treatment now.  I have had three MRI's from UPMC and then one in Erie (my initial one). 

Lisa

Personally, I think its better to get it out sooner rather than later.  I know they are slow growing and some don't grow, but most of them seem to eventually have to be treated.  I figured why wait and let it grow.  I didn't want to wait till I have significant hearing loss, and when it is bigger and more intertwined with the nerves and harder to get out and will likely cause more damage in getting it out.  I read a post the other day where the lady said to the effect of that she had 85% hearing recognition a year ago and now its 30% but she has time to make a decision...I wouldn't wait much longer!  The above is all, of course, just my opinion.  Everyone has to weigh all the information and come to their own decision.

A second opinion is a great idea.  Good luck in finding a great Dr!

~Heidi

[CHD63]

Hi Lisa .....

Just wanted to respond to your comment about patients going to House.  I am not a doctor but admittedly am an information junkie and have read and studied about acoustic neuromas and treatments since I was diagnosed nearly four years ago.

Of course, as most people would, I hope that my outcome is that I will return to normal regardless of what treatment I decide.  The scary part about me sending my information to House, is that with all the posts that I've read from people who have had their surgeries there, they lost all hearing, have facial paralysis or other issues that have continued.

I think it is everyone's wish to return to "normal" following treatment of an AN.  The truth of the matter is an acoustic neuroma grows on the acoustic nerve sheath (or more accurately, the vestibular portion of the acoustic nerve ...... hence, the term vestibular schwannoma) and therefore affects the hearing of a large proportion of those diagnosed.  Even with radiotherapy, hearing is rarely restored to pre-AN levels ..... the hope is to maintain the level at the time of treatment.  If the AN continues to grow, it will, in the vast majority of cases, adversely affect the hearing.

House Ear Clinic sees hundreds of AN patients each year ...... very often the most difficult or most advanced ones.  Therefore, the stats are skewed.  If I am not mistaken, they were the pioneers in the mid fossa approach, which was developed strictly for that reason ...... hearing preservation.  I do not know where you have read your information on patients being treated at House.  My information has been almost exactly the opposite, with extremely high rates for hearing preservation and saving the facial nerve.

Yes, I did lose all of my hearing in my AN ear following my surgery at House, but my first neurosurgeon (at Duke University), as well as the surgeons at House told me, in advance, that even if I chose to do radiotherapy or nothing, I would eventually lose all hearing in that ear.  Therefore, I had the Oticon Medical Ponto Pro abutment implanted at the same time as surgery and I am doing well with "hearing" from my AN side.

Regarding:

I've read the John Hopkins website on ANs and it appears to be a top hospital in treating them.  You can go with them for 2nd opinions, but I don't think it's in person.

I will say this ..... one of the higher ups in the Johns Hopkins Administration went to House for his AN surgery, because in his words "they are best in the world"  ..... had mid fossa approach, did extremely well, and preserved his hearing and no facial involvement.

There are other excellent medical facilities around the country and House is certainly among them.

Clarice

[lrobie]

Hi Clarice,

I've probably missed all the good outcomes from AN patients that were treated at House.  I don't think I've seen one where they had the Mid Fossa.  That's the type that my ENT and Neurosurgeon are recommending for me.  But when reading about it, there's a higher chance for facial paralysis.  I'm driving myself crazy with all this and trying to decide what to do.  I feel like I'm in a no win situation.

I would give House a try, but I've only flown a few times and don't really care for it.  So then I would be worried about two things, flying and surgery. 

Tinnitus decided to get louder.  It's becoming much harder trying to ignore it.  It makes me question if the tumor is growing even more because the tinnitus is louder.  Anyone know the answer?

Lisa

 

[Cheryl R]

Lisa, as long as the dr you are seeing for possible mid fossa does many mid fossas then you should be ok for a local dr.       Some of the facial paralysis can depend how bad the tumor has already damaged the facial nerve.         My Univ of Iowa does many mid fossa and I know several who have had none.   Me included on one side.     This is because I have had surgery on both sides due to NF2.       Many times the facial paralysis is temporary and goes away in time.    How long a time can vary from short to longer.               On my other side was 3 1/2 mo. before was gone.      Eventually another tumor wass a facial neuroma and a nerve graft was done at the same time and I have some movement and is ok at rest.              Many drs will leave some of the tumor on the facial nerve to keep the facial nerve ok.                It is hard to make the choice that you feel is right for you and I wish you well.                        Cheryl R

[New girl]

Hi Lisa,

The volume of my tinnius fluctuates.  I have had bouts when it gets very loud for weeks but it then returns to a lower volume.  I have found the volume is lower now that I no longer drink coffee.  The doctors I talked to were not concerned with this since the fluctuation is normal for me for ~ 1 year and I have not had an increase in any other symptoms.  Best wishes to you in finding a treatment plan with doctors you are comfortable with.  Most insurance plans will let you get 2nd and 3rd opinions if you feel you need more info.  This forum is great for info.

[nftwoed]

Hi;

  I just look at potential, logical outcomes when it comes to w&w. It is known a tumor does not need to grow to cause damage, so, one is basically taking a chance by treating, or not treating.
  Re; NF-2, of course the potential logical outcome is bilateral deafness w/o intervention, or, with intervention. Each case and each person is so individual and there are no absolutes or guarantees.
  Guess I'm not a fan of conservative management if good hearing still exists.

[HeidiC]

Hi;

  I just look at potential, logical outcomes when it comes to w&w. It is known a tumor does not need to grow to cause damage, so, one is basically taking a chance by treating, or not treating.
  Re; NF-2, of course the potential logical outcome is bilateral deafness w/o intervention, or, with intervention. Each case and each person is so individual and there are no absolutes or guarantees.
  Guess I'm not a fan of conservative management if good hearing still exists.

Thats pretty much how I came to my decision...That I have little hearing loss so far, vertigo, intermitant facial numbness, and headaches and that I'd like to get it out before it becomes more of a problem.  None of the symptoms have affected my life much as of yet, and I understand that there is risk with the surgery, but I feel that the symptoms and risk will only get greater as the tumor grows.

I am at peace with my decision, though that peace didn't come with the making of that decision like many people say, it did come over a couple weeks time following it.

~Heidi

[cdove]

Hello!
I am in year 11 of Watch and Wait with a small AN. There has been no measurable growth (bear in mind that small ANs are hard to measure accurately.) My reading has lead me to conclude that while it is true that surgical complications are more likely in an older person, it is also true that the surgical technologies improve rapidly. I am now doing MRI every 3-4 years, but initially it was every 6 months, then annually. I am happy with the decision I made. No plans for MRI until June, 2013. Then we'll take it from there. The main benefit I got by not rushing into surgery is that I got an ideal of how it would behave over time. It is working out nicely for me, as I hope it will for you.

With warm regards, and best of luck on our decision,
Chris