Just Diagnosed and Advised to Wait

[brucifer]

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[Mark]

Bruce,

I think it is certainly possible that AN's can reach a certain size and just stop there. While they tend to average about 2 mm / year based on studies, they do not grow necessarily on a consistent rate, so there can be a year or two of no growth followed by a period of more aggressive growth. Personally, I tend to think it uncommon that they stop totally once they get going. That being said, I would certainly agree with the wait and watch approach until new scans or a change insymptoms suggest it's time for treatment

Mark

[Battyp]

Bruce since you mentioned diabetes I'm just curious which side your AN is on?  Mine was on the left and I was labelled as diabetic before the removal and since my surgery I am no longer condsidered diabetic..there are medical studies on that somewhere.

Welcome to the "club".  wait and watch makes me nervous but if you already have the hearing loss and no balance problems I'd wait too.  May you NEVER EVER EVER have to have treatment for your AN!

[Sue]

Okay, I'm going to post my 2 cents worth, even tho my only experience is my own. My An 2 cm, a little bigger than yours.  Last year when I was seeking treatment for my symptoms, (fullness in the ear, tinnitus, hearing loss) I never had an MRI that would have shown the cause of the troubles.  It was probably my fault for not going back in the fall for my follow-up appointment, because I thought that there was nothing to be done at this point, since a cat scan was taken and my ENT said I had "no tumors".  So what do I know?  Anyway, sometime in the winter I started to notice that I had facial numbness and when I told my regular doctor about it, I ended up at the neurologists office and then had the MRI in March.  Okay, so my question/comment is:  If you have treatment for this now (I had Gamma Knife), wouldn't it be better than to wait until you got another symptom that might not go away? I guess I don't understand the wait and watch approach - unless it has something to do with insurance not wanting to do this until there are more symptoms.  I'm not picking on you and your doctor specifically, really I'm not. I'm just curious what the advantage is to wait.  I just keep wondering if my AN had been discovered last summer and I'd had treatment then, maybe I wouldn't have the facial numbness and such going on now.  I guess another question for me is "do AN's just quit growing."?  That would be awesome for you...I guess that never occured to me that that was a possibility. I hope you understand what I'm trying to say here.  I accidently put into place a "wait and see" when I didn't go back to my doctor, and then I ended up with worse symptoms, so I'm just curious why "wait and see" is an option for anybody.  That's kind of my question, I guess.

[Kilroy1976]

It sure is amazing how responses differ from doctor to doctor. I bet if you asked three different doctors what to do with a 1.5 cm x 1.6 cm x 0.9 cm AN, you'd get one for watch and wait, one for radiation and one for surgery. Mine's about that size, and one doctor said "surgery" and one said "radiation," but they both said that I should do something. And your doctor advises you not to... what's a patient to do? Best of luck!

[Labott]

Welcome Bruce:
 Ã‚ 
ANs are just like real estate - location counts more than the size of the property!  Did you get any indication from the neurosurgeon on the expected growth direction and probable impact of this growth (next symptom, surgical complexity, etc.)?  In my own case, location excluded all but the translab approach for surgical intervention even though mine at 1.0 by 0.7 by 0.5 cm is small.  Two different surgeons confirmed the translab only scenario.  Both also laid out what would/should happen next w/r to symptoms.    I opted for radiosurgery in part because the younger the patient, the shorter the recovery time.  I have a relatively clean medical record; who knows what the future holds with regards to the "normal" ailments of geezerdom.  I encourage you to consult with a GK/CK wizard before reaching the final decision w/r to watch and wait.  Good luck and keep us posted!

 Ã‚ -LABott

[HeadCase2]

Bruce,
  Welcome to the forum.  I agree with LABott that location is important.  Location, be it intracanicular or extracanicular, etc., can help explain the wide plethora of symptoms from an AN.
  In some of the studies I found, AN growth rates (in AN diagnosed patients) varied from about 0.6 to 2.0mm per year. Reports on this site indicate that growth rates can change quite a bit within a few months. Some patients in "watch and wait" have reported sudden growth rate spurts recorded in periodic MRIs.   Diagnosed ANs are relatively rare, 1 in 100,000, but AN rates reported for cadaver studies are several times that.  So the majority of people with an AN are not currently being diagnosed.  This propably means that most of these people lived out their lives without knowing they had an AN becuse they had no or relatively minor symptoms.
  Reports on this site also indicate that once an AN symptom shows up, it usually shows up suddenly, and rarely goes away once symptomatic.  Best of luck with your approach. 
Regards,
 Rob

[Battyp]

Are you type 1 or 2?  I was type 2 for 5 or so years before the found the pesky tumor and post treatment testing indicates it's all gone....so maybe you'll be lucky too!

[Sue]

Thanks for the detailed response!  I'm learning something new every day. The trick is to remember it!!  I also have Type II Diabetes.  I was diagnosed in November of 2003, and it was Dec of 2004 that I went in to have me ear cleaned out because I thought maybe that was the cause of the Tinnitus that had started not long before that.  Interesting that these two things were rearing their ugly heads at about the same time.

Sue

[targa72e]

I think that the reason one would wait and watch has to do with relative risk. There is a risk to doing nothing and there is a risk to doing something. If you have a small tumor and you know that doing something has the risk of 40% chance of hearing loss and a couple percent chance of facial nerve damage (or higher) plus all the other risks, waiting might be a good option. In my own case I have been waiting for two reasons: 1st I want to make sure that it is growing, I could be one of the lucky ones who’s tumor never grows or shrinks. 2nd I wanted time to figure out what I think the best treatment is for me.
 I have waited a year so far, in that time my hearing has gotten better. I started out with 80db loss and 60% srt. From a surgical standpoint most surgeons would have recommended translab as I fell below the “usable hearingâ€? guidelines of 50/50. At 6 months I was up to 50db loss and 68% srt latest hearing test was 50db loss 88% srt. If I had perused surgery I might have been talked into translab and be deaf in my right ear instead of being a good candidate for a approach that tries to save hearing.
   It looks like I am not going to be one of the luck ones who’s tumor doesn’t grow but I think I have a much better ability to decide on what treatment would serve me best, I am glad I waited this long. I now know that preserving my hearing is one of my first priorities. We will see what the future holds.

john

[Sue]

See, more interesting things to learn!!  I guess I never heard that AN's can just get to a certain point and not grow. I assumed they just kept on getting bigger!  Okay, thanks for the information. 

[Road Trip Dale]

Hey Bruce...welcome.

I had a 1.75cm removed by translab.  I had hearing loss and very few other symptoms.  A test the Otologist did showed that my left side (the good side) had taken over almost 60% of my balance functions, so that was why I hadn't noticed any significant balance changes.  I was basically given two choices "wait and see" with the MRI every 6 months, or have the translab (they didn't believe that my hearing was salvagable and I had adjusted to the hearing loss anyway).  The doctor told me that if I waited until the tumor reached 2cm that there was a dramatic increase in the possibility of complications from any of the procedures.  I asked him if it was one of his family members and he had to make the decision what would he do, he hesitated in responding (I don't think he wanted to make the decision for me), but then indicated that he'd have the procedure (my age played into it also, I'm 63).  Everything I've read shows the 2cm being the magic number.  Above that its consider a large tumor and your medical options start to dwindle after that.  Just MHO on this issue, please don't think I'm trying to push you one way or the other.  I chose the Translab surgical approach and couldn't be more happy with the outcome.  I've said it many times on this forum I'm blessed because I haven't had any of the severe side effects that many of our friends here have/are enduring daily.  My life has not changed one bit and now I don't have to worry about that "dang" thing growing in my head any longer.

Good luck with your decision, I and I pray your doctor's are correct and your friend stops growing.  BUT keep in mind that 2cm magic number.  If it looks like its going to get there I'd consider other options.

Dale

[targa72e]

some info,

john

Bozorg Grayeli A, Kalamarides M, Ferrary E, Bouccara D, El Gharem H, Rey A, Sterkers O.

Department of Otolaryngology--Head and Neck Surgery, Hopital Beaujon, Clichy, France. alexis.bozorg-grayeli@bjn.ap-hop-paris.fr

A high rate of deterioration in hearing function and the loss of patient compliance during conservative management should be taken into account when considering hearing preservation strategies for patients with vestibular schwannoma (VS).To compare conservative management with surgery for solitary small VS.Among 693 patients followed up for VS between 1991 and 2002, 114 (16%) intracanalicular VSs (stage 1) and 302 (44%) VSs measuring <15 mm in the cerebellopontine angle (stage 2) were included in this study. Initially, surgery was performed in 305 (73%) cases (50 stage 1, 255 stage 2) and 111 (27%) were managed conservatively (64 stage 1, 54 stage 2) by means of annual MRI scans and audiometry. Conservative management was chosen in patients aged >60 years and in those who refused surgery. In this subgroup, the mean follow-up period was 33 months (range 6-111 months).In the conservative management group, 47% of VSs showed significant growth, 47% were stable and 6% showed regression. Seventeen patients (15%) were operated on secondarily for tumour growth and 1 (1%) was irradiated for tumour growth and because surgery was contraindicated. Deterioration of hearing function by > or =1 class was observed in 56% of cases, 34% of patients were initially in hearing class D and only 10% showed stable hearing function. Of the conservative management group, 17% were lost during follow-up. After surgery, grade 1 or 2 facial function was obtained in 86% of cases. Following hearing preservation attempts (n=137), 54% of patients were in hearing classes A-C.

[Battyp]

Bruce,
 I'm heading back to my surgeon next month where I'll ask him again the name of the doctor that did the study.  All I know is before surgery I was type 2 diabetic on actos 30 mg a day and after I got all the decadron out of my system and stablized I am no longer labelled as diabetic and no more meds.  My a1c is well within normal ranges for a non diabetic and I passed the glucose tolerance test for non diabetic.  About the only positive thing to come out of this an thing health wise..not including the great many friends I found on here!

[Sheryl]

Brucifer - I, too, am a "wait and watcher" since discovery, incidentally, of my tumor in November of 2001.  Mine is a little different as it is on the 9th cranial nerve rather than the 8th (acoustic) and would affect my gag reflex and swallowing if symptoms were to develop.  The first MRI read it as 9 mm and I was told that it was probably under-read (translation - maybe a little larger).  Follow-up MRI's have shown the growth in 4-1/2 years to be 3 to 4 mm so the tumor is now 1.2 to 1.3 cm.  Over the years I have used different machines and technicians and was told that there could be "technical" differences in the measurements - maybe even my head could have been just 1 mm off in one of the machines.  My neurologist, neurosurgeon, and the neuroradiologist all say that I should "wait and watch" but I have been through a few medical nightmares in the years since discovering the tumor - breast cancer survivor (radiation and chemo ) and a husband with another type of benign brain tumor called a meningioma.  He needed surgery as his doubled in size in six months.  I have decided that when the time comes, I will go the CK route.  You do have to keep a close eye on the tumor - mine isn't pushing on the brainstem or causing any problems at this point.  I do know that once you have radiation, they tend to swell so I would want to leave some room for that and not wait until symptoms are bad. 

Best of luck to you - you'll get quite a bit of information from the people who post here and lots of concern.
Sheryl