Newcomer with questions, and a less than pleasant experience with a doctor

[Ellid]

I was diagnosed with an AN last week after an MRI.  I saw my ENT, who told me the following:

1.  The treatment of choice for someone my age (I'm 46) is removal of the tumor.  He did not discuss any other options such as radiostatic surgery.

2.  When I asked how big the tumor was, he seemed surprised, then admitted that he didn't know and said that the MRI report only said it was "large."  First, that tells me nothing (how large is large?), and second, I find it hard to believe that he *didn't* know the answer.  Surely they can tell the size on the MRI!

3.  He had no information on AN support groups, told me I should do more research and consult a specialist, and referred me to an otolaryngologist. 

4.  When I told him that I'd seen some very grim statistics on hearing loss on the affected side, and wished to avoid that, he was noncommittal and said I'd have to discuss that with the specialist and his treatment team.  I still have 72% hearing in the bad ear and would like to make every effort to preserve it.

I do have an appointment with the doctor he recommended (in January - I'm going to see if I can get one sooner at a satellite office), and am doing as much research as I can...so far I haven't found much in the way of straight answers, and the more I search, the more frustrated I get.

My symptoms:  hearing loss of 28% on the right side, some tinnitus.  I have no facial problems, no balance problems, and wouldn't even know about this unless I'd had a quicky hearing test at my PCP's last month.  I'm still reeling from the diagnosis and am quite honestly terrified of what might happen. 

I live in Western Massachusetts, if that makes any difference, and would welcome any advice people have.  Thanks in advance.

[Mark]

Ellid,

In reading your post, I must confess my initial reaction is that you need to find a new ENT, preferably one with a medical degree from a real medical school.  At a minimum he provides some very ineffective information on AN's.

In terms of #1 , an age of 46 is absolutely not an issue for having radiosurgery as an option. I was 44 when I was treated. Size on the other hand is a factor as AN's 3 cm or larger typically are not eligible for radiosurgery. MRI's display size within an accuracy of       +/- 2 mm. The MRI report from a competent radiologist will always describe the size of the mass observed. A "Large" AN would generally be considered 3 cm or larger. You need to know the size to better understand your options.

The one thing the majority of folks who post here will tell you is that AN treatment is something where you need to seek out world class practioners of both types of treatment. The House Clinic in LA is an excellent place on the surgery side for example and you can find any number of highly experienced docs that people have had great experiences with on this forum. I would encourage you to seek out these specialists and not necessarily go where your ENT sent you , especially since he does not have a very impressive grasp of an AN to begin with. Phyl who posts frequently is from the Boston area would be a great person to ask and she checked out several top notch AN docs in your area

Best of luck

Mark

[JJ]

Find yourself another doctor.   Ask your primary care physician (if you have one) for a good neurosurgery referral.   The other poster is correct in that tumors larger that 2cm are generally considered harder to treat with radiosurgery, you should get that information from a  board-certified neurosurgeon who has extensive experience treating AN's, in conjunction with a good ENT, as you still have some hearing worth trying to salvage.  Ask your doctor for the radiologist's report, which will have the dimensions of the AN listed.  Good luck!

[mylump]

I agree with all of the above. Find a specialisty in each option, radiosurgery and microsurgery. Each will give the best advice for their speciality, and possibly also try to convince you the other options are not worth considering; keep that in mind. Also, go to somebody that has the most experience of ANs in your area, even if it means travelling further. It is absolutely worth the effort.  I would look at all options and discuss them with people that know what they are talking about. Find out what size it is, then you know what you need to do, and how much time you have to consider your options before you have to do something about it.

My AN was 2.6cm and was treated with CK, and I was 44 when I was treated. I think that 'fact' has to do with the notion that radiosurgery might cause malignancy further on in life.  In light of that, some docs perfer to use surgery on young people. Hemm... Statistically people that developed malignancies after radiosurgery were around the same in % as people developing malignant tumours anywhere on their bodies due to any other reason, so not worth taking into account in making a choice. I'm sure other people have other views on this, it's just my reasoning.

I think 3cm is considered the limit in size these days, but that can change depending on the location of the AN. Sometimes for AN larger than 3cms, they debulk them first (microsurgery) then they treat them with radiosurgery. Radiosurgery on it's own may not be available to you if it is too large. BUt, if it is within the size limit for radiosurgery, it should give you the best options for saving the hearing you have left.

Keep yur mind open, find good doctors and talk to specialists, and keep yourself informed. Hope the above helps.

All the best, Lorenzo

[Joef]

While ENT my find the AN ... they dont remove them! get a good N.Surgen in Boston ... Boston Ear I think? ..

Phyl?? Crazycat! Kbonner?? what are the names he should call ??

There are a few of us the the Mass area! ... I'm in CT ..

I find it hard to belive the size was not on the MRI report .. If it is large,  >= 3cm .. you will lose your hearing  .. but really its not that bad .. there are options ... also .. you  can get the MRI yourself .. get a couple copies... if you had contrast done, you will see for yourself .. you dont need some ENT to tell you the size .. (my looked like a baseball in my head, Crazycat's looked like a grapefruit !!). you can send the copies to Boston or House...

keep in touch .. we all (from the Mass,CT area) meet for lunch a couple times a year

[Ellid]

Ellid,

In reading your post, I must confess my initial reaction is that you need to find a new ENT, preferably one with a medical degree from a real medical school.  At a minimum he provides some very ineffective information on AN's.

In terms of #1 , an age of 46 is absolutely not an issue for having radiosurgery as an option. I was 44 when I was treated. Size on the other hand is a factor as AN's 3 cm or larger typically are not eligible for radiosurgery. MRI's display size within an accuracy of       +/- 2 mm. The MRI report from a competent radiologist will always describe the size of the mass observed. A "Large" AN would generally be considered 3 cm or larger. You need to know the size to better understand your options.

The one thing the majority of folks who post here will tell you is that AN treatment is something where you need to seek out world class practioners of both types of treatment. The House Clinic in LA is an excellent place on the surgery side for example and you can find any number of highly experienced docs that people have had great experiences with on this forum. I would encourage you to seek out these specialists and not necessarily go where your ENT sent you , especially since he does not have a very impressive grasp of an AN to begin with. Phyl who posts frequently is from the Boston area would be a great person to ask and she checked out several top notch AN docs in your area

Best of luck

Mark

I didn't see why my age should be a factor - if anything, you'd think they'd want younger people to have less invasive surgery because of quality of life issues.  I also cannot believe that the size of the AN wasn't on the radiology report.  I'm going to request a copy today and make arrangements to pick it up this weekend.

Unfortunately, the House Clinic is out of the question due to expense; I don't have much money, and flying out to LA is financially impossible.  Do you know of a similar clinic on the East Coast?  I may actually have to fight to go anywhere but New England or possibly New York.  I'll definitely get in touch with Phyl - what's her full  handle?  More than anything else I need to talk to someone who's been through this.

Thanks for confirming my suspicions.  I really appreciate this.  I'm still reeling from the diagnosis and I can't believe I was given such inadequate advice.

Ellid

[Kilroy1976]

Ellid, you are by no means the only person on this board to have gotten bad initial advice, so don't feel alone. My primary doctor, who found my AN, told me that I'd need surgery, I think because he didn't know about radiosurgical options. Likewise, my ENT knew about radiosurgery, but his nurse, who did all of my hearing and balance tests, did not. In many cases, yours will be the first AN that the doctor has ever encountered, so they're not well-versed on treatment options. Medicine is one of those fields where nobody knows everything, and that's why you'll need a specialist.

Trust me, you'll get it all sorted out. It's hard, but with patience you'll get the answers you need. Best of luck!

[krbonner]

There are several of us here who have been treated in Boston (I live 30 mins NW of Boston).  There is a wonderful neuro-ENT at Mass Eye and Ear Infirmary who has tons of experience with ANs.  He's currently following several hundred just in the watch-and-wait mode.  When my local ENT found my AN via MRI, she immediately handed me off to MEEI and it was the best decision we could have made.  For a variety of reasons, I ended up with translab surgery.  That was done at Mass General (affiliated with MEEI), and I have nothing but good things to say about my experience - given that I had to have an AN in the first place!

I'll send you a private message with the contact info for the docs I used in Boston.  I'd highly recommend talking to them.

Katie

[tony]

I understand your frustraitions - but consider this
many of the medical folk have seen so few of these
they are not really in a position to advise
In regards costs etc - I take your point but...
Consider this ...in one future your work options (and earnings) are quite limited
In another - there are much fewer limitations.....
I know its a hard call etc...
All I am saying is take your time - and go with those who know
and those you feel comfortable with
Maybe see two or three specialists
then see how you feel ?
Just a thought
Best regards
Tony

[GOIN2LA]

Please look into all your options.  I chose to have mine removed endoscopically.  This web site is amazing!!  www.skullbaseinstitute.com

Take Care and God Bless

[ppearl214]

Hi Ellid,

glad to help in any way I can (as with others here as well... and Mark, thank you! )

As kbonner *blows kiss to katie* and JoeF *ok, blows him a kiss too! * can share, we are forutnate to live in an area that offers so much without having to travel.

As Katie (as well as many others here, such as Crazykat and jcinma, etc) can note...

1.  MGH has a fabulous microsurgical team in McKenna and Barker. They have been doing numeorus AN surgeries with wonderful success.
2.  Ellenvig can share her experiences with Dr. Noren in Providence with Gammaknife radiosurgery. Tufts also offers Gammaknife
3.  I can share about Cyberknife radio-surgery at Beth Israel in Boston
4.  MGH also offers Proton radio-surgery
5.  Brigham/Woman's offers Novalis FSR radiosurgery and also has a fabulous brain tumor team, headed by Dr. Peter Black

We are fortunate to have so much here. Many, such as JoeF, our Capt'n Deb and many more, have traveled across the country to House Ear Clinic and as Mark notes, they are also a premier location for AN surgery. Skull Base Institute also does endoscopic AN removal.

My belief (whether right or wrong) is that doctors truly are realizing the treatment options available to many AN patients. As Mark notes, it also depends on the size of the growth.  MRI's are +/-2mm, and those 2 mm can make a difference.

Please see if your radiologist will re-read your reports, with specific notation of the growth's size. Then, you will be able to know what research needs to be done.

...and we will help you with that research, without you feeling overwhelmed. I have to admit that most here are very open minded about treating physicians, treatment options without saying "well, this one is better than that one". We can share experiences, outcomes, etc with you.  Read this forum and take your time in reading them. You will learn lots. Many of us are more than happy to talk on the phone as well.

Regardless, know that we will share with you what we can.... and know that you are not alone.  Please remember the most important thing (to me) about this AN journey... first, it is benign.  What a wonderful word. Benign... it just happens to be in a lousy spot but it's benign...... second... it is treatable.  I love that word too!

So, you have a benign, treatable growth... and we're here to help you during this process as best as we can.

Hang in there.
Phyl

[Battyp]

I haven't read everyone's posts but judging from the names I've seen I know you've been given some good advice from all!  Most ent's (gp's too!) only see about 50 or so AN's in their entire career.  If they haven't seen one in a while then they probably are not up to speed on treatment options.  Get a copy of your MRI, Get a copy of your report and send them to house for an eval or to a facility of your choice.  Most places will give you a phone consult if you send them your mri and report.  Most mri's are now on cd so make yourself a spare copy to keep on hand.
 All my best to you!
Michelle

[Obita]

Hi Ellid:

Sorry you need to be here but I'm very glad you came on.  The support here is amazing.  Just knowing you are not the only one with an AN is huge.  After the shock of diagnosis wears off, you will be able to relax a little and pump yourself up to get it taken care of.  Once treatment is decided on, you will feel so much better.

I do hope you get some of your questions answered re: size very soon.  Of course, we all want to know its size when you find out.  If you type a few lines of the radiology report on here, you will get many posts as we are all pretty versed in MRI lingo.

Good luck and hope to hear from you soon, Kathy

[Sam]

Most ENT's don't see the actual MRI scan, all they get from the radiologist is a written report stating an approx. size of the tumor, then the ENT will tell you what your options are from that. I do not feel ENT's really want to get too deeply involved with a AN case.
When I was diagnosed by my ENT, he told me to go by the place I had gotten my MRI done, pick-up my films, and he then refered me to a ENT Oncologist. I did get my films, and also a Compact disc with the MRI on it. I put the CD into my computer to view the MRI, and the type of system used by the MRI place had a built-in measuring tool for the software. When diagnosed by my ENT he said I had a 7mmX9mm tumor, but when I used the measuring tool on the MRI CD, I measured a 4mmX7mm tumor.
when I seen the ENT Oncologist he viewed my MRI films, and agreed that I did have a 4mmX7mm tumor. then of course explained my options. Most Doctors will use scare tactics to get you to go for open surgery. My suggestion to you would be to get a second opinion, and find a doctor who is unbias toward radiosurgery.

[Sue]

Hi Elllid,

Just wanted to throw in my 2 cents worth.  You are getting great advice and I hope it helps you.  I asked my ENT how many AN's does he diagnose, and he said about two a year. So, God Bless ENT's, but they aren't always looking for Acousitic Neuromas. So, talking with the best AN specialist you can get to is imperative.  I am 60 and I had Gamma Knife last April. Mine is 2 CM.  It's rather irritating to me how the surgical community can sometime ignore the other option open to AN patients.  I was very lucky that my team discussed radiosurgery first. Good luck with your treatment and recovery and please know that you aren't alone in the world. There is a strong community here that is very helpful, friendly, and will try to answer your questions and listen to you vent when you are frustrated, tired, angry, mad, resentful, and perplexed as to why this thing had to grow in your head.  Believe me, we've all had to come to terms with something thrown at us out of the blue.  It could be worse, but this might be the worst thing that has happened to you so far, and it's perfectly all right to be really, really ticked off about the whole thing!     

Take care,

Sue in Vancouver, USA  (despite the Wind Storm of '06)