ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Ellid on December 11, 2006, 09:53:35 pm

Title: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Ellid on December 11, 2006, 09:53:35 pm
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.
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Mark on December 11, 2006, 10:36:23 pm
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: JJ on December 12, 2006, 02:09:24 am
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!
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: mylump on December 12, 2006, 03:40:21 am
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Joef on December 12, 2006, 05:16:08 am
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Ellid on December 12, 2006, 06:12:45 am
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Kilroy1976 on December 12, 2006, 06:25:36 am
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!
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: krbonner on December 12, 2006, 08:39:30 am
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: tony on December 12, 2006, 12:30:39 pm
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: GOIN2LA on December 12, 2006, 01:17:05 pm
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: ppearl214 on December 12, 2006, 08:43:40 pm
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Battyp on December 13, 2006, 09:25:11 am
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
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Obita on December 16, 2006, 07:06:45 am
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

Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Sam on December 16, 2006, 03:08:09 pm
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.
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Sue on December 17, 2006, 12:49:41 pm
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)
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Jim Scott on December 18, 2006, 05:27:31 pm
Hi, Ellid:

I can't add a lot to the good advice already posted here except ot tell you that, regarding the age issue, I'm 63 and in excellent health. My neurosurgeon didn't hesitate to recommend microsurgery (ASAP) for my 4.5 cm AN tumor as radiation, alone, was not a viable option.  Incidentally, at our first meeting, he put my MRI films up on a viewer in his office and hand-measured the AN as I watched him.  No mystery there.  He spent about 25 minutes with my wife and me, explaining my options.  He recommended retrosigmoid and I saw no good reason not to agree, so that is what he did.

I never saw an ENT physician.  My Primary Care Physician was trying to find the source of my imbalance and loss of appetite complaints and ordered an MRI with contrast for me, expecting to find a sinus condition.  Instead, he found a large Acoustic Neuroma tumor and called me at once, recommending a neurosurgeon.  That surgeon was not a good match for me (inexperienced with AN's) and I was recommened by my wife's doctor to another, highly respected and very experienced (35 years) neurosurgeon in New Haven (Dr. Issac Goodrich - a great guy).   He had done thousands of AN-removal operations and, unlike the first neurosurgeon - who seemed to be intimdated by my large AN - Dr. Goodrich was almost eager to remove mine.  He used microsurgery and radiation, combined, which turned out well. 

In any case, do the research and if you have a tumor under 3 cm, know that radiation is a very effective approach to this situation.  Meanwhile, hold on to the fact that it's a benign[/u] tumor, it's operable[/u] and that many have gone through the removal/radiation process successfully.   It is serious but it can be handled.  Do not panic or despair.

I wish you all the best.   :)


Jim[/color]
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Michael R. on December 26, 2006, 05:39:09 pm
Hi Ellid,



I am new to this site as well, so I can't add anything to the previous postings. But I'm 49 and was diagnosed in June and had second MRI last week showing a fair amount of growth. I live on the seacoast in NH and was referred to a specialist @ Childrens Hospital, he also admits MGH, MA Eye & Ear. I have had only one appointment, but my research has found some excellent feedback on the Dr. Poe.  Hang in there and take this one step at a time.

Michael
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: jcinma on December 26, 2006, 08:49:29 pm
Michael & Ellid,
I highly recommend Dr. Poe. He and Dr. Barker were my surgeons at Mass General. Like Katie (krbonner) I have nothing but good things to say about the Drs. as well as Mass General.
Wishing you both the very best possible outcomes-
Jane
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: ppearl214 on December 28, 2006, 06:57:40 am
Jane,

Having met you in person, seeing how well you are doing after all you have endured (and yes, kbonner, yoga, and our fave crazykat), MGH is definately on their game when it comes to AN micro-surgical outcomes.

Sending you hugs, hope you are welll and can't wait to see you at the next brunch.  Happy, HEALTHY new year to you!

Phyl

Michael & Ellid,
I highly recommend Dr. Poe. He and Dr. Barker were my surgeons at Mass General. Like Katie (krbonner) I have nothing but good things to say about the Drs. as well as Mass General.
Wishing you both the very best possible outcomes-
Jane

Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: krbonner on December 28, 2006, 12:24:57 pm
Thanks, Jane!  It's good to know the name of another experienced AN surgeon in the Boston area.

Katie
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Joef on December 28, 2006, 12:33:41 pm

I've been thinking of doing my follow up annual MRI's at Boston , (I dont want to fly out to LA every year!)
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: jcinma on December 28, 2006, 10:07:09 pm
Phyl and Joef-
A belated congrats on becoming moderators for this wonderful forum.
A Happy and most of all a Healthy New Year to everyone on this forum (please!)
Jane
P.S. to Phyl I will be thinking of you with each sip of the Belvedere (with a mist of vermouth lol)
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Ellid on December 29, 2006, 07:43:49 pm

I've been thinking of doing my follow up annual MRI's at Boston , (I dont want to fly out to LA every year!)

I don't blame you!  That's why I'm heading to Mass Eye & Ear rather than going to LA...I live in Easthampton, only two hours away on the Pike.
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: ppearl214 on December 29, 2006, 08:30:22 pm
Thanks Jane!  :-*... and don't forget the extra olives... will be raising my martini glass as well!

Baasten rawks... you gotta admit it! :)

Phyl

Phyl and Joef-
A belated congrats on becoming moderators for this wonderful forum.
A Happy and most of all a Healthy New Year to everyone on this forum (please!)
Jane
P.S. to Phyl I will be thinking of you with each sip of the Belvedere (with a mist of vermouth lol)
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: ppearl214 on December 29, 2006, 08:51:59 pm
Congrats Elld!  And hope to see you at our next brunch... usually off the Pike around Worcester/Auburn (Maxwell's)

Phyl

I don't blame you!  That's why I'm heading to Mass Eye & Ear rather than going to LA...I live in Easthampton, only two hours away on the Pike.
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Kilroy1976 on December 29, 2006, 10:11:55 pm
Someone can correct me if I'm wrong, but you should be able to get your MRIs from any nearby medical imaging facility that has an MRI machine and some contrast dye. They'll give you a CD of the MRI that you can send to your surgeon.

Speaking of bad doctors, mine has had my follow-up MRI films for three weeks now. I've made several calls, and far as I know he hasn't even taken them out of the case yet. I'm very "curious" to know what "appears slightly larger" and "deforming the pons" means to him.  >:(
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: marystro on December 29, 2006, 10:52:37 pm
Hi Ellid,

That was exactly what my ENT told me the next business day after MRI.  He said I have a "growth" and that I need to see a specialist ASAP.  This is not his specialty area but referral may take a while given there are only a few specialists in our area.  And then there is insurance challenges.  He gave me the House brochure and referred me to a neurosurgeon who was very objective and recommended CK.  Meanwhile I did my own research on line and found this forum.  Made up my mind on CK with Stanford before I even saw the referral.  By then the neurosurgeon's recommendation was a re-affirmation of my decision.  So, you see, you need to take matters in your own hand when it comes to health care.

We are fortunate to have found this forum.  It's such a godsend to help us through.  Hope your AN journey is as positive as mine.  Best wishes and don't get too stressed out --- having AN is not the end of the world.  It will all work out.

Mary
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: krbonner on December 30, 2006, 08:01:49 am
Someone can correct me if I'm wrong, but you should be able to get your MRIs from any nearby medical imaging facility that has an MRI machine and some contrast dye. They'll give you a CD of the MRI that you can send to your surgeon.

This is true, though I have run into problems this way.  My first two MRIs were done locally and grossly misread (in terms of the size/growth of my AN) by the local radiologist.  This caused a panic, and I had to make a a trip into Boston anyway to see all the doctors to be reassured that the original reading was wrong.  It just seems easier on my to make the trip to Boston and have my neuro-ENT do a wet read then and there, for consistency if nothing else.

Just another perspective.

Katie
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: mellowrama on January 03, 2007, 06:11:03 pm
I saw 8 doctors ( including my primary who discoverd the an) before making my final decision.  If your situation is not urgent, I encourage you to see various and multiple surgeons and radiologists doctors to base your decisions.  I decided to see specialists in Phoenix at Barrows after sending them my cd/mri, which I had to travel to 3 times by the time it was over.   It was worth the expense...southwest flights are cheap.

I had one really less than plesant experience with a top nuerosurgeon of the world.  He told me things that I don't believe were true for my situation in a very callous way...and I'm sooooo glad I did not take his advice!

best regards, melinda


Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: Denise on January 04, 2007, 01:58:12 pm
Ellid,
First I must admit, i did not read this entire thread, your doctor's lack of compassion and knowledge really makes me angry, and i quit reading.  What huge jerk!  My primary care physician was able to tell me the size of my tumor when it was discovered. Why your doctor couldn't figure it out is beyond me!

I am sorry you had to encounter such a bad doctor. It's bad enough finding out you have a tumor, to also find out your doctor is a nut!

I most certainly recommend you find another doctor, and I would think twice maybe three times about seeing his referral. Check him out throughly online.

I am sure others on this site have given you GREAT advice, and I wish you the best.  I need to go calm down, before I get myself into  trouble.

Denise
Title: Re: Newcomer with questions, and a less than pleasant experience with a doctor
Post by: pearchica on January 05, 2007, 07:38:55 pm
I too am at the beginning stages of diagnosis- I am 44 with a 2X2X2 CM.  I was lucky in that my ENT had a neurotoligist in his practice who does nothing but tumor removal.  Having said that the surgeon (neurotoligist) recommended both surgery to debulk my tumor and then gamma knife to kill the rest of the bugger off- as he did not want to impact my facial nerves.  I would do a TON of research. I am getting two separate opinions at a minimum and then I will figure out if I need more research or not ( I just got on this website today).  The more I read the more options become available or at least I want to be able to ask a surgeon and be told why it's not applicable in my case.  Good luck and keep us updated on your progress!