Author Topic: Newbie with questions  (Read 4605 times)

kathysjourney

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Newbie with questions
« on: December 28, 2009, 04:16:44 pm »
Hello to All - This is my first experience on a message board! I found you all before Christmas this year, and have been browsing through this site. You are ALL my heroes, and I wish you all the best!! Thank you to all who share their experiences. It's truly a lifeline. To other newcomers, we all understand you! My story is like many. I was diagnosed just 3 days before Christmas '08 with a "small" AN of approx 1 cm on the Left side, and then I had to wait until mid January of '09 to see a specialist. Although it was sobering to learn, I remained pretty calm. I got through Christmas that year with only my husband knowing. I didn't have enough information to tell anyone else!

The diagnosis did answer so many questions about symptoms I have had for many years. I have had tinnitus, some balance issues, and 2 bouts with vertigo during the past 15 years. During those years I was told I needed to exercise, rest, vacation, take antidepressants, had fibromyalgia, was slightly anemic, had arthritis in my neck, scarring from childhood ear infections, should see a shrink - you name it. I used to tell ANY Dr I went to that I was a little "dizzy", had ringing in my ears, and was ALWAYS tired. Once many years ago I was sent for a basic hearing test that showed a slight loss of hearing, and that was the ENT who told me it was from childhood ear infections! He never advised further testing unless I noticed more hearing loss. I didn't really notice any change. I was busy working and raising 2 daughters, and I am also one to "keep going" as much as possible. I didn't feel sick, just "weird" sometimes.

In Oct '08 I had a balance episode that was different than before. I was bumping into walls. I was functioning, but I knew something was up. There were a couple of days when I wouldn't drive. My family physician told me to see a neurologist. She admitted later she was stumped and didn't really know if it was anything but my imagination. However, I thanked her greatly (and still do) for finally sending me to someone who thought it was worth figuring out! The neurologist told me to seek EXPERT opinions, but provided me with only 1 name. I, in fact, never saw that person. My ENT gave me a couple of local names. I live in northern NJ. I would prefer not to travel to NYC for treatment. There are a few good people in this area; but I haven't been able to make a decision.

So, before seeing any specialist I began my information search online and contacted my local association (WONDERFUL!). I was extremely educated by the time I was told by 2 specialists to "Watch and Wait", and I did that for the 2009 year. My balance had improved; though never perfect. I continued my online research and I was brave all year, gathering information and thinking that perhaps I would be lucky and never have to seek treatment. My third MRI this fall told me differently, and it has unexpected rocked my world! I had a 40% growth (to approx 1.4cm) in the second half of 2009, but only a very slight loss of hearing. My tinnitus has become worse, but I'm so used to it that it's like "white noise". I have been told by 3 specialists that I am a candidate for EITHER radiation or surgery, and I must decide for myself! HOW does one DO that? I have seen a cyberknife specialist, a neurosurgeon, 2 neurotologists, (I purposely chose the neurosurgeon and neurologists because they deal with both surgery and radiation), and even sent my MRI to Pittsburgh. Of course I knew beforehand that each specialist prefers to do his own speciialty. Only one neurologist told me he didn't believe in any form of radiation. I removed him from my list, although he came recommended and I liked him. He wanted to do only the translab approach, which, I must presume, is all he is comfortable with.

I am now completely stumped as to what is the best treatment for myself; and so far I have been told I need to make the decision myself. All say I should do this in the next couple of months. No one has ever mentioned the "position" of my tumor. I am just told I am a good candidate for either treatment.  I am almost 62, in generally good health (on blood pressure and cholesterol meds and a bit overweight). I'm active, have only about a 50% hearing loss in the higher frequencies.in the AN ear. I am extremely afraid of this surgery. I have had others, but this is different. I have been told that although surgery is difficult, the results are more immediate and finite. If I were 5-10 years older, surgery would most likely not be recommended at all. I know that with either treatment, regrowth is a possibility, and even with surgery, they can't always get it all. Radiation cannot be done twice. I have been told by several other physicians that surgery is most often the first course of treatment; saving radiation for later if necessary.

I understand that the possible headaches, balance issues and facial paralysis are truly "quality of life" issuesj, and they can be worse than loss of hearing. Is one method better than another if I am so worried about all these things? I do want to stop this little monster! I AM STUMPED AND GETTING DEPRESSED! My family is losing patience, which isn't fair to me. I am pretty outwardly brave, and so I don't think they are seeing this as so serious. I don't want to seek radiation just because it's easier if it's not the better way to go. I am also scared to death of the out-of-pocket expense we may incur. We have insurance, but the coverage gets a little worse each year. Doctors always say "oh, don't let the expense influence your choice". Well, I wonder if I can ask THEM not to worry about the expense when it's time to pay the bill??? I don't want to spend our retirement savings on this. What a heartbreak that would be! 

Does anyone have any suggestions for me? See more doctors? Names of anyone else in my area? Send my MRI to the House Clinic? Maybe I know too much! I just want it all - the least amount of hearing loss, NO facial nerve issues, balance no WORSE than I live with now - and I can't seem to sort out which procedure offers me the best chances. I thought I asked the doctors all the right questions, but I have dozens more every day! How much can I pick their minds before they are annoyed? These specialists DO have egos, but not in a bad way. I do like the doctors I have seen. Sorry to be so long-winded! Thanks for reading this- Kathy
Kathy
Diagnosed 12/08 Approx 1cm AN
Surgery 7/27/10 Retrosigmoid 6 1/2 Hrs, 1.2 x 1.6cm AN,  Dr. Selesnick-Weill Cornell, and Dr. Gutin-Sloan Kettering, NYC
No Facial Nerve Issues or Headaches; Tinnitus Remains; 30% Word Recognition on Post Surgical Hearing Test; Balance Stable. Feeling Very Well

Kaybo

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Re: Newbie with questions
« Reply #1 on: December 28, 2009, 04:49:16 pm »
Kathy~
Hello and welcome!  Feel free to always ask questions - that is what we are here for!!  ;)  Sounds like you have really been doing your research and have been searching out different opinions.  That is the best thing to do.  I know that more people will be along soon to welcome you and give you their advice.  I believe in that "gut" feeling (I think it is really from above!) and so maybe you haven't struck gold yet.  I am in Texas so can't help you much.  I know that you said that you don't want to go to NYC but I have heard lots of good things about some of the Dr.'s there.  This is definitely something that you want a very EXPERIENCED surgeon/doctor guiding & working on/with you every step of the way.  Take a deep breath...it is all going to be OK!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: Newbie with questions
« Reply #2 on: December 28, 2009, 04:49:21 pm »
Hello and welcome, Kathy ~

Although I'm not at all pleased to learn of someone else being diagnosed with an acoustic neuroma, I thank you for posting your story.  You've definitely come to the right place.

I don't have specific advice for you only because (a) I'm not a doctor and, (b) the choice of treatment (surgery or radiation) really has to be made by the patient because, in the final analysis,  you're the one who will have to live with the consequences, be they positive or negative.  

That having been stated, you're facing a very common dilemma for AN patients with 'small' tumors - the choice between surgery, with it's necessary hospitalization, inherent risks (nerve damage, infection) and traumatic effect on your body versus irradiation, with it's own inherent risks (nerve damage, swelling issues) and traumatic effect on your body. You want to do what's most efficacious but are rightly concerned about the ramifications of either treatment, especially surgery.  That is a sensible attitude and there is never a need to apologize for it.  Many of our members have gone through the same agonizing process before coming to a hard-won treatment decision.  Sometimes, too much information can be exhausting so you need to take a 'step back' and try to gain some perspective on the problem.  This might be one of those times.  Lots of folks will offer you their advice and some will give you their stories of how they made a treatment decision, which is never easy.  I truly hope you'll benefit from these posts.

Frankly, Kathy, there simply isn't a panacea or 'perfect' treatment.  Every AN patient and every AN, for that matter, is slightly different, not to mention your physical condition, age and most important, your lifestyle.  Some of our members are younger (30's & 40's) have jobs to hold down and young children to raise.  They cannot be sidelined for months while recovering.  Others, like me are retired (I was diagnosed at age 63) and don't have to deal with young children (my son is 30) or hold down jobs.  Those factors can influence your treatment decision and should be considered.  While surgery is a daunting challenge, it often is not all that difficult with a 5-day hospital stay the norm.  Some AN surgery patients are home within 3 days.  Radiation has it's down sides (previously mentioned) but it is non-invasive and rarely requires more than an overnight hospital stay, if that.  

I underwent both debulking surgery on a large AN (4.5 cm) then radiation, 3 months later.  This was planned and rendered very good results.  I suffered no real complications from the surgery (retrosigmoid) and recovered quickly.  The radiation (FSR) was uneventful (outpatient) and seems to have killed off what remained of my dessicated AN.  3 years later, at age 66, I'm fine.  Of course, this is anecdotal evidence of one person's AN experience but I trust it may be encouraging to you.      
« Last Edit: December 29, 2009, 03:45:19 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Darlene

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Re: Newbie with questions
« Reply #3 on: December 28, 2009, 05:55:51 pm »
Kathy,

I completely understand your dilemma, I felt much the same way. At the time, I actually wished I didn't have a choice and there was only one option. Alas, I finally had to take a leap of faith ( if I wanted any possibility of saving my hearing, it was decreasing) and decided on surgery.
 
I am 44, with 4 kids, a job and alot of volunteer activities, I felt that with surgery I would know where I stood almost immediately and would not have to wait or be surprised by any symptoms etc... further down the line.  I wanted this to be done.  Well, my surgery was a success, but I did have some facial weakness that requires follow up, so things don't always go exactly as planned,  but overall I have to say most days I forget I even had surgery or a tumor.  When you have done all your research... got your questions answered and are tired of thinking, worrying about this anymore you will know what you feel most comfortable with and will make the right decision for you.

I also live in Northern NJ, I initially saw a Dr. Kaptain from Hackensack, a very talented young neurosurgeon, then I went online and heard wonderful things about other DR.s,  I met with Dr. Roland & Golfinos from NYC and Dr. Storper from Columbia.  I went with Dr. R& G from NYU, they are incredibly caring and NYU was wonderful.   I think they are worth the trip to NYC.  DR. Golfinos does radiation too, so you may get an unbiased opinion of what is right for you.  If you would like to talk please feel free to send me a personal message.     

Darlene


 
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

kathysjourney

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Re: Newbie with questions
« Reply #4 on: December 28, 2009, 06:15:38 pm »
Thanks for the quick responses,Kaybo and Jim - it does help to hear other stories and know that everyone else has taken a similar journey. A support system is such a great thing. I know each case is different with slightly different outcomes. So many do very well and it's encouraging. I'm not ready to be OLD as of yet - but at my age I can think of many worse situations to be in. I have felt that way from the beginning. It's very strange to be initially "relieved" when the word BENIGN is attached to the word tumor! I took a break from everything for a couple of weeks for the Christmas holiday, but today I thought I'd better get back into spending some time each day trying to get a more clear picture for myself. It's been almost 6 weeks since I learned I needed to research treatment. I will contact all my professionals again with more questions - especially about the location of my AN. I'd like to know if they see any bearing on an outcome because of it's location. I think if I were not considering surgery, I would not be so afraid of it.  My tumor is small, though, and I'd like to hear more about Gamma Knife, too. Whatever I do, I hope I can feel somewhat confident that I have made the right choice for me. I would have to flip a coin if I had to decide right now, and I don't want to go forward that way. I am one to agonize over making the best possible decison. I may never feel that way about this.

We have 2 very young grandsons we adore, and I sure want to enjoy them for many years to come! Although I'm tired and a little unsteady at times, I'm functioning well and had a crowd for Christmas and overnight guests, just like last year. I've shed a few tears, but I've decided I will try very hard to save them for a time when I MIGHT need them.

The doctors I have seen are very experienced with AN's; I chose them through research and recommendations from other doctors. I guess I will contact someone in NY - I do have several names, and take the trip to hear what they have to say.

Hello Darlene - just ready your message. Yes, Drs. Roland (and Golfinos)iI have heard about. I have met one of Roland's patients who thinks he's wonderful, too. How is your balance? Did you have that issue prior to surgery? Retrosigmoid is what has been recommended to me. Thanks! Kathy
Kathy
Diagnosed 12/08 Approx 1cm AN
Surgery 7/27/10 Retrosigmoid 6 1/2 Hrs, 1.2 x 1.6cm AN,  Dr. Selesnick-Weill Cornell, and Dr. Gutin-Sloan Kettering, NYC
No Facial Nerve Issues or Headaches; Tinnitus Remains; 30% Word Recognition on Post Surgical Hearing Test; Balance Stable. Feeling Very Well

Pembo

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Re: Newbie with questions
« Reply #5 on: December 28, 2009, 06:19:21 pm »
Follow your instinct for the best course of treatment. My tumor was 4 cm and had been there 10-15 years and like you they were signs but no one ever put them together. Fatigue for years was a biggie, I attributed to having babies in the house. :)

Because my tumor was so large, surgery was my only option. Personally I just wanted the thing out NOW. I wanted my surgery ASAP. Best of luck to you and we're here to help...
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Darlene

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Re: Newbie with questions
« Reply #6 on: December 28, 2009, 06:40:46 pm »
Kathy,

I did experience some balance issues prior to diagnosis.  As a matter of fact my balance nerve must have deteroriated over the course of years because the DR.s were very surprised at how bad my balance was when tested prior to surgery.  The good news is that after surgery I had absolutely no balance issues or dizziness.   

Good Luck,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

mimoore

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Re: Newbie with questions
« Reply #7 on: December 28, 2009, 06:53:27 pm »
Welcome Kathy,
You are not alone.
Big ole cyber hug for you!
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

pjb

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Re: Newbie with questions
« Reply #8 on: December 28, 2009, 07:00:36 pm »
I was advised by many doctors not surgeons and they all recommended to have my 1 cm., AN removed they said at my age 57 and the size of the AN it is better to have it taken out.  I was referred to Dr. Sista at Columbia who was highly recommended but I went with Dr. Selesnick and Dr. Stieg at NY Presby., and my AN was successfully removed with no facial paralysis or eye problems but of course other post-op issues that some do experience and others do not. I agree you want the best surgeon and hospital but our insurance companies plays a big factor in our choices and not many great doctors accept all insurances.

My prayers are with you in whatever choice you make,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

suboo73

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Re: Newbie with questions
« Reply #9 on: December 29, 2009, 06:34:12 am »
Follow your instinct for the best course of treatment. [Pembo] 

Hi Kathy and WELCOME!

Sorry you have to join this club, but you already know this is a great place!
This Forum has been a God-send for me, too.  Lots of stories/experiences to read, and i have been here since Oct. 2008.

During my last ENT visit/MRI on Dec. 4th, 2009, the resident i first saw said. 'If i were you (or if you were my relative/wife/etc.) i would recommend surgery, you are so young."  Well, wait a minute here - isn't this MY brain you are talking about?  - Also, my ENT said he thinks i should 'do' something when the size reaches 1.5cm.
Since i am just over 1cm, i have decided to W & W - this is my procrastinating nature.  But more importantly, i have no increasing episodes of troublesome symptoms.  Hearing loss, and fullness in the ear, yes.  One episode of vertigo in Jan 09, none since.

So - after a harrowing year with my sister's AN, my AN (2008), and then my father's stroke this past May, i said enough is enough.
Better to take a conservative approach for the moment - this will work for me unless something else pops up in the meantime.

You speak about the quality of life issue - that is important!  I like to travel, so i don't want any treatment to impede that.  However, ANY treatment could make how i travel a little different.

And, believe it or not, i have asked 2 different docs exactly WHERE is this tumor located?  The neuro said 1/2 in 1/2 out of the ear canal.  And the ENT concurs.
Well, i made them show me on the digital MRI picture, so i could better understand my personal situation.  This is because i have the same question as you - if i have radiation, how will any potential swelling affect the nerve(s)?  So i am still asking questions, still learning.

BTW (By the way) - my sister's AN is 2+cm and she is sitting 'tight' for the moment, happy to have no new growth, but ready to take action when needed.

I know one of our fellow Forumites, Kate, often recommends make the pros and cons list.  Perhaps you should try this and see how it works.

Please keep us posted on your progress.  Yes, it sure is quite a journey!
All my thoughts and prayers are with you and your extended family.
Enjoy those grandbabies!

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

CHD63

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Re: Newbie with questions
« Reply #10 on: December 29, 2009, 07:10:06 am »
Kathy .....

Adding my welcome to this forum of caring, supportive friends.  As you are discovering, making the decision for treatment (or waiting and watching) is one of the most difficult aspects of this whole journey.  Your story has a very familiar ring to it.  I, as well, had the balance issues first, followed by the hearing loss.  I was older than you are when diagnosed with a 2+ cm AN.  I was given the option to explore radiation or surgery.  However, my medical friends whom I trust, were really urging me to get the thing out of there.  Ultimately I chose surgery and had retrosigmoid at Duke with excellent results.  I am able to do everything I want.  I retained 20% of my hearing.  I do have the bothersome tinnitus but I can tune it out most of the time.  Because of having had surgeries on both sides, I have to be very careful walking in the dark (no functioning vestibular nerves now), but otherwise I can pick up and carry my grandbabies, fix big Christmas dinners, etc.  (I will have to be truthful that I am tired this week ..... but maybe that is from doing 7-8 loads of laundry yesterday ..... I lost track.   ;D).

As Kay said, at some point you will just know what is the right decision for you.

My thoughts and prayers for you.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Lilan

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Re: Newbie with questions
« Reply #11 on: December 29, 2009, 07:13:18 am »
Kathy, welcome and best of luck with your decision making. Many of us go through a period of struggle as you've described, and as Kaybo says, we usually reach a "gut" feeling about what's right. (Which doesn't mean an absence of fear or worry about what you do choose! -- but just feeling "drawn" to a certain answer for yourself.)

You sound like you're thinking it through quite intelligently. Whatever you decide, I would encourage you to reconsider your aversion to traveling for treatment, be it surgery or radiation, should that be necessary. Not every burg in the world has an AN expert in it -- and this requires an expert. People travel across the world for high-quality AN treatment -- you shouldn't be too averse to traveling from NJ to NY, I'd say, if it will make a difference in the experience level of the surgeons, for example, or allow you to get cyberknife with an experienced provider if that interests you, or whatever.

Just keep an open mind, keep reading and asking questions, and eventually an answer will present itself.

Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

leapyrtwins

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Re: Newbie with questions
« Reply #12 on: December 29, 2009, 08:21:50 am »
Hi, Kathy and welcome to the Forum.

As Jim said, treatment choice is a personal decision.  It's also a very hard decision to make, but with research you'll decide what is best for you.  I am one of the forumites who subscribe to the "go with your gut" feeling - it's what I did and my choice turned out to be excellent.  You'll know when the treatment choice and the doctor(s) are right for you.

Drs. Roland & Golfinos are great doctors; you can't go wrong with them.  I recommend that despite your wish not to travel to NYC, you schedule a consult with them.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

kathysjourney

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Re: Newbie with questions
« Reply #13 on: December 29, 2009, 10:00:23 am »
Hugs to each of you for your support and responses! I already feel better hearing about your experiences. It's comforting to be reassured that we can get through this and get back to our lives again! I do realize that although some changes may take place from treatment, adjustments to those changes can be taken in stride and all of you are proof of that. I'm going to schedule a consult with someone in NY - you're all right that I shouldn't rule it out. I'll send updates! Happy New Year to all. Kathy
Kathy
Diagnosed 12/08 Approx 1cm AN
Surgery 7/27/10 Retrosigmoid 6 1/2 Hrs, 1.2 x 1.6cm AN,  Dr. Selesnick-Weill Cornell, and Dr. Gutin-Sloan Kettering, NYC
No Facial Nerve Issues or Headaches; Tinnitus Remains; 30% Word Recognition on Post Surgical Hearing Test; Balance Stable. Feeling Very Well

Vivian B.

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Re: Newbie with questions
« Reply #14 on: December 29, 2009, 09:32:10 pm »
Hi Kathy,

Welcome to the forum. It's great that you found this forum as you will see the many different experiences from everybody but yet all with the same diagnosis. It could be very overwhelming. You need to take a step back, come to terms with the fact that one way or another some treatment has to be done. I actually tried to picture myself going through both treatments, radiation and surgery, and after going back and forth in my mind for several weeks and reading on and on, I decided on radiosurgery. Definitely not an easy decision but it comes. You need to clear your head first as hard as it may seem to do so. Good luck and keep us posted.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

 


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