Author Topic: New here, diagnosed on Valentine's Day  (Read 4583 times)

mbv1977

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New here, diagnosed on Valentine's Day
« on: February 18, 2014, 10:51:09 pm »
Hi there, my name is Megan and I'm a 36yo SAHM to two boys (age 6 and 3) with a remarkably supportive husband. I was diagnosed with a 5x4x4mm AN on Friday and have spent the last few days digesting it. I live in Chicago (Evanston) and have been going to Northwestern Hospital so far.

So, my story, as an introduction to me  :)

I began noticing in December that I could hear my heartbeat in my left ear on occasion, not tied to anything specific. Just enough to notice and be a little concerned. My initial concern was actually that it would be blood pressure! I deal with moderate to severe anxiety so I actually did very little online sleuthing to see what it could be, finding only mentions of benign tumors as a very rare possibility. So, when my annual physical appointment arrived in January, I mentioned it to my internist who just told me I'd need to see an ENT but could wait a few months for that. Well, I'm not a waiter  ;) so I called her referral the next day and made an appointment for as soon as possible, but it wasn't for a few weeks.

Fast forward to last Monday and I went in for my hearing appointment. Great hearing, apparently, but given my one-sided symptoms, the audiologist said she would see if the tinnitus specialist in the office was available. To my good luck, he was immediately so I met with him. He was actually initially unimpressed because my symptoms were not affecting my everyday life. However, I explained that I was not so much concerned with the symptoms but rather with the underlying cause of the symptoms; and I am so glad I pushed. He agreed that I should have a CT scan and an MRI, as well as blood work to rule out anemia.

I was able to schedule both of the scans for the next day (Tuesday, I said I'm not a waiter!!) and was able to schedule my follow-up with him on Friday. This original doctor is not a specialist in AN and has referred me to Dr. Micco for an appointment this Thursday.

At this point, I'm completely unsure of what to do, so I'm hoping this appointment will help.

Does anyone know of Dr. Micco? I've seen lots of references to Drs. Weit and Battista and, based on those, I've made an appointment with Dr. Battista for the beginning of March for a second opinion. My concern is that my coverage doesn't appear to include them, but I'm not ruling them out just on that.

I'm honestly petrified of surgery...mostly of surgical complications. But unsure about radiation And I'm quite anxious about my appointment on Thursday. I worry that there may be something else wrong, something worse, I guess. However, I do want to hear an expert's input so I'm looking forward to that.

Anyway, wanted to introduce myself and get my story out there. It took a while to get up the guts to post on here, although I've been reading since Friday when my doctor recommended this site as the best place to learn about AN.

I'm open to any advice and honestly so glad to have found this forum.

Megan

Jim Scott

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Re: New here, diagnosed on Valentine's Day
« Reply #1 on: February 19, 2014, 09:00:11 am »
Hi, Megan ~

I'm sorry to learn of your AN diagnosis but glad that you found the ANA website, registered and decided to join our discussion forums.

I don't live in your geographical area so I cannot offer any doctor recommendations or opinions on the doctor you've consulted.  However, we have active members in your part of the country and I'm sure they'll be happy to address your questions.

The fact that you've been very pro-active in your research so far will prove to be an asset as you proceed.  Your tumor size makes it amenable to radiation but as an 'impatient patient' (that's what my doctor laughingly called me) you may want to have it permanently removed via surgery, which is a somewhat daunting prospect but one that thousands of AN patients have undergone with success. I'm one of them. However, that decision lies in the immediate future and will be yours, alone.

Being a stay-at-home-mom with a supportive husband is another asset that will prove valuable to you following your radiation or surgery.

I recall when I was experiencing my pre-diagnosis AN symptoms (dizziness, loss of the sense of taste, severe fatigue, stabbing pain at the AN site) I secretly feared that I might have some form of brain cancer and was actually relieved to learn that the tumor I had was benign and operable.  My neurosurgeon, with decades of experience in AN removals, assured me that I would not suffer post-op headaches and that he would do everything in his power to avoid causing me facial paralysis.  He 'de-bulked' the large tumor (peeled off layers) and severed it's blood supply then teamed with a radiation oncologist to 'map' 26 FSR treatments intended to destroy the tumor's ability to re-grow.  Immediately upon waking up from the anesthesia my pre-op symptoms had disappeared.  I suffered no facial paralysis and never had a headache.  The follow-up radiation (3 months later, as planned) was uneventful - and successful.  Subsequent MRI scans over the next two years showed necrosis (tumor cell death) and even some small signs of shrinkage.  My neurosurgeon was delighted and at that point basically discharged me.  This June I'll observe the eighth 'anniversary' of my diagnosis and surgery. I should mention that at the time of my surgery and radiation I was 27 years older than you are, today and in otherwise good health (although not 'athletic').  I recovered relatively quickly although fatigue was a factor to overcome (hey, it's brain surgery!)   

I trust that you'll make the best treatment decision for you and will come out of this in good shape.  You have a lot going for you (youth and determination with family support).  As a support site, we stand ready to inform, advise (when asked) and generally support AN patients. You'll find lots of new friends here and will read many success stories.  Please try to keep us updated as your time permits.  Thanks.

Jim
 
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.

Gloria Nailor

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Re: New here, diagnosed on Valentine's Day
« Reply #2 on: February 19, 2014, 10:07:54 am »
Welcome to the forum, I think you will find a lot of support and help here.  I am not sure where it is on the site, but members mention a list of questions to ask your doctor and to think about.  I actually stalked the forum for months before I joined, I joined after my surgery and have found it very useful.  The one thing you will find is that these tumors effect everyone differently as do the choice of treatment and the side effects. I do believe that for every person who is a member of the forum and has issues, there is another person who got through their experience without issues and just doesn't need the support of the forum. I think you will tend to find that those of us here have issues and look for support. I do believe seeing a therapist is essential, even if you have a wonderful family and support group. Being diagnosed and treated and recovery is very stressful. I hope you find support here. I live in Vermont and saw a local neurologist/surgeon, who I trust greatly, but I will tell you that I often wonder if I should have gone to someone who did more of the surgeries than my guy. But, at the time, it felt like the right thing to do. How large is your tumor?
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

mesafinn

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Re: New here, diagnosed on Valentine's Day
« Reply #3 on: February 19, 2014, 10:39:15 am »
Hi Megan,

I'm a former Chicagoan of 20+ years and send my kindest of thoughts.  I have rarely read people getting diagnosed similar to yours, but I, too, started my AN journey because I could hear my heartbeat in my left ear.  It's what lead me to the discovery, too.   I still have it (called pulsatile tinnitus which is different than tinnitus which I also have), and you could ask for an MRA in addition to an MRI at some point.  An MRA examines your blood vessels.

I have seen several specialists who cannot decipher why I am hearing my heartbeat in my left ear (even after treatment), but alas, it is what lead to my AN diagnosis.

Northwestern is a terrific facility, but make sure you find EXPERTS in ANs....both radiation and surgery.  Your tumor seems quite small, and so radiation is an option for sure.  But only you will eventually know that.

I am glad to read you're seeing Dr. Battista (or Dr. Wiet) because that's who I would see in the Chicago area.  But I'm also glad to read that you would not rule anyone out because they might not be in your network.  I made the same decision and paid out-of-pocket because I wanted the best to deal with my brain, not just someone who was in network.  Again--that's a very personal decision and all circumstances are different.

I validate much of what you're going through and wish you the best.  Feel free to PM with any particular questions and/or concerns.

Take care.  Peace,

Patrick
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

leapyrtwins

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Re: New here, diagnosed on Valentine's Day
« Reply #4 on: February 22, 2014, 09:58:52 am »
Have heard of Dr. Micco, but don't know much about him other than he's experienced and reputable.

I'm a patient of Dr. Battista's and can't say enough great things about him.  He and Dr. Robert Kazan (neurosurgeon) surgically removed my AN in May 2007 and my outcome was excellent.  He also did my BAHA implant in 2008.

Dr. Battista does both radiation and surgery which is a definite advantage for you since he isn't biased when it comes to radiation vs surgery.  Your AN is small and, depending on location, you probably have both options. 

Dr. Battista's a very nice, low-key, caring man, and I liked and trusted him completely from the moment I met him; in fact, I never consulted with anyone else.  He has a great bedside manner - even came back to the hospital a second time one day because I was sleeping the first time he was there; virtually unheard of among docs who typically just wake the patient up.  He did scare me a little at my first appointment because he told me absolutely every side effect of treatment that I might encounter.  But that's just because he believes in full disclosure; has seen a lot of patients who's doctors didn't inform them of things that "could" happen.   He tends to be a bit on the serious side, but can be humorous when he discovers that's what puts a patient (like me) at ease.

When you see him, tell him Jan Benjamin sends her best  :)

Jan

Forgot to say, feel free to PM me - or email me (my address is in my profile) - anytime.  I'll answer any questions you may have - or just vent with you.
« Last Edit: February 22, 2014, 10:00:49 am by leapyrtwins »
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

TexasSprinter

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Re: New here, diagnosed on Valentine's Day
« Reply #5 on: March 02, 2014, 09:28:59 am »
Megan--It took me some time to digest my diagnosis and weigh the treatment options.  Ultimately I decided on surgery, mainly because I wanted to be rid of the tumor and could not stand to think about it all the time.  It's definitely a personal choice and not an easy one.  Best of luck on your decision. 

v357139

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Re: New here, diagnosed on Valentine's Day
« Reply #6 on: March 11, 2014, 06:51:05 pm »
Megan - I was terrified of surgery too.  But mine was 3.5cm and I had a great result, so my fear was unfounded.  Consult with highly experienced AN teams with a good record of success (ask them about it).  That should help allay some of the fear.  I offer the following executive summary to you: surgery is for those who just want it out, radiation does avoid some surgical risks, but you need the patience to see if it worked, it takes time to know if it worked.  Wait and watch obviously requires more patience, but you avoid surgical and radiation risks.  Hope that is of some help.  Keep us posted, we are here to help.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

ladinred26

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Re: New here, diagnosed on Valentine's Day
« Reply #7 on: February 16, 2015, 03:00:31 am »
I know this post has been on here a long time, but I wanted to add my thoughts about Dr Micco. I have seen him since the early 2000s. First, I started seeing him for Meniere's Disease and then I was diagnosed with a brain tumor in October 2013. I presented with facial paralysis in July 2013 at the local ER which was initially treated as Ramsey Hunt Syndrome (shingles in the ear which causes facial paralysis).

I initially saw improvement and then the paralysis became worse. I went to see Dr. Micco and he ordered an MRI which discovered my 5.9 cm tumor.

He then referred me to Dr. James Chandler (same day). I had surgery eight days later. I cannot say enough good things about Dr. Micco. He is so personable that I look forward to my visits. When I go to see my plastic surgeon, Dr. Sidle (in the same office), I love to see if I can catch Dr. Micco and say hi. He put a platinum weight in my eye and I receive compliments on it from all my other docs.

I also have nothing but respect for Dr. Chandler. My thought is that I want my neurosurgeon to be the best and that takes focus. Dr. Chandler has lots of focus. I was in the hospital for two weeks initially so had lots of interactions with Dr. Chandler's residents. I loved his residents. Plus I love his assistant Mary Ellen. She is absolutely wonderful to work with. I used to have follow-up MRIs every three months and would see Mary Ellen. She makes me laugh every visit. I have now graduated to MRIs every six months.

v357139

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Re: New here, diagnosed on Valentine's Day
« Reply #8 on: February 23, 2015, 08:18:48 pm »
Very happy for your great results!!  Tell us what city in case someone else there needs a good doc.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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