Author Topic: Dealing with my new AN diagnosis  (Read 10869 times)

MandaPanda

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Dealing with my new AN diagnosis
« on: March 17, 2011, 01:53:41 pm »
Good afternoon! What an informative site! Thank you so much for candidly sharing your experience! I'll give you a little background on my situation. I have experienced diminished hearing on my left side for 3 years. I'm one of those obnoxious people that refuse to go to the doctor until I'm REALLY sick or REALLY inconvenienced since I have 2 little girls (7yrs and 2yrs), a husband who works LONG hours, and no family close by that can help. So I've just been ignoring my hearing loss--chalking it up to getting older:) But about 3 weeks ago, the left side of my tongue and lips became numb/tingly...I ignored this, too, figuring it was something I ate or my chapstick or some allergic reaction. Then 2 weeks after the numb tongue and lips began, I woke up with numbness on the entire left side of my face. That did it! I went to my GP on Monday who sent me the next day to a neurologist who told me it was likely migraines (huh? No headaches) but he wanted to do an MRI to be sure. I have to say I was completely blind-sided last Wednesday when the neurologist called to say I had an AN on my left side on the nerve root. It's 2.1x2.1x2.0 cm. I have an appointment with Dr. Bruce Mickey and Dr. Walter Kutz on Friday, March 25th, at UTSoutwestern in Dallas.  Has anyone had any experience with either of these surgeons? Other moms: how did you address the issue of post-op effects with your little ones? Were they scared by your facial paralysis or weakness? I'm more worried about the effects of this surgery on my sweet girls than on me! Any information or advice will be greatly appreciated! I've gotten over the initial terror and shock, but now worried about my girls! God's blessings on all of you!

Amanda

CHD63

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Re: Dealing with my new AN diagnosis
« Reply #1 on: March 17, 2011, 02:22:34 pm »
Hi Amanda and welcome to this forum ...... now your second family!! :)  Much empathy, love, and caring on this site, as well as valuable information.

First of all, take a deep breath ..... you are among friends, many of whom have "walked in your shoes" and will be with you through this journey to treatment.

I personally do not know the doctors you mentioned and I did not have little ones when my AN was removed.  I did not have facial paralysis so it did not change my appearance after surgery.  My granddaughter was three years old at the time and she and her mother came to stay with me after surgery.  Her mom just explained to her that Grandma had something growing in her head that did not belong there and the doctor had to take it out.  She was perfectly satisfied with that answer.

In the meantime, if you have not already done so, send for the free informational material from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=3&Itemid=159  These materials are not only full of good information, but reassuring, as well.

Best thoughts and let us know any other questions you have.

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

MandaPanda

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Re: Dealing with my new AN diagnosis
« Reply #2 on: March 17, 2011, 03:09:23 pm »
Thank you, Clarice! My 7 yr old is pretty bright and knows her Momma pretty well...she knew something was up when I had 3 dr appts and 2 MRI appts in a week! But it really wasn't that big a deal to her because she had a hemangioma tumor on the bridge of her nose that was removed when she was 5yrs old. My 2yr old has bilateral kidney reflux, so surgery is in HER immediate future as well. So to my 7 yr old, surgery is just a fact of life. I casually explained it like I had a bump in the back of my head like she had on her nose and that they had to take that out too. Was really just worried about their reaction to post-op things...praying those are minimal! I did request the information packet...hoping it gets here before next Friday! Just staying positive now and doing alot of praying! I have amazing friends and family, and they've assured me that we'll all get through this together!
« Last Edit: March 17, 2011, 03:11:13 pm by MandaPanda »

Jim Scott

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Re: Dealing with my new AN diagnosis
« Reply #3 on: March 17, 2011, 03:43:53 pm »
Hi, Amanda ~

Please accept my welcome and empathy for your feelings of shock and angst upon receiving the AN diagnosis.  Like you, I managed to get through most of my adult life without needing a doctor except for routine physical exams and such.  About a decade ago, when I noticed that my hearing was diminishing in one ear (my left) I chalked it up to 'aging' (I was in my late 50's) and told my wife that I was glad it was only going away in one ear, which she thought was odd but couldn't convince me to see a doctor ("he'll just tell me I'm losing hearing in one ear - and I already know that").  I adjusted to the unilateral hearing loss (I can be very adaptable) and was fine until late in 2005 when my balance was affected (I almost tumbled down the stairs of our condo) and my sense of taste diminished to the point that I practically stopped eating and lost an (unneeded) 30+ pounds. I was also experiencing intermittent 'stabbing' pains on the left side of my head, although they were relatively infrequent so I decided not to mention them to my wife.  Well, she finally caught on that something wasn't right (my failure to eat did it) and made an appointment with our PCP.  He sent me for tests to determine if my loss of taste was caused by 'a sinus condition'.  One of the tests was an MRI.  He called me with the news that the MRI discovered a 'huge' benign tumor (acoustic neuroma) on my left side and that it had to be removed as soon as possible because it was impacting my brainstem.  Long story short: I found a  neurosurgeon with decades of experience removing ANs.  I underwent 'retro' surgery to 'debulk' the tumor and sever it's blood supply.  I'm happy to report that I came out relatively unscathed, as it were.  The neurosurgeon teamed with a radiation oncologist to 'map' subsequent (planned) FSR treatments to stop any future tumor growth.  Later MRI scans showed tumor necrosis and the beginnings of shrinkage, so all is well and, now, almost 5 years later, I'm doing great.  I'm confident that you'll get through surgery (or radiation) just fine, too.  Many AN patients do.  Some post on these forums.

My son was grown when I underwent my surgery (he was relatively blasé about the whole thing) and I don't live anywhere near Texas so I regret that I cannot respond to your pertinent questions but I'm confident other parents will.  You sound like a good mom and I bet your girls will handle this very well.  I know from experience that children often look to the parents for cues in situations that are new and possibly scary for them.  If you and your husband remain fairly calm (no tears) and don't seem to be frightened about this, I suspect that your girls will reflect that attitude. Meanwhile, you can always come to these forums to ask questions or just vent, when necessary.  We know what you're going through and we want to help and support you in whatever way we can, so, don't be a stranger!  :)

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.

jaylogs

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Re: Dealing with my new AN diagnosis
« Reply #4 on: March 17, 2011, 04:01:29 pm »
Hello Amanda!! I just wanted to chime and and offer my welcome as well!  I know these AN's are never convenient things to have, but with a lot of prayer and a sprinkling of good spirits thrown in, you'll do just fine!  As Clarice said, this forum is like a family and many contribute LONGGGGGGGGGGGGGG after they've been diagnosed with their AN's.  Some people take what they need from here and then never be seen again, others will lurk and just only read all these postings. Whatever flavor you want is just absolutely fine here!  This is a very good place to vent as well as get information, so please don't hesitate to ask questions. As they always say on here, there's no such thing as a dumb question here!  Take care and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mk

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Re: Dealing with my new AN diagnosis
« Reply #5 on: March 17, 2011, 05:47:22 pm »
Hi Amanda,

I can really empathize with you, as your situation reminds me exactly mine. I had exactly the same presenting symptoms (minus the hearing loss) .When I was diagnosed about 3.5 years ago my son was 1, and my daughter 5 years old. Like you, my husband is very busy (he has an erratic schedule in his job as he often works shifts), I have a very demanding job too (and I was just back from maternity leave). Plus I don't have family close by (they  are all overseas) so no help close to home. To make things worse I live in a relatively small city, which meant that I had to travel at least 3 hours to get to a major centre where all the specialists are.
Needless to say I was totally overwhelmed and didn't think I can manage this. Finally I opted out for Gamma Knife stereotactic radiosurgery, which was a long shot for me, since my AN was already bordering on the large side. I thought I would give it a try, hoping that it would arrest the growth and that I wouldn't have to deal with the long recovery times. I didn't have any problems after my GK, I didn't miss a day at work and continued my busy life. Unfortunately it didn't work out for me though, as there is some growth. But it did buy me sometime, so that my kids are now older (four and eight), things are more stable at work and I feel ready now to go ahead with the surgery.
2 cm is on the medium side, and this should give you some months to research all your options, make an informed decision and prepare yourself. Seek as many opinions as you can and read all the informational brochures and this forum. We all know how overwhelming this is, but at the end everything will work out.

All the best,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ferguson75205

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Re: Dealing with my new AN diagnosis
« Reply #6 on: March 20, 2011, 03:58:50 pm »
Hi Amanda!

Last spring, I had meetings with three physicians affiliated with UTSW Medical Center's Skull Base Program - Peter Roland, MD, Otologist; Bruce Mickey, MD, Neurosurgeon; and Lucien Nedzi, MD, Radiation Oncologist. All of them agreed with me that, at the time, watch and wait was an appropriate course of action. My AN was relatively small and my only noticeable side effect was moderate hearing loss. In fact, Dr. Roland thought there was a better than 30% chance that the tumor would not grow any further. At the same time, Roland and Mickey, the two surgeons, were prepared to cut it out if there was any subsequent growth, while Nedzi, the radiation oncologist was saying that I was a good candidate for CyberKnife or Gamma Knife radiation. Parenthetically, I asked each of them about proton therapy, but each in their own way dismissed it as an option to consider.

After six months of watching and waiting, my next MRI showed some AN growth. The hearing side effect had not changed significantly, but, I was starting to notice a slight equilibrium issue (motion related). In the meantime, I had done further research on my treatment options, including proton therapy, and, ultimately decided to go with proton therapy. I chose Loma Linda Medical Center and their Proton Treatment Center located in Loma Linda, CA. I started my therapy in late January and just finished a couple of weeks ago. A brief summary of my care can be found in one of my earlier postings on the ANA Discussion Forum (do a search for proton therapy).

I strongly encourage you to meet with the two Skull Base Program physicians that you've scheduled for this coming Friday. I would also suggest that you meet with one of the Program's radiation oncologists regarding the pros and cons of radiation with gamma or x-rays. Additionally, I would recommend that you send a copy of your MRI to two or more proton therapy centers (MD Anderson in Houston and ProCare in OKC are reasonably close to North Texas where I presume you live). I chose Loma Linda Medical Center based, in part, on their long history of hospital based proton therapy and the number of reps they have had with AN patients. In any case, these therapy centers will review your MRI and counsel you on-site or from afar regarding appropriateness of treatment. It may turn out that you are not a proton therapy candidate, but if you are, the morbidity and mortality rates augur well for proton therapy vis-a-vis microsurgery/CyberKnife/Gamma Knife.

I realize that the above paragraph sounds rather instructive, but please know it is offered with the following in mind ... It seems to me that it is very important that AN patients consider all the options and then make an informed decision. You will then be in the best position to positively attack your disease with no looking back.

Good luck and please let me know if I can assist in any other way.

Steve

Steve

72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011

ferguson75205

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Re: Dealing with my new AN diagnosis
« Reply #7 on: March 20, 2011, 04:47:54 pm »
Amanda -

For the record, Dr. Peter Roland is an neurotologist, not an otologist.
Steve

72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011

JAndrews

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Re: Dealing with my new AN diagnosis
« Reply #8 on: March 20, 2011, 05:37:22 pm »
I don't have to much time to write, I have 2 little ones:) and getting them ready for bed. Mine are now 4 and 2. I just turned 41 and know exactly how you feel. Please consult with House Ear Institute in LA. I am fine. It took almost a year until I felt like me again..but more mentally than physically. I researched  a long time, spent a lot of money and definitely made the right decision. My tumor was a little larger than yours. No headaches, no balance issues unless I'm really tired. I was tired for about a year after surgery. The SSD takes some time getting used too. The tinnitus stinks..but again..you get used to it.  Dr. Brackmann and Dr. Schwartz got all of my tumor out, which no other md I consulted with could do. Please e mail me with your number and I would be happy to speak to you via phone
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

MandaPanda

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Re: Dealing with my new AN diagnosis
« Reply #9 on: March 22, 2011, 08:25:24 pm »
Thank you to my new "family" for your candor, encouragement, and advice!  I am impatiently waiting for Friday when I meet with two surgeons at UT Southwestern. My only concern is that the numbness has spread farther on the left side of my face, and--even more disconcerting--the left side of my throat is numb. It feels like there's something stuck in the back of my throat. Has anyone else had this with the throat? Just worried that the numbness is spreading so quickly! Thanks again for your help!

P.S.  I got my ANA packet today! Going to read it before bed!

mk

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Re: Dealing with my new AN diagnosis
« Reply #10 on: March 23, 2011, 08:22:18 am »
For what it's worth, once started my numbness also spread very quickly, possibly within a few days. It then stabilized and has remained the same for three years now. I think that once the trigeminal nerve is impacted, the symptoms show up fast.
One thing that you should watch for is dry eye. I had a dry and irritated eye for months and didn't know what's going on, until I realized that the cornea also has reduced sensation, therefore not sending appropriate signals for tear production. I started using eye drops regularly (and I still do) to avoid this problem.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

MandaPanda

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Re: Dealing with my new AN diagnosis
« Reply #11 on: March 23, 2011, 03:25:49 pm »
Thank you, Marianna! Haven't noticed the dry eye, but will watch out for it!

leapyrtwins

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Re: Dealing with my new AN diagnosis
« Reply #12 on: March 26, 2011, 07:48:26 am »
Dr Peter Roland has a very big reputation as a CI (Cochlear Implant) doctor.  I read an article about him recently and was very impressed.

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

Nickittynic

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Re: Dealing with my new AN diagnosis
« Reply #13 on: March 27, 2011, 01:48:52 am »
Amanda -

Welcome! It's great that you found the forums early on in your AN journey.

I'm in MD so I don't know your docs (though we may be moving to Texas in a year or two so maybe I'll be looking for your recommendation then!).

I started to write a long entry about the kids situation (mine were 1 and 3 at the time of surgery) but realized that my family is more on the 'worst case scenario' side so we probably aren't a good example.  :P

Now that I'm a good ways away from surgery (1.5 years post op) I can say the kids weathered the whole storm pretty well. Kids are resilient. I had facial paralysis which was initially shocking to them but they got over it pretty quick (within a couple days pretty much). They know mommy doesn't hear too well anymore, which can be kind of funny when they are yelling things at me after my "huh? what?" They even got used to me being 'wobbly', though I'm not as much anymore.

Just try your best to explain things in terms they can understand (so probably super simplistic for the 2 year old, while the 7 year old may be interested in some of the science of it?) and remember that as much as you want, or even feel you need to be, super-mom -you are going to have to take some time for you. Is there any family that can come stay with you, or friends? Is it within the realm of possiblity for your husband to take some FMLA time?
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

MandaPanda

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Re: Dealing with my new AN diagnosis
« Reply #14 on: March 28, 2011, 01:44:49 pm »
Thank you for all of your insight! Thank you to all of you who recorded your experiences in blogs--I've read every word! I met with Drs. Mickey and Kutz last Friday. Came away with complete confidence in these amazingly gifted surgeons. In a weird turn of events, I had my first hearing test and the audiologist declared that my hearing is PERFECT on the right and the LEFT! Apparently, the tumor is messing with my word recognition so I just THOUGHT I was deaf! (Much like you Nicole, I've perfected the smile-and-nod:) So the neurotologist called me and said that now they want to explore the possibility of doing it retrosigmoid instead of translab. So, I'm getting a third MRI done tomorrow morning so they can try to see how far down the IAC the tumor is. Really struggling with intense fatigue right now...wondering if it's more mental than physical? My eye is starting to get dry sometimes...still producing tears, but sometimes have to "make" my eye water. Not really any questions, just comforting to "talk" to you guys:) Many blessings:)

Amanda