Author Topic: So glad this is here- feeling a little lost in ID- diagnosed 3cm on Mon-- help?!  (Read 10139 times)

Skishortstuff

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 Hi all!  :)I'm so relieved that I found this. I need a list of other AN specialists that will respond to me! I was referred to Dr. Bachous at Swedish Hospital in Seattle this past Monday for a large AN. They said they would get back to me yesterday and I kept calling today and I still didn't hear. My symptoms are really bad: vertigo, fatigue, I have terrible nerve pain that comes and goes in my right ear, etc, and I am so ready to get this taken care of. I did meet with the ENT that does it here, and he does it in tandem with a newer Neuro surgeon. My family is not excited that it's two doctors performing the surgery here in Boise, and they did a total of 2 in the last year. My AN is about 3cm, so I was told that surgery (it needs to be done soon according to the ENT because of the position on my vestibular nerve) is the only option.

 I went to ENT's (in the past), doctors, had sinus surgery, got tons of antibiotics, ear drops, etc all for what they thought was a "bad ear" with a "small ear canal". It wasn't until I had an audiologist test (I'm pretty much deaf now in that right ear)that he referred me to a PA that actually sent me in for an MRI on Monday. They called me an hour later with the results. I've been in total shock, unable to sleep ever since.


So I'd love to hear your story, advice, doc advice, anything at all.

 I'm going through waves of being OK and tears- is that normal? I'm active, have a great job, am 36 years old,have a small family: a husband who is freaking out, and a soon to be 8 year old boy who's just fine. I think my mom, who's a CCRN, is going to go with me to Seattle once we book a surgery date/ time but I'm open to other options as long as they takes Blue Cross . This doctor in town wants to hurry because of it's size, and where it's placed, and also because my symptoms have really gotten bad in the last year.

Thank you so so much for being here- I look forward to more discussion,advice, networking and support!
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Jim Scott

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Hi ~

I'm sorry you were diagnosed with an acoustic neuroma but glad you discovered the ANA website/discussion forums.

Your initial reactions (shock, tears, calm) are perfectly normal and pretty much what every AN patient experiences.  Just the word 'brain tumor', benign or not, tends to have that effect.  It did for me.  Your experience of symptoms being misdiagnosed are, unfortunately, quite common.  Mostly because ENT's focus on the ear and are slow (in most cases) to look beyond that with an MRI.  Now that you have a definitive diagnosis, you can move forward on treatment. 

I don't live anywhere near your location and have no information on the doctors you're consulting but I'm sure other members in your area will.

The fact that these physicians have minimal experience in AN surgery would give me pause but you'll know more after your consult.

The issue of haste is a two-edged sword.  One doesn't want to be 'rushed' into this serious surgery but if the tumor is growing, procrastination could make things more difficult.  Upon my (late) diagnosis of a large AN (4.5 cm) the experienced neurosurgeon I engaged was very anxious to operate but due to other issues, it was three weeks before I underwent my successful debulking surgery.  Immediately upon awakening from the anesthesia, my symptoms disappeared.  I trust you'll have a similar experience.

As you noted, we're here to discuss, advise and support.  Please don't hesitate to utilize the collective experience of our members.

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.

Skishortstuff

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Hi there Jim,
You are a "hero member"! Thank you so much for the support. I'm encouraged to hear that all of your symptoms improved after surgery. I'm feeling much more hopeful now. I'm still waiting on the doctor from Seattle to call me. I'm thinking of sending my records over to the House Clinic in LA. Has anyone used them before?
Thank you again,
Steph :D
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

LakeErie

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Even though your symptoms are bad, you should not rush a decision. There are, according to Harvard Med School, two factors that are most important in determining AN surgery outcomes.
One factor you have no control over, and that is tumor size. The other factor you have total control over, and that is the experience of the surgeon. Only so much is evident from imaging.
Surgeons cannot always predict accurately from a MRI what they will find when operating. Given the small area involved, and all the  blood vessels and vital nerves in that area, an experienced surgeon is less likely to be surprised by anything he/she finds that is out of the ordinary. How far are you from Stanford? They can give you a phone consult if you send them your MRI and Stanford does both surgery and CyberKnife. Stanford would be a start if you chose them. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Skishortstuff

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Hi Lake Erie,
Thank you so very much! I finally heard back from the doctor at Swedish in Seattle. He seems outstanding. I'm trying to coordinate with two surgeons offices right now, but they think I can get this done in two weeks. I'll definitely look into Stanford as well. Thanks so much for the advice. Did you have surgery there? I hope everyone on here is feeling well.
Have a wonderful Friday~!
Steph
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

leapyrtwins

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Even though your symptoms are bad, you should not rush a decision.

Excellent point, although most docs won't radiate an AN 3cm or larger, so surgery might be your only option. 

Don't know anything about Dr. Bachous (I'm in Illinois).  You should connect with Barb Shinn who leads the local ANA group in Seattle.  Search for her on the Forum - or if you have to, contact the ANA directly.

Dr. Chang @ Stanford is excellent - as are the docs @ House Ear Institute (HEI) - but there should really be no need to go to California for treatment unless you want to.

Good luck,

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

Echo

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Tears and fears are a perfectly normal reaction to go through. What you need to know is that it does get better.  You've found a wonderful group here to help you through the process and provide support.  Slow down and take a deep breath, then consider your options of which Dr.s to contact.  You will get excellent referrals from this group.  I agree entirely with Lake Erie - you want to find a surgeon with plenty of experience regarding AN's. 

Best of luck and welcome!
Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Skishortstuff

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This is perfect. Thank you so much. I did get in touch with Barb- she's amazing! It sounds like I'm going to Seattle in the next two weeks. I'll keep you all updated! Happy Friday!
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Jill Marie

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Hi Steph,  I'm from your neck of the woods as they say.  I had my surgery at Swedish Hospital, 22 years ago.  My doctors were Charles Mangham and James Raisis.  I read somewhere that Mangham is retiring or is retired.  The Internet said that Raisis is still with Swedish Hospital.  When I had my surgery Dr. Mangham was considered the best AN doctor in the NW.  As for Dr. Backous I'm sure someone recently mentioned possibly having him do there surgery, you might want to search this sight for others that have spoken with him.

I was your age when I had my surgery, went through the same feelings your are having now.  Hadn't been working as I was busy raising 2 young boys, went to work 3 years later and I'm still working at the same place.  You've hit a BIG bump in the road but the road will smooth back out.  Keep posting and asking questions, we will help you get through this!  Jill Marie :)   
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Skishortstuff

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Hi again--
Thank you all so much for the support. It truly means so much. I'm having surgery on April 1st at Swedish with Backous. The doctors here explained much worse outcomes. 50% chance of facial paralysis while Backous told me 10-15%. The consults were so different. Is that due to the experience level? How confusing?! Also the Boise docs said 1 week in the hospital and 2-3 out of work with possible SSD after?! The Seattle doc said 3 days in the hospital with a month out of work... How can they be do very different??

Jill Marie, are you in Boise? Did you fly back and forth to Seattle? What was your recovery like? Thank you so much for sharing some of your story with me.

I look forward to learning more from all of you,
Steph
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Jill Marie

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Hi Steph

I'm guessing that the Boise doctors wanted to try and prepare you for the worst case scenario of 50% paralysis rather then having you think it probably won't happen then be shocked if it did.  Would agree with your assumption that since they haven't done that many surgeries that there estimates of time in hospital and recovery are based on there limited experience.  I was in the hospital 5 days and wouldn't have been able to work for quite a while but my situation is much different than yours which I will explain later. 

I meant to tell you I live in Spokane, WA and did when I had my surgery.  My husband and I drove to Seattle.  I was suppose to have a consultation a couple of weeks before surgery but since I broke my leg and ankle a month before the surgery and had two boys to take care of we chose to have the consultation one day and the surgery the next day.  Keep in mind that my surgery was 22 years ago and lots of things have changed.  The drive home was long but I did ok, had a can or two of 7-up in my lap all the way to help with the nausea issue of riding in the car.  I didn't have to go back to Seattle after that.   

My recovery was a lot different then yours will be as my tumor was a Facial Nerve tumor not a hearing nerve tumor my doctor in Spokane diagnosed.  Dr. Mangham could tell by looking at me and looking at the MRI that it was a Facial Nerve tumor.  I had facial paralysis because they had to cut the nerve.  AN patients sometimes have paralysis that last a short while then recover just fine, there are so many variables that you nor the doctors will know tell it's all said and done.  Just keep focused on you and your family and know that in the end you will be ok. 

Since your having surgery soon, might I suggest something to help you while your in the hospital.  My sister said it would be nice to have a stuffed animal to hold so I told my husband just before surgery that I wanted a stuffed animal in my arms when I woke up.  I had 3, a lamb, bunny rabbit and panda, hugged them when I needed a hug! 

Keep in touch, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Skishortstuff

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Hi again:),
Wow- what an ordeal you had! How's your facial nerve now? I hope that you are well:).

I've been noticing more symptoms post diagnoses. A few being that I only really have bad vertigo in the dark and my right cheek is numb. Also I fell down a flight of stairs last year because I was headed to yoga in the dark and I walked right off these steep stairs that I knew quite well. I then went through 8 months of PT. I have amazing balance (due to hard work at yoga and I'm an ex ski racer) but I can no longer balance when it's dark or when I close my eyes... Will it ever return? I'm also becoming sort of sea sick on rides up to the ski hill in the car- this has never happened to me before.

Thanks for the hospital suggestion! Are there any other things that I need?
Thanks again everyone!!!
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Hokiegal

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The balance outcome varies.  However I think your experience in yoga and skiing will definitely be to your advantage should you experience balance issues post-op.  I am one of those whose outcome did include long-term balance issues, so after I was discharged from PT, I started Pilates and have continued since (2+ years now), and it has helped me greatly.  While my vestibular deficit is likely permanent at this point, improving my core strength has helped me compensate.  So I think your being physically fit going into surgery is definitely a positive. 

Stay encouraged, and let us know how you are doing :)

3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

Jill Marie

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Hi Steph,

I had a nerve graft during my surgery so once the nerve healed my face looked normal.  My eye doesn't tear but thanks to a new contact lens that was developed for those in the military that had way worse problems then I did that isn't an issue anymore.  I'm doing really well, medical issues aren't a problem, just dealing with growing older, ha, ha!

I agree with Hokiegal on the balance issue.  When I had my surgery no one mentioned the balance problems to me at all or perhaps I don't recall because I was focused on my facial issues.  Anyway, I remember grocery shopping with my husband for the first time after my surgery and couldn't understand why bending over to read the prices made me feel funny and couldn't read the price on the shelf.  Every time we went shopping things got better tell I no longer had any problems.  About a year after my surgery I wanted so badly to go somewhere without having to ask someone to drive me that I got on my bike and rode to the store.  I wobbled on the bike a bit, some of the wobble came from fear, some came from balance issues & some came from not riding for a few years.  The more I rode the better I got at it, the fear was replaced by confidence and trial and error brought on by riding time and time again.  Have you heard of The Trails of the Coeur d' Alene?  It's a biking/walking path that is about 70 miles long and goes from Mullan ID to Plummer Id.  A few years ago my husband and I started riding it while we were on vacation.  After about 3 vacations we have ridden all of it TWICE!  One day we rode 40 miles, when I first started riding I would have never dreamed that possible. 

What I'm trying to say is, please try not to worry about what you can't do now and what you may or may not be able to do after surgery as things will change, you just have to be patient, it's hard to do but you can do it. 

Right now I can't think of any other suggestions for the hospital but if I do I'll let you know.

Jill Marie
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Skishortstuff

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Hi everyone!
Thanks again for listening and responding to me. It's so informative and is a nice support and distraction from work and from getting caught up in my own head as I tend to do when I worry.

Jill Marie, thanks so much for telling me a little of your story! Sounds like you've really compensated, but when all was said and done you're just fine. I'm so glad. Yes, I do know that 70 mile bike ride- that's on my bucket list! Maybe that should be something to put my sights on post surgery.

I'm starting to understand that everyone's situation is just so very different. My story will be my story and it's OK. I'm also coming to terms with all of this. It could be worse right? At least they finally found it, right? I'm trying to maintain this attitude as I'm approaching my last ten days with this tumor in my head.

I guess at this point I just need surgeon questions and hospital pointers. Although, the ASA sent me some great literature with some of that info. I may even meet Barb, who's the leader of the ANA support group in Seattle, after my husband and I arrive there. So, if nothing else, I'm making new friends and you all are so gracious and kind.

I've been going to yoga and on hikes to keep my strength up pre-surgery. I've also been way more symptomatic since the diagnosis which may sound weird, but maybe I'm just noticing them now. My ear rings really loudly and at all different tones at different times of day. I have nearly unbearable nerve pain behind my ear and sort of a dull headache back there from time to time. Some of the time, my cheek and chin tingle and go numb, same with part of my tongue. My balance is really tippy on just one side in yoga and if I close my eyes- game over...So maybe, post surgery some of these things will improve?

Thanks again all of you and write anytime! I love hearing from you,
Steph :)
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

 


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