Author Topic: So glad this is here- feeling a little lost in ID- diagnosed 3cm on Mon-- help?!  (Read 10141 times)

Jill Marie

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Hi Steph,

Glad to hear that the Trails of the Coeur d' Alene is on your bucket list, perhaps we will meet you out there after your surgery as we plan on riding it again because we enjoyed it so much.  When you get to that point feel free to pm me with any questions you have about the trail.  Great goal to have in mind before surgery, you'll get there! 

You are so right in keeping the mindset that it could be worse and lucky you found it now as the bigger they get the harder the recovery.  It's also alright to wonder why me, why now, we all have!  The yoga and hikes will definitely help your body prepare for the surgery and as you well know it certainly helps you deal with the stress of what you're going through. 

So sorry to hear you are having so much pain, glad you're having the surgery so soon so you can start feeling better.  As you said, everyone's journey is different, some feel better right after surgery and for some it takes a few days or weeks.  Other than the loss of hearing in my left ear which didn't really bother me I felt fine before surgery, after surgery not so good for a while.  Since you don't feel good now one can only figure that you will feel better after surgery.  The healing process requires lots of patience which is often hard to find.  The upside of course is that the surgery will be done and things will start looking up from there. 

I was thinking perhaps you might want to start a new post with a subject asking for information on surgeon questions and hospital pointers so it would catch the attention of those that have had surgery in the last couple of years and would have advise for you.  I'm sure it helps to have information from the ASA but the personal touch from those that have actually gone through the surgery is priceless.

If possible could someone in your family post here after your surgery so we know how you are doing?

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

TwistedSissta

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Hi Steph. I am so glad I saw your post. I am here in the Treasure Valley, Idaho also and was just told on 3/27 that they found an acoustic neuroma on my MRI. I am completely lost, don't meet with the Doctors at SWIENT until Friday to really get an understanding for what I'm dealing with. It is frightening that it sounds like the ENT's here don't have a lot of experience dealing with this so I will be looking for option for second, third opinions too. Thank you so much for posting. Best wishes for you with your surgery. I will be following to see how you are doing and hope you can give me any suggestions for dealing with this from here in Idaho. I have family in CA and I saw that there is an "acoustic neuroma program" at UCLA. I really have no idea as yet what will be the next move at this point. I am seeing Dr. Van De Graaf in Boise.

Eager to learn more!

Trista
Dx: 3/27/14
Size: 10mm
Hearing loss, unsteady, facial tingling, tongue pain
How do you make the right decision without knowing the end results? This sucks & I'm scared.

Hokiegal

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Best of luck with your surgery tomorrow.  We'll be thinking of you!  If possible, please have someone post an update.  Hugs and prayers from South Carolina

Mary
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

rodneyd

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Hi Steph,

Tomorrow is your surgery, and I wanted to wish you all the best for a great outcome!  You have far more serious symptoms than I, and it sounds like surgery is really your only option.

You did ask how various doctors could come up with different estimates of hospitalization.  I think the answer is varies so much because it depends on what type of surgery you have, how invasive it is, what nerves are involved and how much trauma your brain suffers as the surgeon does his incredibly detailed work.

I live north of Seattle and have a .9 cm AN in my left ear.  Diagnosed last October with an MRI, after I complained of imbalance issues and some tinnitus.  Like you, I was confused and didn't know what to do, but the neurologist I consulted referred me to either Swedish or the University of Washington (they are both considered regional centers for the treatment of this tumor, which is really important as they have a lot of experience dealing with them).  I called Swedish and was told Dr. Backous was the head of the AN department and would be the one to see.

However, before I made an appointment, I called my son-in-law's brother who is a surgeon in Massachusetts and asked him for any suggestions as to what neurosurgeon that he would recommend.  I purposely didn't tell him about any that I had contacted.  He did some research and came back with two names, Dr. Backous and another Doctor at the U of W.  So I checked his credentials (and found that he was on a list of  doctors that other Seattle doctors would go to if they needed skull surgery). 

My wife and I met with Dr. Backous in November and were very impressed with him.  He spent about 45 minutes going over my MRI and discussing my options.  My AN is only .9 cm and my main symptoms were lack of balance, which is especially pronounced when I bend forward or try to walk backward.  My first reaction was to have surgery to "get that rascal out of my brain" and we scheduled surgery in early January, 2014. 

However, in the interim, we attended a meeting of the local AN support group (Barb Shinn) and met some fantastic people, which made me feel like I wasn't alone.  Eventually, I decided to forgo surgery and go with the radiation treatments.  After further consideration, I have now moved into the Watch and Wait category.

There was another AN support group meeting yesterday at Barb Shinn's residence, where we all provided saliva samples as part of the Yale study on AN.  I believe it is far more prevalent than the 1 in 100,000 figure I keep hearing, but I think a lot of people just never have it diagnosed, so maybe the study will help with a statistical analysis.

Please try to keep us informed about your surgery results and aftermath.  There is a great deal of support and interest about people that are going through the trials and tribulations of surgery, radiation treatment or just W & W on this discussion forum.  They are very caring and understanding about the fear and confusion surrounding this condition. 

Good luck tomorrow, and know that there are people who care and are praying for your successful surgery and total recovery. 

Rod 
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

Skishortstuff

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Hi guys! My husband will keep posting tomorrow and update all of you. I'm in Seattle looking out on this beautiful day! My Rainer is beautiful today. I'm consulting with both docs today: Dr. Bachous and Dr. Delashaw. I'm feeling I made the right choice and ready to get tomorrow over and done with.
 
Trista, we can talk after I get home. Just read all you can, don't let YouTube freak you out like I did, and exercise all options. I've got lots of friends in Seattle, so this was a good choice for me.

Rod, thank you so much for that info and I'm going to get to meet Barbara today!

It's so comforting knowing we aren't alone in this. OK- going into Dr. Bachous office right now:)
Talk soon,
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

rodneyd

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Hi Trista,

Sorry to hear about your recent AN diagnosis.  I know it is a real shock when you find out you have a brain tumor!

Can you tell me the size of the tumor and any symptoms you have experienced?  The size of the tumor isn't always a predictor of the symptoms, as the AN location and what nerves are being impacted (balance, auditory, facial) that are most important.

Maybe it would help you if I gave you a quick rundown of my AN experience.  I live about an hour North of Seattle and was diagnosed with an AN on an MRI in October, 2013 after experiencing some imbalance and mild tinnitus.  I had noticed these for several years but had just never had it checked out until it got to be more noticeable.  My hearing in both ears had declined at the high frequency end, but was still quite good as far as word recognition was concerned.

The AN is in my left ear bony canal, and is .9 cm.  The neurologist recommended I contact a regional AN center (either Swedish Medical Center or the U of Washington Medical Center) since they deal with many more of this relatively rare tumor than other medical facilities.  I checked and Doctor Doug Backous at Swedish headed up their AN group so my wife and I set up an appointment and we met with him (I was one of three AN patients that day).  He was very professional, outlined our options (microsurgery, radiation therapy or Watch and Wait) and I was ready to have surgery to "get that rascal out" and set up the surgery for early January, 2014.
 
After the appointment, we had an opportunity to meet with an ANA Support Group headed up by Barb Shinn.  She has been on Watch and Wait for over 4 years.  The rest of the people attending the meeting were post op.  Several of them suggested I might want to consider radiation therapy as an alternative, so we set up a meeting with Dr. Vermeulen at Swedish.  She is a fantastic doctor, very friendly and knowledgeable, and is in charge of both radiation therapy machines (Gamma Knife and Cyber Knife) at Swedish.  She met with us for 2 1/2 hours and we decided to go with the CK route, rather than have microsurgery.
     
Later, in preparation for having the radiation therapy, I had another MRI which showed the tumor had not grown at all in the last three months. 

One of the side effects of the radiation would be a loss of hearing in my AN ear within 2 - 6 months.  The reason being that even though the radiation is tightly targeted, it would affect the cilia in the cochlea which was in close proximity to the AN.
 
So, I asked myself a key question; as a 70 year old man who can still hear reasonably well, why would I take a treatment that would make me deaf in my AN ear if the symptoms weren't that bad and I could still function at a fairly high level?  (my wife and I square dance 3 - 4 times per week and I think the loss of hearing would affect my ability to dance properly).  The answer I came up with was that "I shouldn't" so I moved myself into the W & W category.

So where do you go from here?  Some thoughts include finding out as much as you can about the AN.

Join the ANA (they will send you several well written and understandable pamphlets about AN's and some options).

Consider a regional center that deals with substantial numbers of AN's (Swedish or the U of W, House in LA, Stanford Medical Center, University of Pittsburgh, Mayo clinic, etc.) and do some research about them as well as the doctors at the centers. 

One thing to be concerned about is the insurance - will they cover the costs? (which will be substantial, unless you are on W & W). 

Another consideration may be the travel.  Are you comfortable flying or driving? 

Depending on your situation, become an AN "expert" and take the time to investigate your options and be as objective as you can about it.  AN's are normally slow-growing (about 10% increase per year is "normal") so symptoms may not increase much over several months and this will give you some time to consider the options carefully.  In my case, the doctors presented the options, but did not give me any guidance, so it was up to me to make the decision.  I think that was one of the factors in my "waffling" about the treatment path I was going to undergo.   

I know that Idaho does not have an AN support group, but Barb Shinn is a friendly and knowledgeable lady who would be able to discuss your options.  She can be reached at 425-771-2105 or via email at bsw909@comcast.net.

Good luck to you, and hope to hear back from you soon,

Rod 
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

Jill Marie

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Hi Steph,

So glad to hear that your husband will be posting for you, will be anxiously waiting to hear how you are doing as will many others here.  Wonderful to hear that your are ready for the surgery and confidant of your choice.

As it's late I realize you won't read this tell after your surgery, we will be here to help you through the next stage!  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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Hello everyone,
This is Stephanie's husband Benson posting an update. Her surgery went well. They were able to get it all, her facial nerve looks great and they are closing her up now.
I want to thank you all for the positive thoughts and support.
I will continue to post updates on her recovery until she can do so herself.
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 Benson,  Thanks so much for posting so soon, glad the news is good.  Look forward to hearing more about how Steph is doing and of course looking forward to reading her posts when she feels up to doing so again. Thanks Jill :)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Hokiegal

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Hi Benson, thanks so much for the update!  Glad to hear the surgery went well!  My husband was just asking about Steph as I walked in the door.  Please keep us posted, and all the best to you all,

Mary
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

rodneyd

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Hi Benson,

Wonderful news!!  Hope she is doing fine in recovery and the ICU.  Good luck and thanks for posting in her stead.  We care!

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

 


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