ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Skishortstuff on March 13, 2014, 07:35:51 pm
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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!
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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
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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
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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.
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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
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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
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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
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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!
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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 :)
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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
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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
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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!!!
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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 :)
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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
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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 :)
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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 ;)
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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
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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
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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
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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
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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
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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 :)
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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.
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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 :)
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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
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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