ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: loukan777 on May 24, 2014, 09:53:57 am
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My wife and I viewed her MRI 1.5 weeks ago, and it was traumatic for her. The AN is 2.5 cm, pressing on nerves 7, 9, 10, 11, brain stem and pons. ENT showed surprise at the size and location, and he said that it needed to be removed. We got a call yesterday that her consult at Mayo in Rochester with Dr. Michael Link will be this coming Thurs., 4/29. Again, the trauma for my wife, anticipating the horrible details of surgery and post-surgery - things she doesn't want to hear about. Biblically speaking, the spirit is willing, but the flesh is weak. She is clinging to the Lord, buoyed up by Kari Jobe's music, a Christian singer. Yet her body just reacts traumatically, emotionally and physically. Yesterday, a well-meaning friend had some materials for my wife that promoted a non-surgical approach to AN, something about tumor shrinkage. Several well-meaning friends tell her that it is no big deal, don't get uptight, don't worry. This is really a roller-coaster ride for my wife. We have a 21-year-old high functioning autistic son living with us, and that adds to the stress because the AN situation is so all-consuming. In many ways, our son brightens our day, yet he still takes our time. He shows his stress for our situation by giving hugs repeatedly throughout the day. I'm just airing some things. If you have some comments, I'd appreciate them. This forum has helped me a lot in support of my wife. The materials from ANA has been a blessing to me - my wife does not want to know the details I now know.
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The more you know about acoustic neuromas, the less frightening it will be so go online and empower yourself. Here are some resources that you may find useful:
http://www.myacoustic.org/
http://www.youtube.com/watch?v=ZbS4K9ENMAg
http://www.youtube.com/watch?v=6qtpk2352yo
http://www.youtube.com/watch?v=STXDdH0KC7I
http://www.cyberknife.com/patient-stories/all/suzanne.aspx
These are just a few sites but there are hundreds more. You Tube has many videos of patient experiences as well as treatment descriptions. Just do a search for Acoustic Neuroma.
One thing to keep in mind, however, is always get several professional opinions and be aware of the background of the physician/facility giving that opinion because in the medical profession, one tends to recommend what one is comfortable with and that may not necessarily be in the best interest of the patient. Scour the posts on this forum and take note of what treatment the posters chose and what side effects they had to endure as a consequence of their choice. This will guide you in selecting the best type of treatment for your wife. Of the three options available, Watch&Wait will not be feasible since 2.5 cm is too large to just monitor and do nothing. That leaves open surgery or radiosurgery.
Dr Steven Chang at Stanford Medical Center (probably the best CyberKnife treatment facility in the world based on their experience) has been known to provide free consults via email and phone after he reviews your MRI/CT scans. Dr Chang does both open surgery and radiosurgery. House Ear Institute in LA (HEI) also provides free reviews of scans but be aware that since they only do surgery, they will only recommend that approach. The hardest part of one's AN journey will probably be to choose the type of treatment to undergo. The important thing to keep in mind is this is brain surgery and you want someone with experience and lots of it treating your loved one.
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I have to echo the above reply.....I would highly recommend getting more than one opinion. Definitely take into consideration the experience of the team performing the procedure (whether you chose surgery or some form of radiation.) You want a team that performs these procedures on a regular basis. There are a number of places that will do a free phone consult if you send your MRI to them. Read the posts here and reach out to members with any questions/fears you may have. Most of us have been where you and your wife are today.
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Some further information. We live in SW WI and have been doctoring at Franciscan Skemp Mayo in La Crosse, WI for several years for medical concerns other than AN. My wife is 65 and she is in good health, other than the AN. She has had several sudden drops in hearing for the past 3.5 years, has had a change in taste for over a year, has had balance problems for about 6 months or more, and has sensed a change in facial muscles on the affected side.
Does anybody have experience with Dr. Link and Dr. Driscoll at Mayo in Rochester? According to Dr. Link's bio online, he has a specialty in AN. My neurosurgeon at FS sends any AN patients to Dr. Link.
Where do I go for other opinions? UW Hospitals in Madison? Marshfield Clinic? Chicago? California? And if I get other opinions, how do I decide on the best for my wife? I feel kind of heavy with this responsibility. Study, research, study, research, etc. Thank you for your input. I'm a little worn-out tonight.
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You can also consider Univ of Iowa and Dr Bruce Gantz at Iowa City. He does 70 or so AN's a year. I have NF2 and have had 3 tumors with 4 surgeries there. I live in central Iowa. He does more mid fossa to save hearing than Mayo does. That type will depend on tumor location,size and what hearing one has. it sounds like she may have had damage to the facial nerve from a facial neuroma or what the tumor is doing pressing on the facial nerve. I know Gantz has had many out of state patients. Iowa City has motels with hospital rates. It is a tough decision to know where is the best place to go. Dr Gantz has been my neurotologist since 2001. Cheryl R
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Today I am formulating questions for Dr. Link and Dr. Driscoll. My wife and I will meet with each of them for a half hour tomorrow, Thurs., and I have to be succinct in what I ask or say. Understandably, my wife is uptight. There are many people praying for us as we go for the consult and as we look towards potential surgery. The link to Dr. Yang's Q&A session was very helpful. If we are comfortable with the two Mayo doctors, we will not look towards consults at other medical facilities - more consults may be just confusing.
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Dear Loukan77 - If I was located in your vicinity I would have no problems with Mayo, a world class facility (my mother was treated there when I lived in the mid-west many years ago for another issue). I'm in the Pacific Northwest and had my AN surgery in Los Angeles at House. I also consulted face to face with Dr. Yang (UCLA) and House before my decisions (and with much prayer) at the end of 2013. Before visiting House my doctor-mailed me two medical papers, one he joint-authored and one from the Mayo Clinic (based on the paper I read and the fact that a House Doctor provided me a Mayo paper says alot too). That was a big help. The Dr. Yang video linked up by John is a good intro primer too but I thought getting different opinions didn't confuse me but helped cement my choice of what to do and where to go. Sure initially it is confusing, but it helped cement my decision. I really appreciated the 30 minute face to face consultation I had with Dr. Yang (he is amazing) too. Yeah its a hassle to travel but worth it. In the end I choose a different path based on my own personal preference and I don't regret getting other opinions. The more you become educated the better you will feel with the choice of treatment and the more positive you will all go into this. I know it's very traumatic. But I am very happy to tell you there is light at the end of this dark experience. I felt like I was brought low and then brought up high and although I don't wish an AN on anyone, I would never not have wanted to go through this experience just from what I have learned (about myself) and to have met compassionate people, like those on this list, and my wonderful doctors. Our best to you and your wife, who are in our thoughts and prayers.
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My wife and I went to Mayo in Rochester yesterday to meet with Drs. Link and Driscoll. My wife was very calm, cool and collected, considering the consult describing the surgery and the aftermath. We still have some questions about the surgery, even though we understand that Dr. Link is a top doc in acoustic neuroma surgery. I spoke with Dr. Gantz from Iowa this morning and he wants to schedule a consult next week.
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Hi,
I live in Wisconsin too - Central. I did meet with 2 surgeons at UW Madison and Dr. Steven Howard who is a
radiation oncologist at UW Madison. Dr. Howard is wonderful person and doctor, and he graduated from Harvard.
I'm 44 years old and in December I had 26 treatments of radiation with Dr. Howard. If your wife's
tumor is small, she may not have to go through surgery.
I heard nothing but the best about Dr. Gantz, and I believe he does more surgeries than Mayo.
I would love to tell you my story. Please send me personal message at:
SandyinWisconsin
Sandy
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I took ANA advice and went for a second opinion. 1 ENT doctor, 2 ENT surgeons, and 1 neurosurgeon say the tumor should be surgically removed. Then BOOM! Another neurosurgeon says the 2.8 cm AN could be wait-and-see, no rush, and recommends radiation if any treatment! I am sending off medical reports and MRI images to two neurosurgeons tomorrow for their input.
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I would discuss or get more opinions on both options as the tumor isn't going anywhere. If she chooses surgery make sure they are experienced at AN surgery and do multiple dozens per month and have done so for many years.
Mine was 2.2 x 2.2 x 2.3 cm and first doc said radiation was not an option while two others said yes it was. Volume and position play a part, so does having cysts within it, etc. I had only experienced hearing loss and tinnitus with no balance issues. Had my follow up MRI recently after 3 FSR LINAC radiation treatment 7 months ago and I did experience new recent symptoms (headaches/earache mostly) as the tumor swelled from the treatment. Tumor cell death (necrosis) causing the swelling which means success looks good.
While I empathize with her being newly diagnosed as seeing a tumor on the MRI screen scares the you know what out of you. This tumor is rarely a death sentence, but more of a lifestyle altering experience. God allows the rain to fall on the bad and the good. While this may feel more like a storm that won't quit at the moment, at some point I hope in hindsight it was just a rainy season.
God speed on your decisions and I pray she and you soon feel the peace that surpasses understanding about the whole thing.
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I fully appreciate your desire to educate and resolve. You--and your wife--want to address her (new) reality.
However, I encourage you to take your time. You do not need to make an immediate decision, and a slight delay in further educating yourself will likely have life-long consequences and results. Be at peace in knowing that you will eventually know what to do.
I would--at a minimum--have a consult with someone who does radiation treatment. Just to have that option fully presented to you. Then, you can make a decision about surgery or radiation.
Dr. Link has a solid reputation. But you will learn that surgeons recommend surgery. Radiation folks recommend radiation. If the AN is compressing the brain stem then W & W likely isn't a long-term solution, but you have some breathing room for now to pray, listen to your heart and head, discern, and listen. Listen to each other. You will know what to do.
Peace--
Patrick
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If radiosurgery has so few negative post-treatment effects in comparison to microsurgery removal of the tumor, why aren't more people going that route? Is a 2.8 cm tumor too large to radiate? Treatment seems to be on the extreme opposite of each other, and ne'er do the twain meet, radiation vs. surgery.
Loukan777
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Recommend you list the pros and cons for each type of treatment for your particular case. Then you/wide decide. Not the doctors. You do the research and find peace with the treatment that you feel most comfortable with after doing your research. Are you/wife the type of person who wants the tumor out and are in good health to under go surgery safely by experienced team who's done many? Then go that route. Are you comfortable with W&W based on the tumor size knowing that if it does grow it could cause other nerve damage (depending on your facial nerve position)? Or do you feel comfortable with radiation, leaving the tumor in place and trusting your research on the type of radiation your doctors are suggesting? Have you asked each team what their track record is? Any papers they have published? What are their statistics of patient care and knowledge of complications? I made my decision on what was consistent with my thinking and what I felt was the best solution for me after medical input from ALL the differing opinions. My tumor was smaller than the one described and I elected surgery because in my case there was a chance for hearing conservation. But the doctors (who recommended W&W and radiation) told me no matter what I did said I would lose my hearing even if I elected surgery. Well they were wrong and I am glad for the decision I made. I'm just giving examples but it's YOUR body not the doctors and like any profession there are differing professional opinions; they are not Gods! And if any doctor you meet has a God like complex I would run from them and find a team you/wife feel really good about; ones you click with-That's my advice. Each form of treatment has pros and cons depending on the individual's situation and don't let anyone convince you of one treatment over another without knowing all your details and what you/wife want to do. It's your/wife life and when you find peace in your method of your treatment then you will have made the perfect decision. Our best to you! Keep us posted.
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If radiosurgery has so few negative post-treatment effects in comparison to microsurgery removal of the tumor, why aren't more people going that route? Is a 2.8 cm tumor too large to radiate? Treatment seems to be on the extreme opposite of each other, and ne'er do the twain meet, radiation vs. surgery.
Loukan777
It seems to me that every specialist is most likely to recommend treatment based on their own specialism - hardly surprising. The least biased one should be the specialist who works in both radiotherapy and surgery as he has less of an axe to grind.
Is 2.8mm too large? It depends....
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While at first it seems like the treatment decision reduces down to surgery vs. radiation, there seem to be a number of people who have had to have both in some combination over time. Unfortunately there is no 'quick fix' but, fortunately, there are many successful outcomes from the respective choices.
I now look at surgery and radiation as two different tools to ultimately accomplish the same goal, with the choices along the way being completely unique to each person's situation: age, size & location of tumor, symptoms, lifestyle, occupation, insurance, etc
knowing the reality exists that you may need the other at some point.
Which is why I think it's imperative that we stay well educated on all the different surgery and radiation procedures. It was overwhelming to me at first. I had to buy a bigger briefcase for my notes from all the different doctors with file folders on each category. We nicknamed it the 'football' with all it's classified information!
But the most important part of the decision process for me was to connect with a team of doctors who really understood me, and respected the research I had done, supported my decision and could provide the most professional, state of the art expertise and equipment. And I didn't feel that way with some of even the 'top' doctors in Boston.
I went for radiation at a smaller hospital in Massachusetts with a Doctor I really connected with, and I'm at peace with my decision...Finding peace through this whole ordeal is an ongoing challenge but certainly enlightening on many levels.
My prayers are with you and your wife during this hard time...
Ruthie
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I just thought I'd weigh in and try to offer some encouragement. I know this news must be still rocking your world, but I hope soon that you'll find a medical team with whom you feel comfortable and supported so that you can get on with taking care of this tumor.
For me, a local team of doctors has been a blessing. My tumor was good sized, 4 cm, and pressing on the brain stem. Because it was 1/2 cystic, surgery was really my only choice. Being able to come home to rest and recuperate and not have to maintain distant relationships with my team was just so helpful. Having my surgeon in the loop on after-care issues (and there always seem to be some) is invaluable. I just had my 1-year checkup and his knowledge, connections and support continue to comfort me.
I pray that you find a team that you can trust in the near future. Be encouraged that we live in an amazing time. Years ago, this diagnosis would have been a death sentence. Today, there are amazing resources for AN patients and their caregivers. (This site is one of them!)
Know that you are in our prayers.
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Thanks so much to all of you for your input. We almost went with our first consult and microsurgery. Thanks to you on the forums and the ANA site, we began contacting several doctors. As a result, we have decided to go with radio-surgery, most likely at UPMC Pittsburgh.
What last minute questions should I be asking? We plan to have a phone conference with either the doctor or an assistant tomorrow, Thursday, 6/19.
What should we do to prepare in the next few weeks?
Any advice would be appreciated.
Thanks. Loukan777
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I would suggest using this time to research the options in the radio-surgery field. The article in this month's AN newsletter by Dr. Chang at Stanford explains the options very well. While he prefers fractionated sterotactic radio surgery (FSR), I think his explanation of the overall field is very informative.
When I was doing my research on what type of radiation to choose, I found it amazing that doctors were willing to talk to me on the phone and share their opinions on the pros & cons of the different types of procedures and why they believed in one over the other, without having an appointment or knowing that I would ever be coming to see them. And while, it can be overwhelming to get so many opinions, the information is out there, so I wouldn't hesitate to make as many calls as possible to the experts in the field - even to places you'd probably not go to, just to see if they're on the same page as the doctors you're working with.
One concern I'd advise with choosing radiation is the plan to treat swelling. It seems that steroids are the stock answer, but they can have complications for many people. I just assumed steroids would be an easy answer without doing much research and ended up finding out I am not a candidate for taking them because of other health issues. So I'm trying natural supplements to reduce the inflammation. But just wanted to warn you, they act like steroids are a magic wand, but that may not be the case for everyone.
Wishing you peace in your decision-making process...
Ruthie
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What alternatives are there to steroids for swelling? Does one use 5-loxin or yarrow leaf or something else?
My wife is going in for GK radio-surgery at UPMC this coming Fri. We'll find out a lot in the consults and lab work on Thurs.
We are flying out on Wed. and returning on Mon., and I hope the flight will not affect my wife negatively.
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so sorry.... I didn't mean to sound so negative about steroids. They have helped many people. I was just annoyed that my consultations with doctors left me believing they were a quick fix, then when the Doctor I chose to work with, said none of his patients needed them...of course, made me feel like I'd be a failure if I did... so I was trying to 'tough it out' even though I did show swelling on the 6 month MRI. But then found out through blood work that I have high levels of cortisol, for other reasons, so I'm glad I didn't take them.
I've been working with a nutritionist to try to reduce inflammation naturally...lots of organic greens, fruits (especially pineapple & black cherry), omega 3's and fish oil.
And this is all long term...I had no immediate reaction to the radiation. And some people have no swelling at all.
It sounds like you are in good hands...I wish you only the best through this procedure and a safe journey, with the peace of mind that from here on, the healing can begin.
Ruthie
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As a UPMC "alum," I know you will be in good hands.
Let us know how everything went. Thinking of you both,
Patrick
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My wife had radiosurgery this morning. Thanks to all for your support, prayers, and encouragement. I'll post in the post-treatment - radiation forum about the experience. Loukan777