ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: patdel on August 27, 2009, 07:01:19 pm
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Hi, I was diagnosed with AN in June. At that time, the dr. recommended surgery. In August I had a second opinion and surgery was his first choice(he is a neurosurgeon) but also said radiation was an option. The first dr. didn't feel radiation was a good idea. My AN is 9mm. I am in the Watch and Wait mode right now, more to buy time and do some research. Totally confused as to what to do. I am grateful for finding this web site and reading all the comments and knowing I am not alone in my confusion. I am open to suggestions. HELP!
pat
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Hi Pat - welcome to the "club" that no one wants to be a member of ::) It's a great group and I'm sure you'll get lots of info.
I've been in "wait and watch" for 7-1/2 years with only 3 mm of growth in that time. A lot of people may have trouble waiting with this "thing" in their head; others (like myself) can handle it - geez some days I even forget it's there.
Do you have any symptoms? Are they bothersome? Age can sometimes be a factor in your decision making along with any other underlying health issues. Most important - you do not mention a follow-up MRI - one (with contrast) should definitely be scheduled for the future. Since this was just discovered perhaps one in six months and then spread out. In my case, I had a follow-up in six months, then each year. I've recently gone to every two years but everyone is different and each doctor has their own criteria.
Just remember - this is not an emergency and it will be a "roller coaster" ride but you have time on your side to do your research.
Keep us posted,
Sheryl
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Pat -
we're a wonderful resource for AN patients, but if you haven't already, please contact the ANA and ask for their informational brochures - they are a great resource too.
An AN the size of yours generally gives you the option of surgery or radiation, but the location may have some bearing on this.
Sometimes patients consult with doctors who only do one procedure or the other so they might not get both sides of the picture. Therefore, I would recommend that you consult with either a doctor who treats ANs with radiation (since you've already gotten a surgical opinion) or a doctor who treats ANs with both surgery and radiation - that way you'll get a more well-rounded opinion.
My neurotologist does both radiation and surgery so he was able to give me both sides of the picture and let me make my own decision. I ultimately chose surgery because it was the best choice for me - but you never know, radiation may turn out to be the best choice for you. AN treatment decisions, if you are lucky enough have them, are very personal (and difficult) decisions to make. You should do what is best for you - after you've explored all your options.
Best,
Jan
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I am in wait and see also, but it is driving me crazy. I am the type that does not like the unknown. If there is a problem lets fix it. Although my AN is only 5mm which I understand is fairly small it is driving me nuts to know that it is there. (I am experiencing some small side effects, nothing serious) I go in for my next MRI in Sept and will be taking about the way I feel with it there.
TJ
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Welcome to both Pat and TJ ......
As you can see by the responses so far, each of us has a unique story to tell about our journey through diagnosis of an AN to treatment. It would have been oh so much easier if there had been only one or two choices but much depends upon the size and location of your AN, your symptoms and/or progression of your symptoms, your age, your overall general health, and most importantly your own comfort level in each treatment option.
I would urge you both to continue to research your treatment options, listen to your body by monitoring your symptoms, and then consult with the best medical professionals you can find, whether it is wait and watch, radiation, or microsurgery.
Best thoughts .....
Clarice
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Hi Pat,
Welcome to the Forum - but sorry, too that you had to join this crazy club ::) .
I have 'officially' been in Watch & Wait for almost a year, but also more than 12+ years because of misdiagnosis.
My AN is about the same size as yours, but so far i have minimal symptoms.
You have plenty of time to research, being mindful that if symptoms escalate at any time, then that is a good time to go back to see the docs.
So - research, research, research - and then if you need to take a break, that is ok too.
Post your questions. Even though we are not doctors, we are here to help.
This is a FANTASTIC group of folks, as you have already discovered!
My thoughts and prayers are with you and your family.
Sincerely,
Sue
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Hi Pat and welcome to the forum
My ENT told me this: with surgery the tumor is removed. With radiation, its growths is abatted but remains inside. He told me to build my decision on this. I opt for surgery.
JO
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Hi Pat! Fortunately you AN is very small. You do seem to have the luxury of W+W and at the same time getting all your research done. With this you can come to your own educated conclusions. In the interim please don`t get yourself in a panic because whatever your choice modern technology has come a long way into giving you great results. One of the things we have learned is that monitoring your AN is essential. If their is no grwth and minmal symptoms I personally won`t intervine. This is my case, but we are all different. Best wishes, Mickey
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Hi Pat,
Welcome to the forum. I am also W & W, 6 months coming in in Sep. 09. I am a little nervous and curious at the same time as to what this thing is doing inside. Everyone has already given you some great advice. Here in Canada, doctors are a little bit more conservative when it comes to surgeries. They feel unless absolutely necessary why not choose other options if you have them such as radiation. Myself, I have issues with both treatments. Neither seem to be ideal. Buy hey, at least there is a treatment! Hang in there, your decision will change from day to day until you become comfortable with the whole idea and journey. At least you are not alone. Remember to take deep breaths when it becomes too much. There are many of us in the same boat. Can't tell you how glad I am that my daughter found me this forum. I didn't even know it existed.
Vivian
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I am scheduled for a follow up MRI in january. I am in good health right now but I am 62. So, do I fall into the "elderly" catagory where the growth can stop growing?? I don't FEEL old and am very active but I do hope the growth has slowed or stopped. I discovered the AN completely by a fluke! Had a hearing test to show my husband I didn't have hearing loss!! Alas, I do have hearing loss but minimal and I have tinnitus about 2 yrs now. No other symptoms so it's hard to choose a treatment when I don't even feel sick. I've lived with the ringing in my ear for two years so can handle that. But, just knowing something is growing inside my head is troubling. We'll see what january brings.....
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Pat ....
I replied to your PM, but I have not heard back from you. Let me know again if you have other questions.
Clarice
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Hi, Pat - and a slightly tardy welcome.
I'm sorry you have to deal with an acoustic neuroma diagnosis but, like everyone who posted ahead of me, I'm glad you found the ANA website and decided to join us on the forums.
As for age: I was a year older than you when I received my AN diagnosis, following some severe symptoms and an MRI scan (with contrast) that showed a large (4.5 cm) AN. The neurosurgeon I chose recommended a surgical debulking procedure, i.e. a partial resection of the tumor to cut off it's blood supply and render it small enough to safely radiate. 3 months later, I underwent 26 FSR treatments to destroy the tumor's DNA and, in effect, 'kill' the thing. So far, so good. My next MRI is due soon and I trust the AN has continued to show necrosis (cell death) and shrinkage. At the time of my diagnosis, my doctor commented that the tumor had likely been 'in there' (growing) for 10 to 15 years. However, I wouldn't count on your age offering any kind of assurance that the tumor will stop growing, although, of course, that could happen. If you have no symptoms at this point, that's a very good sign. Other than a very gradual unilateral hearing loss I had zero symptoms until about six months prior to my diagnosis. In that six month period, I developed an intermittent stabbing pain at the AN site, complete loss of the sense of taste (and a very diminished appetite followed by a 30+ pound weight loss) as well as a fairly rapid onset of impaired balance and severe fatigue. The point being that you can carry this benign tumor in your head for a long time, completely unaware, and suddenly, it manifests itself with unpleasant symptoms, as mine did.
You seem to be comfortable with observation (watch-and-wait) at this point so, as you stated, we'll see what the next MRI brings - hopefully, no growth.
Jim
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Hi Pat I have been waiting for 2 yrs to decide how to get rid of my 2cm tumor and have done much research but so far am unable to decide a course of treatment. My Doctor at MGh Doc McKenna has much experiance with AN and has been great. I wish he or someone would tell me what is best but I guess it is up to us to decide and this is not easy. We are not alone but our decisions can only be made by ourselves.
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Hi Pat,
Welcome to the forum. You are doing the right thing by going out and trying
to find information before making a commitment to a treatment. As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching. It ends up being an individual
decision.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases. That
statement circles back to the paradigm shift.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise works even if it was outside of my local
area. I looked for patterns in the posts on the listserv (before this format it was a listserv) related to
treatments and doctors. The listservs and guest books provided great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how the member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data?
That caused me to put together a chart in which I listed the data.I wanted to know
the data related to hearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
I also put myself through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/
Kindest Regards,
Kate
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Thank you all for the words of encouragement. It's a tough decision to make; consequences no matter which way you go. Thanks Kate B for the info. Very helpful. I will definitely research some more and hopefully, not obsess too much over it. One day I think surgery, the next radiation. I am complying questions to ask the Dr. to try to help me decide if this thing decides to continue to grow.
Pat
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Thank you all for the words of encouragement. It's a tough decision to make; consequences no matter which way you go. Thanks Kate B for the info. Very helpful. I will definitely research some more and hopefully, not obsess too much over it. One day I think surgery, the next radiation. I am complying questions to ask the Dr. to try to help me decide if this thing decides to continue to grow.
Pat
Pat..I remember that lost in the vast ocean feeling.
Hey, here is a link to a list of questions that may help you.
http://anausa.org/forum/index.php?topic=53.msg266#msg266
Kate
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Pat,
I too am trying to decide what treatment option is best for tumor #2. It is such a hard decidion to make. After much research and knowing quite a bit from round 1, I am leaving the decision up to a higher power. In my gut I think I know I need to do the surgery again, but waiting for my confirmation before proceeding.
Best of luck to you. It is not a good place to be, but you will draw strength and knowledge from this great group of people on this forum.
hang in there
patti ut
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My husband was diagnosed with a NA on Halloween of 2003. At the time, we havd a 2yr old son and I was very pregnant with my second son. I can't remember the size of his tumor anymore but it was fairly large and he had to do something about it sooner than later. it took us a month to gather as much info as we could and to "interview" doctors and decide which treatment was best for him. As soon as we found Dr Stieg and Dr. Selesnick we knew what we had to do. His first surgery was 2 weeks before Christimas. He is now deaf in one year, but all went well until he began a CSF leak 3 days afterwards. Unfortunately, he was hospitalized about 7 times aftewards - 6 for additional surgeries to stop the leak -- consisting of using his own fat, cadaver bone, and pig bone. it was just one of the adverse events that could not be helped. Glad to say that 5 years later, he goes for his bi-yearly check-ups and all is well (knock on wood). As a family member of someone going thru this, I can honestly say it was the worst thing I had ever been thru up to that point.....and without family and Dr Stieg and Dr. Selesnick I never would have made it. If you are even considering surgery - go meet with them - they are wonderful.
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I'm back again. Took a break for a few weeks. Was getting so confused and had so much to think about, I needed time off. I've been reading that people suggest we consult several drs. How does one go about finding a dr. who has expertise in ANs? I do have a well known neurosurgeon and the ENT also has been mentioned here but I would like to look into radiation therapy. How do I find out about that? Should I call my ENT and ask for names, call the neurosurgeon? I want to reseach all my options but not sure how to start.
Thanks.
Pat
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Hi, Pat. Good to see you again. Being diagnosed with an AN is overwhelming enough and then there's the treatment decision - not an easy decision at all. Taking a break can be a very good idea.
There is a section on the main page of this website that lists doctors who treat ANs. They are not doctors endorsed by the ANA, but rather doctors who have chosen to "advertise" on this site.
Also, if you will tell us where you are from (what city or state) someone on the Forum may be able to recommend a doctor or doctors in your area. I have a wonderful neurotologist who does both surgery and radiation (GK), but he's in Illinois and that might not work for you.
Jan
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You sound story sounds alot like mine although my neuroma is larger at 2cm. I am also 62 and very active, found my neuroma after being a little frustrated with my hearing in one ear - have had the ringing for a couple of years and it really doesn't bother me. I live in MN and had a couple of good options for treatment and both were slightly biased toward surgery but thought that radiation was a good option. I've spent alot of time on this forum although it took me a long time to actually ask any questions and I too needed to take breaks from it because it is overwhelming. After alot of research, I have scheduled Gamma Knife at the University of Pittsburgh in a couple of weeks. We did send my cd's out there and did a phone consultation. Both decisions were hard, surgery or radiation and then with either, where to have it done. We went with Pittsburgh because they actually trained the doctors at Mayo and they seem to have the most experience. Good luck with your decision.
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I live in Cary NC so I know I am in a good place for surgery. Duke is right next door practically. My neutrologist works with Dr. Fukishma and so does the neurosurgeon I saw. I was just wondering about the radiation part. Guess I will have to call both of them to see if they do both or recommend someone who does.
It's heartening to read the post treatment forum. have to decide if I want it gone completely or can I live with it being "dead" inside my head??? Don't know yet.
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Pat .....
You have touched on an important part of the decision-making process ..... whether to use radiation to arrest the growth of the tumor or surgery to remove it. Part of the decision rests on exactly where the tumor started growing, not just the actual size. Also the symptoms you are experiencing and whether or not they are changing, especially of they are getting worse and how fast.
I, for one, did not really have the option of radiation, partly because of the size, but more importantly the speed with which it was growing. I am not sure I would have been able to psychologically deal with leaving it in my head, even if I had been given that option. But, that is a personal thing ..... no one should try to sway you towards either way. As you can read on this Forum, there are many success stories for both radiation and surgery. After you know all of the facts, you need to do what feels right for you.
Thoughts and prayers. Keep us posted!
Clarice
P.S. Pittsburgh has an excellent reputation for success with gamma knife.
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Hi, I was diagnosed with AN in June. At that time, the dr. recommended surgery. In August I had a second opinion and surgery was his first choice(he is a neurosurgeon) but also said radiation was an option. The first dr. didn't feel radiation was a good idea. My AN is 9mm. I am in the Watch and Wait mode right now, more to buy time and do some research. Totally confused as to what to do. I am grateful for finding this web site and reading all the comments and knowing I am not alone in my confusion. I am open to suggestions. HELP!
pat
I didn't even know i had the damn thing for at least ten years or more. they grow slow, relax you got time. Mine was the size of a pancake when I finally got a MRI, got some good Dr's. they scraped it out 12 hrs surgery. now i have to watch and wait I am am 50 yrs old now i will probably be dead before it gets big again. If
so I'll zap it with some radiation.
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As big as a pancake??!! :o
We're talking a very small pancake, right?
Jan