ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: CoachDJ on December 04, 2009, 07:22:46 am
Hello, Im in Little Rock Arkansas and trying to decide what to do. I have an Acoustic Neuroma. Talked to my Dr and he weighed out my options as far as surgery or radiation. I'm 38 yrs old and in really good shape. Can you guys help with your experiences of each. I know ultimately I have to decide but just wanted some background on both. My tumor is 1.1 to 1.2 cm.
From the information you give it would seem to me that you have all options. The size you list for your AN would indicate that you are a candidate for radiation therapy. Of course you could have surgery as well. Keep in mind that both have their pros and cons. I would suggest you consult with several doctors and get a few different perspectives. In the best case scenario for both: surgery has an immediate recovery period but once you recover that is it -- the tumor is out of your head; with radiation the immediate recovery is easier but you could have some after treatment symptoms due to swelling anywhere from 3 to 12 months after treatment -- but then the tumor is dead and never causes any more problems again. Of course this is the best case scenario and with both there are possibilities for complications. You need to evaluate the risks for each and decide which risks you are more comfortable living with.
I will say this, I, and many here on the forum, have found that making this decision is the most stressfull part of the journey and once this decision is made, much of the stress is relieved. I hope this helps and once again get as many consultations as possible. Many here have sent their MRI to the House Clinic in LA for a phone consultation. There is no obligation for this.
Hi, CoachDJ! Neal has given you great advice...I just want to welcome you and second what Neal said about the decision process being the toughest part of the whole AN journey. Yes, surgery is a bit tough ;), but the decision on what to do can be grueling. I also suggest you contact the ANA office, if you haven't already. They can send you information that can be very valuable to you. As Neal said, you can send your MRI to House for a free consult - it really does work. A doc will call you very quickly with an opinion.
You are "lucky" in that your tumor is a size that does give you the luxury, if you will, of treatment choice and time to make that choice in. Take a deep breath and take breaks from the research at times - it does help. There are many here who will help you along the way!
Neal and Cindy have already given you great thoughts. Just wanted to add that your symptoms, specifically your level of hearing now, are also a factor in the decision-making process. The exact location of your AN also potentially determines when and what type of treatment. Some ANs start growing very close to the brain stem, others much farther into the auditory canal ..... this can factor into the need for treatment sooner, rather than waiting and watching very long.
I also agree that this part of the AN journey is for many of us the most stressful part.
Keep posting and asking any and all questions.
Thanks for the replys, keep them coming. I appreciate all the insight. Please send me a contact # for the House Clinic, Thanks Neal
Here you go...
If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).
Send the MRI scans by express delivery (be sure that you are able to track the package) to:
House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057
You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:
Telephone: (213) 483-9930
FAX: (213) 484-5900
The docs are on a rotating type of thing, so you never know which one will call you...However, if you have a specific doc you would like to consult with, you can send it to his attention. Let us know if you have any other questions!
I'll jump on the bandwagon and welcome you to the forum and also to join the group that are telling you that it really depends on placement of your AN. I'd suggest visiting with several surgeons (preferably some that specialize in Retro, Translab and Middle Fossa approaches) and several radiation doctors (specifically those that do CyberKnife and GammaKnife types). One (or more) of these doctors are going to jump out at you as the doctor that you want doing the treatment.
Specifically, I'd ask them WHY they prefer treating it their way as opposed to another way. Comfort level with the doctor doing the treatment goes a LONG way in making the decision easier.
Others are right in the making this decision is in many ways harder on you that the treatment itself. I didn't have the luxury of deciding (or some would say I was blessed by not having to decide). With consultations from doctors, talking it over with loved ones about the upside and downside potential of each option and coming to a decision that is best for YOU given your situation is the winning combination in my mind.
Hi and welcome, DJ ;D
Looks like you've already gotten a lot of great advice. I was going to recommend getting the ANA's literature, but Cindy best me too it. Wonderful suggestion!
With an AN your size, surgery and radiation are both good options and the choice pretty much depends on YOU - once you've educated yourself about each treatment. Get all the info you need, talk to as many doctors as you feel you have to, weigh the pros and cons of each choice, and then jump in! You can also watch and wait for a time - if you are comfortable with that and if you aren't having any debilitating symptoms.
AN treatment is a very personal choice and we all made our decisions based on different factors. I almost choice radiation, but opted for surgery instead and am very happy with my choice. Those who chose radiation are generally equally as happy with their decision.
Regardless of what decision you make, we're here to help you in any way we can. Please don't hesitate to ask us anything!
I really appreciate all the info, I am about to pick up a CD of my MRI from the hospital. I will be sending it to the house clinic. Keep the info coming, you guys are the best
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
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 (because I had insurance) was that this was unique enough of a condition that it
warranted going where the expertise worked 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? I ended up making a char of the various treatments and outcomes by side effects. It is outdated now, but that helped me look at probability related to my information.
Ultimately I did select to be operated on at House Ear in LA because Middle Fossa surfaced as my preferred choice. Based on my data, it gave me the best chance for hearing preservation and facial nerve preservation both. In Illinois, the most used operating procedures were translab and retrosigmoid. I also went to House because many of the surgical procedures and tools were products of House research and doctors.
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" . http://anausa.org/forum/index.php?topic=9601.0
Hi, Coach ~
Please accept my welcome to the ANA discussion forums. I'm sorry you have to deal with an acoustic neuroma but I'm glad you found the website, decided to register and post your very apt question. All of the advice you've been given is solid and I have little to add except that, although we're not doctors, our membership has a wealth of practical information and our members are eager to offer it - and their support - in whatever choices you make. I trust you'll take advantage of the information available on the site and within the forums. Thanks for posting. :)
Let's see if there is room for one more post on page 1. I had Cyberknife for a 0.8 cm AN. It is easy to go through treatment, and you can get back to living a week later. It does take a while to get past the initial swelling (the AN gets angry about being zapped), but you can make it through. If you have good hearing going in, you have a good chance of having it afterwards, and little chance of facial nerve issues. If you have balance issues, though, radiation sometimes doesn't help those, which can be a problem.
See other posts for the surgery story. I think I made it. :)
Did someone say Arkansas?
Welcome to the ANA support forum. By coincidence I also happen to live in Arkansas...a bit more north and west of you (West Fork...just south of Fayetteville). I am also the Arkansas support group coordinator. We will be having our next meeting toward the end of January. We've been having them at the library in Conway and will probably continue to do so. I should be firming up the room reservation/date/time this next week.
In the meantime...feel free to call me PM (email on this site/forum) to obtain my contact info.
Again, welcome to the ANA forum and let me know if there is anything I can do to help. There already seems to be lots of good advice posted by all the other but sometimes it helps to be able to actually speak with a person... please feel free to call.
Thanks for the heads up Kay.... you're the best. Yes, rumors of my demise were much exaggerated. I just get slightly lost in the space/time continuum thing, meaning I look up one day and see that an inordinate amount of time has passed since I last came to chat.
..take care...tim b
Coach... I just looked at your profile and it seems to indicate you work in the Bryant School system.. Do you know Robin Stripling?
..take care... tim b
I really appreciate all the posts and info. I havent decided what to do but through you guys, my research & my doctors I feel like a decision will be made soon enough. I am meeting with my doctor & neurologist on DEc 17th to discuss my options. I feel better about surgery & possibly watching/waiting more so than the radiation.
Coach, I started my AN journey here in Texarkana, through Little Rock with Doctor Gardner, then to UTSW in Dallas, Texas where I had Gamma Knife 2 years ago. You are at the right place to learn from people that have walked a mile in your shoes. Take care and we are here to listen and support.