ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: anna70 on August 17, 2007, 11:16:26 am
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Hello, I have been reading this forum for a few days and registered. I hope family members of AN are allowed. If not, let me know. My husband was diagnosed last month. We were told it is 2 cm but the radiiologist says its closer to 2.5
He is 35. Hearing is very poor in the right ear and his balance could be described as a bit clumsy which we found out is from the AN.
We are going back and forth between surgery/radiation. Are radiation results typically good for a tumor his size? Is surgery a better choice?
We are going to see a neurosurgeon on Tuesday not affliliated with the ENT and radiologist that we have seen for another opinion. The ENT is pushing for surgery and we are just not sure. It seems risky. The ENT says that surgery is preferred for the size and his age.
I know only my husband can make this choice but I sure want the best outcome for him and I was hoping to get some opinions from people who have been there, done that or are going through the same thing.
Thanks
Anna
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Anna,
Family members are certainly welcome on this forum. Like all of us, when you or a familt member receive an AN diagnosis you have lots of guestions. Keep reading forum posts, you'll find a lot of infomation about the various choices for treatment or "watch-and-wait".
Regards,
Rob
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Anna, I am 65 now. I had surgery at age 63 for my 2cm AN.
Family members can learn a great deal here. Welcome.
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Welcome!! ;D
the Surgery/Radiation question is a tuff one .... I had it easy , it was to big for radiation ...
research all you can .. get different opinions.... dont feel rushed ... these tumor's grow for years and years.. a few months wont make any big difference. Remember to get serveral copies of the MRI because all the major centers that do AN's will accept MRI's via the mail and call you. Are you west or east coast?
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You can probably tell by the previous posts that you are of course welcome here. So is your husband, if he gets up the nerve. ;)
On the radiation question: here is a quote from the U. of Pittsburgh web site: "We believe that all patients with newly diagnosed, residual, or recurrent acoustic tumors (less than 3 cm in extracanalicular diameter) are now suitable radiosurgery candidates." It is a good site for info on radiation, presented in a dull and clinical way, but full of information: http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
The link that Bruce posted on Cyberknife also lists several doctors who will correspond by email, and review a CD of your MRI, if you can get one from the MRI lab. You can also get surgery-oriented evaluations of your MRI at the House Ear Clinic in Los Angeles.
Take a little time, get a second opinion or two, and don't let anyone push you faster than you want to go. You will also find lots of emotional support from the good people on this forum.
Steve
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hi anna my mother had surgery in august she is doing good she is 74 years old the disussion forum os great they helped me with questions
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Hi anna,
I have joined the forum today as my partner is just in the first stages of being diagnosed with AN (as its called on here!!!)
He has very similar symptoms to those you describe of your husband. He is 36 years old, has been clumsy since i've known him but other symptoms started more recently.
He had his MRI scan today, obviously we are both very worried about the results.
I am glad that I have found this forum, its nice to have somewhere to go to read other peoples experiences and hopefully to get some support if we need it, I;m still hoping it will turn out to be something else, but am resigned to the fact that it is an AN.
I hope that your husband s doing well. Have you decided on treatment yet? If its not too nosey have you decided on surgery? i would love to hear how you are getting on, and how you are coping as a partner of someone with this illness
kitty xx
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Hi, Anna:
Welcome, as all family members are. :)
The decision to go with surgery or radiation is always difficult. Surgery - AN or otherwise - is always fraught with possible complications, but, to be fair, so is radiation in many respects, except that it precludes cutting open the skull, infections, etc. With an under-3 cm tumor, radiation seems the more attractive option but certainly not the only one. There are some myths about radiation floating around but these can be discounted by seeking out factual, scientific information available on this site and elsewhere on the internet. That should be your goal, now. Educating yourself and your husband. That will help you make a wise decision and not be affected by doctor's prejudices or myths that have no basis in fact.
It isn't easy but it's certainly worth the time and effort. I wish you and your husband all the best as you begin your 'AN journey'.
Jim
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Anna and Kitty,
Good for you both advocating for your husbands!
I had surgery in August and ordered information booklets from the ANA after ::) I got home from hospital. In hindsight I wish I had ordered these and read these before hand.
Here is the link. The booklets are not expensive and arrived within the week I ordered these (within the USA)
https://secure.baxinternet.com/~anausa/for_sale.html
I recommend that you obtain more than one opinion. Some neurotologists have more experience than others. You will realize this after a few interviews...You only want one with lots of experience!
Here is a list of surgeons that have met the criteria to be on the list with the ANA
http://www.anausa.org/physician_list.html
Here is a good list of interview questions to start with.
http://www.anausa.org/questions_for_physicians.html
I chose surgeon #8 of the 9 I interviewed. He and his partner shone and it was obvious in how my questions were answered (and his background checks) that he was going to be exemplary to work with. (And he was!)Not only is it important that you chose a skilled surgeon but also someone that you are comfortable working with and you know will be honest, sincere and upfront with you… and truly has the best interests of "the patient" at heart.
Although I did not go to House Ear Clinic…
http://www.houseearclinic.com/acousticneuroma.htm
&
http://en.wikipedia.org/wiki/House_Ear_Institute
&
http://www.hei.org/
…for my final choice I did fly there for consultation. I have to tell you I was incredibly impressed with Dr. Derald Brackmann there.
http://www.hei.org/news/bios/brackmann.htm
He has removed more acoustic neuroma tumors than any other surgeon in the world. I understand now (after the fact ::) ) that you can send copies of you MRI there (HEI) and they will speak with you over the phone. Dr. Brackmann is also a medical advisor for the Acoustic Neuroma Association. He is moving up in age (however still very spy) and you may want to ask his expertise before he decides to retire from the field.
It is very important to understand that “size� is not the only consideration. AN tumors are sort of like real estate “Location. Location. Location� … and some people (even those with larger tumors have various options to choose from (I did not have the radiation options as mine was too big and already pressing the brainstem.) Remember that typically Acoustic Neuroma tumors are NOT fast growing… so do not let any surgeon pressure you into abrupt decision making. You DO have time to weigh out ALL your options, research various medical institutions and interview a variety of surgeons. Find out from your medical insurance how many opinions you can obtain.
Also know that this resource is available
http://www.healthgrades.com/
I thought this was money well spent- particularly when I discover that one surgeon (team) I was seriously considering had multiple malpractice suits … not to mention the least accurate on my tumor’s (final) pathology prognosis. You want to know ALL this information before you go in for treatment. It will also give you a rating on the hospital the surgeon(s) works at - for neurosurgery etc.
There are success stories for both surgery and radiation. Often those folks move on in their lives …leaving their AN stories behind. We do not always hear from them on the forum here…
It is also important to plan a surgery time that best works for your family and support system.
Here is a good link I found on post-op hospital discharge expectations put out by the Acoustic Neuroma Association of Canada
http://www.anac.ca/en/dischargeTreatment.shtml
Information is power… just try not get to overwhelmed by it all at once. Educated yourself (and your family) so that you can all make good an informed decisions… and can plan life accordingly. Having a good support net-work of caring and understanding people is key for post treatment recovery. Some do not always have that in their personal lives but DO find support here on the forum. There are also ANA support groups in various geographical locations that meet in person. Once one joins the ANA (as I did 2+ months post op) then all the information of resources available in your location are sent to you. In hindsight I should have joined the ANA “before� ::) my surgery.
Keep moving forward!
4 :)
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Hi 4,
great post! thank you for sharing and researching to comprise a dynamite response on this thread :) Just a reminder.... As terrific as HEI and Dr. Brackmann are, please keep in mind that there are also many others around the States (and abroad) that will also review films and discuss AN's for no charge, as I personally have also had this done for me. Many folks do not have the means to fly to HEI so they may have to stay fairly local for their treatments. HEI is certainly top of the line for AN treatments, but there are also many others across the board that are top of the line as well, regardless of treatment protocols.... as you note, research, research, research is key and folks will make the best decision for their individual situations. I know many appreciate your recommendations and suggestions... and hoping others will also chime in with their experiences as well.
4, you rawk :) thank you!
Phyl
(P.S. I agree about becoming an ANA member.... I have put forth much to support this terrific organization and in my case, if it weren't for them, I wouldn't have been the best informed AN patient I could be. BTW, memberships are tax-deductible and for those living in the States, it's that time of year to cross check charitable donations before end of calendar year... just fyi.)
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4 :) That is so kind of you to give me all that information.
We are based in the UK, so not sure we will get much choice about the surgeon but we will definitely check him out fully first.
Am still keeping fingers crossed that there will only be a very small tumour there, will know more in a couple of weeks and i will keep you posted.
Thank you for your kind words
xxx
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Kitty,
Look at this link
http://anausa.org/forum/index.php?topic=5482.msg49764#msg49764
Cheryl (Cheza) too is from the UK ... however still very much JUST in post op recovery stage.
Perhaps you can connect with her...
Cheers,
4
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Hello,
I am 32 and was diagnosed a year ago. my AN was on my left side, with some hearing loss. I had translab surgery May 1, 2007 and came out with permanent hearing loss in my left ear, facial palsy on my left side.
I was running with 6 weeks and playing ulitmate frisbee. I had no headaches, no CSF leaks for all intense purposes I had a great recovery. My face is starting to go back to 'normal' in the 6 month, and I DO NOT NOTICE a major difference with the SSD. I knew the risks of surgery and did my due dillengence. In my case I chose the surgery because it would have done more damage to my mentally knowing it is still in my head with radiation than with surgery having it out.
Good luck with your decision, I was in the same stressed out pair of shoes this time last year as your husband is and thought my life was over, if only I knew what lies ahead..a normal life, and I dont' get any sympathy from anyone anymore, (that was the best part) :)
Justin