ANA Discussion Forum
General Category => AN Issues => Topic started by: kelsi on December 22, 2007, 11:54:50 pm
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My significant other has just been diagnosed with 13mm x 8mm which I guess is small-medium. The surgeon he saw is hot to trot to operate. Well we are going to get more information. His only complaint is 40 percent loss of hearing in right ear and possibly could explain his frequent headaches over the last couple of years. The surgeon didn't come out and say this but I guess there is no way to get this hearing back??? I also don't see many posts by men.
Frankly the posts I have read are not encouraging, lots of complaints much time after surgery of dizziness and balance problems. My SO has excellent balance now and is an exemplary heavy machinery operator.
My SO is not likely to post--maybe because he is a man and they don't like to ask for help and maybe that would explain why there are so many more women then men here but I'm concerned about his prognosis for quality of life.
kelsi
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Kelsi,
There are quite a few men on the forum, they may not have read you post yet, but will be joing shortly I'm sure. I had perfect hearing prior to my surgery and none in that ear now. My balance was bad for ten years prior and is worse now. I'm still dizzy. I am probably the exception and not the rule. Each person is different.
We have a lot of wait and watchers and that may be the way your SO can go (I love that phrase). You might want to check out what some of them have to say. Don't be discouraged.
Have a Merry Christmas and read and investigate before any decisions are made. Good luck.
Brenda
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Another method of treatment is radiation, Gamma Knife (GK), Cyber Knife (CK), Fractionated Stereotactic Radiation (FSR), and I know of a few men who opt for this mode for the very same reasons you state. Go into the Radiation/Radiosurgery room and you can talk with those that have had or are considering this form of treatment. I know there are doctors there willing to answer your questions also.
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You know us MEN . we wont ask for directions... :D
Its true.. there seems to be more women than men here... (or at least the women are more vocal ... ;) ) I'm a computer geek .. so it was just natural to Google this "issue" we have and end up here...
keep your chin up.. your SO has what I would consider a small one ... and post ops problems increase will the size of the AN .. so odds are your SO will do fine ... just do your research .. get a good doctor with AN experience is a MUST..with a AN of this size.. many people just watch it... if it stays the same size.. just let it be.. and if but it grows -- than we have to do something. what area of the country are you in ? also, I think the best you can hope for is to keep the hearing you have... I can't think of anyone's hearing that got better post op... Believe it of not.. losing ones hearing in one ear is not so bad .. if your other ear is good! the odd thing is you lose you ability to locate where some comes from .. which can be very annoying in crowed or noisy places... or looking for my cats at night.... ;)
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Kelsi,
Good for you advocating for your SO!
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.
(I am improving and this past month my facial palsy is showing significant resolve, balance is much better – so healing and improvement happens)
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.
Do not read everything on the forum- it will be overwhelming and scary.
There are many successful stories on the treatment of AN tumors. Often those people with success put their AN stories behind them and ‘keep moving forward’ with their lives – never to be heard from again (here on the forum.) Often they have a very good and caring support network that helps them through. However not all have that support but do very much find it here on this ANA forum. It is very important to start building up a support network now (pre-treatment) for you both.
You will find all sorts of various people here in the forum with experience as diverse as they are. Nevertheless there are many good and caring people (guys too :) ) here.
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/
Read up on the watch and wait forum.
http://anausa.org/forum/index.php?board=19.0
It is also important to plan a surgery time, “if� you ever go that route, which best works for your family and support system.
Information is power… just try not get too overwhelmed by it all at once.
Educate yourself (and your family) so that you can make good and 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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I had a AN similar in size to your SO and had an excellent surgical result. The most important element in a good surgical outcome is the experience of the surgical team. Let us know where you live, and we can advise you. If your SO wants to talk to a man, e-mail me and I'll send you my cell #
samlrush@yahoo.com
Sam
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HI Kelsi
If the main concern is hearing preservation then CK or GK would be something to explore . I can only speak for myself in
that there has not been any deterioration in my hearing after my GK nearly 31 months ago. My hearing loss was about 45% at the time of diagnosis after my GK and remains the same . I also have not had any significant balance problems related to the treatment. Our AN's are all as different as we are and a lot depends on the exact location . The best thing to do on this forum is to try and
read posts on AN's about the same size as your own since with AN's size really matters .
Good luck and Happy Holidays
KAT
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Real men don't ask for directions - but they do use Google Maps. :D
You are right, there is not much chance of getting back the hearing he has already lost. But there is some chance of keeping the hearing he still has in the right ear. With a small tumor, there is no reason for the surgeon to be "hot to trot to operate", there is time to do some research first.
For surgery, contact the House clinic (where Sam above went). Dr. Brackman, or one of his colleagues, can give you a free evaluation of the MRI, and tell you whether a middle fossa surgery might preserve the hearing, or a trans-lab surgery would be safer and wiser. http://www.houseearclinic.com/
For radiation, contact one of the doctors at the Cyberknife support site. They can also do a free evaluation of the MRI, and answer questions on the forum, or by email, regarding radiation treatment. The chances of preserving existing hearing are a bit better using radiation, with less risk to the facial nerve. Plus I think it qualifies as a heavy machine. ;) http://www.cyberknifesupport.org/
The outcome for hearing in his right ear is up in the air, and 2008 will not be an ordinary year for him, but there is plenty of good life left ahead, so there is every reason to take a little encouragement be optomistic long term. Best wishes to you both,
Steve
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Hi, kelsi:
My first bit of advice is: please don't jump to conclusions. This is basically a support site/forum, and so, you'll inevitably find a fair amount of somewhat negative comments from folks who who are dealing with post-op problems. This is a place for them to vent to people who have or had the same (relatively rare) condition and can empathize. Often, family and friends just don't understand the seriousness of an acoustic neuroma and don't always think the symptoms are such a big deal. They are. That doesn't mean that every AN surgery/radiation patient has post-op complications. I didn't. As my signature shows, at age 63, I had a large AN de-bulked and radiated. 18 months later, I'm doing well. I'm not the only member (male or female) who can state that, either. A lot depends on the skill of the surgeon, so seek out an experienced doctor, preferably one who has performed hundreds of AN surgeries and go slowly. Your SO's AN is relatively small and that is in his favor as it gives him time...and options.
As I understand it, acoustic neuroma tumors are found in slightly more women than men, something around 55/45%. No one knows what causes AN tumors, but they are treatable. As you probably realize by now, hearing lost due to an acoustic neuroma tumor is not restored with surgery, radiation or fervent wishes (I tried the last one but it didn't work). This is commonly known as 'SSD', Single Sided Deafness - and it is a handicap - but one that is also surmountable. Typical hearing aids don't help because the nerve is involved, but there is a 'special' type of bone-conductive hearing aid that some folks use and find very helpful. Others, like me, simply work around the problem.
I can only advise you to peruse this site and send for the ANA information packet. There are many AN-related websites around. I suggest you look at as many as you can. You and your SO need to be informed. In the meantime, don't rush into anything. Stay connected here and feel free to PM any member who you think can offer any constructive advice. We want to help...that's why most of us post here. Meanwhile, we wish your SO all the best as you folks deals with this stressful but manageable situation.
Jim
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Hello kelsi,
Everyone here have all got good advice.
I didn't find this forum until I was about a year po .
I use to really feeling sorry for myself.
This group have made me feel that I do have issuse and that I can survive with them.
Besides they seem to have lots of import information
Some of my own friends made me feel like it was my imagination.
I see that your husband has someone that cares so much for him, your his gaurdian angel, keep being his angel.
eve
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Hello and welcome to this amazing site. I would like to find out a couple things about your SO:
• Age
• Location (where are you guys)
• What Dr(s) have you seen already
As you can see, there are many types of people on this site with many different scenarios regarding their AN. There are no 2 AN’s alike, and every outcome is different. I had my surgery almost 4 months ago and I happen be of the “good post-op� experiences. I still have facial palsy, but there are slight improvements every week and my surgeons expect good facial recovery. I had a very large AN, severely compressing my brain stem and it sounds as if your SO “should� not have facial issues. There is the hearing issue and it possibly can be saved retaining what hearing he has left. I can honestly say, the SSD is better than I thought it would be. Yes…..there is readjusting, but livable.
This site opened my eyes to the VERY important fact of researching your surgeons. Your SO’s AN is still small, so you have time to look at ALL options. I wish you both the best. Please keep us posted so we can be your support system. I absolutely appreciated all the love and support I received leading up to my surgery. It truly was overwhelming.
Happy Holidays,
Adrian
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Let me just chime in with the others who have said do not rush into anything, and do not trust anyone who tries to rush you into anything.
Besides the resources others have suggested, a site which does a good job of breaking down information is the University of Pittsburgh site at http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
Pittsburgh is a pioneer in GK radiosurgery, so they tend to advocate for that, but the website gives plenty of readable info on all approaches, and it reports studies (such as one that shows that neurosurgeons are very willing to defer treatment for a long time if they themselves have ANs) that do not entirely agree with their own approach.
I had radiosurgery for a small AN a year ago, and I've had no real difference in my life.
Macintosh
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Thanks for much excellent information and suggestions! I will contact a couple of you privately--I know it takes time to type out a thoughtful, considerate response and we appreciate your kind efforts in your responses. I was very intrigued by the study that suggested that neurosurgeons would absolutely not rush into anything.
We are located in the greater Seattle area. He has seen a Dr. Hoilstad, Otology-Neurotology and has an appointment to see his teammate, Dr Raises.. My SO is 43.
kelsi
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Kelsi-
I don't have much to add to what others have said. I'm one of the ones with little in the way of residual side effects from surgery. I had facial paralysis but so slight only those who know me noticed. It has resolved almost completely three months post op. I have total deafness in one ear which is, at times, a blessing (in a busy bookstore at Christmas, being in an island of quiet is nice). The only thing that phases me about the deafness is not being able to locate where a sound came from. While I still have some dizziness in darkness, it doesn't really stop me. I've just learned to move a little bit more slowly and leave a light on to navigate by.
That said, all of the side effects seemed horrible pre op. Now they're just something to (try and) laugh at or about. Like everyone else, I have days where it rots to have had this happen, complete with pity parties and tears. Fortunately I also recognize what's happened to me is inconvienient not insurmountable.
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kelsi,
I don't have a lot to add what the others have said so well, but I wanted you to know that I'm another post-op patient with almost no side effects. Yes, I am deaf on one side, but I lost 90% of the hearing pre-op and there was no chance of it coming back. I'm now getting a hearing aid (TransEar) for the deaf side that will help, though it won't totally replace the AN ear. I'm now 15 months post-op and have no issues with balance, my facial nerve, headaches, or anything else - unless I get completely over-tired. But who doesn't have issues then? ;)
I'll urge you and your SO, along with everyone else here, to take time to do all the research and make an informed decision about treatment that's right for your particular situation. Maybe it's surgery, maybe it's radiation - that's for your two to decide. But don't feel pressured to make a fast choice because you do have the time to work through it all.
Good luck, and let me know if I can do anything to help.
Katie
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For Kelsi and anyone else who wants to see this study from U. Pitt--here's a quick cut and paste:
A survey was mailed to members of the Congress of Neurological Surgeons in July 2002. Six hundred sixty-three surgeons responded to the survey (30%). The survey was mailed with four questions written on one page. Forty one percent of responders were between the ages of 40 and 50. Eighty percent of neurosurgeons surveyed had either performed radiosurgery on a patient with an acoustic neuroma or had referred a patient for neurosurgery (n=530).
Survey Case One: You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?
Response: The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time. It had been stated in the case presentation that serial scans had already shown a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one-third of responders continued to choose observation for a 37 year-old patient with a small, but growing tumor.
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Hi Kelsi.
Don't be discouraged by what you read here. Like the others said, everyone is different. While I'm sure everyone here has had their share of bad days, I don't think too many would say they have a poor quality of life since their diagnosis or treatment. It's important to remember to stay positive so that the bad days stay to a minimum, but I'm willing to bet, we all had bad days before our AN's too.
I know this whole experience has helped me to put things into perspective and appreciate things a lot more than I did before, which I think is one of the best things to happen since my surgery. I realize how lucky I am that this was a benign tumor, that I had the support of family and friends and skilled, caring doctors who made sure I made it through this okay. I am deaf in an ear that worked perfectly the day I went into the operating room, I have some facial issues and minor balance problems - but as my husband reminds me on my bad days - it sure beats the option! I'm here to raise my kids and enjoy things - and that's a pretty big deal to me.
Part of the reason it might seem like a lot of "complaining" going on here (which I don't think there is) is because it's so much easier to talk about our AN related problems with someone who knows exactly what we're talking about. I don't think anyone who hasn't been through this can really understand what we're feeling. It helps to bounce our problems or concerns off of each other because maybe we can find a solution we hadn't thought of before. And it probably keeps us from talking about it to our loved ones all the time - they definitely need a break from it too!
I hope everything goes well for you and your SO - who is obviously lucky to have you in their corner looking out for them. Let us know how things go.
Lori
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Kelsi -
I'm 46 (had surgery at age 45) and am doing excellent - no issues whatsoever other than SSD. I'm not a man, but if your SO wants to "talk" to someone who has had a good surgical outcome, he can send me a PM.
As you can see by some of the other responses to your post, there are many forum members (men included) who would be more than willing to help you and your SO.
Jan
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Kelsi,
I can see why you are not encouraged. I went through the same thing. I felt that this is a very depressing site. Many positive outcomes are not posted because those people move on. I can honestly say I had a wonderful outcome, I am just 2 months post op! I feel that on this site I found my Guardian Angel to help guide me! If I can be of any help to you I'm here!! Nancy
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Thanks for the positive message. I've actually came acrossed a lot of positive outcomes now, especially when the tumour is small.kelsi
And the holidays were so wonderful around here.