ANA Discussion Forum
General Category => Inquiries => Topic started by: mom2cbnt on February 26, 2010, 08:16:32 pm
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My name is Alexis and my husband Robert who is 36 was just diagnosed with 2.3cm AN. He experienced a decrease in hearing last summer but thought nothing of it it was livable. Our 11 year old son has Bi Lateral Sensorineural hearing loss and wears hearing aids, so we thought his loss was the same type as our son's. This past December DH(dear husband) started getting ringing and buzzing in his left ear. Finally he decided to have it checked out and went to the ENT. They did a hearing test and and MRI. The MRI showed a AN measuring 2.3 The ENT mentioned that he would be referred to U of M (university of Michigan) Hospital. We have his next appointment scheduled with an ENT at U of M on 3/12. The first ENT mentioned that he believed that dh's best option would be surgery not radiation therapy. We will see what the next doctor says.
My hubby's biggest concern is what to expect with this. He is the sole provider for our family. We recently relocated to South Central Michigan from Southern California for his job. We have no family here to help. We have 3 young children ages 6,8,11 years old. He has 2 jobs really. He is a Supply Chain Manager for a manufacturing facility and is also a Part time Senior Pastor for a small church. He is worried that if he opts for the surgery what kind of Quality of Life might he have post op. will he be able to return to work? Will he be able to drive? how long before resuming duties will he be able to function normally? I am sure a lot of these questions will be answered at the Doctor's but at the same time he is reading research on-line and coming across horror stories and is getting worried. The hazard of internet research I am sure.
Any help/advice is appreciated.
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Hi Alexis, and a big forum welcome to you and Robert.
At 2.3 cm, Robert's AN is in the medium category. It is still small enough for radiation treatment, if he is interested in pursuing that. At U. of Michigan, you may get referred to Dr. Telian, who did a presentation at the ANA symposium last August, and is considered to be a very good surgeon.
As far as recovery after surgery, it usually goes something like this. The first 3 days don't count ®. You typically are home by the end of the first week. You need at least a couple of weeks at home, alternating between sleeping and napping, before you can consider facing the world again. For many, going back to work is more likely 4 to 6 weeks later. The first days back at work are tiring, and fatigue comes on easily, so part time at first is often a good idea when possible.
As you can tell from having your next ENT appointment scheduled two weeks out, this is not an emergency situation. Robert has probably had his AN for several years at least. If you can plan a time where sick leave and vacation time can be combined, maybe in the summer, you can manage to handle the down time. Ask neighbors and church members to help out too; many people are more than happy to help, and this is a situation where asking for help is the right thing to do.
The vast majority of medium sized ANs do not cause any of the "horror stories" you may have read about. Robert will get through this fine, like many of the forum members here have done. A year from now it will all be just a pleasant memory. ;)
Take care and let us know how it goes.
Steve
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Hi Alexis and Robert .....
Adding my welcome to this very supportive and informational forum. You will find us empathizing all the way and we post-treatment ANers are on here to answer any questions/concerns you may have.
I wish there was a standard answer to your questions relating to being able to return to work. Nearly all of us who were working (I am mostly retired.) returned to work. However, there is no definite answer on how long recovery will take to resume all normal activities ..... it is so individual. After my surgery, I could have gone back to a sedentary job within a month. Had I still been teaching, it would have been a bit longer. I had more pronounced balance issues than most people do because of having had two surgeries (see my signature below).
Likewise with the driving ..... some post-surgery patients have returned to driving within a couple of weeks, some have taken longer. Again, it all depends upon your balance and gaze stabilization recovery. Strange as it may seem, the worse your balance is now, the more likely you are to regain it sooner. That is because your brain has to switch all vestibular signals to the other side and if it has already started (you are wobbly now), you are already compensating.
Many thoughts and prayers as you walk through the agonizing research and treatment options phase of this journey.
Clarice
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Alexis and Robert ~
Hello - and welcome to the ANA Discussion Forums. Although the initial AN diagnosis is often daunting and internet research can be both scary and confusing, I can assure you that the ANA website is based on facts and the forums, although containing diverse opinions, are populated with good people who have been through (or are going through) what we sometimes term 'The AN Experience' and are eager to answer your questions, share their story and generally advise and support you as you travel down this road no one really wants to take.
My fellow moderator, Steve, gave you much pertinent information and I can't add much to his incisive comments. I underwent both debulking surgery (for a large AN) then irradiation treatment. Both were eminently successful (I was driving within 14 days of my hospital discharge) and no horror stories emerged from the experience, although not every AN patient has the exact same scenario.
I trust you'll both be frequent visitors to the forums and I urge you to feel free to ask any question you deem important because we stand ready to join and support you in your quest to vanquish the AN 'invader' and quickly return to normalcy, which is the goal of every AN patient.
Jim
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Alexis (and Robert),
Hello and welcome. I am so sorry to hear that your husband was diagnosed with an AN. It is a scary diagnosis, and like you said, the stories on the internet don't help. All I can tell you is that most of us are shocked and terrified when we are diagnosed, but by the time we make a treatment decision some of that wears off. Most of us go back to our normal lives and our careers after treatment, although exactly when can vary from person to person. I had my tumor surgically removed in December and I am at least 90% back to normal (I am SSD and have a little lingering unsteadiness from the loss of my vestibular nerve, but I feel good!!!). I think I am a success story, and I try to talk about my wonderful results to balance some of the scary. I hope people who are just diagnose realize that there is a whole spectrum when it comes to treatment outcomes. I remember reading story after story and only finding the terrifying ones.
Although I am not happy that I had a brain tumor, and I would not ever wish one on anyone, I do feel like the whole experience really made me realize what is important in life. I try not to let a day go by without consciously realizing what a blessed life I live.
I am lifting you both up in my prayers, along with your friends and family that will support you during this time.
Lyn
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Welcome Alexis and Robert!
Wow! Southern California to Michigan? Must have been quite a culture shock there, huh? The good news is that if you're surviving your first winter in Michigan, then this AN thing should be no problem! ;)
Like the others have said, it is a scary diagnosis, but we're all here as living proof that there is life afterwards, and it's very much worth living. When I was diagnosed and had surgery, we were new in town too and had no family nearby. I had a 4 year old and a 9 month old at home. You'll definitely want to take people up on their offers of help. I know most church communities want to do what they can for a fellow member, especially the pastor who is new to the area. You may be innundated with casseroles for a while! (Feel free to send any extras my way...).
Your husband has no reason to believe he won't be another success story. We all heal at our own rate, but eventually, we get there and get back to our previously scheduled life.
Good luck at the appointment and I hope you get all your questions answered!
Keep us posted.
Lori
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A scary diagnosis...but not the end of the world! You are. I'm sure, reeling after being told you have a brain tumor of some sort. The forum is full of people who can say "Been there, done that." We will walk you through it and hold your hand when needed, rest assured! Take a deep breath, read and study everything you can find, and send your MRI to as many places you can think of. U of M hospital is a GREAT place to start, so that is good news. House Ear Institute, in LA, is another. They will do a free phone consult if you send them your MRI. Even if you have no intention of going to LA, it is still an excellent point of reference. Good luck and keep us posted!
Priscilla
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Hi and welcome to the Forum.
Michigan Ear Institue (MEI) has wonderful doctors who treat ANs. You should check them out.
You should also contact the ANA for their informational brochures; you'll find them very helpful.
Good luck,
Jan
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Hi Alexis & Robert,
As others have said - WELCOME! Here, you will find FANTASTIC folks who will support you through this AN journey.
So sorry you had to join this crazy club, Robert ??? - but you are not alone.
I am in the "Watch & Wait" category, so i can not give any advice what to expect in post-treatment - Watch & Wait gives a person time to do research, make treatment arrangements, etc. So, please - take time to do research, consider all options and then if you need additional time, take a break.
My thoughts and prayers are with you and your extended family.
You will get through this.
Sincerely,
Sue
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To a fellow Michigan person I want to welcome you to the site! What city are you from? I'm on Lake MI (in the middle part....Ludington).
I basically would quote what Jan said above and contact ANA about information. Also which ever doctor(s) you visit, ask them for literature. I ended up at Michigan Ear Institute and got info. from them too. They have offices in out lying areas of Detroit.
I'd recommend getting opinions from U of M, MEI, and like others said you could even send stuff to House Ear Institute in California (being that is where you are from, that may be a good option.....maybe you have family there or something). Also could check out their websites for more info.
You guys are at the hardest point right now, decisions. I am only 38 and my tumor was 'small' category I chose surgery. {I wanted it GONE}. I actually was lucky and spoke with 3 doctors that all lead to the same agreement. Just remember that every situation is completely different! Things depend a lot on how the tumor lays, if it is a sticky tumor on the nerve, and what other nerves it may be pushing on.
Wishing you guys the best at this time!!
Denise
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To a fellow Michigan person I want to welcome you to the site! What city are you from? I'm on Lake MI (in the middle part....Ludington).
We are in south Central Michigan.. Jackson to be exact
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Hi Alexis and Robert,
Another hi and welcome to the forum.
You'll find lots of great advice, humor, empathy, whatever you need. My tumor was a bit complicated but I am doing fine and living my life :)
Things will be OK.
As long as there is not any brain stem involvement, then CK, GK, even surgery are all options.
This is the hard part deciding. Let us know what advice you get so you we can be your sounding board. It really helps to just share all the confusing info.
You got lots of time. Hang in there, we're here!
Maureen
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As long as there is not any brain stem involvement, then CK, GK, even surgery are all options.
Maureen
First of all, Alexis and Robert, welcome to our little piece of cyberspace.. Great wealth of information here.. We're glad you found us.
Second, Maureen, isn't it true that 2cm is pretty much top limit on size for radiation as an option? At 2.3cm on the last MRI, they're likely already outside of this range for being considered for radiation treatments (even if no current brain stem involvement). Likely, surgery will be the only option available (as it was for me at 3cm), but then it becomes translab, retrosigmoid, middle fossa or endoscopic surgery as the primary decision.. And, that can be greatly influenced by your doctor given the location, nerve involvement and their own penchant for a particular type of surgical approach.. If I'm wrong, please correct me as I'd rather be wrong and give good info in the future than give out bad info to those that I talk to.
Regards,
Brian
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Brian -
size limit on radiation is usually 3 cm - not 2 cm
Jan
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Jan,
Thanks.. I stand corrected. All options, unless brainstem involvement, as Maureen said should be available.. I knew I had to be wrong in my recollection about the limits, but for whatever reason I was sure it was 2cm limit instead of 3.. Oh well, at least I know for sure now. :)
Thanks,
Brian
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Hi again, I just thought I'd let you know someone else posted on Dr. Telian from U of M and another person posted on that post. It just so happens they BOTH have their appointments on 3/9 at U of M/
I just thought I would put that out there because sometimes having others going through stuff at the exact time and possibly same place may help.
I think you can click here to go to the topic: http://anausa.org/forum/index.php?topic=11949.msg137617#msg137617
Best wishes, Denise
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we did end up having our appointment on Friday. We didnt see Dr. Telian but did see his associate Dr. El-Kashlan. I am working on an update and hope to post it all on the boards tomorrow morning.
Based on what he had heard of Robert's symptoms, location of the tumor and size and shape of the tumor he is recommending Translab. He spent over an hour with us and Robert is feeling very comfortable with his recommendations. Robert is very at ease with all the information, and the possible outcomes. I guess Robert's AN is pressing on the brain a bit more than he expected based on the report given from the ENT at Allegiance. Also apparently his AN has alot of cystic characteristics within it. Its not a solid white mass on the MRI it has black spots within it which is possibly speeding up the growth rate. Robert had an MRI done about 6 years ago on his brain for a different issue but it wasnt on that MRI, and based on the size 2.3 cm it should based on expected growth rate of 2mm per year have been there as far back as 10 years ago. This definately concerned the doctor.
It was funny because my 11 year old hearing impaired son was with us and chose to turn off his hearing aids during the appointment so that he didnt' have to hear anything. He was worried already and didnt want the information to scare him. He is such a sweetheart.
We are waiting to schedule more tests a CT scan, some nerve tests, and a meeting with Dr. Thompson (who did my friend's son's spinal block last month.) to see what he is recommending before scheduling a surgery. But if all goes well we are looking at possibly Early May.
I did see that you saw Dr. Telian and he spent a good deal of time with you . I hope you came away with the sense of peace with your ourcomes that we have. Robert is very anxious to get this resolved and on with his life knowing that there will bec possible changes as a result
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Hi Alexis,
I am so glad you guys got your appointment and your husband feels comfortable. That is a HUGE factor when seeing doctors.
Now, the extra testing he has to do will help with more answers as to which nerves, etc. may be affected the most in there. Plus it should help with how much the hearing response to the brain issue is. (has he been told how much hearing loss there is?) Sure if plenty of hearing loss though and due to the size of his tumor, any dr. would recommend the Translab.
There is one other thing I may just throw out there to you guys: I know due to your son you are used to the hearing device stuff, etc. Now if your husband has been having hearing loss, the complete loss with Translab may not bother him as much as some. (like myself and others, some had good hearing prior to surgery, and opted to have a different kind of surgery to help try to preserve the hearing....then we came out SSD...single sided deafness...due to some issue or another). My point anyways, is for myself and a few others, that is a tricky thing to get used to. And, now am researching hearing device options or learning to live & deal with it. We don't have as many choices due to the fact we can't get air conduction hearing aides, but need Bone conduction. The one option is the BAHA (bone anchored hearing aid). Some people opt to have that done at the same time as translab. Like I say, it's just another thing to throw out there because I am now finding BAHA situation takes while. "Might" be something to check into. I also brought some of it up to you because of your husbands work with church. For me, church has actually been my hardest thing with "my" SSD, but everyone is an individual situation.
Well, of course you probably didn't need more now, but just letting you know a couple options too. Feel free to PM me or anything, anytime.
Your son sounds like a true sweetheart and for sure nervous what daddy is going through, but sounds like he has had his own things and should be a great little support for dad!!. My boys are 11 1/2 & other 10 end of month.
Best wishes,
Denise (MI)
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I am scheduled for surgery March 24. Deciding how I would be treated was the hardest part...it took me three months to decide . I felt like a ping pong ball...one day gamma knife, then surgery, maybe I'll wait, gamma knife, surgery! I chose my doctor based on information found on this site. I sent personal messages, and received personal messages. Don't be in a hurry to decide. Use this site to gather information, but in the end, you and your husband will be the ones to decide his treatment. I know how difficult this will be on your son, but in my opinion, it may be better for him to involved in the decision, or at least think he is involved...lemon/lemonade. This is a good opportunity for him help. You helped him with his hearing problem, and now, maybe he can help his Dad. Best of luck to all three of you.
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Hi Alexis and Robert.
I see we have several things in common. I am originally from California and now live in southwest Michigan. I moved here 10 years ago though. I am taking classes at Jackson Community College but live in Kalamazoo. I have my surgery scheduled for May 12. I have not met with Dr. Thompson yet but I am told he is great as well. Dr. Telian told me I would "love him". I was told my AN was cystic as well so maybe that is why mine appears to be growing faster. I really have no idea how all that works. Anyway, I hope that you get all the answers you need to handle this situation in your life. I think we can only take it one day at a time.
Sharon