ANA Discussion Forum
General Category => AN Issues => Topic started by: mallory on July 23, 2008, 05:23:20 pm
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I was just diagnosed last week, and I think my period of denial is wearing off. I've been seeing ophthalmologists for a couple of years because of some swollen optic nerves, and when I finally had a CT scan last week, my neurologist told me about the tumor and that I would have to have surgery. I was told it would likely be in September.
I have an appointment with a surgeon next week, and I'm making a list of questions to ask. Is there anything I should make sure to ask? The neurologist did a good job of explaining it to me so I didn't freak out too much, but now I've been reading things and there seem to be all kinds of potential side effects of the surgery that I'd never even realized, which worries me.
Also, I live alone and am generally not a very social person, so it's freaking me out to have people constantly calling and checking up on me. I really appreciate that people care, but I'm having a hard time coping with the constant attention and lack of alone time. I'm already having panic attacks at the thought of all the people invading my personal space after the surgery, which sounds awful. Any tips for dealing with that?
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Hi Mallory,
I think it is great that you found this forum because there are so many people here who have experience under their belt, and there are also people like you (and, I can include myself) who are just getting started on this journey. I am watching and waiting right now, but I am in decision mode because my AN is starting to grow. It would be helpful to get some more info so folks will have a reference point about your situation. My first thought was to have surgery when I got my diagnosis. Depending on your situation, you have the option of things like gamma knife, cyberknife (which are not surgery) or watching and waiting if your tumor is small and not causing any problems. Please keep posting. You are not alone. You can trust the people here to be sensitive to your situation. Write back again.
Nancy
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Hi Mallory,
Welcome to this forum. I'm sory to hear that you have an acoustic neuroma but you've come to the rifght place. We are here to support you in whatever way we can. Although we are not doctors (most of us aren't anyway -- I think there is at least one doctor who particiates and has had an AN) this forum is a fountain of information. You seem like a very private person who is in need of support right now. The great thing about an online support goup is that you come here onlyu when you want to, ask and answer questions only when you want to and respond to attention only when you want to. I would suggest that you request brochures from the ANA (see the front of this website). You will find them very informative. How big is you AN. If it is small you may have time to watch and wait and while you are doing that, if you so choose, you can get second and third opinions from both surgeons and radiation oncologists. I wish you luck in you decesion making process and feel free to ask any and all questions here.
Best wishes,
Wendy
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Hi, Mallory -
first of all, let me assure you that it's very common - and reasonable - to be scared (either a little or a lot). I'm glad you found us, because among other things, we can definitely help you with that feeling :)
You mention surgery, so I'm assuming that your AN is too large to be treated by radiation, but that might be a bad assumption on my part. Perhaps the doctor you talked to just favors surgery, or is unaware that radiation is an option. The size of your AN - and sometimes the location - usually determines what treatment options are open to you. I'm not sure how well-versed neurologists are in the treatment of ANs - my surgery was done by a neurotologist (basically a specialized ENT) and a neurosurgeon. The main thing you want to do prior to treatment is be informed.
First and foremost, I would recommend contacting the ANA and asking them to send you their literature. It's very informative and it's written in language that non-medical people can understand.
Second, if you go to the opening page of this website, you will find a list of questions to ask the treating physician. You'll find it under "Overview". Actually there is a lot of other information on the main page that you might find helpful also. Please note that it's very important to find a doctor who specifically treats ANs when you do decide on your course of treatment.
I don't really have any tips for those who are invading your personal space, other than "don't answer the phone". Seriously. Most people have an answering machine. If you are feeling overwhelmed, let the machine pick up and return the calls as you feel comfortable. When you return the calls, politely tell the callers that you appreciate their concern, but are feeling overwhelmed and need some time to sort things out. Offer to call the caller in a few days, or ask the caller to check back with you in a few days.
Almost forgot to say, if you tell us where you are located (what part of the country) some members of this forum might be able to suggest some good doctors to consult with if you are interested. There is list of docs on the main page of this website, but they are not endorsed by the ANA.
I also want to note that there are side-effects to both surgery and radiation, but everyone's AN journey is different. Some patients have lots of side-effects; some have few. Reading/listening to statistics can be scary, but no one can tell you 100% if you will encounter side-effects and/or which ones they will be. There are sad stories on this forum, but there are happy ones as well - and for that matter a lot of stories that others perceive as "sad" turn into happy ones. We are here to support you no matter what.
We're here for you; don't hesitate to ask us anything!
Good luck,
Jan
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Mallory, I totally understand where you are coming from with people hanging around. I know folks mean well stopping by but until I felt better I really didn't want to be around people. I really only wanted to be around my husband and daughter just a few hours a day - I slept the rest of the day.
I spent this past weekend with dear friends of mine from childhood (9 ladies in all). One of the ladies has cancer and hospice has now been called in. Her very closest friends are driving her crazy and she talked to me for hours explaining how she didn't want people to wait on her or keep doing for her like she is helpless. She appreciated that I understood and couldn't understand why other friends don't get it. Bottom line, be honest with your friends and neighbors, let them know how you feel and that you will call them when you are up to having visitors! That a card in the mail would be appreciated!
I want you to know we are very sorry you have an AN. It sounds horrible when the Dr tells you that you have a brain tumor. However, I can assure you all of us know how you feel. I only had a few weeks before I needed to have my tumor removed. I did get my "stuff" in order with a Will and other necessary paperwork. I had prayer with a few folks and when I went into surgery I had my brothers family wait with my daughter as they wheeled me back to the pre op room with my husband. My brothers family and a few friends stayed with my husband until I woke up from post op late in the day. My family helped my husband a lot!
We will keep you in our prayers.
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Hi Mallory, and welcome to the forums. I'm very glad you found us, though of course I wish it weren't through an AN diagnosis.
I don't have much to add to the excellent advice above, but wanted to echo Wendy's observation that an online support group may be exactly the kind of low-key (but invaluable and readily accessible) resource you need right now.
As far as worrying about people crowding you after the surgery--I fully sympathize. It can be pretty hard for me to to ask for (or accept) much help from others, except for a select few (and I was adamant with my husband that NO ONE except he and my kids were allowed to visit me in the hospital). Can you identify a couple of people you would be comfortable with helping you out (and you really will need help post-surgery...)? Then you'll be able to say "thanks, but I have all the help I need" with confidence (and sometimes if people who are worried about you are reassured that you've got necessary support, they'll back off a bit more).
Also, when I was diagnosed this spring, I printed out the list of questions in the Overview Jan mentions and made copies to take to the different doctors I saw (I consulted 3 before settling on my surgical team). It really did help me to get the most out of my appts and not leave feeling like I hadn't gotten the info I needed.
Best of luck, and please keep us posted on how things go with your appointment next week!
Carrie
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Mallory...first off sorry to hear about your new discovery. I'm glad you found us thou. It is very scary to know you have an AN. I would do you r research. I dont think you mentioned the size? Cyberknife website is a very great place to go to and ask any question you feel necessary. You will get great feedback. I had CK done on my AN last January. I'm 30 years old. Please keep in touch and let us know how you are doing.
Thanks
MIndy
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Thanks for all your replies. It all feels a bit overwhelming right now.
I don't know how big it is. It never occurred to me to ask at the time, and I haven't been back to see a doctor since I found out. The neurologist mentioned radiation, but seemed to imply that I would need surgery.
I live in Canada (Ontario), and I am not sure how much leeway I get to "shop" around for doctors, but I was told that one of the best surgeons for this lives in my city, and that is who my consultation is with.
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Hi Mallory
I live in Ontario too. The system here is somewhat slow, but based on what I learned from my experience you need to remain on top of things. The doctors will give you as little information as possible, so make sure to ask and insist. You should also insist on getting referrals for additional consultations. You need to know what the size and the location of the AN is. Ask for the radiologist report. Make sure to request another appointment, and go armed with the list of questions that is available on this site. Once you are in the system getting referrals becomes easier.
Whereabouts in Ontario do you live?
Take it easy
Marianna
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Hi Mallory,
Welcome to the forum. It is a little overwhelming at first; an AN diagnosis is not the sort of thing that happens every day. As you can see already, there are lots of people here to help you with your questions, and to provide support when you need it. Please feel free to make yourself at home, and ask as many questions as you like - that's the reason we are here.
I am posting a couple of links to sites mentioned above.
The question overview mentioned by Jan: http://www.anausa.org/questions_for_physicians.html
The cyberknife patient support group mentioned by Mindy: http://www.cyberknifesupport.org/
One last thing: relax. You have time to sort things out, and this is a very managable condition. It will work out.
Steve
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Hi Mallory!
Just offering a thought regarding the invasion of personal space (by the way, I totally get it!) - maybe you can let people know before your surgery that you will update one person - and then tell the others to contact that person for any inquiries about your well-being, rather than contacting you directly. At least that way, they'll be able to find out how you're doing and make sure you're okay, but you'll only have to deal with one person. And if you decide you need some help, you can have your contact person spread the word about what you need. I think most people will be able to respect your wishes, especially if you make it clear in the beginning that this is how you want it.
Not much else to add to the wonderful words of wisdom already given - other than good luck!
Lori
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Lori,
Good advice. Sometimes I think people think they are doing a good thing when they come visit you in the hospital. For some people a visit may be just what they need, and for others not so much. In my case, I would rather just have my husband come, but also leave if I ask him. I didn't think to set limits when I had an operation several years ago, and then this couple I don't really care for showed up in my room just as I was getting settled. It was horrible, and I pretty much had to tell them to leave in a "kind way". So, be assertive ahead of time, and it should pay off. Take care Mallory (I like your name BTW).
Nancy
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Mallory
Welcome. I am new to this site also, and so very grateful I found it in this past month. This site has been a God-send in my journey. I will add one additional option to Lori's great suggestion. There are several web based communicaiton programs that the "one contact person" can utilize to send out broadcast messages to your group of contacts with updates and progress. A blog page can be created, as well. So, there are ways to get information to the people who care and want to know without burdening you or your close contact with dozens of phone calls. Just a thought. If you want, I can share the web program I am utilizing for my surgery which is next week.
All the best,
Kathleen
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Hi Mallory... and welcome. As you can see, everyone is welcoming and glad to help as best as we can.
did the dr say it was an acoustic (Vestibular) schwannoma? Since you were initially working with ophthalmologists re: swollen optic nerve... this the MRI/reports show an AN or a different kind of schwannoma? Any details? It will help us to know so we can support you better.
Hang in there....... and again, welcome.
Phyl
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Mallory,
Welcome to the forum.
Sorry for the reason you are here but nevertheless I am glad you found us.
The key is you want to be as informed as possible.
Believe it or not- in Canada (I am a Canadian residing in the USA) you can look around and select your surgeon there – the key is having a good GP and or ENT who will write the referrals to see them.
Here is the Canadian Acoustic Neuroma site
http://www.anac.ca/
A “neurologist� is a generalist of the brain. You really need to see a “neurotologist� (a specialist in acoustic neuroma tumors) since this is a tumor that grows outside the brain and involved the acoustic (vestibular) nerve (and sometimes the facial nerve). Also you only want a surgeon who has done many surgeries and only comes with much experience.
Here is one of the world renown – in your area Julian M. Nedzelski
http://www.sunnybrook.ca/team/member.asp?t=14&page=2152&m=207
Many on the forum have been pleased with this doctor (neurosurgeon)
Dr. Rutka
http://www.surg.med.utoronto.ca/neuro/
Remember your surgical team must involve a neurosurgeon and a neuroTOlogist.
Plus this one in London, Ontario- Dr Lorne Parnes
http://www.uwoent.ca/node/12
If you choose to go to London- Parnes has a new partner joining him, this fall that actually assisted in my surgery- Dr Sumit Agrawal.
Also you have not mentioned the size of your tumor- this may have a bearing on what other options you have- besides surgery.
I respect that you are a private person- as I was. You will need to build a support system as you will need much assistance and help from others. This will be a time where you need to let go and delegate to others. Around the time of treatment- you will loose some independence – but with good follow up care, faithfully following physiotherapy etc- you will most likely gain this back again. I learned that it is important to accept help when it was offered- no matter how strong and independent I am- as there are times when we just need other people. This is one of those times…
Every AN patient outcome is different- size, location and adhesiveness of the tumor can have a huge bearing on the outcome and recovery time. Know that you are already on this website and discussion forum ...is a step in right direction.
I am almost at my 1 year anniversary from treatment and I am biking, hiking, swimming- and enjoying summer. I won’t deny there have been challenges and obstacles- but I learned to overcome these as they came up but most importantly to reach out to others -not only when I needed some support and help but to help others out too.
We are here for you. :) Ask questions as they come up. There other Canadians :) contributing to this forum and hopefully they will chime in too.
Keep moving forward.
Daisy Head Mayzie
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Hi, Mallory:
It appears as if I'm the caboose on a long train of welcoming messages filled with good advice and suggestions. That's O.K. Its what we do here...use our personal experiences to help others with the same relatively rare condition. I can't add much to all the good advice, suggestions and links you've already received. However, I noted your concern regarding unwanted but well-intentioned visitors. Having had some experience in this matter and feeling much the same as you do (cherishing privacy), about the only possibly helpful suggestion I can make at this late date is that if you're married, appoint your spouse to be your 'gate-keeper'. When I was in the hospital and immediately following, as I recuperated at home, my wife fielded all telephone calls and made it very clear that I "wasn't up to visitors". No one was offended and I saw people on my own schedule, by inviting them to my home or going to a place where we would meet (church, usually). If you're not married, a parent, sibling or even a good friend can be your gate-keeper. This may or may not be practical for you but I wanted to make the suggestion as well as add my voice to the melodic chorus of welcomes and best wishes as you begin your journey back to wellness, which I'm sure you'll handle just fine, with a little help from your friends. :). I look forward to your posts.
Jim
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Mallory,
Welcome! Isn't this forum wonderful?
You mentioned that you live alone--please have someone help you after your treatment. Whether someone stays with you or whether you go and stay with them, treatment for an Acoustic Neuroma is not something to go at alone. I was sent home from the hospital with a walker and have upgraded to a cane. At 5 wks post-op, I'm still not driving. So, you can guess, I still need help. It sounds like you have people who are willing to help. Take advantage of that and appoint them certain duties.
The week before my surgery, I gave my co-workers my sister's phone number. If they had concerns or questions about my condition, she was the one they could reach. This way they would know not only how the surgery went, but when I was released from the hospital and, very important, when I'd be ready for company.
I also gave many people the URL for this discussion forum. I told them where they could find updates on my condition. It turns out that many of my friends at work relied on this discussion forum to check on me.
Please keep us updated.
Syl
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Hi Mallory -
And a belated welcome to you from NJ!
I'd like to echo what Syl said, you will definitely need someone to help you out, at least for the first few weeks. No matter how smoothly your surgery goes (and hopefully it will be text-book) you will still tire very easily, may have balance problems, and may be on various meds that impede your abilites. Really, if at all possible, don't try to go this alone.
Meanwhile, welcome again - you've found a wonderful supportive group of people here who can all relate, first hand, with what you are feeling and experiencing. You're among friends.
Debbi
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Hi Mallory
Welcome. Everyone here is great support they are like a family. I am glad you found it.
Like you I am waiting on surgery. Coming to this forum helps with the anxiety of it all. It's all overwhelming at first know thatyou are not alone.
Sam
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:)Hey Mallory .........1. AN is fairly common, most the times benign......2. There is an excellent set of questions from the ANA on what one goes thru. These pamphlets really helped me b4 and after surgery. My surgery date was 12/3 07 so im coming up on 8 months pretty soon.
The list of side affects are real long........but thats the lawyers. Facial nerve damage is one of the larger inconveniences. Especially for young ladies. Us old guys not as much.
this also isnt something that poof everything returns to normal either. i still cant shut my rt eye all the way, though almost and eating and shaving with no feeling or use over there on the right side has been a pain, but only when i let it get to me.
the BIG deals are they can remove the tumor many ways and its usually benign......... mine was fairly common sized.......5 1/2 hours of surgery and dont worry about the people the first couple days i had no idea who was there anyway.. i was in the hospital for 4 days total..........
a support group has helped a lot ..........and this is an excellent one............ask any questions that might pop up................
welcome
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Mallory,
Cherrypiper makes an excellent point about support groups.
Here is a list of the support groups in Canada - within your province specifically.
http://www.anac.ca/chapters.html)
This is the contact list in Ontario
DHM's edit note (July 25 08) I am deleteing my cut and paste as I am worried about copyright and getting the ANA in doo-de-doo... sooh here is the direct link to the PDF
http://www.anac.ca/endocs/ChapterMeetings.pdf
They have a discussion forum too
http://www.anac.ca/phpbb/index.php
(Although I recognize many of the folks are also chatting on our forum too. Don’t worry when it comes to Acoustic Neuroma tumors and a helping community – there are no political borders. We all help each other out here)
I went to my 1st support group meeting after my surgery (Portland, Oregon) in hindsight I really should have gone BEFORE my surgery. Many people have much experience, wisdom and understanding to impart. ON my vacation to Canada I might just show up to one of the meeting. Let’s just call it “acoustic neuroma tourism� ;)…
Remember you do not have to go through this solo.
Keep moving forward.
DHM
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Thanks for all your kind replies.
I had a meeting with the surgeon the other day and found out that it's not an AN like they originally thought, and it's actually a jugular foramen schwannoma. I'm not sure if that disqualifies me from being here! But I thought I'd put it out there to see if anyone has information or could point me somewhere, since I'm having a harder time finding information on this one.
He said that it's 3.5x2.5cm so radiation isn't really an option at this point.
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Wow - you like to be unique, huh? I've never heard of that one myself, so I don't think I can offer and words of wisdom on it. There's got to be something on the internet about it - it just may take some digging around to find it.
And you'll always be welcome here! There are a few other "unique" folks out there along with us boring, old AN-er's!
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Mallory-
Ditto what Lori said - you're always welcome here!
Debbi, another boring "old" an-er
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From Winipedia: The jugular foramen, a large aperture in the base of the skull. It is located behind the carotid canal and is formed in front by the petrous portion of the temporal, and behind by the occipital; it is generally larger on the right than on the left side.
http://en.wikipedia.org/wiki/Image:Foramenjugulare.PNG (http://en.wikipedia.org/wiki/Image:Foramenjugulare.PNG)
Basically it's another type of neuroma in the cranial region, so you're still welcome, Mallory. :)
Jim
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There is no way i would have made it without help especially driving to dr's and therapy,etc,basically anything for at least 6 months.
you probably dont want to hear it but truth of the matter is, depending on the outcome you might want to start working on being dependent on family and friends,because it can be a rough road.
i hope you dont have to go through it and i will pray that everything works out positive on your recovery.
please dont shoot the messenger. i dont mean to sound negative ,just the harsh truth,which you need to know going in.