ANA Discussion Forum
General Category => AN Issues => Topic started by: skamper on December 15, 2009, 11:02:08 pm
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I just found out this morning that I have a 2.4 cm (large acoustic neuroma). I have been having right sided facial numbness for a few months now. It started out as just being my lips were numbs and has moved up the right side of my face. It feels like I've been injected with novicane. I don't go to the neurosurgeon until Friday and now I am freaking out. I've tried looking up things on this, but it scares me even more. My reading of my MRI also says is right cerebello-pontine angle cistern compressing brachium pontis and lateral side of the belly of the pons extending into and filling the right internal auditory.
Does anyone know if this will require surgery or is there alternate options? I'm just having such difficulties not knowing until Friday. I am already a worry some person and know I'm scared to death.
If anyone can please help or ease my mind in any way that would be awesome. I am only 40 years old and can't believe it. I don't think I have any hearing loss as of yet, I am off balance a lot though and have many headaches.
Thanks in advance for any support.
Sincerely,
Susan
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Dear Susan,
Sorry you have received this diagnosis but welcome to the forum. I am also a newbie and will have treatment next year. It's normal to be scared, I know I am, along with sad, angry, etc. but this forum is a great place to find support either through posting or just reading and the more I learn the better I feel.
I believe that at 2.4cm you may well be a candidate for radiation/radiosurgery as well as microsurgery. Kate B and others have a great website that helps explain the different treatment types http://anworld.com/
There are many people on this forum with AN's a similar size to yours, some of whom have had surgery and others radiation. If you look at the signatures of people who are post-treatment you can often see what their decision was. Hopefully some of them will chime in with their thoughts, but you should speak to specialists from each area who can look at your scans, before making the decision which type of treatment is right for you.
Good luck on friday with the specialist,
Kate
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Hang in there Girl. Friday isn't that far off. Welcome to the forum. Sorry to have to say that, but also happy you found the forum and the folks here.
I was diagnosed in April with a 2.9 cm AN left side. Minimal hearing loss, numbness in the left lip, spread to the face, tingling left tongue, my headaches have subsided over the past 6 months, but I do have balance issues as well.
Kate is right, hang out, read what you can. The more you know going to the doctor the better off you are. I've postponed surgery twice while I continue to search for the right answer. You will know it when it comes to you.
In the meantime, know that these tumours grow slowly as a general rule of thumb. You have time. I'm 44 and I have a 7 year old girl and a 4 year old boy. The last thing I thought this was, was a tumour. We all know or have felt at least some of what you are feeling right now. You are among friends here. Welcome.
Nikki
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Hi Susan and welcome to the Forum ;D
An acoustic neuroma of your size usually means that you have a choice of radiation (limit is generally 3 cms) or surgery. However, the location of your tumor will have some bearing on this.
You should contact the ANA for their informational literature - it will explain a lot of things about ANs and in very easy to understand terms. The ANA will also send you a WTT (willing to talk) list with contact information for others who are willing to talk about their AN experience. The Forum is a great resource also, so please don't hesitate to ask us anything.
While 40 is young, it's a common age for people to be diagnosed with ANs. I was 45 1/2 at the time I was diagnosed. It's also natural to be scaried, worried, nervous, and frightened, but please know that you'll get through this. We're here to help.
Best,
Jan
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Hi Susan and welcome :) I'm sorry to hear of your diagnosis but you're definitely in the right spot for help and support. I had a 2.1cm AN and had it removed last April via a Trans-lab surgery that removed my hearing in that ear with it. Thats not the only option though so read as much as you can. Somewhere around here is a list of questions that are helpful to ask your doctor when you see him/her for the first time. I'll do a quick search and see if I can find it. I am also 40 this year and I have four little kiddos (ages 6, 6, 4, and 1-1/2). Take a deep breath, you're among friends. :)
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Hi Susan .....
Adding my welcome to this forum of many caring, supportive friends.
As others have said, with the size AN you have, you should have some choices for treatment. As Jan said, the location of your tumor is as much involved as size in treatment options. Do your research and at some point, you will know which option is the best one. I do not know where you live, but I would urge you to seek out the best medical professionals you can ...... ones with much experience with ANs specifically. Because ANs are relatively rare, not all neurosurgeons or ENTs have seen very many of them. You want someone with extensive experience, even if it means traveling out of state (or country).
Ask any and all questions ..... that is why we are here ..... and do send for the ANA materials, they will help greatly with information and reassurance.
Best thoughts. Clarice
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Hi Susan,
I wanted to extend my welcome too, but say I'm sorry you need to be here. The AN diagnosis is a frightening one, but you've found a wonderful place for information, understanding and comfort. Feel free to ask any questions or just vent when you need to. At 2.4 cm you would probably have the option of stereotactic radiosurgery or microsurgery, but as Jan pointed out, options can sometimes be limited based on the location of your AN. The best person to answer that question is your doctor. The information packet you can get from ANA (also mentioned by Jan) will answer a lost of your questions, as well as giving you questions you should ask whomever you see for an opinion. It is a good idea to see surgeons as well as radiation oncologists, as well as doing your own research so that you can get a really good understanding of the pros and cons of each type of treatment in order to make an informed decision. Please feel free to ask any questions or just come here to vent, we are here to help however we can.
Wendy
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Here are the questions, right off of the ANA website (here): http://www.anausa.org/questions_for_physician.shtml
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Hi Susan! As you can see there are many here with the same type of AN you have. At 2.4 according to guidlines your AN is not under large but is considered medium. Watching + Waiting for me and meeting so many people with AN`s who have been treated with todays technology I`ve seen so many favorable outcomes. Take your time and do your research then make your choices. Everything is going to be alright! Best Wishes, Mickey
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Susan,
Welcome to our little exclusive club! You've found the right place. As others have said, it's perfectly normal to be freaking out a little until you get more answers for your exact situation. Heck, I was conviced I was going to die when I first found out. The people on this forum went a LONG way to reassure me that I wasn't going to die and in fact I'd go on to have a normal, happy, productive albeit a bit more adventurous life.
As others have said, being at 2.4 cm, then the size would put it in the "Medium" category. With generally speaking the limit for radiation being 3cm, then you should be well within the range to do that but it depends now on the location. Talk to the doctor on Friday about what options he thinks you have. Keep in mind that generally, surgeons will recommend surgery and radiation doctors will recommend radiation. That's what they know and are comfortable with. I would suggest getting several opinions (from surgeons and radiation doctors) that specialize in AN treatments. Experience is key. Find out how many others they've treated for Acoustic Neuromas. You don't want to be someone's guinnea pig, if you know what I mean.
Also, you can get a free phone consultation from House Clinic in LA. They're primarily surgeons, however they're regarded as some of the best in the country for AN surgery. Here's the info:
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
Things will definitely be okay.. We're here to help you get to that place (and beyond)..
Regards,
Brian
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Hello and welcome, Susan ~
I'm sorry you have to deal with an acoustic neuroma diagnosis but I'm glad that you found the ANA website and these discussion forums. You'll receive tons of good information and advice here from folks who have been exactly where you are, today: diagnosed, worried and a bit frightened about what will happen. The good news is that you have a benign tumor that is treatable. Whether that treatment comes in the form of surgery or radiation is yet to be known but your consult on Friday should give you some direction. Please don't take as 'gospel' what any individual doctor may tell you is the 'best' treatment for you. Doctors sometimes harbor biases. Those that prefer surgery will find lots of reasons why you shouldn't consider radiation. Some will use your relative youth as a rationale. Those physicians that prefer radiation treatment for ANs will likely discourage you from undergoing surgery, listing all the possible problems that could ensue, such as infection. Both schools have some valid points and both have some skewed information that supports their bias. Fortunately, there are many doctors that treat acoustic neuromas that will honestly present both radiation and surgery as viable choices. I hope you'll find doctors like that. Meanwhile, please consider these forums as a resource and ask any question, no matter how seemingly insignificant. We're not doctors but we do have a wealth of collective practical experience dealing with an acoustic neuroma and it's inherent challenges.
You've already received much information and advice on this thread and I won't attempt to add much more to it, except to advise you to 'take a breath' and try to focus your energies on what you'll want to ask the doctor (write it down) and that, if treated, an acoustic neuroma is not fatal and life can go on pretty much the same once it has been treated. Although some lifestyle changes are inevitable, in most cases, they're relatively small. In some ways, you'll probably be a better person once you've gone through your treatment, only because an acoustic neuroma can often force us to rise to the occasion and deal with something that is a type of test of our character. Of course, there are probably easier ways to build up our character, but this is what you have to face and although it may present some challenges, it can be conquered. Most of our members have done so or are in the process of doing so.
We're here to help, advise and support you as much as we're able. Consider this website/forum a safe harbor as you go forth to do battle with this intruder.
Jim
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Hi Susan My AN was 2.2CM in September and has shown some slow growth.Currently I have been in wait and watch mode for 2 years now and will eventually need treatment. The Doctors at Massachusettes Eye and Ear Infimary (MEEI) have been great. Find experianced doctors and consider your options. I tell family and friends that my tumor is not malignant and that I will be OK and so will you. Peace Dave J
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Wow~thank you so much to everyone who has written to my post! This was way more than I ever expected. I know Friday will be here before I know it and I will get some questions answered. I will look into the questions I need to ask, and I will look into different avenues of treatment. I work at an Oncology clinic who has two radiology oncologists. Would they be helpful in this matter?
I live in Nebraska and my first appt is with Dr Doug Long and Midwest Neuro Center. Does anyone know of this doctor or center?
I promise to keep everyone posted and will continue to read other posts on this amazing forum.
Thanks again to everyone and wish me luck.
God bless and peace,
Susan
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Susan,
radiation oncologists definitely will be of help. If they utilize gamma knife, cyber knife, FSR, proton beam or any other radiation method specifically in the treatment of acoustic neuroma's then they will be of particular help. If they aren't experieced in the treatment of ANs, then they still may be of help with question about the procedure, radiation types, realistic expectations of possible outcomes, etc. Definitely ask them about things.
Friday is around the corner. Good luck and keep us updated.
Regards,
Brian
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Thanks, I will be keeping my fingers crossed and my mind open for any options. I will try and research tomorrow and have my questions ready.
It is so nice to have this forum to talk to people who are going through this or have already been through this. It felt like a knife in my back when I found out. After all, who would guess it would be a tumor.
I will keep everyone updated.
Sue
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Susan -
you should look into both radiation and surgery before making your choice. I don't know of Dr. Long and didn't find any posts about him on the forum except one by Alicia who ultimately went to House (HEI) in Los Angeles.
While HEI is no doubt a great place, it's a long way to travel, especially when there are probably some doctors much closer to home. You should look into Cheryl R's doctor @ the University of Iowa (Dr. Gantz). The group I went to is in the Chicago-area (not especially close to Nebraska, but not as far as California) and they do both radiation and surgery. If you'd like more information on them, please PM me.
Just my two cents,
Jan
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Susan, what part of Neb are you in? I am in Iowa near Ames and do make the trek to Iowa City to the Univ of Iowa and Dr Bruce Gantz. www.uihealthcare.com There are several from the forum who have had surgery there and they do aprox 60 a year and have for many years. I unfortunately have NF2 and have been thru 4 surgeries and feel very lucky we have him in Iowa. He is not big on radiation so if that is a possibilty would need to see someone else. Much of ones outcome has to do with tumor size and location,besides the surgeon experience.
Good luck in your AN journey, Cheryl R
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Thanks everyone, I've been so frazzled I almost forgot to post.
Well, the Neurosurgeon says gammaknife or surgery. Wait and watch isn't an option because of size and location and my symptoms already. I think the tumor is sitting in a bad place and pushing on the nerve that is making my face numb. I need to go see Dr. Gary Moore who is a specialist in Otology/Neurotology and Otolaryngology. He will test my hearing and balance on the 30th.
Dr. Long does both the gamma and surgery so he isn't bias either way, radiation or surgery. He said it should come out, he didn't recommend the gamma even though he can perform that procedure. Because of the location gamma wasn't his first option. I will be doing research to see what I feel best with doing. I'm pretty scared about either option, I find myself crying all the time for no reason. I know it must be killing my husband as well, he trys to stay strong though.
I need to find out what my timeframe is though, I forgot to ask when they think it needs to be done. I'm scared I will lose my hearing in my right ear, and I'm also scared of facial paraylsis. Both, I was told could happen. I just don't know what to do. I had to quit researching it for awhile to give my brain and my nerves a break.
I will keep you posted as to my researches.
Thanks to all my new friends for your prayers and support, it has helped me a great deal, more than I will ever be able to tell you.
Susan ???
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Hi Susan,
I hope you read the PM from Donnalynn, and that she offered to talk to you by phone. I had the pleasure of speaking to here not long ago, and I can tell you it's worth it, she is a true sweetheart. :-*
I'm sure this whole thing seems like an enormous deal to you, and it is indeed a serious medical event. But if you look around on this forum, you should realize there are lots of people who have been through the same thing. They may have this or that symptom left over after treatment, and may have had some adjusting to do, but most of them are doing great, and living wonderful rich lives despite it all.
So ease your mind a little. You will make it through, and life afterwards will be good. Different maybe, but good nevertheless. You'll see.
And welcome to the best AN forum you can find anywhere. ;)
Steve
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Susan~
OK...who knows WHERE I have been but I didn't see this until today! So sorry that I was not here early on to give you a great big Texas welcome!! ;) Sounds like you have received some great info and support already. Just like you have been told, take a deep breath and a break when this gets overwhelming. I am a firm believer in "gut feelings" (& w/o sounding like a religious fanatic, I feel like it is a nudging from above) - when you find the right treatment and the right guy (gal), you will just KNOW it. We are here for you and would be happy to answer ANY questions that you have - no question is too big, small, private, dumb, etc. on here - we've discussed just about everything! I would be more than happy to give you a call if you would like to chat with someone who has "been there" - just PM me a good time to call and your number (right now I can talk anytime since school is out & we have no outside activities!). I am ALMOST 40 also and had my surgery when I was only 25 for a "huge" tumor...Look forwar to hearing more from you...
K ;D
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Hi Susan,
I hope you read the PM from Donnalynn, and that she offered to talk to you by phone. I had the pleasure of speaking to here not long ago, and I can tell you it's worth it, she is a true sweetheart. :-*
I'm sure this whole thing seems like an enormous deal to you, and it is indeed a serious medical event. But if you look around on this forum, you should realize there are lots of people who have been through the same thing. They may have this or that symptom left over after treatment, and may have had some adjusting to do, but most of them are doing great, and living wonderful rich lives despite it all.
So ease your mind a little. You will make it through, and life afterwards will be good. Different maybe, but good nevertheless. You'll see.
And welcome to the best AN forum you can find anywhere. ;)
Steve
Hi Susan, As Steve said, this is the best forum - the folks here are FANATASTIC!
I know this is alot to absorb quickly. So make sure you take some time for yourself and take a break from it all.
When you are ready, find the best doctors you can, who treat ANs, and go with your 'gut' feeling.
You can do it - stay strong!
My thoughts and prayers are with you and your family.
Sincerely,
Sue
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Hi Susan,
Sorry I am late in replying. I am sorry that you are going through this but this is a great place to talk about it. It's great that you have all the options available. It is overwhelming. I felt like you did at the beginning and ended up with a lot of anxiety that frankly got me nowhere as at the end of the day, you still need to deal with it. lYou need to take a step back and digest what is happening and come to an understanding that there is treatment and the tumor is benign. The symptoms could be very annoying. One thing I was told when I was put on W and W is that just because you may want to consider treatment right away, it does not mean that symptoms will go away. As you know these tumors are in a very sensitive area and there are a lot of nerves in the area that are responsible for hearing, facial function etc. The MRIs you need to continue doing in any case. Although you have been advised to have treatment right away, because these tumors are very slow growing, I still think you have some time available to research your options. You will see on this forum, that everyone has done fine, some have had bigger steps to climb than others, but still made it. Hang in there and we will be right there behind you. Good luck.
Vivian
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Thanks everyone, I've been so frazzled I almost forgot to post.
Well, the Neurosurgeon says gammaknife or surgery. Wait and watch isn't an option because of size and location and my symptoms already. I think the tumor is sitting in a bad place and pushing on the nerve that is making my face numb. I need to go see Dr. Gary Moore who is a specialist in Otology/Neurotology and Otolaryngology. He will test my hearing and balance on the 30th.
Dr. Long does both the gamma and surgery so he isn't bias either way, radiation or surgery. He said it should come out, he didn't recommend the gamma even though he can perform that procedure. Because of the location gamma wasn't his first option. I will be doing research to see what I feel best with doing. I'm pretty scared about either option, I find myself crying all the time for no reason. I know it must be killing my husband as well, he trys to stay strong though.
I need to find out what my timeframe is though, I forgot to ask when they think it needs to be done. I'm scared I will lose my hearing in my right ear, and I'm also scared of facial paraylsis. Both, I was told could happen. I just don't know what to do. I had to quit researching it for awhile to give my brain and my nerves a break.
I will keep you posted as to my researches.
Thanks to all my new friends for your prayers and support, it has helped me a great deal, more than I will ever be able to tell you.
Susan ???
Hi Susan,
I'm a newbie on the forum also, and your AN seems to be remarkably similar to mine:
http://anausa.org/forum/index.php?topic=11350.0
I'm starting to experience similar symptoms, also: mild headaches, slight puffiness on my left cheek and a little numbness on my left lip (Xmas eve mild tremor on lip 3 seconds). I just wanted to let you know that I *do* have the option for radiation CyberKnife, so I'll avail myself of that over surgery any day. Obviously, I don't know what differentiates your AN location from mine, but it's under 3CM so why do you *have* to have surgery?
I'll be praying for you Susan. Nice to meet you...sort of :(
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Guitarman,
I wasn't necessarily told I had to have the surgery, I think the doc's thought that was the better way to go. He suggested gammaknife as well. He didn't sound so sure of that though, he does do both. I have sent him questions and hope to hear from him this week to see exactly what my options and timeline are. My facial numbness seem to be pretty bad. Sometimes I feel like I'm drooling, not sure that I really am though. On Wed I will see what my hearing loss really is and they will also check my balance. I know for a fact that it's off, I somewhat tip over a lot. It sucks.
Did you say your sleep pattern changed? Are you tired all the time or is it that you can't sleep? I find myself tired all the time. The doctor's gave me zanax to try and calm my nerves, but I was tired even before all that. I have headaches quite often too.
When you have your cyberknife and where?
Thanks for the prayers and good luck to you too!
Susan
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Quickly, I just wanted to ask if anyone had slurred speech before radiation or surgery? I seem to find myself stumbling over words or combining two words and spitting it out as one. I always just thought I was talking too fast for my brain to catch up with me, but lately it seems to be worse. I sometimes just can't spit the word I want out. Does this have anything to do with my AN? I was going to try and researc it but thought maybe someone else had this too.
Thanks for any help with this.
Happy Holidays to all,
Susan ???
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Here is one older post on this question, there are several:
http://anausa.org/forum/index.php?topic=4161.0
The short answer is yes, stumbling over words is quite common. Something about the brain being too busy trying to figure out balance, hearing, etc. and not having enough time to spend on talking. :)
Steve
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Guitarman,
I wasn't necessarily told I had to have the surgery, I think the doc's thought that was the better way to go. He suggested gammaknife as well. He didn't sound so sure of that though, he does do both. I have sent him questions and hope to hear from him this week to see exactly what my options and timeline are. My facial numbness seem to be pretty bad. Sometimes I feel like I'm drooling, not sure that I really am though. On Wed I will see what my hearing loss really is and they will also check my balance. I know for a fact that it's off, I somewhat tip over a lot. It sucks.
Did you say your sleep pattern changed? Are you tired all the time or is it that you can't sleep? I find myself tired all the time. The doctor's gave me zanax to try and calm my nerves, but I was tired even before all that. I have headaches quite often too.
When you have your cyberknife and where?
Thanks for the prayers and good luck to you too!
Susan
Susan,
It's only over the last month or so (just after my last MRI) that that my similar symptoms started to manifest: the facial numbness (tingling) has started accompanied by the sense that I'm drooling on the corner of my lip...and, the headaches have started. I've always had a stiff neck because of my driving job, but now very mild headaches are cropping up just to the corner of my eye. Sleeping habits: Well, those have always been spotty for me because I work long hour days I typically only get around six hours of sleep. Over the last couple of weeks, I've only been getting around five hours--right on the dot! Weird! I'm not unsteady, yet. ::)
I don't know yet when my treatment will begin: I'm to see my doctor on the 7th.
All the best
guitarmn
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Hi Susan and welcome!
Scary isn't it - don't worry with knowledge comes power!
I was 44 when I was diagnosed. I had facial numbness, fullness in the ear but no hearing loss.
Did they say how large your tumour is?
There is tons to read here but don't let things overwhelm you. When you have had enough go off of the site take a break.
We are here for you!
Michelle ;D
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Quickly, I just wanted to ask if anyone had slurred speech before radiation or surgery? I seem to find myself stumbling over words or combining two words and spitting it out as one. I always just thought I was talking too fast for my brain to catch up with me, but lately it seems to be worse. I sometimes just can't spit the word I want out. Does this have anything to do with my AN? I was going to try and researc it but thought maybe someone else had this too.
Thanks for any help with this.
Happy Holidays to all,
Susan ???
This happened to me for a couple years before I knew about my AN. It seems better now, if I catch myself doing it I stop and purposely go back and say what I mean sort of retraining my brain. Oh the things that can be attributed to the AN!
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Hi Susan ~ just thought I would post here to let everyone else know we are in contact.
If your slurring has worsened since your diagnosis, it is probably just being overwhelmed and not being able to think straight. You have so many things running through your mind.
Keep us posted on your appointment tomorrow ;) Alicia
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Thanks Alicia,
I just sent you an email and a picture of my girls and I! I will let everyone know how my appt goes with Dr. Moore tomorrow.
I have found that I slur my words more since finding out, my husband says I'm just stressed! I guess it's true, I just need to slow down and take a deep breath.
Thanks everyone for keeping my spirits up these last couple of weeks, I don't know what I would have done without this forum. Will keep you posted!
Love
Susan
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Hello all,
Went to see Dr. Moore this morning for what I thought was going to be my balance and hearing test. It was just the evaluation and to go over things. The testing is scheduled for the 7th. I can't believe how long that testing will take and what all they have to do. I'm pretty sure I failed the very simple balance test though. I couldn't even stand heal to toe with my eyes closed for more than 3 seconds before I tipped and had to put my foot out. Of course the Doc was their so I didn't fall and caught me. It was awful to see the look on my husbands face. I think he had no idea I had lost so much of my balance already. I can't believe your body can compensate for itself so well.
Kinda scared for all the testing, in a way, I don't know if I want to know how much of anything I've lost. It's a scary feeling to think I could be deaf in one ear and not have ever noticed it, I actually feel stupid in a way. How did I go so long and not realize any of this? Could I have caught it sooner? The doc said the tumor is the size of a golf ball and is really pushing on my facial nerve, which explains the numbness. I think he suggesting it come out sooner than later. I asked if waiting till June would be okay and he said he didn't know if we should really wait that long. He told us to go home and check our calendars. He did make it seem like the test results will make a difference too.
Do they worry about things going wrong at this stage of the game? Am I reading too much into this? I guess it was just a little overwhelming to hear all the technical mumble jumble today.
Will keep everyone posted.
Happy New Year to everyone
Peace
Susan
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Do they worry about things going wrong at this stage of the game?
Hi Susan,
I don't think you are at risk for the sort of thing that would put you in the emergency room. But it does seem that the AN has already done some nerve damage, and that it is inclined to do some more. There is not much point in waiting around to see how bad it might get, particularly if it is hitting a facial nerve. Once you have done the tests and know where you stand, it makes sense to me to go ahead with treatment. If you are going to have treatment, then generally speaking, the sooner the better.
Don't fret about not catching it sooner. It is easy to chalk up many symptoms to aging, we have all done that. When we find that we need glasses to read our watch as we get older, we don't think "I must have a brain tumor," we just think the parts are starting to wear out.
Happy New Year and Peace to you as well.
Steve
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Wow Steve, I just looked at the calendar, pretty impressive. That's awesome how this group is so caring. I like that everyone's anniversaries and upcoming things are on there. I bet that helps people be more supportive.
Well, we celebrated my birthday a couple days early tonight. My brother and his family were in town so we had cake and ice cream with them at my parents. It got my mind off of things for ahwile. My real birthday is Monday, I will be 41, I feel so old :o
I will post more after my next appt for the hearing and balance tests. Hopefully it won't be so bad. The tests sound horrible! Are they really that bad? Anyone want to update with info if they've done them? Thanks, Susan
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Thanks Donnalynn,
That makes me feel a little better. Of course we are in for more snow that same morning. Great, like the foot of snow already out there isn't enough, more to come. Hopefully I will still make it to my appt. It's been so cold here, it's crazy. It will take us months to get rid of this white stuff!!
Did anyone have actually ear pain in the an ear? I've been noticing a dull pain in an ear since about last week sometime. It sorta feels like an ear infection, but not all the time. It feels likes it's in the outer part more so than in my ear. Could this be something totally different and unrelated?
Thanks,
Susan
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I had ear pain too...after the diagnosis! Not sure if you are just more aware of it or if it is the crying! Really. The pain, twitching, and numbness could just be indicators of strain. There are other nerves that are affected by this tumor that can cause pain...shooting pains...others will chime in.
HAPPY BIRTHDAY
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Susan .....
I can remember suddenly developing ear pain after I learned the diagnosis. So much so that my ENT gave me some cortisone drops to put in it until I had my neuro consult. In my case, I am convinced it was a panic reaction and not actually a problem. You need to have it checked, however.
Clarice
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Thanks for the insight on the ear pain. I sometimes think it's just because I now of these things, that I have all of it. I know the pain is real, I just think I pushed it aside for so long and ignored it, or chalked up to something silly. Usually I blame everything on sinus issues. I guess that's not my case now.
I did realize today that my numbness is to my scalp line on the right side. I went to stratch my head while driving tonight and realized it felt numb. I think I scared my 14 year old a little when I shouted, oh crap, my head is numb too. She told me she better practice driving incase of an emergency and I might need to her too. She is so sweet and caring, I'm so scared to see how they will react to their mom being so sick and helpless after surgery. My oldest is a sweetheart and it's going to break her heart! My little one might not quite understand so much, that will be a blessing, she will just know I'm sick and need rest. My middle one is tough, she will hold it in and try to act like she's find with it all and then will eventually breakdown. I know my girls all too well. They are my life and I love them. I couldn't see my life worth living without them. My hubby will be my rock, I know he will, he's scared, I know, but he will stay strong for the girls, after all, he's their daddy!!!
Okay, gotta go, tears have started to flow again!!!! Sorry about the mushy stuff, I get that way now and again.
I hope to have answers Thursday after my tests if I don't get snowed in.
I did enjoy my B-day today!!!!
Peace
Susan ::)
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Susan,
I'm so sorry about your diagnosis. I'm also a mother of two little children (3 1/2 and 6 1/2) and just had my AN surgically removed on 12/14 of this year. It was a little scary for them, but I tried to tell them honestly what to expect while still being age-appropriate. What kids really want to know is that you will be ok. I don't know the ages of your children, but I bought my 6 1/2 year old a wonderful book about being in the hospital and what happens there. I think it took away a lot of the fear of the unknown for her. When I got home, she wanted to know where they put my IV and asked me if I got to hold the remote control that moves the bed. She was also excited about bringing me breakfast in bed the first day I was home. So sweet.
I completely understand wanting to shield your children from this, but you might be surprised at how well they take it. Like I said, the most important thing is that you ARE going to be ok. I think most of us went through an initial shock and mourning process after our diagnosis. Once that passes and you are able to digest all of this, things will be better, I promise. My prayers are with you and your family.
Lyn
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Thanks Lyn,
That makes me feel much better. My girls are 9, 13, and 14, so they are old enough to understand.
I might have to reschedule my testing for Thursday. School has already been cancelled for tomorrow and possibly the rest of the week. It's going to be bitterly cold on Thursday with lots of blowing snow. Windchill of -30. I will let everyone know if I make it to my appt or reschedule.
Thanks again for all the continued prayers, it just makes me smile everytime someone writes me back that has been through the same exact emotions I'm going through. I love this forum, sad I'm here, but glad I found you!!
Susan
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So, results of today's testing!!
I have minimal hearing loss to the AN hearing. The dr was quite impressed with that result. I told I feel pressure in that hear all the time and a fullness. She explained it's the size of the tumor pressing down on that nerve.
My balance nerve was another problem in itself. I did pretty good standing and doing the simple test on the flat surface and then the cushion thing. I got to the air in the ear with the google test and my AN ear pretty much had no response. She said I was easily at 90% balance loss if not more. When they did my good ear, I couldn't believe how dizzy you were suppose to get. My AN ear did nothing. She explained that the tumor is pressing on that nerve the most and probably wrapping on it. The facial never so far is good, no lose of that yet. The doctor was quite impressed that I get around as well as I do with no balance on that side. She said she would have never suspected I had that much balance loss when she saw me walk and do the first test. She said most people can't even pass the first one. I guess that's good, after surgery I wouldn't have such a balance issues or the nausea she said that goes with losing balance suddenly.
Now to wait until the appt with Dr Moore on Feb 3. Not sure what to do next. Research more I guess?
Thanks to everyone for your continued support and prayers. It made today a lot easier to handle the results I received..
The weather on the other hand, is out of this world. -22 tonight as a temp. Tomorrow makes the 3rd snow day for the kids, too cold for them to go out.
"I'm a trooper, I will get through this!!"
Susan
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How similar could our results be? Amazing ;)
I am glad you made it there today! Hopefully having another piece to the puzzle helps. Now just keep busy so the Feb. does not seem so far away. Maybe you'll find time to meet up with old friends...maybe some new ones too ;) Alicia
You will get through this!
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Susan,
It sounds like your balance nerve has been fading away for awhile, and you have been gradually adjusting to it. That is good news, it means one less thing to deal with after treatment. I guess the question now is, can you save that hearing?
I hope it continues to go well.
Steve