ANA Discussion Forum
General Category => Inquiries => Topic started by: kenneth_k on September 06, 2008, 05:11:57 am
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Hello everyone.
I was diagnosed with an AN 1,7 X 1,3 X 1,1 CM in NOV last year. I didnt know what was going on in the beginning, besides that something was terribly wrong. I got severe vertigo for some days, which was looked at by different doctors. Their general diagnosis was a virus. It was not untill i met with my military doctor (i see him once a year) that a loss of high pitch hearing was discovered. He sent me to professional ENT's who said a MRI might come in handy, and this is where I discoverede my AN.
In Denmark, treatment of AN is centralised to one place only, and I went to see the professor in charge. He said that most AN's would not grow after discovery and more or less ordered me on "wait and watch" status. I agreed to this, since i didnt have much of a choice.
After a while my symptoms got worse, and i confronted the professor with this. He said he couldnt explain my sympoms, but he would offer me surgery (translabyrintith approach) in order to get me at ease.
My problem in general is this. I feel like **** all of the time, but my collegues at work may not notice. I still have to wait another month, but I really feel like calling in sick already. Does anyone have an experiance in having many un-explainable symptoms but being reluctant to show them because of anxiety on how other people may react(including the professionals)? They cant see it so they dont understand the feeling? Or am I being a whooz?....
My current symptoms are these:
- Unsteadiness
Tinnitus
Frequent headaches
Tilt feeling when eating
General high alertness gusting to panic in demanding situations
Unable to sleep through the night
Pains in the face, OPPOSITE side???
I am going to have my second MRI before surgery on monday, but regardless of the result, I'm considering calling in sick the next four weeks untill surgery. Would that be an advantage to be at ease before surgery? Or would that simply make me more crazy until the final solution to all my problems, maybe... Any comments would be appreciated. Actually, I'm feeling quite alone. Furthermore comforting comments on being SSD would be most welcome, since I'm heading that way.
With the highest regards to You fine people sharing thoughts and making recommendations for others in a difficult situation.
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Kenneth -
hi and welcome. I'm glad you found us. There are lots of us here who will help you not feel alone anymore. And, no, you are NOT a whoose (or however you spell it!)
While not all AN patients have exactly the same symptoms, the balance issues, headaches, facial pain, and tinnitus you are experiencing seem to be common ones. The panic attacks and the trouble sleeping are probably more related to stress and anxiety than the actual tumor.
I don't know how realistic it is to call in sick for 4 weeks until you have surgery, because you will be calling in sick for 4 to 6 weeks post op. I would imagine your employer would not be too happy with that situation and in addition it might make a difficult financial situation for you. Perhaps you should talk to your doctor to see what he can give you to alleviate your symptoms.
The professor who told you ANs typically don't grow after discovery is incorrect. ANs can and do grow, but they typically grow very slowly. In fact, sometimes patients are able to watch and wait for an extended period of time; possibly even years.
It doesn't sound like the military doctor, the ENT, or the professor gave you any factual information on ANs. The ANA has some excellent literature that explains what ANs are, their treatment, the related side-effects, etc. Although you said surgery is your only treatment option, you might like to read this literature. I suggest you contact the ANA and ask them for it.
Good luck, and don't be a stranger,
Jan
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Hi Jan.
I fully apreciate Your response, and it is comforting not to be alone.
However my question was more in the line of:
How do you cope by your symptoms and when enough is "enough".
Dont feel worried about my salary, it is the same either i'm healthy, on vacation or sick.
But how do You explain to the environment, that you are in way above your head, and that you need "off-time".
I am a soldier and we normally do not show any sign of weakness.
Any strategies on "leave me alone" in a dignified mannor?
Besides, I still need comforting advice on being SSD.
I've tried local litterature, but they all say, loss of 3D, but otherwise copable.
(Pls excuse spelling and such, not the native tongue, but this is the best forum I've discovered.
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Sorry for missing some of your concerns in my first post.
I don't think that asking for time off or admitting you are feeling like sh*t makes you weak. Yes, you are a soldier, but you are also human and you have a brain tumor. Although it's not cancerous, it's not a head cold either.
I don't know if you can share that information with your superiors and get the time off that you feel you need, but if not, can you ask the doctors or the professor to intervene on your behalf? Or is there any possibility of moving your surgery up so you don't have to wait another month? As you say, enough is enough and why should you suffer - either at work, or not at work - if you don't have to?
I had my surgery approximately 6 weeks after I was diagnosed, so unfortunately, I'm not a good source of coping strategies. I barely had time to get my life - work, kids, etc., - in order before I was hospitalized. But I'm sure others will respond to your post who have some very good coping ideas.
I am SSD and have been since my surgery. There are a few ways to cope with it. Some just adjust to their new "normal" and get on with their lives very well; others opt for a hearing aid of some kind. I have a BAHA (bone attached hearing aid) which I absolutely love because I found that I personally hated being SSD - but that is me; it might not be you. The BAHA has been a tremendous asset for me. There is also another hearing aid called a TransEar that others have opted for and they are quite happy with the results.
I don't know if they have BAHAs and TransEars in Denmark, but here are a few links that describe each one. http://www.umm.edu/otolaryngology/baha.htm http://www.transear.com/
Hopefully this response is more helpful to you than my first one :)
Jan
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Denmark has an army??? ;) Sorry, Kenneth. That's sort of the antithesis of my impression of Denmark. Anyway, welcome to the Forum. As Jan said, you were given some misinformation about ANs. They do grow. Why would it stop after being diagnosed. My ENT guessed that I mine had been growing for 10 years or so before it got to a 1.5cm. And as far as coping. I'm an actor. Before I was diagnosed, I was having trouble hitting marks and a little trouble driving and occasional dizziness. I had tinnitus for 20 years -- which was the toughest thing to cope with. But all managable. I would think though, that being a soldier, vertigo would be an issue. Does your commander know your situation?
As far as being SSD, not really a big deal. I've been SSD for the most part for 23 years. You adapt. You learn where to sit at a table. What side to be on when you're walking with someone. You learn to read lips. The biggest issue for me is people who mumble. After about 15 years of putting up with them, I finally started ignoring them. The only other issue is stereo headphones. They don't work. But what do you do in the military? If complete hearing is a necessity, that could be an issue and as Jan said, you may want to look into a BAHA.
Best wishes and good luck with your MRI.
David
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But how do You explain to the environment, that you are in way above your head, and that you need "off-time".
I am a soldier and we normally do not show any sign of weakness.
Hi Kenneth,
There is a big difference between showing signs of weakness and being a smart soldier. If you encountered an invading Russian tank division, you would be expected to call in for reinforcements and air support, not take them on single-handed.
This diagnosis is not something you can handle on your own. The right thing to do is follow procedure, which means take the appropriate amount of time off, and get it treated by medical professionals. If you inform your colleagues of your diagnosis, they will ask how it feels, and you can explain some of your odd symptoms. They will most likely be impressed that you are handling it so well.
Generally speaking, once they find out that you will survive, they will accept it as the new normal and move on. The challenge for you will be to do the same thing, which will take longer, but you will make it. Lots of people have gone through this, and one way or another, gone on to have full and productive lives afterwards.
Staying active is generally considered a good thing prior to treatment. My own preference would be to keep working until about a week before, because I would go nuts sitting around with nothing to do. That depends entirely on how much time you need to feel rested and ready.
Best wishes and welcome to the forum.
Steve
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Hi Kenneth and welcome.
I think you are the second forum newcomer from Denmark in the past few weeks. I just throw that in because I've always wanted to go to Denmark and I'm working on my connections! :D
Seriously, though. I don't think it shows any weakness at all on your part to admit that this is a big thing to deal with. I think it would be a benefit to those you work with to know that you are not distracted by other things that may keep you from doing your job. My husband is in the military here in the US and I know when I was diagnosed and had my surgery, they were pretty good about giving him time off. Their thoughts are that you can't be performing 100% if you are overwhelmed with other things going on in your life that you unfortunately have no control over. If your superiors don't agree with it, then I'm sure you can talk to your doctor to find a solution. I do realize, however, that military "intelligence" is sometimes lacking in the personnel area!
Good luck to you and stay in touch!
Lori
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Hi Kenneth-
First of all, welcome to our little world.
Regards to calling in sick for four weeks before surgery - you may find that it is helpful to keep yourself busy and occupied for this time. If you are home, especially if you are alone, you may have too much time to worry which isn't healthy. That said, if you feel that you simply can't work for these next weeks, then telling your superiors what is going on with your health may be necessary. I found that people were very supportive when I told them what was happening, especially when I was able to tell them that it was NOT cancer and that I would survive just fine!
For me, the hardest time in the process was the time before surgery. I did not sleep well and had a lot of stress and anxiety. I think that is pretty normal, although certainly unpleasant. I found it very helpful to talk to some of the people here on the forum about my fears - you don't have to feel alone.
Regards to SSD - it has only been 4 months since my surgery, but I have not found the SSD to be that difficult. I don't hide the deafness from people, which makes it easier for me to position myself correctly in meetings or at dinner. There are, of course, hearing devices such as BAHA if you find that you really don't like being SSD. From my perspective, though, it hasn't been bad at all.
I hope you can find some time to relax - try to do some fun things for yourself.
Debbi
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Thanks a lot all of You.
My primary concern was SSD and calling in sick before surgery. The last part I guess I will figure out with my local doctor. However, it is nice to hear that SSD is not necessarily the end of the world. To be honest, I dont really trust the doctor's version of the story, but would rather hear the real version from people like me/You. I have tried visiting a danish website, but this is more or less for patients where things have gone terribly wrong. So I tried seaching for patient stories on GOOGLE. but they all more or less sounded like commercials. Therefore, I am happy fore Your responds, because they sound sincere. If You have the time, pls fill in more replies on SSD. Funny stories, experiencies, methods of coping etc.
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Kenneth,
I'm sure we could all write a novel with funny SSD stories! Like holding the telephone up to your deaf ear and wondering what's wrong with the phone. Or hearing someone knocking on the back door of your house, while you go to the front door to see who it is. Or your kids thinking you're always playing a game of hide and seek with them because they think you're joking when you hear them calling you but you can't figure out where they are!
It does get frustrating sometimes, but over time it gets better and you really learn to use your other senses a little more to find your kids or to answer the correct door. And if you don't happen to want to find your kids or answer the door, you can always blame it on that bad ear!
There are a few different hearing aids that can help - they aren't perfect and it won't be like your regular hearing was, but they're quite helpful.
Lori
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Hi Kenneth~
I had been SSD for almost 13 years now and at first I didn't really know of many "aids" so I just got used to the SSD. As others have said, you learn to position yourself at the best place at the table (my friends/family even consider it for me - that makes me feel good) and all the other stuff. Just today I was at a volleyball game and there was another match on the next court. Another mother and I were talking about that game and were looking over there but then she was talking on my deaf side - I could have been at a tennis match for all the "back & forth" I was having to turn my head!! I have TONS of funny stories!! ;D
Welcome!
K
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Kenneth,
Welcome. You are a hero in my eyes. My father was a soldier in World War 2 for Canada and one of my brother's retired from the Canadian army. He was the youngest Master Warrant Officer in his day. One of my friend's son is being deployed to Afghanistan at the end of the month. Anyone who serves their country is a hero. AN is not a sign of weakness. I'm so sorry you have it, but we cannot control what life throws at us. If you need the time off before surgery I say go for it.
Good luck with your decision,
Anne Marie
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Kenneth, we all feel like we are weak when facing these life events. I have a symptom and wonder if it is from the AN or something else, I tend to wind myself up over it. I think if you can get the time off and think that will help with the coping, I say go for it as well but use the time wisely, eat well, exercise and go into the surgery the best you can be. I hope you have found some comfort from this forum, keep us informed. Sending good vibes to Denmark for you.
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Kenneth,
I am 2 months post surgery, and I, too, was worried about how I would handle SSD. (single sided deafness). It sounds scary, but it really isn't that bad.
There are worse things that can happen to us. I've been out in a few situations where I couldn't hear anything that anyone said.......but it was my fault, b/c I didn't request sitting to the right of everyone. We have to speak up, and before we sit down, make sure you are sitting with your good ear towards everyone.
It will work out. Trust all of us. And, later down the road, if you feel you want to try the BAHA or other hearing devices, they have trial things you can wear and see how they feel.
You will get thru this....and I congratulate you for being in the military.
We are all here for you. Ask any questions, and someone will be able to answer them.
I'm grateful to meet you and talk to you.
Lacey
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My coping with the diagnosis was head-on, matter-of-factly. As devasting as this is (brain tumor) I picked it apart: I have what most don't (makes me special), it's slow to grow (could even stop), it's benign (the majority), there's always, always someone worse off than me, do I really want to hide away in fear? (which is what I wanted to do) or do I face this head on, embrace it, welcome it into my life along with all the other oddities it will bring?, like SSD? I chose to embrace this awful diagnosis and when I did that all seemed possible and I also knew walking among those around me who complained about "the little things" and thought were "big things", brought an inward smile to my face at the "little" thing I was dealing with!
I know you too will stand up to this diagnosis and face it head on as you are a soldier who is trained to deal with difficulties. Your second nature will kick in once you accept this and the other little oddities.
Glad you wrote and found--our special club, welcome new member!
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Kenneth,
Welcome to this forum I'm sorry to be a little bit late in putting my my two cents worth. Please don't feal you are being weak if you are feeling overwhelmed right now. For me the initial diagnosis of having an AN was a scary one but I soon realized I could deal with it, could survive it and it would make me stronger. One of the problems with having an acoustic neuroma is that you look perfectly fine to everyone else -- no one can see the things you are feeling so it is hard for them to relate. This can even be true of doctors. The ENT who diagnosed me, for whatever reason, didn't believe me when I told him my dizziness and off balance feeling was getting worse. When I had my next balance test in the surgeon's office it shjowed exactly what I desrcribed -- an increase in balance problems. The point I'm trying to make is doctors are not God -- if one is not helping you move on and find someone who will. I lost most of the hearing in my right ear a month before my surgery. Being SSD is awful for me and I plan to get a BAHA as soon as humanly possible. Many find being SSD is not a problem for them and some do not want further surgery and opt for TransEar. Most people who have either BAHA or TranEar are very happy with them.
Best wishes,
Wendy
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Hi Kenneth,
Since you are fortunate to live in a country where your standard of living won't be compromised, then I agree with others who have said, "take the time off". Both physically and emotionally you have a lot to deal with. Keep us posted.
Best,
Marci
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The military has offered me to call in sick part time. That means that I can stay at home if I feel the need without any deductions in pay. My more offcial business is handed over to the second in command, who will get a higher salory for taking care of my duties. A win-win situation ;) This gives me more time to relax and be prepared for the operation in three weeks.
Once again, thanks for your kind replies.
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A win-win situation ;)
Excellent! I'm glad to hear that you have worked something out, and can be well rested and ready for your procedure.
I have taken the liberty of adding your surgery date to the AN calendar (link below). Best wishes for a great outcome!
Steve
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Hi Kenneth,
I was ready to go home ("sick") the day that i got my diagnosis. That was the end of January. But i had a daughter in daycare so i stuck it out for the rest of the day, my head spinning from the news. It was surreal. I spent the whole weekend on the internet doing research and then back to work on monday. I spent the next few months doing research and meeting with doctors, all the while keeping my 'news' a secret to many of the people in my life - i just needed space to sort it all out. Once i made the decision to have surgery and had a date, i felt better. I did not have any of the nasty symptoms that you mention (only hearing loss and tinnitus) but i sure can't imagine having been at home for a month before surgery... i would have gone crazy with worry and anxiety. And then my surgery date was moved twice, putting it back another 3 weeks. In the end i worked til 5pm on friday and had surgery first thing on monday morning. I was not scared, just anxious to get it behind me and hoping so much that i would be ok after without serious complications.
I also had a CP angle tumor. Mine got pretty big (around 3cm), i guess there was lots of space in there. And very little of it went into the IAC, which i understand was part of the reason that i didnt have any other symptoms.
I hope you can make your way through this without too much more suffering and stress.
Good luck,
Trish
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Iake that time off from work prior
I too took a month off, was at home literally freaking out and being depressed, then my dad came over and was like Lisa ur going to the hospital and they admitted me three weeks prior to surgery.....My tensions subsided and I felt confident..
Just a suggestion, I say go for it, take time off!
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Hi Kenneth,
I'm late to this thread, but wanted to welcome you, however belatedly, and I hope that all is going well with regards to your treatment. I'd love to go to Denmark also. My mother-in-law was of Danish and German heritage and her grandparents (Anderson/Andreasen) were from Praesto area.
Wishing you well in your treatment and recovery,
Sue in Vancouver WA, USA
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Hi
I too have been recently been diagnosed with an AN which is slightly larger than yours (1.7 x 1.3 x 1.2) and I have really bad pain on the other side of my face which pretty much wipes me out some days. I too feel as if I could fall to pieces because I seem to be getting the run around by doctors who cannot tell me what is going on with the non-AN side of my face.
I cannot however take time off work so have been trying to keep going but some days I feel like jumping in a hole and pulling the lid in on myself.
There seem to be some great people on this site who can offer you support and information based on their experience ... they have definitely helped me and I hope they can help you.
Cheers
LuLu
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HI Kenneth
I have just read the response I posted to you and thought I had better cllarify - I totally empathise with you (realte to what you are saying)... my first response sounds a bit distant ... sorry ...am new to the site and to my diagnosis. But I just want to say to you that you are not a whosss (sorry spelling... I think my mental processes are being affected) - this is really scary - I am really scared - and reading the responses from everyone they too were really scared. But everyone seems to be saying there is light at the end of tunnel ... sp please take care of yourself
Lu Lu