ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Karen on November 17, 2009, 06:14:17 pm
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It's been 6 years ago this December that I had my surgery. I have facial paralysis sice my nerve was cut, had double vision and three eye muscle surgeries to fix that. trigeminal damage so I have a numb face and eye, which is also dry, plus balance problems and have had an eye weight put in and taken out. There isn't a day that goes by without thinking about some AN problem or another. My husband says I think about it too much does any one else think about it alot or does it get better with more time? Oh I forgt the deafness on that side! They don't understand why I am so tired at the end of the day and I can't wait to go to bed and shut my eye and not have to put drops in all day long. I was a quiet person before and now crowds really bother me. Any one else this way? Karen
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Hi Karen,
How can you not think about the AN issues everyday! You put eye drops in all day long, I put eye ointment in all day long so of course you think about the AN. Add in the other issues and it's hard not to think about it. I think the part that bothers me the most sometimes is that when I go on vacation or it's a Holiday you don't get away from the AN issues. I find that it's kind of like all things that bother us, if we are having a bad day for some other reason the AN problems seem to bother me more. If things are going well & I'm happy the AN issues don't bother me as much. Keeping busy and having plans & goals really helps too! Yes, crowds bother me & a lot of others on the board, we make adjustments to the situations. I'm guessing your husband is like mine, realizes that because of the surgery you are different now but still loves you a lot so doesn't see you as an AN person, he see's you as his wife so he doesn't think about it as much as you do. He wants you to be happy & not worrying about the AN side affects, but as you know that's easier said than done. I've been dealing with this for 17 years, raised two young men, have a full time job (14 years) & happily married for 31 years. Take Care, Jill
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Karen .....
Anyone with facial involvement, hearing loss, or balance issues is keenly aware of having had an AN ..... it changes our lives forever. Jill had some good things to say about a possible explanation for your husband's reaction. It is very difficult to be the caregiver/partner in life and know that your partner is suffering and dealing with these issues on a daily basis and there is not a thing you can do to change it.
Fatigue is an ever-present issue that cannot be ignored. Jill is right that the more rested you are and yet the more involved you are, the better you will feel. That probably sounds like an impossible combination. However, I hope you can find a meaningful and rewarding project that you can do in stages ..... so you can rest/recoup in between.
I can identify with the crowds being overwhelming. Just this past Sunday we were attending a reception following a concert when all of a sudden the noise and confusion became unbearable and I simply said to my husband "I'll wait for you outside." and left by the closest door. He still has trouble understanding how I can be fine one minute and overwhelmed the next ..... but that's the way it happens.
I have learned to choose which events/activities I think I can handle ..... but I am determined not to become a hermit and withdraw because I know that would not be good for anyone ..... most of all, me.
My thoughts and prayers that you will find relief.
Clarice
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Hi Karen,
Yes, totally understand! And no matter how much you try to "re-educate" your loved ones on how you are just not the same person any more, they forget as time goes on.....
I am totally, all the time thinking of my post AN life.
Facial paralysis, eye issues, deafness, tinnitus. It is there 24/7-when I wake up and when I go to bed. How can i NOT think about it?
I'm totally obsessed with my facial paralysis and am making baby steps to get some sort of smirk, half smile or smile back.-acupuncture is my best friend right now, and I'm getting more movement and tingling along the flat area around the cheek and lip. It keeps me going, this goal I have. I had the 7/12 with partial results, and am aiming for some sort of either static or dynamic lift in 2010.
My loving husband thinks I'm going overboard with the obsession. Yea, maybe in your eyes, but try to be in my shoes for a week and see how YOU feel!!! It's been 3.5 years for me.
It is a long long road....
I try to stay busy and focused, work part time, but still need rest periods. Actually the acupuncture ( I can't say enough about it) is helping everything- my face, fatigue, depression, body aches.
Always an option.
So there are so many here who empathize with you. You are definitely not alone. It's just nice to get on line and validate these emotions, isn't it??????
Take care now,
Maureen
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Karen,
It has been a little over four years for me and I have days I really wish I could be the old me. Then I think about all of the wonderful people I have met because of this AN business and feel very blessed. My family still does not understand that this Wonder Woman has hung up her cape and put away the invisible jet and the boots. I ca no longer be everything to everyone, but I can be me and even though it isn't the same me as BAN (before AN) it is still a very neat me. I decided I like me and they will all just have to adjust.......eventually! When they start questioning and demanding I be more like the old me I just turn a very deaf ear towards them...kind of like giving them a cold shoulder. (((((((((((((((((((((((()))))))))))))))))))))))))))'s to you.
Brenda
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Brenda - you summed it up beautifully!
Karen - I think we all have to go through a process to learn how to be the "new" us. And, so do those around us. So much of what we all have to adapt to is invisible to others (balance, hearing loss, fatigue, dry eye) which makes it harder for them to realize that we have all changed in certain ways. I have learned to speak up when it all gets to be too much. And, yes, I have bad days sometimes where I really miss the way it used to be. It's normal.
Hang in there.
Debbi
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Karen, I think my husband thinks because I am here a whole lot that that is what makes me think too much about having had my surgeries. He doesn't really understand that it is always with me and having to put with them never leaves us. Every day varies with how much they may be bothering us. I call them my annoyance of the day as they may vary from day to day. The last 2 days my nose ran when I ate more than usual. Today not as much. Only occ do I have dry eye in the day and may need to put drops in a couple times. My walking isn't bad at home but can be when go somewhere. Depends on what I am walking on and if it is outside. Can go on and on. I look pretty normal when just look at me. It is just frustrating even though I am very grateful I am not much worse off. So yes we do understand very well how it feels and can be different with what each of us has that is the most problem. Cheryl R
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Thanks for the help. Does accupunture really seem to help? I have tried Reiki massage ( healing type), ThiChi and even meditation. Most days I don't care that much what people think I look like, it's just the facial numbness that really bugs me. It's like going to the dentist and being full of novacaine!!! So when I do talk it feels really stiff. So far I still can't get used to that feeling. I hope that with time that will get better. It is so good to know that other people feel like me. Like you say try walking in my shoes for a day. I do still keep going , I work full-time, have 7 grandkids and still love to shop!!! Most of all I just wish I would feel like I used too. Tried Neurotin but I didn't like that. Karen
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Karen ~
Like everyone that has posted before me, I understand your frustrations and hope you can eventually find some relief for your facial numbness. That your husband, relatives and friends can't seem to understand your exasperation with the facial numbness and fatigue is not that unusual. AN surgical ramifications are unique and since the condition is rare to begin with, few people know anything about it and fewer still can comprehend what you have to deal with on a daily basis and the emotional toll that takes on you. Pain and discomfort are usually not tangible or recognizable to most people and frankly, even when made aware of your discomfort and frustration, there really isn't too much another person can do, except offer you empathy and support. We offer that, here, Karen. It's long distance and 'virtual' but, trust me, it's just as real and sincere as if we were there, in person.
Yes, things do improve and I hope and pray that they will for you. Meanwhile, feel free to vent, ask or share on these forums whenever you wish. We'll acknowledge your comments and the emotions you deal with - and do the best that we can to help and support you.
Jim
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Hi Karen,
Yes, I can say that acupuncture does truly help and is continuing to help my overall well being and the facial paralysis.
It is not for everyone, but there have been some success stories. It is time consuming for me -3x/wk at first, now 2x/wk, and I have to pay out of pocket (they were nice and gave me payment options).
So not feasible for everyone. Plus if you have a fear of needles, not a good thing.
The needles do "ouch" going in, but then I drift off with quiet music, warmed table, dimmed lights. It is very therapeutic.. That takes the place of my "nap." The oxygen/air flow( associated with traditional chinese acupuncture) to the face may provide relief for your facial numbness.
My face is tingly now, as they have finally found a way that works with the needles. They stayed away from the face, focused on needles to the lower calf, which channels the face where I'm flaccid. Now they are going at it from both angles. Little needles in the face, along with the needles in the lower leg. Much better results.I'm optimistic for more tone and movement....
Part of this is trail and error, trying to find what works.
( I don't have facial numbness)
Anyway, my 2 cents worth
Being proactive through all this helps keep me hopeful. That is very important.
So hope this helps you. If you want any more info on acupuncture,send me a PM>
Maureen
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Karen, just wanted to echo what everyone else has said - you're feelings are completely normal. At least, *I* feel the same way, so as normal as that makes it, haha. ;)
I'm only 8.5 weeks postop, and already I think my husband is tired of hearing me talk about AN stuff all the time. I think my mom is the only one who takes my "complaints" seriously (aka, doesn't just shrug or say it's all "in my head"). I just started therapy last week and I think it will really help. A lot of what we talked about was going-back-to-work stuff, as I'm really obsessed/hung up on that right now. I think a lot of has to do with feeling like a "new me"and not wanting to go back to and "old me" job.
Anyway, I wish you luck and if I get any good "nuggets" of info through therapy I'll be sure to pass them along. :)
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Along with this ..... for some of us who look and act the same on the outside, we are not the same on the inside as pre-AN. Therefore, we do not emotionally respond or react like we did before and I know this confuses our family/friends ..... actually us, as well. Sometimes I say to myself, why did I just snap at my husband? The emotional aspect of the recovery process is very different from the physical. But, it does slowly return to a more pre-AN-like life.
Clarice
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I can't add much to what has been said here.
EVERY Day, my life is effected. It may be the now painful background noises that I didn't even hear before. It might be air conditioning blowing in my eye that can't blink or squint right. It might be me bouncing off walls due to my poor balance. It might be laying in bed in what is silence for others but loud buzzing for me. I miss my facial animation. I miss silence.
Please be assured that this isn't something that you can "just let go" and forget about like an appendectomy or tonsilectomy. I try to laugh about things so that I don't cry continuously. Sometimes laughing really helps. Sometimes that just isn't possible and grieving the losses is necessary for a period of time.
Hang in there,
Samantha
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As always...lots of great advice from others. I'm generally not smart enough to offer advice but do have a couple of thoughts sticking to my sole operating brain cell...
If everyone else truly understood what people with AN's go through then we wouldn't have been drawn to this forum and would have missed out on meeting with all the unbelievably wonderful folks that are here. See my signature panel for my theory as to how AN's select which folks to visit.
I'm not entirely sure that the verb "thinking" is the correct verb to use when discussing AN's involvement in our lives. When a balance event happens as I pass through a doorway and I crash into the jamb, I don't "think" about the AN and its effects on me, I live it.
When I started my degree in special education, in one of the first classes I took we did a small exercise. We had to create and live a disability for a short period of time... maneuver a life situation blindfolded, spend the day in a wheel chair, etc. While it didn't truly give the experience because we could end the experiment at any time...it did provide lots of fodder to swirl around our brains. A high attenuation ear plug in one ear can certainly give a person with bilaterally good hearing some things to consider.
..take care... tim b
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So there are so many here who empathize with you. You are definitely not alone. It's just nice to get on line and validate these emotions, isn't it??????
Take care now,
Maureen
This quote says it all...just wanted to add that I support you, and DEFINITELY understand what you are saying. Remember to take loving care of yourself, and don't apologize for doing what you need to do in order to stay emotionally and physically healthy. Easier said than done, but do know there are lots of virtual hugs and well wishes coming at you.
Tricia (horsekayak)
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This forum is so great! Most of you are saying the thoughts that are in my head, but I'm not quite ready to make them real! My family and friends are so ready for me to tell them about how great I'm doing, that I feel so disappointed that I can't live up to that. Because I talk great, and look okay (everyone loves how you can't even see a scar because of my long hair) that that all must add up to the old me. (Which is what I want too!) I'm grateful to be able to come on this forum and see so many other "new me's" trying to deal with all of the same emotions. Thanks for all of the insight and strength you people bring to a horrible time.
Jill
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This forum is so great! Most of you are saying the thoughts that are in my head, but I'm not quite ready to make them real! My family and friends are so ready for me to tell them about how great I'm doing, that I feel so disappointed that I can't live up to that. Because I talk great, and look okay (everyone loves how you can't even see a scar because of my long hair) that that all must add up to the old me. (Which is what I want too!) I'm grateful to be able to come on this forum and see so many other "new me's" trying to deal with all of the same emotions. Thanks for all of the insight and strength you people bring to a horrible time.
Jill
Hi, Wwoodian I tried posting yesterday to your response and lost it somehow ?? Same as you this forum is great I do not feel so left out in the non AN world is the way I have been feeling lately my family and friends just to do understand you look good so you must feel good is the vibes I am getting. Do not ever feel disappointed this is who we are and we have to accept it and not to focus on what others think you have a family of friends here to vent whenever you need to. I keep repeating myself but this forum of people are so compassionate and will never let us feel any different then others do.
Best Wishes,
Pat
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Cheri, thanks I just feel so good when I can help someone and I want everyone to know I do not know what I would have done if I did not find this site.
Regards,
Pat
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Yes Pat! Thanks for the reassurance and support. I love the fact that a common bond which is considered a negative can have the strength to pull so many together.
What a battle this is! I had no idea that it would be so difficult.
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Yes Pat! Thanks for the reassurance and support. I love the fact that a common bond which is considered a negative can have the strength to pull so many together.
What a battle this is! I had no idea that it would be so difficult.
Just try to be positive I know it is difficult but that is so good that you have no hearing loss or facial paralysis I am not sure about the double vision that sounds horrible but hoping in time that will pass. Have you asked if anyone else has experienced that and if so how long did it take to get better....
Best Wishes,
Pat
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Hi Pat,
I know that I need to work on staying more positive. I am grateful for my positive outcomes, I really am! My double vision and jumpy vision are just extremely uncomfortable and also keep me home because I cannot drive. I have gone out a few times (yesterday I went to Costco!), but it is pretty nauseating business. I have heard from a handful of others on here who have had long term double vision. It sounds like it will take months (one person it took 9 months). I guess I'm just in a "wait" scenario. I think it is just more difficult because this wasn't a side effect that I even considered--I have had two Doctors at House say they have never seen it, and that was really scary when I heard that. Obviously, others have had it, but evidently nobody from House. I haven't heard from my Doctor since before Christmas even though we have called him a few times trying to find out about Vestibular Therapy. I guess I'm on my own, which doesn't feel good either. I know that I'm complaining, but I am scared! I expected balance problems, hearing loss and had even prepared for facial paralysis. Just didn't prepare for this!
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I guess I'm on my own, which doesn't feel good either. I know that I'm complaining, but I am scared! I expected balance problems, hearing loss and had even prepared for facial paralysis. Just didn't prepare for this!
Feeling like you're on your own, lost somewhere in the healthcare system, is the worst! I feel like I've been fighting with secretaries and various "paper pushers" (disability paperwork people) for months now just to be seen/heard/etc and I'm tired of it! So you're certainly not alone there.
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I just joined this forum and feel like I suddenly found a huge group of people who understand me, I feel like crying. Over and over again I think to myself, "No one really understands". It has been a little over a year since my surgery (middle fossa) and I feel like I am just getting back on my feet. I am really tired all of the time, pretty deaf in the right ear, and have pretty poor balance combined with residual vertigo. I had migraines going into the surgery which are now daily and I have to take daily meds that make me even more tired. I have chronic head/neck/shoulder pain on the right so anytime I lift anything remotely heavy I am in serious pain. Has this happened to anyone else?
And, I keep it all inside because to everyone else it is just complaining or I hear that I need to look on the bright side. Even now I feel guilty for writing about it! But my life is a struggle now and so different. I am 35 and a mom of a 3 yo. I used to work full-time. SO much has changed I can hardly make sense of it all.
Well, thanks for listening (reading).
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Hello - and welcome, Marta ~
I'm so glad you've discovered the ANA website and the discussion forums. Although our members aren't doctors and can't offer 'medical'advice, collectively, we have a wealth of practical experience dealing with an acoustic neuroma, from diagnosis to choosing a treatment to surgery and/or radiation and, of course, the recovery process and all of the emotional obstacles that seem to go with it.
We don't think having your life turned upside down and being in pain but not liking it constitutes 'complaining'. We call it 'venting' and if you need to 'vent', we welcome it, here. Crying is also allowed. Although our forums generally deal with the day-to-day aspects of living with an AN diagnosis, choosing a treatment and/or coping with the ramifications of the treatment, be it good or not-so-good, we also recognize in a way others probably cannot, that dealing with an acoustic neuroma has consequences. Even those of us that enjoyed a splendid outcome after surgery and/or radiation didn't escape totally 'unscathed'. We understand the upheaval this kind of medical problem brings to people's lives and we offer our wholehearted support as well as whatever advice we may be able to give. Others may not recognize your struggle but we do and we want to help you through it as much as we can. Consider us your 'AN family'.
Your chronic head/neck & shoulder pain is not uncommon in AN patients and neither are the headaches. Others may have some useful suggestions for you but unfortunately, I do not. However, I can sympathize with your feelings of isolation and I trust that knowing there are folks 'out there' with the same kinds of problems you have because of the same tumor will be an encouragement to you. Meanwhile, please stay connected here because we understand and we're eager to help in whatever way we can.
Jim
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Hi Marta and welcome to the Forum ;D
What part of the country are you from?
Jan
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Hi Marta,
So glad you found us.
The AN journey is so complex for some and easy for others.
We are not counseled prior to surgery how our lives may be so different, because the surgeons don't follow us forever. Then we get bombarded (me) with all these post op side effects that will be with us forever, basically.
Every day is a "challenge" for me, but I do get by doing the things I used to do. I just don't have that same "joi de vie" that I had before surgery and that brings me down.(tinnitus is the main curse)
An emotional roller coaster that loved ones get tired of hearing about.
Very complex......I'm doing acupuncture now for face and well being which is helping some, but time consuming and $$$$$.
Sometimes I feel it affects my personal relationships, because I tend to isolate myself from social, loud situations, and don't want to take the energy for conversing!
That's why it is so important to have the support groups.
Is there a local support group in your area?
Anyway, again welcome, and hope you continue to visit us :)
Maureen
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I just joined this forum and feel like I suddenly found a huge group of people who understand me, I feel like crying. Over and over again I think to myself, "No one really understands". It has been a little over a year since my surgery (middle fossa) and I feel like I am just getting back on my feet. I am really tired all of the time, pretty deaf in the right ear, and have pretty poor balance combined with residual vertigo. I had migraines going into the surgery which are now daily and I have to take daily meds that make me even more tired. I have chronic head/neck/shoulder pain on the right so anytime I lift anything remotely heavy I am in serious pain. Has this happened to anyone else?
And, I keep it all inside because to everyone else it is just complaining or I hear that I need to look on the bright side. Even now I feel guilty for writing about it! But my life is a struggle now and so different. I am 35 and a mom of a 3 yo. I used to work full-time. SO much has changed I can hardly make sense of it all.
Well, thanks for listening (reading).
Marta,
There is a lot of good information over in the headache section on cervical headaches, which is what a lot of us have. I, too had migraines going into surgery and they ramped up to warp speed post-op. There are a lot of options, including seeing a headache specialist--our surgeons don't have enough knowledge on headaches. You are certainly not alone.
Capt Deb
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Hi, I am concerned and just wanted to know how you are doing have you heard from your doctors regarding the vestibular therapy and double vision ??
Best Wishes,
Pat
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ME TOO!!! I miss the person I used to be. For 9 1/2 years I tried to pretend I wasn't different. Let me just say, it burned me out-BIG TIME! I have to know my limitations, such as taking myself out of the crowds and other overwhelming situations, getting enough rest, letting things go and letting people help me. I get depressed when I look at pictures of myself BAN (Before AN, like someone else called it!) I can't look in the mirror-I hate that I can't smile. I am dizzy and tired all of the time, I can just do very little. I am not working anymore. I just can't handle it. It took too much out of me, and I had to pretend too much, lie about why I couldn't make deadlines and fullfill my obligations, etc. Soooo, I am out of Denial; I am working on accepting who I am now. I am just going to go with it. My husband also had a hard time adjusting to the new me. I STILL have to remind him sometimes why he doesn't have clean clothes for work or why the house is so messy. He loves me, but he had to adjust to having a new wife, just as I have to adjust to being a new person. :)
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Posting another reply because this thread really strikes a chord with me. Have had lots of recurring dizziiness recently...it got much better about a month after my gamma knife treatment which was Dec 1 2009), then has come back. I know there was/is a chance of stuff like this happening, but it is still discouragiing.
I know EXACTLY how posters in this thread feel...now that it's been almost 3 months since the gamma, everyone thinks that things are fine. I show very few physical symptoms, just an off balance walk if i turn my head too fast, or stand up too fast. So....it's all well and good...right???? Wrong, but i'm at a point where i'm not caring too much. I almost wish i'd had surgery just to have a scar to show people that something major WAS done to me. People seem to think the gamma knife is no big deal, and that the tumor therefore was not a big deal, and that everythiing is the same. And it isnt.
I can be grateful that i was able to have the gamma vs the surgery, but some days it is so old--trying to deal with significant others, families and co-workers who just dont understand why I dont want to eat in loud restaurants, get tired quicker, have trouble doing some of the physical work i could do "B. A. N." (before acoustic neuroma). This is just one of those yucky days...hubby I just want to say chuck it all.
My balance issues are really bothering me...it's actually a dizziness/balance thing. Have a doc followup next week to see why it keeps cycliing between not bad at all and then gets bad enough that i cant drive for day or two.
oh well..believe me, even though you cant see the "scar" from gamma knife...it IS there
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Hi Tricia,
I know exactly how you feel, I am still W&W and have daily symptoms, I get comments from people like "you don't look sick, are you sure that you are". I don't feel good most days with symptoms of head pain, head aches, dizziness, nausea etc. I even don't say too much to my husband anymore because I don't want to worry him. Most people forget that I have this until I remind them.
I am in the process of hopefully starting a support group in my area, western Massachusetts, I am looking for others with AN to talk to and support each other. I still am grateful for this forum, it has help me tremendously.
Hang in there and best wishes,
LisaP ;D
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This thread struck a chord with me as well. For a few months everybody was very accommodating. However, as time waned on, I heard quite a few comments from those who were closest too me. For instance, one time I was on the internet just reading about double vision and my brother tells me that I am obsessing and just need to move on. Another instance, I was in the car about a year after surgery and my girlfriend tells me I need to move on and it's not normal to be upset for as long as I was.
I feel like people think I should be over things and that I'm just a little nutty and obsessive now. If someone was paralyzed and in a wheelchair I don't think people would be telling someone to get over something, especially after one year. I think people sometimes view facial paralysis as "oh he just can't smile now" or something along those lines. Maybe they just get sick of hearing someone complain?
I don't think people realize how much of a life changing experience it can be to have some of the side-effects that you and me suffer from. I suck at all sports now because my double vision has left me with no depth perception and even if I did have it I wouldn't have the coordination and balance. I can't even play catch anymore with a ball unless someone is purposefully throwing it nice. I hate going in water or outside, especially on windy days, because my eye starts to feel dry and irritated. I could go on and on but I'm sure I'm preaching to the choir here.
-Chris
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Hi Chris, I've been dealing with this since 1992 and still have some of the same issues you have. As you say I could go on and on and sometimes I do. Every know and then I throw myself a pity party then I seem to deal with things better and have a good time. The not being able to smile is a big thing when someone thinks you don't want to smile or you must be in a bad mood. It seems rather rude to make them uncomfortable by explaining why you can't smile but I guess it's ok if they make me feel uncomfortable. There's 2 people at work that keep telling me I should do this silly thing called a "fish face", won't bother with the details of why they want me to do it, anyway, one of these days I'm afraid I'm going to loose it and tell them it's not that I don't want to it's that I CAN"T, nor can I do several other things as you mentioned. I've worked there since 1995, you would think they would have figured it out by now. Thanks for letting me vent!
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You are not alone in the world of not understood ...
hang in there and don't let anyones lack of understanding get in your way ...you will have to learn to like the new you ... you may mourn the old you ... when met with people saying things to the effect that I need to get over it I feel like telling them to go get a hole drilled in their head and let someone play around in their head then tell me how to feel ... but I don't ... I have learned to largely ignore the negative and embrace the positive
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Hi all - it's just the beginning for me - I haven't even seen the first surgeon yet.
I have told few people about this condition...I have a wide circle of social acquaintances...of the few people I've told, some are casual friends. Their responses are varied, but I notice some seem to run for the hills - it's as if I have the plague. Interesting. I am feeling pretty good right now, looking forward to my first surgeon visit, but still....it's odd that a few people seem to shun me now...all I did was told them about this little tumor. I presented it in a low key manner, etc...it is interesting to discover the "fair weather friend"....
I guess life situations help us learn about people. It's very interesting to me.
Thanks, all of you.
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Yes, you absolutely learn who your friends are!