ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: han nah on February 07, 2009, 06:24:03 am
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Hi All
It's been a while since I logged on last, and I'm plodding along, taking each day at a time. My face is coming along great, the nerve grafts are amazing. I now atleast have some movement on my rightside, all controlled by movement of my tounge. I have another 4 months of the 2 years for my graphs to keep growning - then they will stop and I will be left with the results I have, which Im heaps happy with :).
However, like I said, Im taking life each day at a time. I still am extremley dizzy about 80% of the time, have EXTREME constant tinnitus in my deaf ear which I feel over time is getting progressivly worse and always very tired. I don't like complaining but I must be having a bit of a 'down' day today.
I guess I feel like it is almost 2 years on and I should be getting 'better'. I am not yet back to work full time, I could not even consider working 5 days a week again. I now work 4 days with a day off in between, and even working 2 days straight I feel absolutely exhausted and feel that I need a day to recover. When I have to concentrate, I have real trouble and feel that after 5 minutes my brain is exhausted and the tinnitus gets worse. Even driving the car drains my brain and sets of my dizzyness. I feel the only way I can relax and tune my brain out is when Im laying down on my side with my eyes closed - that stops my brain from 'being turned on'. My surgeon said it can take up 5 years to even start to feel 'normal' again. My main concern to me is that I want to start a family shortly and I worry about how I can manage a baby and a part time job, when I can't even manage to work 'full time' yet. I feel llike some days I could sleep or lay down all day.
I was just wondering if anyone has the same issues afew years post their operation? Will it get any better soon, or is this something that comes with having the AN and we just have to learn to deal with it? (My surgeon told me my tumour was bad, I had a 13 hour operation when it was only supposted to take 4 hours - so am I just an 'unlucky' one).
Thanks for your support
Hannah
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hi hannah, i am two years post op, and would not consider working anything less than part-time i know i couldnt cope with it, my kids are young and they come first there is no way i could do it all, i often wonder how i coped before, i would like to work again but the hours and days would have to suit, even three mornings a week (is there such a job lol), its interesting your consultant says it can take 5 years gives me hope. About your facial nerve graph i have read it can take about 3.5 years for the graphs to grow maybe am wrong. Take it easy we can only do so muchxxxx
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Hi, Hannah:
I'm sorry to learn of your slow recovery. Your issues are not uncommon and although you seem to be healing slowly, you do have some progress, which is encouraging.
As you know, every AN patient is somewhat different. For AN recovery, 'normal' is a relative term. There simply isn't a 'pattern' we can use to gauge whether we're healing 'normally'. As you surmised, some AN surgical patients do have long-term, intractable issues to deal with. Others heal - but very slowly, usually with much therapy and hard work as well as further surgeries, as you've had, and some heal rapidly and don't have many issues to deal with. We're a very diverse group, in that regard. I wouldn't consider you 'unlucky'. I would consider you a slow healer. :) Meanwhile, never, ever assume that how you are today (related to your AN recovery) is how you'll be tomorrow. There is always hope. If some things never recover perfectly, so be it. You'll deal with that when it becomes necessary. For now, be of good cheer. You've had good results and progress with your facial nerve graphs and in time, you'll likely regain the energy you now lack. I'm sure you'll be a fine mom some day, too. :)
Jim
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Hi Hannah,
I read your post and I am glad I am not alone in recovery. 21 months post surgery. I still have conditions that I developed post surgery. I am a single mom of 2 young children and went back to work 4 months after surgery due to financial reasons. I worked for a little over a year and could no longer do it. It came down to my house, kids or working, one had to go. My children are my life and if I wanted to try and live some type of normal life and care for my children I was going to have stop working. I choose to take a short term medical leave and apply for S.S. I knew that I had to listen to my body and quit acting as if nothing was wrong when in reality there was plenty wrong.
I thought that after the removal of the 3.7 cm AN all would be better and life would go on as it did pre surgery. After a year being post I thought it surely would return to normal. I am now going on year 2 and I still have headaches, SSD, tinnitus, balance issues, confussion, facial paralysis, vision problems, fatgue, sleeplessness. I pray I find normal. Like you I am beginning to think that there is no such thing. I am glad I read your post. I don't feel so crazy. Good luck in your recovery and I wish you the best.
Golden
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Thanks everyone for your words, just knowing that there are other people out there helps. I think that I have decided that taking each day at a time is the only way it can be. I would really like to apply for another job, but even just the thought of having to learn and all those 'brain cells' required for a new job just is wayyyyy too much for me at the moment, and my focus will be my baby when we start a family (shortly hopefully ;)) I'm sure that I will be able to cope, with a supporting husband and my parents and partents in law just living about 2 and 2 and half minutes up the road minutes up the road. I'm sure that that internal 'mother' instinct will kick in, and Ill just cope - somehow.Thanks heaps for your advice and time, like I said it really helps.
Hannah
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Hi Hannah,
I too am dealing with facial paralysis. I am a mother of 2 little boys and am pregnant again. I must tell you that getting pregnant again was the best thing that could happen to me. I have been so consumed with my post op complications that they overwhelmed me most days. I could not muster the strength or courage to get out of bed some days. Although I still have the complications....I can now direct my attention to this unborn child. For some reason.....the miracle of this little one and of course the two sweet little boys that I already have give me hope, courage and strength beyond your imagination. I see such Life and Happiness in them and it is contagious I must say. So be at peace knowing that when you do decide to get pregnant.......your life will change.....for the better. My kids and this pregnancy have been a life saver for me. Although I am a bit more tired being pregnant.....I am so excited that I just push right through it. I might add that 1 year after surgery I tried to climb Pinnacle mountain(alone)... here in Arkansas. It is not rock climbing but a straight up path to a very tall mountain. I walked about 10 minutes of a 1 hour long journey and turned back.....exhausted. I am now 19 months post surgery and 7 weeks pregnant.........my husband and 2 boys went to the mountain last Saturday. The kids wanted soooo bad to get to the top. I was NOT going to give up. I was going to make certain that my boys got to the top of that mountain come hell or high water and I would climb on all fours if need be. It wasn't an easy task...I used a walking stick and my 6 year old held my hand to steady me when needed. I took long breaks and a 1 hour walk turned into a 2 hour one but by God....we made it. I was very tired for the remainder of the day but so proud of myself. It was a huge victory. I tell you this so that you will know that all things are possible through God and through the love of your children and family. My kids are my biggest motivators. When you become pregnant you will instantly know what I am talking about. You won't worry so much about that dry eye or that wonky smile.....you'll be too consumed with the health of your unborn babe. It is a great diversion.
Much love to you. God is my healer but RIvers and Tanner have also healed my broken spirit. Your baby will do the same for you. Children truly are a gift from God.
Angie
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Hannah~
I agree with Angie...your kids & family will be the BEST thing to pull you thru this. I was like you -25, married, but with no kids when I had my AN surgery. It was 14 hours and I had a stroke on the table...I really wasn't in very good shape. I did go back to work after 3 months because I really didn't have another choice. I got pregnant a year after (a little TOO soon probably for my body) and just like Angie said, your whole focus changes from YOU to that little life growing inside you. I taught school and I was EXHAUSTED...some days those first few months I would teach all day and come home and go to bed until the next morning!! ;D It was DEFINITELY all worth it - I wouldn't change a thing now! Check out my blog if you want (address below) and see what life is like for me 13 years later. I would suggest setting little goals for yourself everyday to help build yourself up - BABY STEPS!! Feel free to PM me if you want to chat or have any questions!
Good Luck!
K
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hi hannah, i just read your post and it made me cry. i am nearly 5 years out of surgery now that was supposed to have been 6 to 7 hours but wound up being 18+. dont have any facial paralysis thats noticeable to others but everything else that could go wrong did and all the bad stuff just keeps getting worse and worse im sad to say. normal is definitely a relative term. have been scouring the world for some kind of doc to help me. i no longer can work, drive or function as what i believe to be normal and evrey doc i visit tells me the same thing "once all your cranial nerves are damaged there is nothing that can be done to fix them" i really miss the old me. i feel hopeless much of the time and the noises in my head that i can never escape from make me feel as though i am losing my mind. i feel really bad for my family who have to put up with the mean and impatient dependent person i have become. at this point i have chosen to seek alternative healthcare to alleviate as much nastiness as i can and the rest i just have to deal with as i now know that i will be this way forever. the constant change is really the most frustrating part. if all the bad effects would just remain static i would be able to get used to it all, but i am not giving up. i will continue to seek new "strategies" as i call them to deal. i was also just unlucky in my outcome. so many issues. on the better side i also realize that things could always be worse too and that i have to accept the "new" normal. it is very hard to do but i will not give up! i try to concentrate on the good days rather than the bad ones. i will pray that you will continue to recover normalcy in your head and that your spirit will be strong enough to embrace the new normal in the event that it doesnt get better. many hugs to you. love, kerri
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I am 8 years post-op, and have not healed fully. I found comfort from reading these posts. It truly helps to see other people in your boat. It's difficult, because I want so much to be "normal." I have recently decided to stop pretending, and apply for SSD. It was impossible to come home even after working part time and take care of four children, home, four pets and husband. You said your family and husband is supportive, so having children is possible for you. You'll need support. My husband works a lot, but my mom often came over to help with housework (until my dad was diagnosed with Alcoholic Cirrhosis). I have a baby on the way, and I'm so exhausted, dizzy, confused, etc. I'm on the fourth day of a migraine. I am definitely having a bad day. I really wanted to thank everyone on this post and encourage you to have your family; just don't have high standards about housecleaning!! :D :D
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I'm 3 years out and I have the same feelings most of you have. What makes it so difficult is that from the outside you look just fine but things just aren't good from with in. I'm a strong man and have been through several other semi-major health issues and they didn't stop me like this has. Family, freinds and doctors all look at me like I'm a loser and they just have no clue what changes this little tumor brings to your life. The cognitive issues get worse and I feel it's due to the Tinnitus. To have a stimulas like the noise level of extreme tinnitus is like torture which we don't let terrorist go through. I use to eat stress for dinner and get stronger from it. Now I can't handle the simple problems with out shaking like a leaf. What a burden!
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Well I guess I'm a loser also. I'm two yrs and almost 6 months out and I haven't worked in almost a year. This is to the point, I DO NOT give a rat's A$$ as to what people think about me any more. They are not walking in my shoes and dealing with my problems so, this is for all of them!! :P :P :P
Shocking eh gang, I use to be so mildly mannered ::)
Anne Marie
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YOU ARE NOT A LOSER, Anne Marie! None of us are! You just got to do what you can & go on with life..."suck it up & go" is what I always say!!
K ;D
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Hello everyone: I agree with K, none of us are losers; whether we had surgery or radiation, we have/are dealing with difficult issues. You may think having paralysis is the worst thing, but for me, having to endure horrible headaches would be worse - we're talking constant/frequent pain. I feel lucky I don't have pain, lucky I have feeling in my AN eye that let's me know I need more lubricant.
I was able to return to work because I am lucky enough to have a wonderful, caring, supportive group of co-workers who still, after 2 1/2 years, ask if I need help, etc.
I also don't have children - I don't know if I could have gone back to work if I had the added stress/energy - zapping of raising them.
I believe we are all strong & we are all doing the best we can with our individual AN issues.
I'd jump off my soap box, but I think I'd land on my butt !! (a Pooterism).
Always good thoughts for bright futures, Nancy
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I was thinking about the whole headache issue when I wrote what I did - I absolutely think that living a constant pain would be much worse than having a paralyzed face. I don't have feeling in my eye, or anywhere on that side of my face, but I count that as a GOOD THING too. I guess it is just all how you look at things and whether or not you TRY TO FIND THE GOOD - no matter what it is. With all the scratched corneas and surgeries over there, I have saved on a LOT of PAIN!! ;D I also have been very blessed with supportive co-workers, family and friends!
K
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Nancyanne..i can hold your hand & we wil jump off the soap box on count of #3..O.k....??? ;D
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Fine by me cin, will that be 2 butts a landing ? ! !
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That depends if i sway to left on the way down.if you lean to the right maybe you can compensate so they say ;D i'm ready i took my nausea pill about 20 minutes ago so it shouldn,t be to messy getting up on the soap box...then again it also depends how many steps i have to take to get to it!
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You know what ? - I think we can do it ! But just to be on the safe side, let's strap a pillow around our butts.....
Always good thoughts, Nancy
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hey ron i know exactly how you feel. we all have this invisible disability. if we had no legs or something it would show but we look so normal. i actually had a guy in a hurry in sams club come up behind me on my deaf side with one of those ginormous carts and i suppose he said excuse me but ofcourse i didnt hear him and then he just proceeded to ram into me with the thing and ofcourse i have no balance and fell over. he jst went on his way cursing me under his breath while i tried to get off the floor! and yes no one can understand how stress affects us. it is a whole different perception! almost feel at times i ought to be locked up and i used to eat stress for breakfast lunch and dinner too and an occasional bedtime snack! i guess thats why even my own family cant seem to get it. my thoughts are with you and i totally understand what you are going through. do you have random multiple noises 24/7 or is your noise a constant? just curious. keep trying. i am. anne marie when i read your post i thought wow thats me! i used to be such an even tempered person and very kind and now i sometimes think i am the meanest darkest creature on earth. i actually scared my husband to death recently by having a terrible raging fit and screaming obscenites directed at god! wow. that is so not the person i used to be. i guess i just have to face that i will never be the same again and getting so angry sometimes is just a part of the new me. i do get really sick of it though! i know how you feel. ill be thinking of you and hoping for some better days. they do come sometimes even if far and few between. savor them while theyre there! hi to everyone else. love you all, kerri
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hi hannah and everyone.my story sounds very much like yours.my surgery was done aug 07.i i had hearing in my right ear for 2 wks following surgery.then it just shut off.doctors are puzzled.i too like you have serious fatigue.my balance/dis-equilibrium is not good.i'm going next week for a v.e.m.p.test and 3 1/2 hours of balance tests.not looking forward to that.it's very diffucult to keep smiling.i also have a tendency to complain which i always resent after doing it.what helps me at times is knowing that many people have ut much worse and i try to remember that.but at times that's little consolation when you're just trying to do everyday things you used to take for granted.i wish i had the answer to tell you it will get better.i hope and pray that it does all my best to you sincerely; ernie.
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hi hannah and everyone.my story sounds very much like yours.my surgery was done aug 07.i i had hearing in my right ear for 2 wks following surgery.then it just shut off.doctors are puzzled.i too like you have serious fatigue.my balance/dis-equilibrium is not good.i'm going next week for a v.e.m.p.test and 3 1/2 hours of balance tests.not looking forward to that.it's very diffucult to keep smiling.i also have a tendency to complain which i always resent after doing it.what helps me at times is knowing that many people have ut much worse and i try to remember that.but at times that's little consolation when you're just trying to do everyday things you used to take for granted.i wish i had the answer to tell you it will get better.i hope and pray that it does all my best to you sincerely; ernie. p/s my surgert was also 14 hrs supposed to be 4.
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I sympathize with you I had a 3cm removed about 2yrs ago(2 surgeries) and I couldn't go back to work. (mail carrier) I finally got disability retirement. ( not much money) but whats a woman to do? needless to say I have now lost my home, still feel like poop all the time ( today terrible headache). sometimes I feel like it will never get over and maybe it wont. :'( I was even told in 6 months my facial paralyzes would go away ( it didn't) >:( the list goes on. But then I'm an old lady :) 57 in July O MG anyway good luck everyone. at least we have each other.
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I'm 5 years post radio-surgery. At 3.5 years i was thinking things were'nt going to get any better...frequent headaches, bad dizziness and vertigo, SSD and tinnitus. I was approaching 50 on a downward spiral and felt there wasn't much I could do about it. I was accepting of it...not happy....but figured i'd had a pretty good life and there was still much I could enjoy. Then a few things happened....topomax for the headaches...under control now for the most part....and my brother gave me the best gift of my life, a standup paddleboard to use as therapy. The dizziness and vertigo were the most difficult things for me....standup paddleboarding ended up being the answer. I've learned that by pushing myself to extremes of balance (beyond even what I had done pre-AN) I was able to make "normal" possible again. I still have some headaches and dizziness and vertigo but I'm functional. Truthfully...life is even sweeter now than it was before my AN diagnosis. I've come to appreciate that my life is special...i have no wish to return to normal.
Today I'm 51 years old, in the best shape I've been in since I was in my 20's. Mentally I'm 18 again and look forward to everyday...especially if there are waves.... ;D.
Find something you can be passionate about that will provide therapy and work harder than you ever thought possible (it took me 3 months of falling off my board every 30 seconds before I started to get it). This is me a couple weeks ago after 1.5 years of hard work...
http://www.youtube.com/watch?v=GR2zk7mo97I (http://www.youtube.com/watch?v=GR2zk7mo97I)
and even a little crazier...last october in a nor'easter:
http://www.youtube.com/watch?v=MOmZung9fv4 (http://www.youtube.com/watch?v=MOmZung9fv4)
Don't give up...find your silver lining.
Bob
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I was beginning to think my life would never get back to normal ... but since being on lyrica and having fewer and not a strong headaches thinks are slowly changing ...
I walked about 10 miles at Shiloh Battlegrounds Saturday and did it without getting a headache ... the
background still seemed to be moving of its own accord and I swaggered like a drunk for a good part
of the hike ... but I did it ...
I must add that I got home around 8:30 and was asleep by 8:45 ...didn't even bother with a shower...just
stripped off clothes tossed on a clean t-shirt and slept til about 10:00 Sunday morning ... was groggy and
legs and sides from waist up to armpits were sore from my constant adjustment of muscle tautness to keep
balance ... had my sister and her boyfriend coming in that evening (they do Civil War reenactments and we had
went to watch them) ... had to get a place ready for them to crash along with my mom and also have a good
meal ready...southern hospitality and all ... beside we are trying to impress this guy ...I think my "I will never marry ...
men are pigs " sister is gonna get hitched soon ...
anyway ... I was semi conscious and not best company by the time they got here and we all went to bed early
because after two days of fighting the Civil War they were wiped out too... got up Monday and took kids to school ...
came home and fed my guests breakfast ... they left here around 10:30 with 5 hours more to drive to get home ...
my grown son and I were going to watch a movie ... I don't remember the disk ever starting and next thing I know
it was almost 2:00 and he said he was leaving ... Yesterday I napped off and on all day and today I was back to my
new normal afternoon nap of about 2 hours
what I am trying to convey is things may never be what we knew as normal again ...I used to hike with Scouts and
do 40 or more miles in a weekend and go to work Monday as if I hadn't done anything ... but things can and do get
better...aside from the muscle spasms and soreness and the incredible fatigue I accomplished a hike that a few
months ago I wouldn't have been able to do