not the same after AN surgery

[Karen]

How many of you have found that AFTER SURGERY even though its been 7 years I still have to have at least 9 hours of sleep a night and after being around people and having to talk and dealing with facial paralysis and balance issues all I want to do is be alone and not have to talk sometimes.  My husband says its because I am older now, but I feel like I wear out easier now.  He doesn't understand what's it like to deal with the not hearing, the facial paralysis, the numbness and the balance all the time.  Any one else feel the same?  Karen

[Jim Scott]

Karen ~

I think you're on to something here.  I'm four years past successful surgery and radiation procedures and I'm convinced that my stamina has been somewhat compromised.  Because of my age (67) I can never be certain where normal aging and the effects of the AN procedures merge to sap my energy.  I believe that being SSD and with our brains working harder to maintain our equilibrium combine to use up more energy than a 'normal' person.  Being past our youth undoubtedly makes our resilience weaker and thus, we feel 'tired' a lot quicker than before the AN surgery.  I get by on about 8 hours of sleep but I structure my time to get the physical aspects of whatever I have to accomplish on a given day, finished before noon, while I still have some energy.  Although no two AN patients have the same post-op experience, in my opinion, you are not alone.

Jim

[Kaybo]

As I have said before, I know for a FACT that the AN has definitely changed my energy/stamina.  Even though I wonder about the aging aspect, I was only 25 when I had surgery.  I was a VERY energetic and active PE teacher type girl.  However, I don't feel like we should sit around & feel sorry for ourselves - aside from taking care of ourselves and trying to manage our time wisely (which I have NOT been doing lately with this move) - as there is nothing we can do to change the cards we have been dealt!    

K   

[nancyann]

Karen:  For the past few days I've been thinking about bringing the exact issues you are talking about to this site !
I am so glad to see I am not alone.  When I get home from work I just want to shut the world out,  & I do.
I am so exhausted all the time.  Dealing with eye issues (+ facial paralysis), hearing issues, is just wearing me down.
It's only been 4 years for me, & sometimes I don't know how I'm going to keep doing this the rest of my life.
I'm not as talkative as I use to be at work - I say what I need to & that's it.
I'm just so tired of pushing myself everyday.  It's so hard waking up at 6am - I could sleep until 11am when I'm off.

I've got to tell you,  I feel better knowing I'm not alone..... 
Always good thoughts,  Nancy 

[epodjn]

Wow, this must be something that has been on a lot of our minds lately. I'm only 2 years out but everyday feels like it takes supreme effort to get through. Facial paralysis is so wearing. It's hard to explain to those who don't understand. And the balance issues. And they eye issues. Does anyone else feel like even though the eye doctor says you are seeing 20/20 your still not seeing right somehow. It just feel right. I dont' know how to explain it but I'm guessing at least a few of you know what I mean. All of these issues added together are very overwhelming. I agree with Kay, we just need to make the ajustments we need to and move on with our lives, but some days are harder than others. I feel like some days I'm on top of the world just realizing that I am alive!! Other days aren't so upbeat. I'm sure glad there are people out there who understand this, and who I feel I can vent to a little. Mostly I feel very blessed and my life is good but it sure would be nice to feel the old normal again. Kay, does the new normal every start feeling well, NORMAL? Your our long term expert.

[yardtick]

I feel the same way.  I wish I was the social butterfly, and the energizer bunny I use to be.  I'm home because of headaches and facial pain, but at the end of the day I do not feel up to talking with my husband.  That has been a really tough battle at times.  I feel isolated because of chronic pain and Louie feels lonely because I am not the carefree, talkative person I use to be.

It takes a lot of energy and effort for me to keep the house up.  I have 4 adult sons still living at home, who is at work, who is at school and than running to work, plus my husband's work schedule.  It exhaust me to keep up with my family's daily hustle and bustle.  

I don't think I will ever be the same.  Age is a factor no doubt, especially for women with all of the other carp women have to deal with.  It kills me, they can make a magic little blue pill for men, that is great BUT once again women are forgotten.  Okay that is my rant on the aging issue!!!  

When I read on this forum how well some people have bounced back from surgery or radiation treatment I am so happy for them.  At the same time I think what happened to me, why wasn't I as lucky?  Than I give my head a gentle shake so I don't aggravate the nerves, and count my blessings knowing so many other people have life threatening conditions.  I do not have any answers or a crystal ball to see into the future.  I try and somedays it is really difficult, to put my best foot forward and do my best to be a good wife and a mother.  Somedays I go from the bed to the couch and back to the bed again.  I'm not the same and I know it has taken a toll on my husband and sons.  

I think acceptance is the key to moving on.  I know it is easier said than done.  One must know their limitations and accept it.  I find I have more tolerance and accept my limitations in the warmer, sunny weather.  With this dull grey, stormy weather even the healthiest of people feel down. Today I feel a lot of facial pain, a very tight pulling sensation.  I'm dizzy and my head around left temple is throbbing.  The weather is stormy, I'm very tired.  I have accepted the fact the weather plays havoc with my head and face.  I'm going to take something and I'm going to lay down.......see acceptance!

Anne Marie

[CHD63]

Fatigue is a strange thing.  It is not visible and sleep does not always remove it.  If we are being honest with ourselves, all of us who have had ANs deal with extra fatigue on a daily basis.  That being said, it is like any other deviation from the norm, it is depends on how much we dwell on it and what we are doing to compensate for it.

Even though I am retired and can take my "power naps" (10 minute off my feet, eyes closed naps) whenever needed, most working people can find a "Break Room" to at least sit down with feet up.  Adequate nutrition is a must ..... skip the caffeine and junk foods, thinking you are getting a "lift."  Whole grains (such as granola bars) and fresh fruits (grapes are easy to pack) are great energy boosters.

Headache sufferers are another matter.  Blissfully I have not had to deal with headaches but many friends on this forum have.  Many have shared some positive helps for that.

Clarice

[Karen]

So glad to see I'm not alone!  As I said before my husband keeps saying but your surgery was 7 years ago you can't be still tired from that!  But like I said by the end of the day all i want to do  is sit and not talk for awhile.  I was quiet before but now I am even more quieter.  I do feel blessed that things aren't worse and that I can do all the things I do .  It does help to know that others feel the same way.  Thanks.

[nteeman]

Let me add another ME TOO.  I go to bed much earlier but that is OK. My biggest hurdle to handle is SSD. I went to a Bat-Mitzvah reception recently and while we had a good time, I could not understand anything anyone said to me while the party was on (DJ music and such). People would take me aside to have a conversation about something and after one or two sentences I had to explain that I could not understand anything they were saying and it was due to my SSD. Interestingly enough while some understood and would stop, some people would continue to talk eventhough I kept telling them I could not understand what they were saying.

-Neal

[CHD63]

Interestingly enough while some understood and would stop, some people would continue to talk eventhough I kept telling them I could not understand what they were saying.

Oh Neal ......  I can identify ...... it is like right over the top of their heads.  I just smile and nod my head.  Obviously they are only interested in telling, not listening or caring if you heard.

Clarice

[Tod]

Yeah, I don't like to complain, and I am only 9.5 months post, but I do tire out easily and struggling more than I think I should be. It is compounded by the fact that it takes so very much energy to speak with just one vocal cord. By the time I get home from work I am exhausted. Also, it still takes a very long time for me to get moving in the mornings.

It could definitely be worse though.

-Tod

[epodjn]

I do the same thing, nod and smile. Not many people really seem to care if you actually heard a word they said. If it seems to be something important then I tell them to talk to me later when it's quiet because i can't hear a word in crowded noisy places. Some do, some keep talking. lol. I figure if they don't listen to what I am saying then I don't need to worry about what they are saying.
Julie