Back to work - downhill slide?

[Sue Vogel]

Starting back to work last month has been a downhill slide.  Did anyone else have setbacks with the "usual symptoms" after returning to work?  I have regressed to working only four days a week because I'm so exhausted, off balance, and full of those crazy head spasms.  I teach science and am the department chair.  The days are long, and there are no breaks.  I started back to school after the holidays (not quite 3 months after surgery) thinking that I would be fine because things were going very well at home.  I was driving and just starting to drive at night, and I didn't really feel all that tired.  We had a few snow days in Iowa those first couple of weeks back.  But when I hit a full week of school plus an extra 8 hours of parent teacher conferences, I hit the wall - hard.  I was so tired I could hardly keep my head straight to drive home!  It was scarey.  I noticed the next week that I hit the wall again after four days and took Friday off.  I slept for 12 hours that night.

Has anyone else experienced the post AN symptoms escalating after returning to work?  Do these things sound familiar?
* More off balance and unsteadiness - especially at the end of the day and when I'm tired; overall balance is worse now than a month ago
* Increased tightness on the AN side around the incision (Translab.)
* A sensation of spasms on the AN side; I call them snakes in the head feeling
* Slight twitching and cheek numbness on the AN side of my face when stressed or tired (I don't have facial paralysis)
* Eyes don't seem to focus as well, and I feel I squint a lot as the day goes on
* Metallic taste on the AN side; seems to be associated with saliva glands
* When I use my teacher voice, talk a lot, and smile a lot, AN side of head tightens up like a corkscrew and pulls at my face; I also have a little drool on the AN corner of my mouth
* Head feels like a Bobblehead at the end of the day; eyes aren't tracking with head movement as well
* Tinnitus is getting louder on AN side
* Headaches usually accompany the exhaustion at the end of the week

I'm not normally a whiner.  I always do my job well with a high level of energy.  Because people expect this from me, I am probably putting even more pressure on myself to be what they expect.  One person told me last week that I didn't always have to be a maverick.  Several colleagues have noticed that I seem to be struggling by the end of the week.  It drove me to call my surgeon's office with the details above, and they were not alarmed.  They said to listen to my body and do what I can to adjust.  So I'm taking a few Fridays off when I can. 

I guess I'm hoping that someone else can relate to what I'm sharing (because the colleagues at work don't really get it.)  This is going to get better, right?  I know that sometimes things have to get worse before they get better.  The maverick here needs some reassurance.

SUE

[jazzfunkanne]

i feel like that if i over do things, thats why i wouldnt consider returning to work esp with a young family, i might consider part-time in the furture, i think you may have returned far too soon, maybe if you could cut down to part-time ,our brains can only cope with so much.

[Dan]

Sue

I also had problems when I went back to work.  Almost everything you mentioned except for balance.  I work swing shifts and the first week I went back I had night shift.  Night shift is usually pretty relaxed so I thoght I would be OK.  Because of the sleep time change I had problems for the first three months.  Most of the extrem symptoms went away after three weeks, but I still have more problems with the swing shifts than before the OP.  It may also be because I now take meds for high blood pressure which I didn't need before surgery.  You and your body will need time to get back to normal.  If you were like me the three months out of work you didn't do very much except take long slow walks.  There is no way you can compare that to work.
It takes time but it will get better.

Dan in Germany   

[MAlegant]

Hi Sue,
Sorry about the slide, but it seems to be part of the recovery.  I have/had many of the symptoms you describe and they did really come on once I returned to work (stress) and got worse toward the end of the day (exhaustion).  Most of the symptoms have gotten better over time (almost 7 months) but there are days when I feel like I haven't recovered at all.  So, yes, sounds normal to me, but I think it will get better.  I'm only just starting to make it to the end of the work day without symptoms.....but when I do I am so proud!  Hang in there, and good for you for getting back to work.
Best,
Marci

[satman]

sounds all to familiar to me, you have been through a lot,hang in there.

[Kaybo]

Sue~
I always thought thatI had more problems AFTER I went back to work than before.  I know that this is NOT true because I had a LOT of healing taking place at home, but I think that when we try to do our regular jobs (& put our all in them), more things show up b/c we not able to just lay down when we want...I had MORE trouble with my eye when I returned - finally had to patch it all day and eventually sew it shut!!  That, & even though I had a stroke, the Dr. wouldn't really acknowledge it & I think was hoping I would just be like most patients and gain strenght & overcome that side's weakness as time went on - I didnt even START PT until I returned to work - SO 2-3 days/week, I would do school all day and then go downtown to PT - talk about draining.  I would literally come home and go to bed until it was time to go to work the next day!!  I certainly couldn't drive - I couldn't do that until OT relaesed me when my brake time when fast enough (b/c of the stroke).  It does get better - cut yourself some slack - you did just have major brain surgery!  My principal said that she could always tell what day of the week it was just by looking at me (or listening to me talk as my speech gets worse the more exhausted I am).  When people comment on how great I seem to doing now or ask how long it took me to get here - I have to say it took a good 3-5 years to get where I am today BUT I had a LOT of complications and I think I got pregnant too soon and that took the focus off MY body's healing and put it all toward the devlelopment of my baby (which I am very grateful!).

Hang in there - it WILL get better!  Soring Break & then summer is coming!!

K

[Patti]

i am happy to meet another science teacher!  i was a middle school, high school and adjunct at a community college-biology teacher.  i did have to give it up.  i am not a maverick.  often i felt like a loser and a quitter, but years of therapy helped me accept the new me.  i am a part-time paralegal now.  how do you manage with SSD in a classroom?  everything you are feeling is normal.  you should take days off as needed, maybe even temporarily take a break from the responsibilities of chairperson (my husband is one-i know how it is).  i am impressed with your get up and go, BUT you don't need to prove anything to anyone.  you just have to take care of yourself.  and do what you need to do to be happy.  patti

[Sue Vogel]

The support and positive comments are very encouraging.  I didn't want to use the "D" word, but as I said in an email to Cheryl R, I turned to my AN friends when I felt that I was getting close to depression over the setbacks.  I'm sure our personalities play a huge role in the aftermath of AN in that we share commonalities in symptoms and problems, but our individual responses to those effects will vary based on our own movies and experiences in our heads.  No matter how poorly I am feeling, I still find myself stopping dead in my tracks when I'm wobbly and off balance and saying to myself, "You can do this."  This week I have started to question myself. 

So it's comforting to hear (from people who understand) that there is some degree of normalcy in what I'm experiencing.

Remember Richard Dreyfuss and all the people who encountered the alien ship in "Close Encounters of the Third Kind?"  We are all kind of like that.  No one else gets it except for those who have experienced it.  We have had a "Close Encounter of the AN Kind."  So far, I'm not building mountainous structures in my living room, but I do find myself checking for scars on the side of people's heads.  And I have recurring images in my head of the MRI housing the walnut shaped tumor and of the funnel shaped blob of fat in my post MRI.  We are anything but dull.

This, too, shall pass, but keep sharing your comments just to be safe.  Thank you so much.

SUE

[Jim Scott]

Sue:

This post is a bit after-the-fact but I wanted to acknowledge your concerns. 

As you now see, your experience is similar to many other AN patients.  The surgery you had was major and although it may not be visible to others, your body is still healing and will need a lot of time before you can return to what for you, is normalcy.  I'm pretty sure you now understand that there is no need for you to be 'Superwoman' all the time.  The reality is that you are not exactly the same, physically, as you were before your diagnosis and surgery.  That being the case, you cannot automatically go back to the way you've always done things.  Full bore with no excuses, in your case.  That kind of straight-ahead work and life ethic is very admirable but may not be entirely practical at this juncture in your recovery, which is not yet complete.  I'm 32 months out of a complication-free surgery and fairly rapid recovery.  Although I'm retired, without the stresses of a young family or pressurized work atmosphere, I didn't feel fully recovered until I was about a year past the surgery. You're 4 months out of surgery.

I would follow your doctor's advice and do what you have to do to accommodate your lessened energy reserves and facilitate your recovery.  Patience is a truism around here, even for busy, productive, motivated science teachers,.    Don't despair, this will pass as your body continues to recover.       

Jim

[JulieE]

Hi Sue, Just my comments on what your experiencing as it compares with my experience:
* More off balance and unsteadiness - especially at the end of the day and when I'm tired; overall balance is worse now
Fatigue seems be an universal issue and there are many threads here addressing it.  I have employed Tony's 10 min rest every hour - may seem like a luxury or unlikely to accomodate in a given workplace, but I find it has better results than waiting till you get leveled for an hour plus after too much excertion.  Looks like you are familiar with yoga, - try laying on your office floor with your legs inverted against the wall (feet up) at lunch.  10 minutes of that is supposed to be better than an hour nap.  At least shut your eyes for short intervals and breath. Feed your brain - eat every couple hours - at least a handful of almonds or pistachios, walnuts or trail mix, etc.  Our own moderator Phyl posted a link to a pdf that answered so much and validates our situation:

http://www.modularmisfits.com/forums/files/Brain_Tumor_and_Fatigue.pdf
Besides fatigue, late in the day can provide other problems:  Darkness challenges balance and that is going to take time to overcome, and vestibular tharapy can help.  Longer days are around the corner too. 

I have not experienced the tightness or the spasms, thankfully, guess I can feel blessed about that, huh?!  Others may?
* Eyes don't seem to focus as well, and I feel I squint a lot as the day goes on.
Lots of Refresh or Gentile drops help keep it hydrated.  Drink more water, Good sunglasses
* Metallic taste on the AN side; seems to be associated with saliva glands - subsides
No drool, but I don't talk teacher - we each have unique experiences!
* eyes aren't tracking with head movement as well * Tinnitus is getting louder on AN side  To me, both are indications that I need to crawl in bed and shut eyes, good nights sleep tames brain and therefor tinnitus. 
* Headaches - lots of people will chime in here or you can find threads; I don't suffer thankfully.
Lastly, someone on this forum mentioned 1 month per every hour you were under anesthisia to get stamina back.  I wish someone had told me this earlier, cause I was beating my self up for not returning to norm after the stated 6 weeks, feeling guilty of sloth or something.  For me, I was under 11 hours, and I am approaching 11 months.  Amazing at the progress made in stamina lately, so fairly accurate guide for me.  How long were you down? 
My two cents - never beat yourself up, and my observation is that you sound 'par for couse', and though slides can get us down, you seem to have great tools (attitude, faith, ect.) to cope with it.
Happy Valentines,
Jules

[yardtick]

Sue,

I too experienced all of the post AN symptoms.  I worked full time in banking for 19 months and finally I had to go off on sick leave and now I'm on disability.  Do I feel like a failure? ...NO!  I did the very best I could.  There were days I called in sick and there were day I went in worked, went home and have no recollection as to what went on.  That was extremely scary for me, since I was dealing with high volumes of money, working off of reports and the computer.  I was in so much pain, from headaches and facial pain, popping whatever I could get my hands on to dull the pain.  I wasn't working at my full potential and I received a lousy review.  My coworkers and manager knew how hard I struggled with the pain and how much a struggled to put in my days work.

Last April I thought my whole world was falling in.  I actually feel I had a break down of sorts.  It was a Friday evening, I'm on the couch, crying because I was in so much pain.  My husband more or less had enough of seeing me in such a state and he blasted me in hopes of me regaining some control.  Nope it didn't work.  I spiral downward even more.  I was hysterical.  My 19 year old son was home with us and he started crying begging me to get help.  Monday morning I called in sick.  I called my GP's office for an appointment and he was on holiday.  Tuesday morning  called in sick, and again on Wednesday morning.  I explained I wasn't doing well and my GP was on vacation so I had to wait until he got back to see him.  I saw him the following Monday and he put me off. 

Have things gotten better?  YES!  I'm on antidepressants, neurontin and toradol.  I take ativan in the evening to sleep.  I see my GP about every 6-8 weeks.  Do I think I will be going back to work in the near future?  No, I do not.   My neuroma is on my facial nerve.  It was debulked by a Dr who was not prepared for what he found....long story.  Now I am in very good hands.  I still have facial pain and spasms, dreadful brain wrecks and my concentration isn't what it was before surgery.  Everyday is a new adventure.  I try to stay busy with the house, my four sons and my husband.  I am a much nicer person since I've been off, most days.  I am blessed to have a few really amazing girlfriends who will do anything for me. 

Depression and setbacks do suck, but they happen for a reason.  For me it was to slow down.  Here's a funny story, my eldest son and a few of his buddies went to a psychic fair the fall before I went off work.  He told me she told him all about my facial neuroma, mind you she didn't know the term.  She also said she had a message from my father and it was "Skin, slow down."  Now that was my nickname when I was a kid because I was so skinny,  Joseph had no idea his grandfather called me Skin.  After I was home for a few weeks  on sick leave Joseph brought up his visit with the psychic again.  I put it out of my mind since I do not believe in such things, but......it got me thinking, I guess you could say I did take my father's advice.....

Well Sue, you do what you have to do.  Many of us are in the same boat.  I wish you did not have to go through any of this.  Listen to your body.  Be proactive talk, and talk to your Dr. 

Take care,
Anne Marie

[MAlegant]

And no worries over the "d" word.  Many of us here have experienced depression post-op.  Mine came on at about 3 months or so.  I guess you just can't go through something as serious as this and expect to come through it easily, though many of us like to think we can.  I certainly didn't but now I am doing so much better.  You need to take the time and freedom to allow yourself to feel rotten, both physically and emotionally.  Only then can you begin to truly heal.

Marci

[cin605]

I am having all the same syptoms & have not attempted to go back to work.i fell all of this just by moving around for 3 hours.example:
get up at 8 take ashower do the dishes...i'm off balance head hurts blurred vision.
I have been doing vestub. rehab for 4 months & dailey exersices at home...hitting the 8th month mark soon.
I started w/ the depression about 4 months ago.Taking celexia...seems to make me more tired.

[leapyrtwins]

Sue -

I didn't see it in your post, but did you return to work full-time before trying to return part-time?  I just wonder because, although I'm not a teacher, I returned to work part-time initially and it seemed to be the best idea for me.  Once I had worked a few weeks part-time I decided to go back full-time and I seemed to avoid any big issues.  I think, at least in my case, that going back part-time in the beginning is what made things easier when I returned full-time.

My surgery was almost 2 years ago and I still get slight facial twitching (I had no paralysis), eye focusing issues, balance problems, wonky head, and unsteadiness when I'm overtired or when I'm trying to do too much.  It sounds like you are experiencing the same thing.  If you can you might want to look into working part-time and slowing down when and where it's possible.  Don't overdo it.

As for the metallic mouth, I had it and it was totally unrelated to working.   I tend to think that it's just a side-effect that a lot of us experience; part of the AN surgical package 

Depression is also a fairly common side effect of AN treatment.  I had it a few months post op up until the day I heard my insurance company would pay for my BAHA surgery.  It suddenly felt like a huge ray of sunshine lit up my whole world.  I realized that I hated being SSD much more than I had let myself believe.  No matter how successful your treatment was and how well you feel you are dealing with it, depression is something we're all susceptible to; especially since we are all experiencing a new "normal".   Be good to yourself and do what you need to do to help you get beyond depression.

Jan

[wcrimi]

I can say with almost 100% certainty that all my symptoms are worse after a long tough day at work or if I don't get a good night sleep (especially the latter).   (balance, dizziness, wony-headedness, focusing of eyes etc..)  I keep a weekly journal of my progress with notes.