Reflecting on previous post from Oct/09 and it seems I'm still where I was then

[lauralynn]

Hello AN Family,

Sorry to keep posting over and over, just trying to get some help since my doctor's aren't being very helpful. I was just reading the post that I put on here from Oct of 2009 when I returned back to work.  Shouldn't I have more energy than I did almost two years ago?  Is that the norm for someone having a large AN?  I feel just as tired as I did back in Oct of 2009.  From the minute I get up in the morning til the time I go to bed that night, I feel exhausted, am so weak and have pain all day.  Everything seems like such an effort, even the littlest things.  Do we (as AN post ops) have to wait years to get some kind of relief?  Does anyone ever have a day when they actually feel "good"?  I haven't felt good since before I had my surgery.  Am I possibly looking at another 2-3 years of dealing with pain, fatigue and weakness?  I know we all heal differently, just wondering how others with large AN's make it through each day, what helps you?  I'm at a loss and don't want to go through another year of struggling with all the issues that I have.  I'm still working full time and when Monday comes I just want to cry because I don't know how I am going to get through the day or the week.  I go through each day pushing myself and wonder how I'm going to make it...just through the day.  Any responses would be greatly appreciated.  Thank you for reading.

God Bless,

Laura Lynn

[Tod]

Laura Lynn, posts like yours make feel guilty for being so lucky. I am just now a year out from a long surgery to remove most a large tumor.While I am much slower in the mornings to come alive and get moving and I don't have the energy levels I think I should, all things considered, I'm not doing too badly. Of course, in my case, I had such severe sleep apnea that was diagnosed (the sleep study started a couple hours after learning I had a large life-threatening tumor) and put on CPAP a month before surgery, that it is hard to separate what causes what.

The fact is, there are days when I am not only happy, I actually feel joyful - for no particular reason at all. I just plain feel good and enjoy life. The good thing about this is that it occurs despite the fact that I can't sing (which breaks my heart at times), it takes a lot of effort to talk (and that may cause me to give up certain career options), and I still have to be careful about swallowing.

If you haven't felt good since before surgery, then perhaps you should look for other causes? I think it is easy for us to get hung up with the central reality of our tumors and forget that there are other things that can be wrong.

The one thing I do know from long practice, is that it if you can get up and face each day, you have won a major battle. Once you can do that without thinking about it, each day gets a little easier. I am sure you will get there.

I hope and pray things get easier for you soon,

Tod

[ppearl214]

LauraLynn

As one that had CK done, there are days (even after almost 5 yrs since my treatment) that overwhelming fatigue sets in.....

What I can share is this...... it is very public knowledge that with any type of brain tumor (benign or malignant), fatigue is a common denominator with many brain tumor patients.

Here is a link to a "Fatigue and Brain Tumor" brochure that I picked up at Brigham/Woman's Hosptial that I have shared with folks here over the years.  Dr Peter Black/NS at B/W and Nancy Conn-Levin wrote this a few years back and is available in his waiting room/NS Clinic at B/W.  Many here, over the years, have read it and it helped to bring answers as to "why" so many endure the fatigue and ways to combat it.  Maybe it will help.

http://www.anausa.org/smf/index.php?topic=10572.0

Hang in there... and please know you are not alone in experiencing this. Regardless if surgical or radio treatments for all types of brain tumors, many of us suffer from the fatigue but, we can also fight it.  Hang in there.

Phyl

[Jim Scott]

Laura Lynn ~

I regret that (a) you're experiencing such debilitating fatigue this far out from your treatment and, (b) that I have no easy answer to your question as to when the fatigue will abate.  Soon, I hope.  I had a great recovery but do get fatigued.  However, I had my AN surgery at age 63 and I'm in my late sixties now and so I think it's safe to assume that my age is a major factor in my fatigue  I'm retired, which makes my situation a lot easier than yours and, overall, my fatigue is relatively manageable.  I suspect that stress (possibly job-related) is a factor for you but that is mere speculation on my part.  Perhaps, as Tod suggested, something other than your AN treatment may be a factor in your stubborn case of fatigue.  A general check-up by your PCP may help to prove or disprove this theory.  I certainly hope you (and your doctor) can find a distinct cause for your continuing weariness and thus, address it in order to alleviate the fatigue that is clearly having a negative impact on your quality of life.  You'll be in my thoughts and prayers, Laura Lynn.  I truly hope you can regain your energy, soon.

Jim     

[opp2]

Hi Laura Lynn,

I'm terribly sorry that you are facing such obstacles every day, and that the doctors don't seem to be much help. I wonder though...has anyone suggested that you may also be suffering depression on top of and because of all you've been through. It's not uncommon to have AN patients diagnosed with depression, especially those who have faced such obstacles. Perhaps a visit to a different kind of doctor might be in order??

[lauralynn]

Hello Everyone,

Thank you for responding to me.  I have been to several doctor appointments including my pcp that did blood work and that came back fine.  I just saw an Endocrinologist as suggested by my neurosurgeon and she didn't understand why i was sent there and that I should have been referred to a neurologist.  As far as if I'm suffering from depression, I don't believe that is it.  I have my two beautiful children and my church family that really lift my spirits and keep me going.  My body is just so weak, just as it was when I left the hospital,  maybe a bit stronger but I thought by now I'd see a bigger difference.  I'm left handed and my hand gets tired just after writing a few words.  And my mouth has pain issues everday whether I'm working or not and my eye (with gold weight implant) is irritated daily.  The whole AN situation is still kind of new with me (even though surgery was in 2009) but I'm still learning and trying to learn more so I know what is to be expected and what things may be something to be concerned about.  I go to see my neurologist next Wednesday so I will be discussing everything with him and hopefully he can point me in a direction that will be helpful for me.  i will keep everyone posted and thank you again for responding.

God Bless,

Laura Lynn 

[Kaybo]

lauralynn~

I, too, am so sorry that you are still having such severe problems.  It took me a LONG time to get back to where I am now but I attribute a lot of it to getting pregnant too soon.  I had a 14 hour surgery and a stroke and was still trying to recover from that when I got pragnant at just one year out...I lost that baby but got pregnant again just 2 months later (can you tell I REALLY wanted a baby??).  I just think that my body couldn't heal like it needed to when it was giving everything it had to form a new life!  People ask me all the time how long it took me to get where I am today...my answer...a good 3-5 years!  I don't say all that to discourage you, but hopefully to give you some hope that it WILL get better...

K   

[yardtick]

Laura Lynn,

I was exactly like you at the same stage of your progress, mind you I had 4 teenage sons and a husband so I didn't have to do all and be all.  They got so upset seeing me day in, day out struggling just to go to work and than withdrawing from them the moment I got home from work.  Thankfully as you know I am off on disability and it will be 3 years in April.  I have tried so many different types of medications to help me deal with the headaches and facial pain that never really leaves me.  Sure one day it might be just the head and another day just the face, but most days it is both the head and the face. I spend a lot of days resting and trying not to move so I do not rattle my head and cause any more pain.  

I too am left handed and the left side of my body is so much weaker.  I went for physio to help strengthen my left side and guess what there was no marked improvement.  The kinesiologist was surprised and stumped, even the physiotherapist had no answers. I have to discuss this with my Doctors because I do not understand it.  I'm grateful I'm ambidextrous, when I was kid I had to learn to use my right hand.  Showing my age here!  

I hope your next appointment with the neurologist will be more informative.  Ask about Cymbalta, it does have nerve pain properties and for me it has helped take the edge off the rawness of my pain and my husband claims I'm not jumping down his throat as much.  When I'm struggling with pain I just want to be left alone and I guess I do get miserable.....maybe.....once in a while, but any way he says I'm not as difficult.

Hang in there,
Anne Marie

[skamper]

Laura Lynn,
I so feel for you right at this moment.  I had my AN removed in April last year, 7 hour surgery, almost 3 cm big.  I still have to take a nap almost everyday when I get home from work.  I just hate it, I have three beautiful daughters who I feel I am shuting out a lot since surgery.  I thought by now I would be feeling so much better and have so much for energy.  Lately I've been just the opposite.  All this week, my neck and head pain as been unbearable.  I too, like you, get up and manage to make it through an 8 hour day of work and then come home to try and be a good mom.  I also co teach Religious Ed at our Church Monday nights and am a Girl Scout leader for my 5th grader. 
I hope you find some answers soon and maybe if you post them they will help me find some strength in my struggles as well.
I'll say a prayer for you and your family in that you find the strength you are looking for.
Susan

[lauralynn]

Hello Susan,

I am so sorry that you too are suffering.  I too get home from work and am extremely exhausted.  My kids are very patient with me, thankfully.  I too will pray for you and your family.  I go to see my neurosurgeon next week to discuss EVERYTHING with him that I deal with everyday in hopes that he can help me somehow.  I know there is not a miracle drug out there but I need some guidance or help so I can continue to work and to be able to be the Mom I need to be.  I will definately keep you posted on things.  Thanks again.

God Bless,

Laura Lynn

[skamper]

Yes, please keep us all posted.  I will keep you in my prayers and will hope for answers for you.
Good luck and don't be too hard on yourself.  I know I feel like a horible mom sometimes and then the girls remind me that I had brain surgery and it's going to be okay.  They are my life, I don't know what I would have done without my girls and my husband.  Family support always helps you get through things.
God Bless,
Susan

[moe]

Laura Lynn,
I feel your fatigue and can totally relate.
What kind of work do you do?

A lot of people have to go through a sort of soul searching within their profession and some end up changing their venue of work, because of the symptoms which continue to bring them down.
I know for certain that I would NEVER be able to work a full time job, with kids to boot.

I do home health nursing and am able to do it part time, one patient at a time. There is no noise, distraction, chaos in the background. Yet it still fatigues me!
I have to factor in a nap each and every day, or else, I'll just hit the sack by 6 or 7 pm (the tinnitus is what drags me down).

I also started on a new antidepressant (abilifty-very low dose) to augment the zoloft, which has increased my energy level.
There are some posts on the fatigue and vitamins that people have tried.
Here's a blurb:

"For fatigue there are several nutritional items that can help. B vitamins are very important (I AM NOT A DOCTOR and so take this as information I have acquired and use). I take a B-complex supplement plus B-12 as it is important for energy as well as nerve health and repair. Vitamin C is good for energy, but need to take a fair amount, like several 1000 mg a day. I generally don't get that much in me, but take 1-2 thousand anyway. Have you had your Vitamin D levels checked? That is becoming more and more noted as an important indicator of overall wellbeing as well as many other things. Mine is low; I take a large amount prescribed in a weekly dose by my GP, but it doesn't get "high." "

I'm almost 5 years post op and still getting there.....It just takes time. And brain surgery is considered Traumatic Brain Injury, so give yourself up to 5 years....I'm close to that.... will have to think of those excuse soon
Hang in there,
Maureen

[Suu]

Hi Laura Lynn and all

I want to thank you for your posts and everyone's answers because I thought I must be doing this alone.
Although I don't work, I am feeling all that you are and will be seeing my ENT and neurosurgeon next month but wanted you to know that you're definitely not alone.
Good luck.

Suu xxoo

[lauralynn]

Sue,

I'm sorry too that you are suffering so.  I'm going to start a new topic to post an update on my most recent dr appt.
I just pray that there is a light at the end of this big dark tunnel we are in now.

God Bless,

Laura Lynn