Need help and guidance please

[lauralynn]

Hello to my AN Family,

I have not been here in a while.  Since my surgery to have my 4 cm AN removed in 4/09 I've been trying to overcome all my issues from the surgery.  I continue to deal with chronic fatigue, weakness, facial nerve pain and eye irritation due to the gold weight that was implanted.  I deal with these issues everyday.  I thought things would have shown improvement by now, but it seems I am physically the same as I was about a year ago.  I don't know what to do.  I've tried vitamins, eating the right foods, pain medications prescribed by my neurologist, exercise and nothing seems to help.  I know everyone heals differently, but I don't know what else to do to try to improve my health.  I went to my pcp to get a viitamin B shot, she said it would take affect w/in a week.  Nothing happened and my neurologist said I would need to get the vitamin B shot once a week and maybe that would help.  My neurologist suggested I go see an endocrinologist to make sure nothing else is causing the fatigue.  My pcp did blood work which all came back fine.  Am I wasting my time going to the endocrinologist?  I scheduled an appointment to talk with my neurologist because I am so frustrated with my symptoms that seem to be staying the same or even worsening.  I work full time and have two little ones at home so when I get home from work I'm ready to collapse.  The fact that I work at a call center and have to talk all day really doesn't help either.  Anyone out there that had a large AN and can relate to what I'm dealing with, please respond with any suggestions you might have.  Thank you 

[CHD63]

Hi Lauralynn .....

Good to hear from you again.  So sorry you are continuing to be troubled with the ongoing fatigue.  Working full-time and coming home to little ones at night would make anyone tired, I do believe.

At about a year and a half out from my surgery I was so discouraged because it seemed like I had reached a plateau in my recovery.  I was so tired, both physically and emotionally, and I was not working nor had little ones at home anymore.  This continued for several months and then it gradually lessened to what I am today at almost three years out.  I still require more sleep than I did before the AN, but I have learned to work through most of the fatigue during the day ...... only occasionally taking a nap anymore.

Just struggling to maintain your balance, decipher conversations, and deal with your ongoing facial nerve and eye issues is known to sap energy.  I am not sure it is a vitamin or hormonal deficiency but a matter of the brain being exhausted and it just needs to rest.

My hope is that gradually your brain will learn to deal with the mixed inputs and you will experience less of the fatigue as time goes on.  If you can get some relief from the facial nerve pain and eye irritation that would reduce much stress on the brain.  Have you been to a pain clinic?

Many thoughts and prayers.  Clarice

[lauralynn]

Dear Clarice,

Thank you so much for your kind words of wisdom.  I have been looking for months now for other employment that wouldn't require me to talk all day.  I can only keep looking and praying that something else comes along soon.  I have not been to a pain clinic and as you can imagine the pain is at its worse when I'm at work.  So there again, if I could only not have to talk all day.  I'm sure stress plays a key factor w/ making my issues worse.  I will discuss w/ my neurologist about a pain clinic.  I have to wonder if the endocrinologist will be able to help me.  Yes, working full time and coming home to lil ones did tire me out prior to the AN surgery, however, as you know, the tiredness that I have now is way more intense and I feel guilty alot because my lil ones want to do things and my energy is so low.  I push myself everyday to do what is expected of me.  It is so hard when you wake up and you are sooooooo tired all day.  I hope and pray I will get some relief in the near future.  I will keep you posted on things.  Thank you again.  God bless, LauraLynn

[Kaybo]

Lauralynn~
I am so sorry that you are having to deal with all of this.  Unfortunately, as we always say, AN's are VERY different - the symptoms they reveal before surgery and the recovery...but also is the LONG TERM effect that is placed on your life.  It seems that some of us with a multitude of "side effects" have a lot more to deal with over the long haul.  I went to a Dr about 4-5 years after I had surgery because I was having some strange reactions caused by the 12/7.  That neuro (which was not involved at all with my AN up until this point - different city) asked me, a bit incredulously, "So you work full-time AND have a baby??"  To which I replied in my perky, blond way, "Yes! and I am trying to get pregnant again!!"  He just shook his head and said (& I'll never forget this), "You should be doing ONE of those things..." - I'm not sure now if he said or just implied "Your body can't handle all of that at once..."  I was not only in a job where I talked all day, but it was also very physically demanding as I was an elementary school teacher!!  I would literally come home most days and go to bed until the next day - the principal told me that she always knew what day of the week it was by just looking at me!!  Thank goodness, I was EXCEEDINGLY blessed to be able to stay home from the time that my 2nd was born (I taught the whole time I was pregnant) and have been able to stay home since - things have NOT always been easy financially, but we decided that is what we had to do for our family and my health.  Over the years, I have considered MANY jobs, but after Dave & I have talked thru everything, it always comes out that I would have NOTHING left for my family.  Even now, it seems like the jobs just never "work out" - I think God is trying to tell me something!  I know that not everyone has that luxury of quitting their job, but I do have faith that God WILL work something out for you - that may be thru disability or a different job, but something will work out.  I also think that as time marches on, we learn to cope better AND to schedue things so that they will best fit into our AN lifestyle.  I don't want to be a downer, but I think that those of us with bigger tumors and more involved surgeries/recoveries have a LOT more to deal with than many others - even though we are all recovering from the same thing.  I agree with Clarice - your brain is just overtaxed and sleep & rest is all that can help it!!

Hang tough and know that we are here for you!!

K   

[sunfish]

Although I can't relate to having had surgery for such a large tumor, I can relate to fatigue, and especially serious frustration over the laundry list of symptoms that an AN can leave you with.  I just got back from taking my "health problems list" to my primary care doc, with the goal of having her help me untangle this mess and figure out which problem to tackle first.  I would recommend that - make a list of all the health problems that are frustrating you, take it to whichever of your doctors you think is the brightest/best, and say HELP!!  Also, I think the plan of going to an endocrinologist is excellent.  My sister has regularly seen an endocrinologist over the years, and she swears this doctor has the best, overall perspective regarding her health.  Don't know if it would be the same for you, but I'd say it's worth a shot.  Take care and God bless!

[suboo73]

Lauralynn,

I too, am sorry to hear you are not feeling better these days.
As Kaybo and Clarice already mentioned, you are doing a lot -- taking care of young children, working, all while trying to maintain your balance, deal with facial issues, etc.
And working in a call center - WOW!  I used to work in a call center when i lived in North Carolina, while pregnant with my 2nd child - i remember those days.

Personally, i think seeing the endocrinologist is a very good idea. 
A friend of mine also had trouble with vitamin B and had to take shots weekly for quite awhile - maybe 3 months, i forget.  She had problems with absorbing the vitamin B.
I know it can be frustrating, but i would not give up looking for answers!  Be persistent, you can do it!

Also, go easy on yourself - you deserve some quiet time/relaxation time, even small snippets - i hope you can grab some now and then.

My prayers are with you as you try to find answers.

Sincerely,
Sue

[Jim Scott]

Hi, Lauralynn ~

Although it's good to see you posting again I'm sorry it has to be under these somewhat negative circumstances.  There is no question that you've struggled with a host of AN post-op issues and you certainly have been proactive in seeking relief.  That you feel stymied in your quest for wellness is understandable.  Who wouldn't?  Your frustration is perfectly logical.  The fatigue must be daunting.  My adult son works in a call center (supervisor) and I know how tiring and stressful that kind of work can be.  Add in the two young children at home and, well, I'm getting tired just thinking about it.  Unfortunately, I don't have any easy answers except to try to carve out a bit of time each day just to de-compresss.   For now, you can't be all things to all people and until you and your doctors can find a way to get your recovery moving forward and resolve some of your post-op problems, you should just try to cope as best you can and not obsess about what you can't do.  Remember that nothing really remains the same, indefinitely (it just seems that way).  Meanwhile, you're in the prayers of many, including mine. 

Jim

[lauralynn]

Thank you all for your kind words.  I will keep you updated on things.  I have several appointments in February so I am hoping I will get some help and positive answers from my physicians.  It is Friday and that is a ray of sunshine for me coz I know I can catch up on my rest over the weekend and I don't have to talk all day. I live for my weekends like never before because I know I can relax.  I know that someday I will feel better and I just pray that time will be here soon.    Laura Lynn 

[rayden1]

Hi Lauralynn ,

Of course you are exhausted. It is normal I think. It took me a good year and I was not working  and my two boys in their teens. Do not be hard on yourself, you are dealing with lots of issues. It all takes time. Hope things improve for you soon. Thoughts and prayers with you. Good luck

Annx

[Kaybo]

LL~
Hope this week is going well for you!  Just wanted you to know I was thinking about you!

K   

[lauralynn]

Thanks Kaybo for checking on me, so sweet of you.  The last few weeks have been rough.  Not sure if I should be concerned but my left hand/arm have been way more weak than usual and I haven't done anything different.  I'm gonna open a new topic about what has been going recently.  Thanks again for checking in.  As always, I continue to focus on my kids to help me get through each day.

Laura Lynn

[rayden1]

Hi Lauralynn

How are you doing now ?

Ann x

[lauralynn]

Hello Ann,

Thank you for checking on me.  I'm hanging in there...taking a day at a time.  I saw my primary doctor yesterday after a scarey episode from medication (Amitripyline) that was prescribed by my neurosurgeon.  I only took it for 4 days and on the 5th day...one minute I felt fine and the next...I literally thought I was going to die.  Worst feeling I have ever experienced.  Well I stopped taking that when that happened.  I called my neurosurgeon that prescribed it and told them what happened and all they told me was if it happened again was to go to the ER and follow up with my pcp.  So yesterday my pcp gave me a script for percoset to help with the pain (my neurosurgeon was prescribing that and I had called them coz I had no refills and they never helped me with that).  My pcp also gave me a vitamin B shot which she wants me to get once a week for a month to see if my energy improves...I sure hope it helps.  She also recommended I see a pain management specialist. 

Though my neurosurgeon has not been that helpful he did order my employer to put me on long term disability.  That was Feb. 23.  My employer has denied his request and it's in appeal now.  I will find out sometime this month if they are going to approveit.  I sure hope so because being off of work has been so helpful.  I get the rest that I need and I can take my pain meds when I need to and I can be more of the Mom that I need to be for my 12 and 10 yr old children.


ChristineH (from the forum) recently reached out to me since she is having surgery (today) by my neurosurgeon,  I was fortunate enough to meet her yesterday at her pre op appt.  I am going to help her as much as I can.

I will let you know how things are going...thanks again for checking on me.

God Bless,

Laura Lynn

[Suu]

What a caring person you are to put yourself out there to comfort ChristineH while you are still suffering yourself.
My thoughts are with Christine but my thoughts are also with you.  The world needs people like you and I'd like to say a big thankyou.
(((((((Laura Lynn)))))))
Best wishes,
Suu xxoo

[lauralynn]

Hi Suu,

I'm glad that I can be there for Christine...I don't want anyone to go through what I have.  I'm looking forward to visiting her in the hospital and taking her for walks and helping her as much as I can.  I haven't heard from her family yet...very anxious to hear how she is doing.  Yes, I am suffering but that is not going to stop me from helping others...I'm determined to have lots of positive things happen from my AN journey.  The negative has been going on too long...time for a change and time to make some good things happen. 

God Bless,

Laura Lynn