Ups and downs of recovery--I'm venting, just warning you

[MAlegant]

Hi folks,
I'm at four months post op now, back to work, back to running, back to life in general.  This is all extraordinarily good news.  The not so good news is that trigeminal nerve issues plague me, so I'm often in pain, having a really hard time finding a medication that does not make me feel "stoned", and though I "think" I've made progress, the right side of my face is still very numb in places.  I still have facial weakness but I also "think" that's better but I can't be sure.   I still cannot speak clearly all of the time. 

I'm having a very hard time waking up in the morning and dealing with all of this, though I am getting on with life.  My head doesn't feel right, still can't sleep on THAT side, wow, my complaint list is long.  I have weekly meltdowns at home because the rest of the world says "you look great".  I do know how lucky I am but that doesn't seem to be helping.

Thanks for letting me have a pity party.  I'll try not to do this often, I'm not sure it's productive for anyone else.  At least I haven't lost my sense of humor.

Best,
Marci

[sgerrard]

Hi Marci,

Sorry to hear that the trigeminal nerve thing is getting you down. Of all the symptoms people discuss here, chronic pain seems to me the worst. Eye foo would come in second. The rest are very annoying, but not painful at least. Okay, vertigo can be pretty bad. Anyway...

Does you condition qualify as trigeminal neuralgia? As I understand it, the trigeminal nerve is capable of creating some exquisite pain if it happens to be in the mood. If I were you, I would not hesitate to pursue pain management clinics and neurologists aggressively until something that works to manage it can be discovered. It might take some doing, but it would be oh so worth it. Meanwhile, "stoned" sounds a lot better than "in agony" to me.

I'm pretty sure you know that are still lots of things in life worth getting up in the morning for, even if you don't feel quite right. Whenever it gets you down, just come here and vent. Oh wait, you just did that. No matter, vent whenever you need to.

I hope the weather changes and you feel better tomorrow.

Steve

[leapyrtwins]

Marci -

I wish I had some wonderful enlightening words to help you deal with your nerve issues, but unfortunately I don't.

I just wanted to say that I'm glad you haven't lost your sense of humor.   Although I didn't have the issues you are having, I found humor was instrumental to my recovery.

I hope this problem gets resolved soon as it must be very frustrating and painful for you.  I know what you mean about pain meds making you feel "stoned" - I rarely take them because of this very reason.  Thankfully I have a high tolerance for pain, but if you need to take them, as Steve suggested, "stoned" might be better than "in agony".

Four months post op isn't really that long when you consider the fact that you had major surgery.   Has your doctor given you any indication whether the nerve issue will get better in time?

Jan 

[wendysig]

Hi again Marci,

I didn't realize what a rotten day you were having when I PMed you a little while ago.  It's okay to throw yourself an occasional pity party as long as it doesn't last too  long. Part of belonging to a support group is being able to gripe and have other people care.   I think Steve has some wonderful suggestions and hope you will look into them.  I don't think you should have to suffer with pain or have to feel stoned to escape it -- hopefully you can get relief some other way.   And yes, keep that sense of humor going --it always helps.

Hope you're feeling at least somewhat better,
Wendy

[Jeanlea]

Hi Marci,

It doesn't seem fair that your face is numb and yet you have pain.  Hope you are able to find something that will help with that.  It's good that you are able to be back and work and running.  Four months isn't really all that long in the brain surgery recovery timeline.  Sure hope you see some improvement. 

Jean

[msmaggie]

Hi Marci,

Can't exactly say I feel your pain because I am a pre-postie.  However, I do have some experience in throwing a pity party.    Great place to visit when the need arises. Wallow for awhile, but don't take up permanent residence.  Wish I had some magic words to calm the waters.  I do wish you relief from pain and strength to carry on.  Know that prayers and good wishes are coming your way.  I anticipate airing out my own complaints to ears willing to listen and commiserate.  Please know that we care!

Priscilla
aka msmaggie (I'm coming out of the closet)

[MAlegant]

Thanks everyone for listening.  Priscilla (msmaggie), I will try not to make the pity party my permanent home.  It's not my nature, that's for sure.  Perhaps I am finally crying all the tears I've been holding in for months.  Steve, the weather did change today; now it's rainy and gray.   
Love,
Marci

[Kaybo]

Great world, Donnalynn and well stated!

"MsMaggie" - I've kept your secret, but I'm glad you are "coming out"!!!   

Marci~ Glad today is better!!

K

[Jim Scott]

Marci:

Sorry, I was delayed and came late to the so-called 'pity party'. 

You're recovering nicely but, and here's the rub, not completely and you certainly have good cause for a bit of frustration.  All the really good advice has been offered by others more knowledgeable than I am so I'll simply apologize for my tardiness and wish you better days, along with knowing you are in the prayers of many folks you've never even met.  Try to stay strong.  Where you are today with your recovery is not where you'll be tomorrow and four months is really not as long for recovery as it must seem to you right now.  You're doing well and will continue to improve but it would be wise to seek whatever medical help you can find to relieve your pain and discomfort. Meanwhile, feel free to vent whenever you need to...that's what we're here for, among other things. 

Jim

[windy]

I pm'd you yesterday, but I did want to say I completely agree with Donnalyn!  It is quite noticeable you are an encourager!  It is your time to be encouraged.

[Denisex2boys]

((((HUGS)))) Marci ...
I am so sorry you are going through this ... I feel your pain - - I must admit I feel TEN times better now that my headaches are controllable - but I too have sore spot on my face, incision site and numbness - - I am still recovering at home and will be until prob. January - and even though I am looking pretty good - sans the eye and some facial weakness I can't even imagine going back to work right now - - I try to lay down during the day but can't seem to nap anymore - - and I find too that my voice gets 'funny' later in the day do to the numbness in my throat, side of tongue and I start to almost lisp.

You are a strong woman as we all are here - - but as all of you keep reminding me ..... we all had a very major brain surgery and unfortunatley healing will take it's own time ..... I still find it hard comprehending that I went into this a physically strong healthy woman and came out on the other side feeling as though I were hit by a mack truck ....

Continued ((((HUGS)))) and prayers for the ceasing of pain and management XO

[Tisha]

Sometimes when I read these posts from people who are dealing with treatments, and because I'm not in your shoes yet, I feel inadequate to offer comfort.  However, your post really touched my heart because of your honesty and I could feel your pain.  I'm so sorry that you are hurting, physically and emotionally.  But, I really feel that if anyone deserves to meltdown and cry sometimes, it's those of us who have been hit with this life-altering tumor.  Yes, it's not life threatening, and we all know that, so that's why we feel guilty at times for feeling sorry for ourselves.  But it IS a BIG deal, it is something that has thrown us off our feet and changed the lives that we've know forever.  I think it's normal to grief what has been lost.  You've only just recently had your procedure, you are so entitled to just want to stay in bed sometimes.  Big hugs to you and I hope your weekend turns out to be better as it goes along.

Tisha

[Tisha]

Donnalynn,

I love reading all your posts and get encouragement from everything you write.   You make such sense when you say that all our family really wants is our LIFE.  Because I know if the roles were reversed, I would just want their lives.  And there is a strong need for everything to be "normal".  Sometimes I think that's why I don't tell more people.  I need the everyday friends (not close friends), but just friends and acquaintances to just treat me normal, not with pity in their eyes, or to start avoiding me.  I feel very lucky right now that my kids are still at home and my life evolves around their needs and activities.  It keeps me focused, busy and NORMAL, just like you say.  Anyway, I just wish you a better weekend and hope that you are able to receive, somehow, the encouragement and hope that you are able to give everyone else.

Tisha

[LADavid]

Hi Marci
I totally get it and understand your frustration.  The only thing I can promise as others have on the Forum -- things do get better.  Here I am coming up on my first year anniversary and (other than synkinesis) my head still doesn't feel right (I don't have the sharpness I used to have and my head feels like a water balloon) and I have very wobbly days.  But the good days are outnumbering the bad days.  And as someone assured me, my taste would come back.  I don't recall when it did, but my taste is back -- and I just started sleeping on my AN side.  And I don't bite my cheek and tongue any more.  Also, do you have tension in your neck?  That could trigger headaches.  I had tension that was causing disorientation and spaciness.  My physical therapist showed me an exercize that takes the strain out of the neck.  It really helps.  I only feel like an air-head some of the time now.

It's a bunch of baby-steps.  Hope you're seeing them soon.

David

[Dog Lover]

Hi Marci,

I totally understand about your head not feeling right. It's hard to describe, isn't it? People tell me that I look and act fine and even forget I had the surgery. That's all well and good, but when you look good on the outside, but still feel weird on the inside, it doesn't really make you feel all that great. The only way I can describe it is it's like my head is kind of heavy or tight, but like on my AN side or sometimes in the back. And while I'm not dizzy, I feel like things are quite as good as they are at other times. I like how LADavid described it - like an Airhead!

I get so sick of not feeling good, but if I look at the big picture, the good days are getting better and happen more often and the bad days are not as bad as they used to be and don't happen quite as often.

Hope you're doing better. We all have our days. Like someone said on another thread...it's a bumpy road to recovery. I wish it was just a steady climb. The more time after surgery I get, the more frustrating it gets for me when I'm not feeling so good.

Hang in there. Think big picture. We all need to vent at times. No one else can really understand exactly what we're feeling or what we're going through.  I hope you find some relief for your pain. 

Cathy