Where do I start?

[salamander]

Hi!  I'm new here.  Or maybe I should say I'm newly "coming out".  I have been lurking in the background for awhile and have found a lot of helpful information.

I do not have a specific question, but want to connect with all of you.  I found out in September that I had an Aucoustic Neuroma, and had it surgically removed in November.  I am struggling with the recovery.  This really sucks!!  And I can tell from many posts that you all know what I'm saying.

The thing that is so frustrating is that there is not one recovery path or time.  Talk about an individual experience!  When I found out about the tumor, I was told that I would lose my hearing in the right ear. But I was told that it was "no big thing".  Well, i now know that it was not a big deal because there are so many bigger "Things".  I have no movement on the right side of my face nor timeframe for recovery.  I lost the ability to write with my right hand (although that is improved now and I can sign my name).  I was told to walk alot, but am only "starting" to feel good enough to do much.  And that is on a "Good" day, which alternates with bad ones.  I'm guessing that I don't need to mention the headaches or eye problems!

I have always been a very positive person, but this is really stretching my patience.  I am struggling a lot with depression (I live alone).  I question whether I will ever return to my career, which requires a LOT of travel.  Not that I had any vote in this matter, but wow, if I only knew what I know now!!

So, on that cheery note, hello!  I look forward to getting some smiles (well, maybe half smiles) from corresponding with all of you!!

Please help me get a better attitude and hope for the future!!

Samantha

[Syl]

Welcome, Samantha,

It is tough isn't it? It's really recent since your surgery. At around 1 month post-op I still felt pretty lousy, didn't drive and was using a cane for walking and didn't feel like doing much of anything. I returned to work after 2 months though I was still feeling lousy. I found that returning to work helped me in my recovery. I'm 6 months post-op and am having a lousy week. It is a long and rough road, but there are more good days than bad.

Are you getting any treatment for the facial paralysis? What about the headaches? Do you use a heating pad. I use one and consider it a life-saver. Add some otc Tylenol and my headaches are pretty manageable.

Why has your right hand been affected? This is something I haven't heard of before. What size was your tumor and what procedure did you have?

Hang in there--it'll get better.

Syl

[salamander]

The tumor was 2.7 CM on the right side.  Yea, I am confused by the right arm.  One resident said it might be because of the retraction of the brain.  But the surgeons didn't really have a theory.  They didn't seem surprised but also didn't really have any explanation.  I know the body is "managed" by the opposite side of the brain, so I don't really get why Right tumor, right arm.  It is like the fine motor skills were screwed up.

I do use the heating pad on my neck, which really hurts!  I use it at bedtime for awhile and then always use it in the morning when waking up.  I can't imagine life without my heating pad.  I haven't used it on my face or head - wasn't sure if it was a good idea.

I was very sad and cried the other night (HARD).  I think it strained the muscles on the right side of my neck because the right facial muscles are not working.  SO much for just letting it go! I'm now afraid to cry!!

Thanks for the welcome and ideas. I keep reminding myself that it has been less than 2 months and it was BRAIN surgery.  I just need company in my misery and hope that things will improve.  I am now recognizing that while things will get better, they will never be the same!!

Samantha

[Jeanlea]

Samantha,

Welcome to the group.  Glad you decided to "officially" join us.  Under two months is still very early in the recovery process for an AN.  I remember just being overwhelmed with the whole bunch of after-effects and just crying.  I remember being told that losing your hearing on one side would be no big deal.  Yea, you're right.  That's because all of the other things are so overwhelming.  But it will get better with time.  The P word (patience) will be your least favorite word, but it is the one thing you will truly need to see you through this. 

You mentioned having weakness on your right side.  I also had weakness on my AN side after surgery.  I didn't really notice it until I'd gone home from the hospital.  It was difficult for me to type at first.  Now over three years later I really don't have a problem with it.  Even my face, which was totally paralyzed after surgery, looks near normal.  I can even smile again even if it isn't the huge smile I had before. 

One of the best ways to help yourself heal is to come here and share your frustrations and highlights of your recovery.  Everyone here is so helpful and caring.

Hope this message finds you feeling a tiny bit better.

Jean

[leapyrtwins]

Welcome Samantha -

it sounds like you are having a tough time, but I'm glad you are no longer lurking and are reaching out to us.  We are here to support you in any way we can and you'll find that posting on the forum can be very therapeutic (I think I spelled that right  )  Please know that you are not alone; we know what you are going through.

The best advice I have is be patient.  Recovery takes time, and 2 months is not that long; in the end most issues tend to work out.

I want to encourage you to get help with your depression.  It's quite common post op and recognizing that it is an issue is a great first step towards doing something about it.

Hang in there,

Jan

[JudyT]

Hi Samantha......I too live alone and have those fearful moments......but they don't stay. I am 4 years out from CK.....with many side effects. Some days are good..some are not. I think my worst enemy is anxiety....my mind runs wild with thoughts...tears...etc. Then I come here and find comfort and companionship. It's not an easy path we are on....understanding our dilema isn't easy for non-Aner's. We don't even understand it sometimes but we keep on going....you will come through too. Be good to you!

Judy

[MaryBKAriz]

Hi Samantha,

I want to also welcome you to the group.  Although my postie symptoms are different, your post resonated with me. I, too, have also been a positive person and yes, I am being tried also. I am also having issues with my hand coordination (tremoring). In fairness it was there pre treatment but has significantly worsened. I think the doctors as a whole are terrific and mine is really, really great, they just don't know all there is to know about this and we all present so differently. Hang in there Samantha. We are here for your good AND bad days. You are still recently post surgery and unfortunately it does seem to take a long time time when you are going through it.

Mary 

[MAlegant]

Hi Samantha,
Sorry you are going through this.  Recovery is a long, slow process, but it will happen.  Keep following up with your docs, or ask them to recommend someone who can follow up with you.  I thought I was prepared for the after-effects of surgery, but as it turns out, I was not prepared for some of the issues.  That is enough to make anyone depressed.  I don't like the "new normal" but I'm coping as best I can.  Here is what I do to fend off the really bad depression: a very low dose of anti-depressants, exercise and as much fresh air as possible, visit my therapist as needed (much less now but at 2 months I fell into a deep depression), massage therapy, dog therapy (I have two goofy dogs) and writing and posting on this forum.  I am back at work and back to life in general but I have daily struggles that are a constant reminder.  I'm trying very hard not to let anything stop me from living my life, which I am very grateful to still have!  I hope all issues will resolve themselves in time but if they don't I will deal with it.  I'm giving myself a year before I jump to that conclusion.

I hope this helps, but the reality is what it is. And remember, 2 months is still VERY EARLY after brain surgery.  PM me if you want to chat.  Happy to talk on the phone as well.
Best,
Marci

[sgerrard]

Hi Samantha,

Welcome to the forum, we're glad to have you. Whether it's questions on symptoms, venting frustration, or sharing some fun, we've got that. Nothing beats having some friends to share it all with. Take off your shoes and make yourself at home. 

Steve

[windy]

Hi Samantha,

I don't post too much, but your message spoke to me in a relative way.  I completely relate to how you feel and you are not alone.  I did not have surgery, but had Gamma Knife, and am still am dealing with many issues that I did not think would occur.  We have all have had a brain tumor though.  We can all relate on many of the same issues. 

I am single, so I understand the aloneness you can feel.  I have a supportive family and friends, but they have not had a brain tumor and can only understand to a certain degree.  I have always thought of myself as a very positive, happy person.  This problem, however, has knocked me for a loop!  I have never cried with any other problem as I have done with the brain tumor aftermath issues.  Please know that there are others who completely relate to you, you are not alone, and can always come here when you need comfort from others who understand!

It will get progressively better.  It is a slow process.  Each month there will be improvements.  Hang in there and post anytime you want!!

Windy

[salamander]

THANKS to all!!  I felt so depressed yesterday, and it felt good to just reach out and "let it go".  I appreciate the time you each took to reply.

Today, I am happy to say, is one of the good ones.  I am doing my physical therapy in stores, and made it through two today.  I am amazed at how I took so much for granted Pre-surgery!!  And thank goodness for carts, which provide me with something to hang onto!!  Better than veering into the shampoo display. . . which I keep picturing in my dreams!!

I started Cranial Sacral massage (a few weeks ago), and have found it very helpful.  Has anyone used massage as therapy?  That really hellped my body release the anesthetic that it was holding onto.

Also, I have read the various comments about facial therapy but am still confused.  My surgeons at Mayo said that nothing has been scientifically proven to help speed healing.  My local general physician sent me to physical therapy where they gave me an electrical stimulation device that I am supposed to use twice a day.  But now I have read that it can cause cross connections?  And my holistic doctor gave me a "DENAS" device which is supposed to be better yet for the face.  HELP!!!  Am I really best off just using daily exercises and massage?  I don't mind experimenting, but don't want to do anything that willl actually be counterproductive!!  I just can't find anythiing on the web that is definitive.  (I did look at the Bells Palsy site)

Another question. . Does anyone have poor vision in their eye?  I always had poor vision and wore a contact lens.  Is there any hope for wearing correction again?  So far I am just "limping along" with one good eye.  I will visit an optomologist next month to check options.  (Assuming I have months to go before any facial movement)

I am really grateful to have connected.  I can't start to tell you how much I have learned from this forum.  And yes, some of what I learned is that our medical community is somewhat at a loss with "us"!! 

Samantha

[Jim Scott]

Samantha: a slightly belated Hi and Welcome  ~

I read your first, somewhat disheartened post and wasn't quite sure how to respond but I see that a whole team of AN veterans quickly replied with their typical compassion and inspiration.

I was relieved to see that today is better for you as you employ 'shopping therapy' to aid your recovery.     I believe that massage therapy is very beneficial, according to posts I've read here from those who have undergone this treatment.  I'm sure they'll chime in, soon, to either endorse massage therapy or denounce it.  I expect it'll be the former. 

I'm not well-educated in post-op facial therapies but I doubt any of the devices you've been using (or have been advised to use) will do any real damage, although they may not do much good, either, which can be depressing after awhile.  However, I think I'll let those with more knowledge regarding facial stimulation therapy answer your question. 

I would assume that, in time, as your facial paralysis resolves, which it likely will if the nerve is intact, you'll be able to wear corrective lenses, again.  I didn't experience poor vision in the AN-affected eye.  I did experience double vision for a few days post-op (which is common) but that disappeared.    I do have a slight 'dry eye' condition that is quite manageable because it only manifests itself when I'm tired or have been in very windy conditions.  I respond by avoiding windy conditions and going to bed when I'm tired.   

I'm so pleased to learn that you found the message boards useful and informative and decided to join us as a poster.  Although some doctors may be a bit clueless about acoustic neuroma realities, we're not and we try to help, advise and educate others as best we can.  I'm happy to learn that, in your case, we've succeeded. 

Jim

[Cheryl R]

Samantha,        The facial paralysis is very frustrating to live with and I have been thru it.      The muscles will not work until the facial nerve is healed enough to let the muscle work.     Facial muscles are of a different fiber than regular muscles so you will not lose them by waiting to see how it goes.             The facial therapsit who has written on part of that www.bellspalsy.ws       site usually does not want to see people until it has been a year past surgery.             You have a better idea then on how the nerve is recovering.           There are many here who have went even over 2 years in having recovery continue.      Don't give up.        Using heat and massage on the face is ok but any electrical stimulation is not good for it.
2 months is a short time post op so just give yourself time and take it easy and know it really will improve over time.              We know that well.               
Hang in there and be good to yourself!                         Cheryl R

[CROOKEDSMILE]

Samantha,
I'm so glad that you joined our group. I also have facial paralysis and suffer from depression. I must say that on days when I am down and out I come to this forum for encouraging words and help from my friends. You will find that this group of people really do care and sometimes that is all that we need to make it through another day...is to know that people do know and understand what we go through.....Truly understand because they are in the same boat. Please know that you are not alone and there is always someone here ready and willing to pick you up when you've been knocked down. We do care.
Angie

[wendysig]

Hi Samantha,
Welcome to oru group.  You have gotten so many wonderful responses and so much good advice, I don't really have much to add.  Please know that you are not alone and we are here to support you and lend our virtual shoulders to cry on when needed.  Patience is key to recovery and two months is not very long.  Please do be patient with your recovery and kinder to yourself.  Keep us posted and feel free to ask any questions.

Best wishes,
Wendy