Newbie 6 weeks Post-op

[Wenport]

Hello Everyone,

I have been so grateful for this website, it has helped me through some very difficult times.  I have decided it is now time to post my own story and get some personal advice from all you.

I am a very active mother of 2 (3 year old Audrey, 1 year old Claire)  and part-time ER nurse.  I had started having severe headaches and had two episodes of vertigo.  I decided I had better get it checked out.  Never in a million years did I think I would get the dreaded phone call from my family doctor saying, we need you to come in ASAP regarding your MRI results.  As a nurse I knew that it was not going to be good news. 

The month following my diagnosis was very difficult and stressful for me and my family, but with everyones support I have made it through the past 6 weeks.  I had a couple complications post-op.  My hospital stay was extended by a few days because of an abdominal hemorrhage (the ICU nurse did not put my drain to suction) and a viral infection that caused facial paralysis which has improved.  I continue to experience headaches and balance issues which is a problem with two very active children.  I have been so blessed with wonderful support from family and friends.  My Mom moved in with us 7 weeks ago ( I don't know what I would do without her) My husband has been my rock, and has helped get me through some pretty difficult days.  I have two sisters that have jumped in and took over the "mother" role on those days I could not even get out of bed.

A few questions that I have for all of you are,  Will I ever feel 100% like myself again?  Is there anything I can do to help in the morning time?  It seems like every morning I wake up I feel horrible and it takes a good couple hours to even start my day.  I am also very anxious that now I am feeling a little better people are going to stop coming around to help.  I can't imagine taking care of my kids by myself.  When will I ever feel comfortable driving again?  I am so anxious and nervous about the future and being myself again.  In a matter of months my life was completely turned upside down. 

I guess I am just looking for some words of encouragement from all of you:)
Thanks for listening,

Wendy

[sgerrard]

Hi Wendy,

Welcome aboard. 6 weeks is not that long; you should definitely continue to feel better as more time passes. Will you ever feel 100% like your former self? No, it is more like 100% of the new you. For most people, though, that works out to be pretty good. You should certainly end up not feeling horrible every morning, and feel up to taking care of your children. Maybe a short walk in the morning would help stir things up.

Best wishes as your recovery continues.

Steve

[CHD63]

Wendy .....

Welcome to this Forum!!  Thank you for sharing your very personal story with us ..... my what a time you have had ..... and with two small children, no less!

As you have read on the posts here, everyone's AN journey is unique, therefore none of us can say exactly how someone else's recovery will go.  There are a few common issues:  fatigue (a biggie!), balance, and hearing.  All of us are affected by these to greater or lesser extent, at least temporarily.  At six weeks out, with the complications you have had, you seemingly are actually doing quite well.

You may never be back 100% to the person you were pre-AN.  However, you will find (as many of us have) that the adaptations you will make have the ability to shift us to another pathway that is equally satisfying as before the AN.  Many people on the forum have found exercise of one kind or another (walking, running, physical therapy, paddleboarding, etc.) to be very beneficial to speeding up the recovery process.  Are you having difficulty sleeping?  Is that why your mornings seem so horrible?  Or is it headaches or fatigue?

Yes, you will feel comfortable driving again.  I am almost 18 months post-op and it is only in the last six months that I have felt comfortable driving again (and I have more unusual balance issues due to no vestibular function on either side).

You will feel better ..... honest!  It just takes patience to let the body and brain heal from a very severe trauma to your whole system.

My thoughts and prayers as you walk through this recovery process.

Clarice

[Kaybo]

Wendy~
Welcome - sorry that you have to be here but glad you found us.  Just like Steve said, you might not get to 100% like the old you, but the NEW you can be pretty darn good - it jut may take a while.  Some people seem to bounce right back, while others of us seem to take a little while longer.  Sounds like you had a couple of "extras" that may add to your recovery a bit.  Take it slow and listen to your body...I dont have any great tips for getting going in the mornings - I do better in the mornings and not so great at night so we are opposites!  Steve's suggestion of walking sounds good to me - it seems the more we walk after surgery, the better.  I definitely know how hard it is with little ones!  I would be more than happy to chat with you if you would like if you want to PM me your phone number.

K  

[Adrienne]

Wendy,

I remember that feeling of not being able to 'get going' in the morning for a few hours.  I too was worried about when my help would dry up.  I can't recall when it went away, but getting moving in the morning in a timely fashion was definitely gradual (some days good, some days bad, some days an hour, other days a few hours).  My surgery was May 26th of this year, and I'm feeling great now.  Not sure when it happened, it just sort of did.  LOL.  I will add that I didn't have any complications post surgery like you did.  That can add time too.

When I went to answer your 'will I ever feel 100% like me again?' question, my immediate reaction was "YES, I definitely feel like me again", but after reading the other responses I realize that it's true-you feel good but you're not 100% the same.  It's just that the things you are left with, you can still carry on in a 'normal' fashion and feel pretty darn great.  For example, had you told me I would have tinnitus after surgery, I would have DWELLED on how horrible it would be.  And yes, I would prefer not to have it-but it's not affecting my life and I've learned to live with it.  Having it is not nearly as bad as thinking about having it.

I hope you continue to improve.  Give yourself time. 

Adrienne

[cecile k]

Hi Wendy:

I am 7-1/2 years post op but still remember my first months of recovery as being the most challenging thing I ever had to face. I will give you a bit of a peek into my recovery. I recovered at my parent's home for the first six weeks after leaving the hospital. Just taking a shower in the morning felt like I did a day's work and I thought that this feeling would last forever. I was very discouraged trying to regain my balance, deal with extreme fatigue/severe headache issues that began three weeks post op and was riddled with guilt at not being about to look after my family (five boys then ages 4 through 14). My hubby and family really pulled together to help and I think I had to learn to accept all this help which was not easy. It is easier to help someone in distress than to accept help yourself but I had to learn to let this go. I would push myself to walk each day even if I didn't feel like it....I think that this helped my recovery. It took at least two months before I drove short distances.

Over time things did fall back into place, although I never regained the "old me" totally. I have accepted this and moved on, learning to pace myself and being honest with others what I can and can't do. This has also been very difficult at first - people kind of expect you to be "back to normal" . I have printed out some pages of postings from this forum and let others read this - an eye opener to many.

All the best!

Cecile

[Wenport]

Hello,

Thank you so much for all of the advice and well wishes.  I had my 6 week check and the Dr. said he was very happy with my progress which makes me happy   He even said I could go back to work in a few weeks. This makes me very anxious but I guess I just have to slowly dive back into the work scene.  Maybe it will be a good thing to get back into the real world. 

I do continue to have HA and neck pain but things are getting better and I seem to have more energy each day.

Thanks again everyone,

Wendy

[Lilan]

Wendy, cheers. One small thing I'd add is that I'm just three weeks "ahead" of you, at nine weeks from surgery, and there was a dramatic improvement in my energy level from weeks six to eight/nine.

At week six I simply couldn't imagine how I could work!! At week seven, right before I went back, I was totally full of dread! But then once I started, a.) I felt MUCH more energy than I would've thought and b.) I think being on a more vigorous daily schedule* actually helped by that point. At some point recuperating, though very necessary, becomes a little "understimulating," I think.

(*I am taking Fridays off, and many days left work at 3, so I didn't slam into too demanding a schedule -- just am slowly lengthening my days.)

[mimoore]

Welcome Wendy,

Oh I just want to start with a big ole cyber hug. I too felt those feelings and I am here to say IT DOES GET BETTER! Be kind to yourself and heal, it will really help you in the long run if you don't push yourself too hard. I am a very active person as well and laying around almost killed me but each day I would force myself to have a nap. Your children are still young enough that if they are not napping they certainly could have quiet/snuggle time in bed with you.

I returned to work after 12 weeks (part time) teaching kindergarten and spent my days with twenty, four and five year olds and I was happy but pooped.

Take care
Michelle 

[Jim Scott]

Hi, Wendy - and welcome.  Thanks for deciding to post.  I'm always pleased to learn that the site & forums have helped another AN patient.  That's our purpose.

Previous posters have adequately answered your very pertinent questions but I'll add my concurring opinion that you will feel normal again but you probably won't ever be exactly the same as you were, pre-surgery.  However, that takes time - definitely more than six weeks.  Almost all AN surgery patients do resume driving and living their normal lives.  You may have to tolerate some physical deficits for awhile and push through them, but eventually, you should be pretty much back to normal.  No one can honestly offer specific time-frames for that stage of recovery but it generally is measured in months, not weeks.  The caveat that every AN patient is unique and has a different recovery experience is valid and should always be noted when discussing recovery.  My suggestion is to set your sights on getting back to normal as soon as possible (within reason) and not letting fears and worries about 'the future' be an impediment to your well-deserved recovery.  Celebrate 'small victories' whenever possible.  Full recovery can take time so instead of being disappointed because you can't, for instance, drive on the highway, celebrate being able to back out of your driveway or to be able to drive around the block.  While I don't believe we can will ourselves back to health, I do believe that having determination and pushing through fears and set-backs can certainly speed up the healing process.  You may have to take an occasional (small) risk to accomplish something you want to do.  Without being reckless or endangering yourself or others, I hope you'll take those risks, when they arise (as they will).  I don't have any specific advice for overcoming the morning lethargy or whatever is giving you trouble but I'm sure others will have advice to offer.  Use what you can.  We're not doctors but we - collectively - we have a lot of practical experience dealing with acoustic neuromas.  We want to help and see you move forward with your recovery.  I trust these messages to you will accomplish that, in some small measure.  Hang in there. 

Jim

[msmaggie]

You will improve, but probably not as quickly as you would like.  Pace yourself and celebrate the little victories.  I personally find caffeine to be a bit of a miracle drug for my headaches.  Rest and recuperate, increasing your physical activity as you are able.  You will make progress!  Good luck and stay in touch.

Prisscilla

[Lyssa]

i am 6 months post-op (translab) and thankfully haven't suffered from any sever headaches whatsoever. In the hospital I was taking codeine for the first few days, then extra strength tylenol. I was resistant to asking for medication as I have this thing about "getting better on my own", silly... I know.

The nurse told me it was important that I take a pain killer (tylenol) at the first sign of a headache, to ensure it didn't end up worse. So for the first two weeks I was at home after sugery I was basically in the routine of waking up, taking a tylenol and eating breakfast (I would feel a slight headache when I woke up). I have probably taken painkillers maybe 4 times (tops) since the month after my operation. Anyways, my point is that if you feel a headache coming on, even if just a little, take the painkiller at the first sign, because it will help to avoid a stronger headache later on.

[TxNurseNoelle]

Hi I am a nurse too and worry about returning to work, I am alomost 3 weeks postop and am ssd on rt had translab also had virus which resulted in a bells palsy on the rt although it is resolving slowly. I worry about being a charge nurse in a busy pedi unit so i certainly understand how you feel, and I have an 8 year old dtr who will be starting in all kinds of after school activities in another week or two. Let me know how you do when you return to work, I find i get what I call "bobble head" because if i turn or move to fast my head feels like it shakes, sometimes i wonder if i can ever return to nursing...I am glad you are doing well please keep me informed.

[TxNurseNoelle]

Oh i wanted to ask you a question..did your doctor say anything about returning to work and your possibly getting infected with a virus? i would expect the swine flu will pick up its pace once kids go back to school and you are exposed to so much more at ER, you will still be immunocompromised even at 6-8 weeks post op that is still early into the healing process, just wondering about your thoughts on that

[Syl]

Wendy:

It wasn't until about six weeks post-op that I dared to drive again. Recovering from brain surgery is a long process. At 14 months post-op, I still have those days when I can't get out of bed, either because of headaches or extreme exhaustion.

As time goes on, progress seems to be slower and less noticeable, but it does continue. I went to physical therapy to help my balance. Let me tell you it helped a great deal. I don't know that I will ever be 100% of the old me. But, at around 10 months post-op, I felt I finally had energy and my head felt clear--less wonky-headed. I haven't felt that good in years. I didn't think that I would ever feel this good again. Be patient, it will get better.

Syl