Author Topic: Longer term general issues of feeling "normal"  (Read 6219 times)

FrenchBD

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Longer term general issues of feeling "normal"
« on: December 31, 2012, 07:11:05 am »
I just had my first year anniversary from Middle Fossa Surgery. I went back to work after 3 months as a high level executive. Now it has been a year since the surgery, I still have a few headaches and balance issues but really they are quite manageable. Yet the biggest thing bothering me .... I just don't feel normal. I am depressed and often fatigued and have lost the drive to do much of what I used to be so very passionate about at work. I don't feel able like I used to be to to manage my big team of people. Are there others that have experienced similar changes? Did you ever get back to feeling normal? How long did it take? If these were permanent personality/life changes what did you do resolve the gap between now and who you were before the surgery? Did you change things in your life to accommodate?  I don't mean do sound so ungrateful as I truly am so very fortunate. At the same time, no one discusses much the very long term impacts of going through this kind of surgery. After a year, everyone including myself, figured I would be back to normal. I am not -- and I am not sure what to do about it. For those who have had surgery please tell me if and how long it took for you to feel normal again.

Kerry

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Re: Longer term general issues of feeling "normal"
« Reply #1 on: December 31, 2012, 03:43:54 pm »
Hi.  It has been a year for me as we'll since my surgery.  I am certainly feeling much improved with headaches subsiding, balance issues minimal and my facial paralysis improving but I am not like my old self.  I still have serious eye troubles from the lack of blinking and am working hard to get a scleral lens to work but that has been a work in progress to say the least.  I am still getting used to SSD.

I have certainly withdrawn from some family and friends.  It is just easier to be by myself then try to explain this long journey that I am on.  Certainly everyone thought I would be perfect by now.  I do get tired easy and in fact just taking a shower gives me head pain and a wooesy feeling.  I don't even understand why I still feel bad so how are others suppose to get it.

I too have lost my passion for work.  I went back as well after 3 months but it was too early since all I do is work and then eat and go to bed.  That really is no life for me or for my terrific husband and kids.

I am sorry that I have nothing to say to help you except you are not alone.  Sometimes when I read the posts from people who have made a terrific recovery I think why not me.  I am thankful that each month is better than the last but I wonder when will this end.  Can I feel like this forever?
Kerry

FrenchBD

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Re: Longer term general issues of feeling "normal"
« Reply #2 on: December 31, 2012, 04:12:58 pm »
Kerry,

Thank you so much for your reply. It actually helps to know that I am not alone. I also see the great happy recovery posts and wonder if I am slow or its my fault. Like you, I have withdrawn from family and friends too. I get the sense they just want me to get over it and don't understand that I still don't feel like myself. I am so tried of explaining that while things are so very much better I am still not myself. Again, it helps to know I am not alone so thank you for replying

Karen

Jim Scott

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Re: Longer term general issues of feeling "normal"
« Reply #3 on: December 31, 2012, 04:42:10 pm »
FrenchBD ~

Thanks for having the trust in our AN discussion forums to post your very sincere misgivings about not regaining a sense of normalcy after a year post-op, considering your otherwise excellent recovery and the resumption of significant job responsibilities. 

As one of those AN patients that Kerry referenced (post#2) as enjoying a terrific recovery, I can still relate to your angst.  Although I did recover quickly, it was well over a year before I felt normal.  'Normal' being a relative term that we won't try to define, here.

 I was recently retired from my career as a radio disc jockey/voice-over announcer when I received my AN diagnosis so job responsibilities were not an issue for me.  However, when listening to the radio or hearing a TV voice-over for a commercial (I was strictly local, not national) in the months following my AN surgery and radiation I would realize that I really couldn't do a four hour radio show every day anymore because it is quite intense and mentally demanding.  Even voice-over work demands one be very focused and as always, time is money and commercial producers don't like too many re-takes.  This was a bit disheartening because I wanted to believe that I was basically the same guy I was before the AN diagnosis, surgery and radiation but, alas, I realized that, although my recovery was fairly rapid and basically without complications, the very invasive surgery and follow-up radiation had taken it's toll on my body and that had somewhat eroded my self confidence. 

I was able to deal with this understanding by (a) being eternally thankful for my good surgical outcome and, (b) I did not need to go back to work and prove that I was no longer near my former level of ability.  As time went on, I found that my recovery, much to my surprise, continued.  I felt stronger two years post-op than I did at one year.  I also learned how to cope with somewhat diminished balance and being SSD (which began before the surgery).  Since then (2008) I've been given a leadership role in my church and overall, remained quite active.  I had resumed driving a fortnight after my surgery (with my doctor's blessing) and I've probably driven about 10,000 miles per year since.

A lot of my recovery experience hinged on my state of mind.  From the day after my surgery, with the head bandage still in place, I was determined to 'get back to normal'.  Of course, one has to make some compromises and accept a few minor limitations but I refused to accept very many and when confronted with an obstacle (balance) I met it head-on and eventually surmounted it to the best of my ability.  My spouse was a huge help as she has overcome many spinal issues (4 surgeries) and other painful maladies but remains active and engaged in life, refusing to allow pain or other obstacles to keep her from living a full life (she will not use narcotic pain medications).  Although she was very solicitous of my health during the initial stage of my recovery, when she saw that I wanted to be as independent as possible, she backed off and let me do whatever I thought I could do, without any fuss.  It worked.  In addition, being very involved with the AN forums also allowed me to realize that (a) I had a great surgical outcome and, (b) others dealt with much harder recoveries and pushed through with a determination that impressed me to no end, and still does. 

In the final analysis, time is our friend as even with a good recovery and few (if any) post-op issues, time does help our healing.  It also allows us to put things in perspective and adjust, if we chose to do so, to whatever limitations we have to deal with, realizing that we're still the same person as we were before the surgery but that our definition of 'normal' may have changed a bit (for us).  Around here, we often refer to it as 'the new normal', an apt description.  I trust that your recovery will continue and your ability to adapt to whatever limitations are necessary will become easier.  Life is, as they say, short and I don't wish to waste it walking around with my head down, wishing things were different or that I was exactly the same as I was before my AN manifested itself and I had to undergo invasive surgery.  I got through the surgery relatively unscathed, as it were, my recovery was excellent and I'm healthy and relatively vigorous for my age (Gulp! 70 in February).  I have lots to be thankful for - and I am.  I hope that you'll be able to find both solace and direction from the responses to your post, including this one.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tod

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Re: Longer term general issues of feeling "normal"
« Reply #4 on: January 01, 2013, 10:11:01 am »
It is very difficult to characterize how any individual will experience recovery from AN surgery. I think it is also problematic to benchmark one's recovery based on that of others, particularly in light of the small, self-selected nature of this particular community. Some people breeze through this whole experience, or at least it seems like it, others seem to find that it reshapes their lives completely. To top it off, none of this seems correlated with tumor size or length of surgery or many other seemingly obvious factors.

Despite a 32-hour surgery, I seem to have had an outstanding recovery. But, it was long. When I look back at my logs and think hard about the last four years (my first MRI was three years ago yesterday), I realize just how far I have come. I am a senior staff in state government and went back work at three months post-surgery. It was very difficult. Three, four months later it was still difficult. A year later there was a big difference. Two years later a still bigger difference....and then that was set back by six weeks of FSR as I am one of those relatively rare people who had a fairly awful time with radiation. Now, about 10 months from the end of FSR treatments, I am still improving and have done some awfully good work this year....noteworthy enough to be in the national press. It was not easy though...in fact, it was almost disastrous at one point.

Two days ago I went to the store. I grabbed a shopping cart with a bad wheel. It was a crowded day with the holidays and all, so I stuck with the cart I had. I had to fight so hard to keep that cart straight that not only did it affect my balance, it made me nauseous. The nausea stopped every time I stopped moving, and completely stopped once I got to the car so I have no doubt the nausea was caused by the cart. My point here is that even what seems to be great recovery still leaves pockets of problems.

As to not feeling the same, I don't feel the same. For me this is a good thing. I was kind of a miserable, angry person prior to surgery and now so much of that is gone - as is much of the ill-health I was feeling.

Unfortunately, one of the things I have been left  with is a steadily worsening stammer. This is rough for someone that does a lot of public speaking and who is used to speaking without difficulties (and a great deal of glibness).

FrenchBD, you wrote also about the difficulties managing staff. I can relate to that quite well.  I will stop there though.

Hang in there and try to be patient. Your body is not interested in the calendar. It will take what time it needs to recover. Treat yourself well with exercise and rest and don't give up.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

leapyrtwins

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Re: Longer term general issues of feeling "normal"
« Reply #5 on: January 01, 2013, 10:58:23 am »
French -

you didn't mention if your surgery left you SSD (single-sided deaf).  I found post op that I was very depressed because my surgery left me SSD.  Once I found something - a BAHA in my case - to help with my hearing I wasn't depressed anymore.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

DHJ

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Re: Longer term general issues of feeling "normal"
« Reply #6 on: January 01, 2013, 02:48:41 pm »
   Hi  I am 13 months post op and still adapting to my new normal. Last night a friend a said that I was looking good and asked if i was back to 100%.I almost started listing my problems but instead replied that I was doing pretty good.My tumor is gone,I am healthy, and my new normal is pretty good.   Peace Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

alabamajane

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Re: Longer term general issues of feeling "normal"
« Reply #7 on: January 01, 2013, 03:06:48 pm »
Hi Karen and Kerry,
No, you are not alone,,I 'm quite sure there are many of us out here that share your feelings and emotions,, I am one.
This can be a hard and difficult journey and  very lonely at times even with loving and understanding family and friends around constantly as like you stated they really can't truly empathize with what we are feeling and experiencing ..
I am about 14 mos out from translab, and although I am much better in some respects,, I agree wholeheartedly that it is much easier to be alone than try to explain my "new" self to my friends,, I am retired and have found myself on more than one occasion avoiding stopping in to see old colleagues because I do not want to explain this journey,, most know I have had the surgery and have asked how I m doing, but "fine" is all I offer,, much easier answer,,,
Sorry I don't have much advice and some will say not much positive to say,, but it is what it is,, this is my life,, and yes while I am grateful for better health,, I also am a long way from " my best me",, I hope as I get further out, I will get stronger and not tire so quickly and that things will continue to improve as they have over this first year,,, but I believe others should know that not everyone bounces back right away,,
Best of luck to you both and here's to a happier, healthier New Year!
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

millie

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Re: Longer term general issues of feeling "normal"
« Reply #8 on: January 01, 2013, 04:27:23 pm »
Hi everyone.
Thank goodness I read this tonight.  It is New Year's Day, and I am feeling pretty down.
My trans-lab was October 17th, and while I am better, I am certainly not what I was pre-surgery-even with the fullheadedness.
Our Christmas was much quieter this year, and I attribute that to my husband's heart surgery in May and then mine in October.  We had a sudden opportunity to babysit last night, and my three year old grandson's words were, "Are you better now, Grammie?"  It was so good to see the kids.  In four months, they have changed and grown and I really want to participate more in the rest of their lives.  I did before the an.
I have three children, 43,41,and 40.  The forty year old has been laid off, is recently married,  and having a child  in June. My other son and daughter seem secure for now, and try to maintain a healthy family and home, but nothing seems secure these days.   My husband and I worked all our lives, triedto do the right thing.  We are fortunate to have retirements in our benefits.  But our children won't have them and I sometimes think I'd go back to work but I don't know if I could now.
I just wanted to say I deeply admire your determination to get back to work and try as hard as you all do.  The new normal is not easy. Even though our faces look better and we might seem as before.  It is hard with the SSD, ear ringing, head fullness, eye tearing-and yes, I too find myself isolating.  It is such an effort to be sociable-but run a grandkid past me and I am motivated to try harder. Also the words of this forum are priceless. Thank you for helping me go on.
Mil

Jill Marie

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Re: Longer term general issues of feeling "normal"
« Reply #9 on: January 01, 2013, 04:33:36 pm »
Kerry,  was wondering what kind of issues you are having with the scleral lens?  I just got a special contact lens not sure what brand and it's working well for me.  Have severe eye issues as well, posted about my lens in the eye issues part of this board, post is "Got early Christmas present thanks to this board."

Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

FrenchBD

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Re: Longer term general issues of feeling "normal"
« Reply #10 on: January 03, 2013, 12:30:07 pm »
Jim, Tod, Millie, everyone thanks for your kind notes. Any advise on how to tell what is the "new normal" and what is simply a long recovery? Jim and Tod it sounds like you were able to get back your mojo but years later. I feel like I better step down into a new job with less stress if this is the new normal. If its just a wait game than I should stick it out. I know this is a difficult question but any advise on how to tell the difference between new normal and getting over having your head opened?

Jim Scott

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Re: Longer term general issues of feeling "normal"
« Reply #11 on: January 03, 2013, 01:52:13 pm »
Jim, Tod, Millie, everyone thanks for your kind notes. Any advise on how to tell what is the "new normal" and what is simply a long recovery? Jim and Tod it sounds like you were able to get back your mojo but years later. I feel like I better step down into a new job with less stress if this is the new normal. If its just a wait game than I should stick it out. I know this is a difficult question but any advise on how to tell the difference between new normal and getting over having your head opened?

BD ~

For many AN post-op patients, their post-op physical challenges affect their emotional well being, which is understandable.  When few physical obstacles are present a year past AN surgery, continued negative feelings and a lack of confidence would seem to be psychological.  Addressing that aspect of recovery and the feasibility of continuing to engage in stressful job responsibilities requires an expert, which, for all my willingness to help you, I simply am not.  I suggest you consider counseling to address your perplexing post-op issues - and I wish you a better future.  Please stay in contact with the ANA forums and keep us updated on your situation, as your time permits.  Thanks.

Jim     
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tod

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Re: Longer term general issues of feeling "normal"
« Reply #12 on: January 03, 2013, 04:55:26 pm »
Quote
I know this is a difficult question but any advise on how to tell the difference between new normal and getting over having your head opened?

That is a really good question. I don't think I ever thought in those terms. I think the difference came in stages for me. First, It was reconciling being SSD. That was followed by three procedures to give me a voice, none of which lasted very long...but a year later I had notable improvement and we stopped further treatment. So, that was a marker of sorts. Getting my BAHA a few months later was another marker.

I also learned to accept that other problems would be with me awhile, perhaps forever, swallowing difficulties and an annoying cough. It is hell coughing for three years, let me tell you.

So, perhaps it was just gradually adjusting.

On the other hand, there is a rule of thumb that says you need to give yourself one month of recovery for every hour under a general anesthesia. If true, craniotomy and three vocal cord injections add up to about 37 hours or 37 months...so I still have another couple of months of recovery.

Truth to tell, I never really expected to heal "completely" or more, accurately, to stop healing.

Maybe this is my new normal - an ongoing recovery. Could this be true for you?

-Tod



Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

leapyrtwins

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Re: Longer term general issues of feeling "normal"
« Reply #13 on: January 05, 2013, 07:11:35 pm »
French -

since I didn't see a response to my question I'll ask again.  Did your surgery leave you SSD? 

Sometimes people underestimate what effect being half-deaf has on them.  I know from experience.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

millie

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Re: Longer term general issues of feeling "normal"
« Reply #14 on: January 06, 2013, 07:48:17 pm »
Jan-Yes.  I underestimated what it would mean to lose the 40 percent hearing I had left in my left ear before trans-lab.  When I am in peopled places, or little diners, or several folks talk at once, it is very very hard.    I have been told that a hearing device will help and am hopeful it will. 
Have to get out of the bubble and work at staying positive.