Author Topic: A day of "second thoughts" :(  (Read 3524 times)

Jeepers

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A day of "second thoughts" :(
« on: June 20, 2009, 08:08:09 pm »
 :(


In addition to my balance being a bit out of whack, it seems like it's such a struggle sometimes to get things done. This morning I had to get out there and pick up branches from last night's storm and mow the lawn. I usually fly right through - and really enjoy - these chores. Gosh, what a pain it was ... my balance was not horrible, but just bad enough to be noticeable - and exhaust me. 

And I started wondering ... is this the way it's going to be? After surgery? So, I come back here and start reading through a couple of threads and, unfortunately, come across several talking about how they are 6 mos, 1 yr, 2 yrs!! postop and just now starting to feel better. I also see folks who's signature says it all ... "life is good".

So, let me throw this out there ... I realize that no one can predict how this will pan out, but my current expectations are that I go in for surgery, come out with SSD and balance that will need some adjusting. But I fully expect to be back walking my frisky shelter dogs and working in the garden without this struggle and exhaustion. While I fully appreciate the value of "positive" thinking, I'm also very realistic and would also like to be prepared if this is not going to be the case.

This also has me wondering if rehab is the same when radiation is done, or is that one of the better outcomes from radiosurg?

Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

Kaybo

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Re: A day of "second thoughts" :(
« Reply #1 on: June 20, 2009, 08:47:24 pm »
Jeepers~ 
Read my blog - I hate to say but I had what some would say a REALLY not so good outcome but I have 3 very active girls now AND I am very active also!!  Yes, I  have some limitations but i don't ever let that stop me...or really even slow me down much!!  Give yourself a wide berth to heal and know you might have to make some accommodations but it will all be OK in the end!!  Please feel free to PM me or I'd be happy to chat with you on the phone!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Dog Lover

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Re: A day of "second thoughts" :(
« Reply #2 on: June 20, 2009, 09:37:06 pm »
I don't see what size your AN is, but please don't think that having surgery is an automatice diagnosis for SSD. It's not (depending on your individual circumstances, of course.) My surgeon said it would take about a year to feel back to normal, mainly from the fatigue. I'd say he was pretty right on with that. I did have balance issues after surgery because my AN was small enough that it had not affected my balance at all before surgery. But I was walking both of my dogs by 6 weeks post op. I did a lot of walking, went to a VPT (only one session), did my VPT exercises and continually pushed myself (sometimes too much and would pay for it).

I do have to admit that I had very good results from my surgery. At 10 months post op I feel really good. I can occasionally tell that my balance is off a bit when I'm tired, but no one else can. Wonky head is gone, and I'm back to pushing myself physically as much as I was pre-surgery. I'm doing everything now that I was before my AN....well, I won't ever walk on a roof again, but I wouldn't do that again anyway - terribly afraid of heights. LOL

So, please don't assume anything. Ask lots of questions, find out about people's experiences to try to avoid any surprises and just make your own path. It can be scary at times, but we've all been through it and are here to support you.

Cathy
« Last Edit: June 20, 2009, 09:38:50 pm by Dog Lover »
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Kathy M

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Re: A day of "second thoughts" :(
« Reply #3 on: June 21, 2009, 09:49:37 am »
Hey Jeepers!

(I love your name, BTW!) 

Everyone's journey is different, but I can tell you after being off 4 months, I went back to work feeling so much better than before surgery!  I can walk just as fast (maybe not always straight, but that doesn't matter to me!!) and I'm doing all the things I want to do.  Some of them, I do bit differently, but I have no limitations at all!!  Folks told me I'd find my new normal after surgery and I just didn't understand it.   I thought that meant I'd always feel sad about how I am now as compared to my life before.  That's not how I feel at all -  I love my life, I didn't choose to have an AN but I did, and I'm just dandy!!!  Working hard, playing hard, and feeling great.

Good luck to you!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Jim Scott

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Re: A day of "second thoughts" :(
« Reply #4 on: June 21, 2009, 01:35:22 pm »
Jeepers ~

As the posts prior to this one have demonstrated, life after AN surgery can be a bit of a struggle, but - barring any serious complications - you should be able to resume your normal life after a few months.  You have to remember that you're going to be coming out of a very complicated surgery that lasts anywhere from 5 to 15 hours (mine was just under 9 hours) and involves opening up your skull and, in my, case (retrosigmoid approach), moving the cerebellum, which is extremely delicate work.  All this takes a toll on your body.  I slept for most of the 24 hours after I was released into  ICU, then I slowly gained enough strength to sit up in a chair for a few hours at a time.  Within days, I felt strong enough to walk the hospital hallways (with my wife by my side - but not assisting me).  That was approximately 4½ days after my surgery was completed.  I was released from the hospital 5 days after I had been admitted.  I felt fine and stopped at a nearby diner (with my wife and son) to have a stack of delicious pancakes that I had been thinking about for days.  My little 'reward'.  :)

I was very fortunate and didn't suffer any complications from my surgery.  The FSR treatments I underwent 3 months later were entirely uneventful.  I drove to and from all 26 of them, a 60-mile round trip (my wife accompanied me).  During my first week home from the hospital I mostly sat in a recliner and read or watched some inane TV show to pass the time.  When I wasn't doing that, I slept.  I also had a VNA PT lady that came to the house and put me through various balance exercises.  I hated those but was dutiful in my daily 'workout', under my wife's benign but careful supervision.  After 3 visits, the PT lady declared me no longer in need of her services.  I stopped the dreaded exercises within a few days but did a lot of walking and sought out uneven surfaces.  I probably walked at least 2 miles per day, which for me, was a lot.  It all helped.  Today, my balance is very serviceable.  I do feel I've lost a bit of stamina but I attribute that as much to aging (I'm 66) as the consequences of my surgery and radiation.  I no longer attempt any heavy lifting.  I'm fit (my BMI is 21) - but hardly athletic.  I 'm retired but I get out almost every day  I'm a Deacon in my church and I do all the housework because my wife is physically unable to do it, although she cooks (very well, too) and does the grocery shopping.  I have to admit that I was already SSD when I had my surgery (I waited that long) and so, there was no adjustment to make with my hearing.  Frankly, if this is my 'new normal', I'm good with it.  :)

I wouldn't stress out about the 'what-if's' of your surgery.  Of course it's a risk - but so are most important things in life.  I usually advise those contemplating AN surgery to hope, pray and expect the best outcome (this is what I did) but be prepared for the possibility of some complications afterward.  They are usually mild, but as you realized, there are simply no guarantees of outcome with this surgery.  Radiation is certainly less invasive but carries it's own risks and aftermaths, so I wouldn't assume radiation is a panacea but simply another approach with it's own pluses and minuses.  Ultimately, it's your decision and you have to be satisfied with it.  Positive thinking is recommended but don't try to 'balance' that with negative thinking or you'll run the risk of becoming distraught, which is not a place you want to go.   Know that many people, including me, are rooting for you and stand ready to help and advise whenever you ask.  :)

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.

Jeepers

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Re: A day of "second thoughts" :(
« Reply #5 on: June 21, 2009, 01:44:22 pm »
Thanks, Kaybo, Kathy, Cathy & Jim.

The "pity party" has moved on ...  :D  I was just having an aggravating day yesterday, which just allowed the doubt beast to rear its ugly head.

I appreciate you all sharing your experiences ...  :)
Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

leapyrtwins

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Re: A day of "second thoughts" :(
« Reply #6 on: June 21, 2009, 06:55:37 pm »
Jeep -

do not, I repeat, do not have second thoughts.

You have made your decision and it's a great one.  You are in very, very good hands - I can say this because I've been in the very same hands myself.

You will do fine.  I am confident of it.

Before you know it, you'll be back among us as a postie.

Best wishes tomorrow.  I'll be thinking of you.

Prayers,

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

Jeepers

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Re: A day of "second thoughts" :(
« Reply #7 on: June 21, 2009, 07:48:19 pm »
Thanks, Jan!   I'm not one to turn down good thoughts ... but nothing's happening tomorrow - I'm still 2-1/2 weeks out.

... feel free, however, to think about me at my chiro appt.   ;D
Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

leapyrtwins

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Re: A day of "second thoughts" :(
« Reply #8 on: June 21, 2009, 09:19:31 pm »
Seriously ???

Still 2 1/2 weeks to go?  :-[

And here I was all geared up to be your head cheerleader!  ;D

Oh well, I'll save my enthusiasm for another couple of weeks.

Good luck with the chiropractor!

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