Author Topic: scared  (Read 5258 times)

MMusella

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scared
« on: January 03, 2015, 08:06:37 am »
So turning 40 wasn't what I thought it to be.. after ringing in my ear and headaches doctor was thinking sinuses. .than being referred to a ENT (which took me a couple months to get in to) seeing her on a Monday, than being sent for a stat MRI on that Saturday and having my results back Monday and consulting with a specialist that Tuesday ..and a second opinion on Thursday. .it all has been a world wind. .I am thankful it is not cancer or MS (which she thought it might be) I just want this darn thing out and on my road to recovery. .doctors and nueroligists are telling me 4 weeks and I will be back to work..the surgery is 8-12 hours, than 1 day sedated in ICU and the 3rd I will be up going to the rehab for my balance..than on my road to recovery. .I have been mentally preparing myself for this ..but I will admit I am scared..Any words of wisdom?
40 years old, was diagnosed with a 3.5cm.(right side)AN in Nov, 2014 and having surgery on January 13th 2015, live in upstate NY..had a 13 hour surgery. .100%tumor removal. I did 8 weeks of vestibular rehabilitation and went back to my life and career,  with no side effects :)... life is great!!!

keithmac

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Re: scared
« Reply #1 on: January 04, 2015, 10:13:14 am »
I'm just a layperson and have no more words-of-wisdom than medical skills but from what I've read on these and other forum boards I'd be surprised if you're ready to go back to work in 4 weeks after an 8-12 hour operation.

I hope I'm wrong and that you will be as fit and well as your doctors are suggesting but I just wonder.

ANGuy

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Re: scared
« Reply #2 on: January 04, 2015, 12:18:05 pm »
With your AN, your path is pretty clear.  Surgery really is the only way to go.  That simplifies things for you.  I would, however, make sure that the people doing that surgery are the best there is.  I think many of these surgical teams are tied for first place and there isn't necessarily one person who is "THE GUY" to have do it, but I think there are also many surgeons who rarely if ever do these operations and are more than glad to get you wheeled into the OR so they can go to work on you.  My local guy was like that.  I met him once, and he was all set to just dive in.

I decided to look around a bit.  Duke Univ is only 1.5 hours away for me and they have an entire division devoted to brain surgery.  It's all they do.  Within that division are a handful of people that only do skull based tumors.  They do them all the time and they are very good at it.  So, my solution was to go with a team from Duke.  For now, and hopefully many years, I'll be watching and waiting as mine is small.  But, if and when the time comes, I'll be getting operated on by a team that does these all the time.

The point of my blathering is, I would take the time to see a few different Drs. to make sure you are getting the best people to do your surgery.  This surgery is a big deal.  It's not like some arthroscopic job on a tendon in your elbow.  The results are usually good, the recovery is generally difficult, and the possible bad outcomes are truly bad.  I don't think your 4 week goal of back to work is unreasonable, it's just that it could be 4 months.  These surgeries are not a slam-dunk like your first post makes it out to be.  It could be a walk in the park, but it's not a sure bet.

As close as you are to NYC, I would check out some of the world's finest medicine that is there for a second and third opinion.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

sandyinwisconsin

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Re: scared
« Reply #3 on: January 04, 2015, 01:24:27 pm »
Hi - I had radiation and not surgery, BUT - I know there area plenty of surgery
successes.  Believe me.  I researched and researched prior to my decision, and spoke
to anyone who would talk to me. 

I talked to a lady who had retrosigmoid, and she was back to normal activities within a week.
I live in a small Wisconsin town and found out someone I know from my town had the same tumor and had translab surgery.
He came home a few days later with no problems at all.  There area a lot of success stories on this website. 

There area a few people who struggled, but there are a few who struggled with radiation as well. 
I think it's the toss of a coin and also attitude.  I did not have a good feeling and attitude toward surgery.
Maybe in the end, I'll regret it, but time will tell.  I look up to people who go through and recover from surgery without blinking an eye.
They are courageous and encouraging.  Please search for the good stories under the surgery section on this website and even
talk to people. They are out there.

God will be with you the entire time.

Sandy

1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

raji83

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Re: scared
« Reply #4 on: January 04, 2015, 01:30:23 pm »
I could go back to work after 4 weeks and driving too . Iama doing pretty good.

seh0308

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Re: scared
« Reply #5 on: January 05, 2015, 10:21:23 am »
Hi Mmusella!  I am/was in the same boat as you.  I actually scheduled my surgery for Jan 8th, so am flying to the House Clinic tomorrow morning (I am from PA).  It is all a bit terrifying but there are some really amazing people on this forum who can give support through it all.  I don't have a good idea of recovery just yet, but if you ask me in a week I will be much better equipped to tell you my experience.  Please feel free to PM me with any questions- just forgive me if it takes a few days to get back to you!

I really found the most reassurance in my team of doctors and surgeons who I picked and with some very amazing people that I have spoken with who have been through the same surgery.  I have actually only had phone consults with the surgeons, but they made everything seem like it was going to be OK without diminishing my diagnosis- which I cannot say the same for all of the doctors I met with.  Don't worry- we are going to get through this!

I feel like it is good just to get this out of the way and move on with life...I was also in the same situation I need to have surgery so it isn't something that I can contemplate a ton of options which in a way was nice. 

I know this wasn't probably the exact helpfulness you were looking for, but I can and would be more than happy to be a resource as someone going through this in the same month a little before you. 

2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

Kathleen_Mc

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Re: scared
« Reply #6 on: January 06, 2015, 03:15:11 am »
hummmm, return to work 4 weeks post-op, I don't know about that, everyone is different but I guess it depends on what deficits you have post op to learn to cope with and the type of work you do.
I had a large AN, 15 hours of surgery, lost facial nerve/balance/hearing, was in hospital a week but off work for 3 1/2 months (and going back wasn't necessarily the right thing to do and was soon off for my first repair surgery), I don't think I returned to driving until like 2 months post op. And I would think I would find recovery even more difficult now in my 40's than I did back in my 20's
I do hope you have an easy recovery, let us know, I just would hate you to be set up for this quick recovery and then if it didn't happen be worried something is wrong if you didn't bounce back so quick!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

ewhitese

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Re: scared
« Reply #7 on: January 06, 2015, 09:02:42 am »
I had gamma knife three treatment dates over two weeks, drove myself home after each two hour treatment and went to work the day after the final treatment.  I thought I was the recipient of the miracle cure.  It wasn't until month four through one year post op. that I had significant side effects.  They showed up gradually and not all at the same time.  I am presently seventeen months post op. just completed a weeks vacation including air travel and no issues I couldn't live with.  Single sided deafness more of an annoyance than a problem at this point.  No vertigo, no balance issues, (had a major vertigo attack in august during a flying trip, was anticipating the same this time) but no problems except trouble understanding hotel staff etc but I just explain I am partially deaf and they helped me out. Hope this is a sign of things to come for me, there are no guarantees for us, hope your outcome is similar. During my symptomatic phase I was miserable and uncomfortable not sure of my future, time and did I say time??? it takes time to heal from surgery especially brain surgery.  Don't force things, you can't will yourself whole but it will happen and pretty soon you will be walking out the door.  So just put one foot in front of the other make your decisions with lots of information to back you up and concentrate on the here and now.  Your body will adjust itself and life will adjust itself and it will be good again.  Come here often we are familiar with your questions and can point you to the information that helped us.  We have been where you are we are sending prayers and good thoughts your way.

Ed


Hokiegal

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Re: scared
« Reply #8 on: January 06, 2015, 07:37:57 pm »
Agree with ANGuy.  Mine also was 3cm, with brain stem compression and complications that could not be seen from the MRI (stickiness, tentacles).  They don't always know exactly what they're dealing with until they get in there.  It was a good thing I was in experienced hands.  This can be a life-changing event, even in the best of outcomes.  Please do make sure your surgical team is very experienced in AN surgery.  I was very fortunate that my local guy told me up front to go out of town to a specialist.  In his words, "There are surgeons in town who will gladly take your case.  Do not let them.  None of us are specialists, including me, and I'm man enough to tell you."  I returned to work after four months, after lots of physical therapy.  Best wishes to you.
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

keithmac

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Re: scared
« Reply #9 on: January 06, 2015, 10:34:39 pm »
At first I thought I must have misjudged the tone of the many postings about surgery I've read both here and on BANA, UK. 

Some members' accounts give the impression that such serious surgery has little to be concerned about but that was never the general impression I gained. 

Of course I hope the outcome for the original poster is the most favorable but caution surely has to be the watchword - hope for the best but be prepared for something less.  Good luck and please let us know how things go.