Author Topic: Surgery scheduled for 11/13.  (Read 20311 times)

kmr1969

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Surgery scheduled for 11/13.
« on: October 11, 2012, 07:25:30 am »
Surgery set for 11/13 with Drs. Brackmann and Schwartz at the House Clinic.

I think I knew this would be the decision from early on in the research process, but had (and have) so much anxiety over surgery, I just didn’t want to accept it.  Final straw was talking with a radiation oncologist whose recommendation was microsurgery over his own expertise, Gamma Knife.

Looking for any advice, comments, and encouragement (especially from House Clinic alumni) on what to take and how to make it through the process as smoothly as possible.  Traveling from the East Coast to the West Coast and having to leave two middle schoolers behind is making this very difficult.  I can’t seem to get over a feeling of guilt for having to put my family through this experience.

Thanks for the feedback!

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

It is what it is

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Re: Surgery scheduled for 11/13.
« Reply #1 on: October 11, 2012, 07:35:52 am »
Hi Ken, I'm heading into work so this will be short.  Please feel free to ask any questions you may have.  There are many of us who were lucky enough to have our surgeries with HEI surgeons.  You are in good hands!  I took pictures of my family I taped to the wall and my favorite robe, and pillow and colorful blanket for the bed while in the hospital and as an outpatient at Seton.  Seton Hall was a very convenient place to stay for the week after surgery.  My thoughts are with you and your family. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Sheila1977

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Re: Surgery scheduled for 11/13.
« Reply #2 on: October 11, 2012, 11:12:20 am »
Hi Ken,
You are no doubt a terrific dad to worry about the impact on your family.  I am four weeks post translab and doing very well (go to work tomorrow).  I did not tell my 5th grader and high schooler until I was quite at peace with the decision and the confidence my surgeons inspired (bout a week before surgery).  Kids will handle things depending on how things are presented to them.  In the same way that our children's lives impact us, sometimes what happens to us plays a major role in their lives.  I used the opportunity to reinforce their responsibility in the family and also to draw strength in our faith.  After hearing and reading all advice and doing all research, you will find what is best for your family.  I also brought a photo album of my family members to the hospital (photos that made me smile).  Besides that, the most important thing to bring to surgery is a loved one to provide comfort.  Its difficult to put ourselves on the receiving end of caregiving, but you need to do this for yourself and your family for the immediate future so that you can return to your former role as soon as possible.  Keeping you in prayer for a successful surgery and speedy recovery.
s
7mm AN June 2011
Almost doubled in July 2012
Translab Sep 2012 at Kaiser San Diego

kmr1969

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Re: Surgery scheduled for 11/13.
« Reply #3 on: October 11, 2012, 12:10:00 pm »
Thanks for responding Karen.

I understand I will be getting a packet from House, but wondering what happens on the day prior to surgery?  What tests do they put you through and did you have to do another MRI?  What was your experience the day of surgery?

I will be having translab for a 2.8 cm, right side AN.

Thanks,

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

It is what it is

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Re: Surgery scheduled for 11/13.
« Reply #4 on: October 11, 2012, 12:19:09 pm »
You'll meet with the surgeons,  have a hearing test, a balance test, and you'll see an internist for a medical pre-surgery exam.  The business office will also make sure all your paperwork is in order.  It took most of the day. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

kmr1969

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Re: Surgery scheduled for 11/13.
« Reply #5 on: October 11, 2012, 12:22:40 pm »
Sheila,

Thanks for your words of encouragement.  I'm glad to hear you are recovering so well.  I hope I am as fortunate.  Did you go to House, or somewhere else?

I have awesome kids and know they will do great and be a big help to the family that will be watching over them. 

Making the decision for surgery was hard enough, but knowing that this decision would take me 3,000 miles away from home made it even tougher.  Especially since I have 2 nearby hospitals (Johns Hopkins and University of MD Medical System) with AN experience, but my wife and I just felt the most comfortable with Dr. Brackmann.

Best wishes for a continued great recovery.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

mindyandy

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Re: Surgery scheduled for 11/13.
« Reply #6 on: October 13, 2012, 07:30:14 am »
Hi Ken
I am now 7 months post op Dr. Friedman & Schwartz. You are in wonderful hands. I met Dr. Brackman post op and he took my sutures out. Very nice man. Prayers for you. Anxieity is the hardest part.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

kmr1969

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Re: Surgery scheduled for 11/13.
« Reply #7 on: October 13, 2012, 04:10:46 pm »
Thanks Mindy and I sincerely appreciate the prayers.

My original diagnosis was in early July and I just told my parents today as I didn't want to tell them until I had a plan of action in motion.  Not an easy conversation, but I used a lot of what I've read on the forum to explain it to them as best I could.  Mom took it better than Dad.

Another hurdle down.
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

It is what it is

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Re: Surgery scheduled for 11/13.
« Reply #8 on: October 13, 2012, 11:37:27 pm »
It is a difficult thing for parents to hear. 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

chance1212

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Re: Surgery scheduled for 11/13.
« Reply #9 on: October 22, 2012, 05:58:05 pm »
I'm having my surgery at Vanderbilt on that same day. Best wishes to you and your family.
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

kmr1969

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Re: Surgery scheduled for 11/13.
« Reply #10 on: October 23, 2012, 10:48:14 am »
Chance1212,

Thanks and good luck to you as well.  I'm glad it is a Tuesday the 13th and not a Friday the 13th.

Booking flights today and just got a list of lab tests that need to be taken care of before I meet with the doctors.  Staying bust helps.

I have a calendar on which I am marking off the days with "Tumor Free" written on the surgery day.  Trying to convince myself that surgery day is something to look forward to and not something to dread.  Not much luck with that yet, but trying my best.

Hang in there,

Ken

2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

It is what it is

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Re: Surgery scheduled for 11/13.
« Reply #11 on: October 23, 2012, 12:46:38 pm »
Healing thoughts and prayers will continue to be with you both. 

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

BRS89

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Re: Surgery scheduled for 11/13.
« Reply #12 on: November 05, 2012, 06:06:08 am »
Good Luck Ken, thanks for the kind words on my other thread.

You really hit the nail on the head when you said you had guilt for putting your family through this. That is my #1 overwhelming feeling as well. My son is 6 and just doesn't understand why superdad is not well. Not sure how we get past these feelings, other than to do this and get it behind us. That's my attitude. As I get closer to the surgery, I might dread more than now, but the only way through it, is to do it.

I will be thinking about you. I almost decided on the House Clinic as well.

Peter325

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Re: Surgery scheduled for 11/13.
« Reply #13 on: November 05, 2012, 11:04:39 am »
Good luck, if you have an iPhone / smartphone bring it, I really liked being able to communicate with friends and family via facebook or text messages and if you have iOS6 you can put your phone on do not disturb and it won't beep or vibrate or anything that will annoy you or others in the hospital. Not sure what the rules are at HEI around phones but in my Hospital all the official literature said no phones in the ICU but when I got there all the nurses had them and told me it was fine.

I was prepared to be SSD but I wasn't prepared for how much my balance would be affected - everyone's results are different but be ready for some wobbly head and such - they got me out of bed the day after the surgery and it was difficult, four weeks out now and I'm heading back to work tomorrow, I followed the doctors advice and got out walking as much as I could during my recovery, using hiking poles for the first week. In my case the more I exercised my balance the better it got. I'm also doing vestibular rehab with physiotherapists that specialize in neurological issues.

As for your kids, you may find that they will find it 'empowering' for them to take care of superdad for a bit. My son, who's 17, really got a boost out of having to be the man of the house for a few weeks. It was amazing to see the transformation from me always having to tell him when to take out the trash or clean up to doing all that without being asked and volunteering to help out to make things easier for myself and my wife. There are good things that can come of bad situations!

Again good luck, it's stressful and scary, hope you have a great outcome.

Peter
Diagnosed May 2011 with a 2.8 x 2.6 x 2.5 cm right side AN - Surgery with Dr. Akagami and Dr. Westerberg on Oct 9th, 2012 - SSD and some minor balance issues - no noticeable facial weakness.

kmr1969

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Re: Surgery scheduled for 11/13.
« Reply #14 on: November 05, 2012, 05:25:51 pm »
Thanks all for checking in. 

Brandon, I am of the same mindset of you - we have to do it to get through it.  I am moving into scared silly mode.  Hoping to feel some peace when we get to LA and get settled.

Peter, My wife is the techie in my house and we will have an iPhone and iPad with us.  Have tested Skype and looks like that works on the  boys' iTouches at home. Amazing!  Thanks for your good wishes and best wishes to you for what sounds like a very good outcome so far.

Today was a tough day as it was my last official day in the office.  Had to tell 3 more co-workers who might notice that I am MIA for the rest of year, and then said 'see you soon' to those who previously knew.  All of my co-workers have been great, I think I will actually miss them.

My wife has the rest of my week pretty packed as both boys' have doctor's appointments and one orthodontist appt.  Life goes on even through all this chaos.  Voting tomorrow, lunch with my parents on Wednesday, a massage on Thursday, and then taking the boys to see the new James Bond movie on Friday.

Seemed like this date was far away a few weeks ago.  I am at peace with the decision, just wish I could get my anxiety under control.

Ken

2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far