T minus 15 days and counting until Retrosigmoid surgery

[Gr8fulDad]

Hi all!!

I'm starting to get a little freaked out as my surgery date begins to approach.  Part of me wants to get this mutant golf ball out of my head pronto and part of me wants to puke at the thought of it all.  I have a highly cystic tumor and my surgeon has explained its sometimes hard to tell the difference between cyst walls and the facial nerves.  She plans on taking a very conservative approach and showed me on the scan the part of the tumor she plans to leave in because she is concerned about potential damage to the 7th cranial nerve.  She puts the chances of regrowth at about 20% which means I would need a second surgery.  However, the trade-off is that she pegs the risk of facial weakness at about 10%.  I'll take those odds of needing a second surgery if it reduces the chance of nerve problems to 10%, especially considering the size of my tumor.

My stomach is in knots when I think about it all.  I was feeling really positive about it all, but as the surgery date creeps closer and closer, my positive outlook is starting to fade.

I'm having surgery at Toronto Western Hospital with Dr. Gelareh Zadeh.  I feel that I could not be in better hands with her and I have full faith and confidence that the outcome wouldn't be any better with any other surgeon.  Anyway, I guess I'm searching for encouragement to send me back in the positive direction.  If anyone has any words of encouragement or words of wisdom I would love to hear it as I am getting more freaked out with each passing day.

David   

[UpstateNY]

Hi David,

My tumor was smaller than yours, but I also freaked out when my surgery date approached.  I don't advise this, but I got to the point of cancelling my surgery days before it was to occur, but then rescheduled it a month later.  Now that the surgery has past, I realize it was just anxiety about not knowing what the outcome would be.  The truth is that most AN surgeries are very successful these days.  You need to believe that you have done your best with choosing a surgeon and yours will be successful as well. 

Something that helped me was to print out a number of very positive stories.  I then read them each time my anxiety rose to remind myself of these positive outcomes.

[Gr8fulDad]

Thanks for the words of wisdom.  I'm definitely trying to stay positive, although admittedly I have intermittent moments of weakness.  I think the best advice that was given to me is - What's coming is coming and there is nothing I can do about it.  I have zero control at this point.  I'm confident that I'm in incredible hands with Dr. Zadeh.  I keep saying that it's important for a patient to be the quarterback of their treatment plan.  Eventually you have to make a decision and throw the ball, but once it leaves your hands it's really out of your control.  I threw the ball to Dr. Zadeh because after all of my research, I felt most confident that Dr. Zadeh would take the ball to the proverbial end zone.  I don't think it would be normal if I wasn't freaked out and a little scared, but whether I like it or not in two weeks it will be May 26.

Giving up control like this is pretty scary.  I also find it really unsettling that I will be completely dependent on other people for the first couple days post-surgery.  I don't like the thought of being so dependent on nurses and healthcare professionals to to take care of me.  I have anxiety about giving up a certain degree of dignity by not being able to care for myself in the first few post op days.

D.

[researcher]

David, I hope you find some peace with your decisions, the process, and the surgery. Once I made the decision to have surgery for my AN and chose the team, I felt at peace. Not sure why since normally I would want to do the surgery myself! Just kidding!

I had no trepidation at the surgery. I was so glad to be at the hospital and having the surgery to get the AN out of my head. I just knew I would be okay. Not sure why I was so calm about the actual surgery. I hope you find that inner calmness. Maybe you could focus on your aftercare. That you can control. Best wishes to you!

[InnerGrace]

Hi, David.  I am kinda following you on here as my surgery is scheduled on the 30th of May.  I am by nature a worrier and a borderline hypochondriac.....  I am by no means perfectly calm..as the day slowly approaches, I find myself getting more and more nervous but for knowing who I am, I am astonishingly calmer than what I would have ever believed myself to be...considering what we are taking on.....I personally owe that to God...   Like you, I keep having to remind myself that this is no longer in my control, no backing out and this has to be done.   I am anxious to get on the other side of surgery and on the road to recovery.  I have an Ocean City, MD vacation planned with my four daughters, grandaughter and two of the boyfriends this August, and you know what?  I'm going!!!!  And that's what my total focus is on now and will be during recovery!!!    Lots of prayers going your way, David, for a successful surgery, calm nerves and a swift uneventful recovery!!!!!! 

~~Laura

[Gr8fulDad]

Researcher and Laura - Thanks so much for your thoughts.

I'm anxious about the recovery.  I'm not looking forward to the first few days of puking and feeling like I've been run over by a truck.  I don't like the idea of being dependent on the nurses and hospital staff.  I don't like the idea of giving up control.  That said, I have no choice in the matter.  May 26 is coming whether I like it or not and this mutant golf ball is being taken out.

There is a four day music festival in Virginia that I have planned at the end of August..and like you, I'm going.  Come hell or high water....I will be at that music festival.  I'm also a HUGE Grateful Dead fan and I have tickets to see Dead & Co. (three of the remaining members) in Michigan on July 7, which is 25 years almost to the day that I saw my first Grateful Dead concert at the same venue.  It'll be a pretty nostalgic experience and I'll be really disappointed if I don't make it.  Making that concert is a lofty goal....but not unrealistic if all goes well.  I think it's helpful to have things post-surgery to look forward to.

My intention is to try an message you after my surgery and before yours to tell you it ain't so bad after all.   

[Greece Lover]

Good luck tomorrow, Gr8fulDad. I'm two weeks out from surgery. My wife convinced me today to smoke a pork shoulder on the grill so I must be doing better! I think being calm before hand can really help.

We like to give ourselves the illusion of control in our lives, but things like this help us realize we can not control our destinies. There is terror in that realization, but peace as well. I wish you all the best.

[Gr8fulDad]

Thanks so much for the good wishes!  It's really encouraging to hear you're already out on the grill.  I have a bit of a BBQ fetish myself and I'm looking forward to spending my time homing my skills during my time home and recovering.  No question - giving up control is the scariest part of the whole thing.  Peace of mind comes with having absolute confidence in the medical team that will be taking care of me.  Wheel to the storm.....here we go!

[researcher]

Good luck with your surgery tomorrow. Take care!

[InnerGrace]

Good luck, Gr8fulDad!  Right behind you!!!!

[InnerGrace]

Thinking of you today, Gr8fulDad.  Day after recovery period.  Still praying for a smooth recovery for you..... 

[Gr8fulDad]

It  wasn't so bad.  I was out of  bed today. I had my wife get me a slice of pizza.  It's not fun but it really ìsnt so bad.   I can hear and I have full facial function

[InnerGrace]

Yay!!!!!!  I am so glad to hear from you!!  And that you are doing so well......pizza even.   I can only hope mine goes as well......I'm sick to my stomach right now but you've made me feel better....praying for you to stay on the positive course. 

[researcher]

Excellent news!! Take care.

[Greece Lover]

Happy dance!