Surgery Scheduled ... Suddenly Very Anxious.

[arcteryx]

Hi all:  I've finally scheduled my surgery for next month.  I've decided to go to Barrows in Phoenix and have retrosigmoid to remove my 3cm AN in an attempt to save my hearing.  I realize it's a long shot and hope I'm not risking facial nerve functioning (or worse!), but I thought that I should at least try, since my hearing is perfect right now.

Suddenly I'm very anxious and not getting much sleep.  Maybe it's just me, but it's hard to believe anybody can survive this surgery with all the things that can possibly go wrong.  Of course, the fact that I just got the full list of risks & complications from the doctor didn't help much.  There are things on that list that I didn't even realize were potential complications!

Just wanted to thank everybody here for their advice & support.  I couldn't have made such an informed decision without many people here and their willingness to share their stories.

Anybody have any advice on how to handle the pure fear and panic that sometimes occurs while awaiting surgery?

Thanks!

[Kathleen_Mc]

arcteryx: I can understand your anxieties, as surgery approaches I too questioned my decision. Remember you made this decision with education and knowing what is right for you, it is natural to feel anxiety just prior to any surgery. I agreee that with all the things that could go wrong it is hard to believe that people survive this ordeal but you will.
Try your best to keep occupied and if you can't get to sleep because your lying there worring, get up and read or something like that for a while and then try again.
Kathleen

[Robquinn9]

My wife is doing wonderfully about 6 weeks later.  She truly is.  Stay strong and positive.  There is hope and peace of mind on the horizon.

[HeadCase2]

arcteryx,
   Waiting for the surgery date can be tough.  The uncertainty doesn't help.  But know that the time will go quickly.  I'm now about 10 weeks post-op, and doing well.  I've returned to work, and doing most of my normal activities.  There have been many people that have been treated for an AN, and participated on this site for a short time, and have healed and moved on.
   While waiting, try to get some exercise, it's easier to fall asleep if you're tired.  And being in good shape can help you heal faster.
Regards,
 Rob

[Battyp]

First off I can't believe you got a list?  A list?  Geesh...they have a list?  I'm stunned!  I went into basically blind with the only fear being facial paralysis or worse. 

I agree with headcase...if you'r not sleeping exercise as it will help you after surgery.  Also review the thread on what you will  need after surgery and focus on when I come home I'm going to need....do you know where you are going to go for vestibular rehab?  Pick a place now and go by and introduce yourself.

I was told by three neuro's that retro allowed them to see the facial nerve better than translab due to my tumor size and location and you'res is slightly bigger so I'd say the same thing holds.  I also wound up with a teeny tiny bit of hearing which didnt' appear until 8 mos out.  I didn't have any going in so I'm pleased with that.

Now take a deep breath and repeat after me..."  I'm going to be just fine, I'm at peace with my decsion, my cyber friends in my exclusive club are crossing their fingers, saying prayers for me, sending me warm hugs and everything else we can dream up to get you over the hump! 

Keep us updated the month will fly by before you know it!

[Pembo]

I think the 3 weeks between diagnosis and surgery were the HARDEST of this whole An journey including recovery right after surgery. My mind was everywhere!

I had lists going but not like batty's. My lists were all the things to be done before surgery and then lists of things about my kids for the my parents who were going to be taking care of them. (They take care of them often, it really wasn't necessary but it helped.)  Before surgery I was adamant that we needed dirt to make a new garden space and I planted sunflowers and pumpkins before surgery. I had all my flowers planted, moved all the firewod off the porch (no small feat when you're so dizzy you can hardly walk straight). We also HAD to take the kids to the local amusement park and I HAD to take my then almost 2 yo to the zoo.

Just do whatever you need to to get through each day. Surgery will be here before you know it and you'll be whining like the rest of us in no time.   We are all looking forward to your very successful surgery story!!!!!

Stay strong and talk to us often....we truly know what you are going through.............

[Gennysmom]

I concur with everyone.  I'm currently taking care of as many things as I can and doing things I may not be able to do after surgery and trying to get a lot of rest and take care of myself.  Go away for a weekend, go to a baseball game, do things for you that it may take a while before you can enjoy them again.  Then you have a great reference of things that you had fun doing when you're laying in the hospital not having fun.  Carpe Diem.  I also got a prescription for Ativan for days when it's too much for me and the anxiety gets to me.  I like having it because it's a security net and I seem to be less anxious knowing that it's there.  The month will go fast, trust me, I can't believe it's been 2 months since diagnosis...seems like only a couple weeks looking back. 

You will do fine, just allow yourself to relax and heal.  We're all pulling for you so you will have plenty of positive energy about you!!! 

[Lisa Peele]

Suddenly I'm very anxious and not getting much sleep.  Maybe it's just me, but it's hard to believe anybody can survive this surgery with all the things that can possibly go wrong.  Of course, the fact that I just got the full list of risks & complications from the doctor didn't help much.  There are things on that list that I didn't even realize were potential complications!

There is a thread also in General Discussion under the heading Fighting off the Fear that is on this topic and may be of help. 

It's impossible to know the outcome of your surgery prior to going in, and that only increases the anxiety.  Much depends on the location and other particulars of your tumor as well as the expertise of your surgical team.  You have done your research, and scheduled your surgery--now you have to place trust in your medical team and stay positive.

I, too, felt anxious upon reading the packet of information from my doctors which included specific details and terms regarding my surgery, and a list of all the possible complications.  I kept reminding myself that they have to show you that, and that it's good to at least be aware of some of the things you may be dealing with after surgery.  However, it's also important to know that you are unlikely to experience many of the things you read about, and those things you do deal with right after surgery will likely fade (or even go away completely) with time. 

One of the amazing and beautiful things about humans is that we are so resilient...but we really don't know the power within ourselves until we are tested.  Through this experience, you will find strength you didn't know you had.   
 
Many people do well with the various treatments for AN, but you don't always hear about that.  I have stayed on this board for nearly two years mainly to give encouragement to people looking for good stories.  I had a 4+ cm tumor removed in June, 2004, and am back to living life as I was before my tumor was diagnosed.  I have diminished hearing in my affected ear, but no other residual issues (no headaches, tinnitus, balance issues, facial issues, etc.).  Please look up my profile and view my previous posts if you're interested in hearing my story.  I am happy to share any other information you feel would be helpful--just email me or send me a personal message.

Sending only good vibes your way,

Lisa P. 

[cookiesecond]

arcteryx,
I understand where you are coming from. I had about 5 months from diagnosis until surgery.It was scary and sometimes it helped to read and research and sometimes the possible complications ... were more than I could handle. I did feel better once I decided which route I would take. I had a 3cm AN removed 8-2-05 by the translab approach. I had already lost most of my hearing so that is why I chose that method. I was given the little booklet all about the surgery and it really covered everything. They have to tell you all of that but there are many sucess stories for each method.My surgery was 8 hours long but they removed all of the tumor with no complications.I got along really good.
There is a list on here of the things that will make life easier ater surgery. The most important thing is a good support team. My family and friends were great and I needed that. A handheld shower head and a shower chair worked good.I stocked the cabinet with things easy to eat, soup pudding etc.
I tried to get everything in order before surgery., bills etc. I had people that could help but it helped me feel more in control. I think that was the hardest part for me because I had enough symptoms that I needed to take care of the tumor but I didn't feel in control.
One thing that really helped was that I felt really good about my surgical team. I had surgery in Raliegh NC with Dr. Cunningham, Dr McElveen and Dr Fukushima. Dr Cunningham is the nicest most patient Dr you ever hope to meet. Dr McEleen is good too and Fukushima is known around the world for his contributions to the AN world.
I pray you will find peace and that you will have a speedy recovery. Feel free to vent anytime and keep us posted.
Take care and think only good things,
Lynn
 Ã‚ 

[justafactoflife]

Hi,

You are my first person to reply to.  I'm a newbie to this site but not to the surgery.  I found you thru the abta.org website which has a link to this forum.  You need not fear for the surgery in itself.  I found it was the least of my problems.  My diagnosis was in June of 2002 and my surgery was in July of 2003.  I was told to put it off because the benefits of surgery didn't out way the complications I would experience.  Looking back, I don't think I would have put it off because either way, I would probably lose my hearing.  I was in intensive care 2 days after surgery and the tumor was all removed.   I was worried before going in to surgery, I'd wake up with a splitting headache but it never even hurt.

The hard part about the recovery was the intense physical therapy to re-learn how to walk and train my brain to use my Left Ear hearing/balance capability in conjunction with what I had left in my Right Ear.  I experienced more balance issues than hearing loss.  I was given a 20% chance that I'd not lose my hearing, so I resigned myself to the fact that I'd be deaf in my Right Ear.  My tumor was 7MM x 4MM and I lost approx 40% of my hearing in the Right Ear, so this was a blessing and miracle in itself.  I was told to get a hearing aide and it helps but I have troubles understanding some conversations.  Before surgery, I had little if any loss.  I wasn't really expecting my eyelid would want to stay closed and my mouth would have a slight droop when I smiled.   The PT has almost restored that back to normal.  It took about 3 months with a lot of work on my part too.

Don't be afraid, because they have come a long way on handling Brain Tumor Surgery and recovery.  I would advise you work closely with your surgeon and you primary care doctors.  I found out about 4 weeks after the surgery that I was having a reaction to the Steroid Medicine the surgeon prescribed to help reduce any brain swelling that might occur.  What happened?....Well, I became very weak and nauseated even though I ate well, I was losing weight.  Finally, I knew something was wrong when I started getting a rash and feeling like passing out.  I contacted my local doctor and after 3 initial visits, he found I had Diabetes induced by the steroid.  They contacted my surgeon and due to the nature of steroids, I had to be tapered off gradually while taking insulin to control the diabetes.  In time the Diabetes went away now that I'm off the steroids.  I told you this to just listen to your body.

I didn't want you to be afraid, but I wanted you to know that your doctors have to have your input to be able to help you.  Tell them everything even if you think nothing really is going wrong.  Write down all your symptoms because your memory may not be good enough while under all the medications.  Make sure you have a good support of friends, family, etc.  because you will need their help possibly.  Finally, you will get better in time and be patient with yourself to allow it to happen.