New Member - Surgery on September 24th

[MatthewLH]

Hi.

I have been reading the boards for about a month and I want to thank everyone for the great insight and knowledge.  After the initial fear from finding out you have one of these tumors, being able to have the collective knowledge and experience of this board made it much easier.

I started having Tinnitus about 5 months ago and worked with natural remedies and chiropractors to try and help.  When I started being unsteady or dizzy about two months ago I finally went to an ENT who set up the MRI to rule out the worst case.   So with the worst case confirmed I have been trying to understand as much about AN's as possible and also have talked to various Doctors about treatment/surgery options.

I have a 3.7cm tumor on my right side and the consensus is that surgery is the best option, so I am set to have Translab on September 24th with Dr. Mickey and Dr. Roland at UT Southwestern in Dallas.  My tumor was able to get so large because it grew away from my ear canal and my hearing in the affected side is actually quite good.   Both the loss of hearing in a relatively good ear and the size of the tumor are slightly depressing, but I am generally past my pity party and am fairly "good" with my situation.

Thanks again to everyone whose insights made understanding this scary situation more manageable. 

[miltoney]

Good luck with your surgery!

[MDemisay]

Dear Mathew,

Welcome to the ANA Forum! Here you will find many understanding people who will help as they have helped me. Truly, we can help each other if we stay connected! We are not doctors, we are the patients. Each on our own journey to wellness, I believe!

This is a wonderful site filled with knowledge and experience of each of us. You can even come and express your frustration!

Take it from me (who was alone) on my first journey in 2004, having the benefit of the Forum is vastly better!

You sound like you have resolved within yourself your destiny which is surgery, that's a good thing! Relax now in these final days, try to pray and\or meditate.

Do you want me to pray?

Mike

[MatthewLH]

Mike,

I am taking all prayers and good thoughts!   Thanks.

I do have a question I have not found an answer for, and that is what can/do you do during the recovery period.  I imagine the first few days in the Hospital are sleep and recovery, but after that and when at home what do you fill your days with?  Do you read, work on a computer, or are you so tired that almost anything knocks you down?

What should I expect and plan for both in the hospital and at home?

[lrobie]

Matthew,

Everyone's recovery is different in what you are able to do after surgery.  In the hospital, you sleep quite a bit...when you can.  Usually, you will have physical therapists knocking at your door to get you up and around.  This will help with balance and dizziness issues you might experience.  Not everyone has those issues though.  You will be given a list of things that you should avoid, i.e. lifting over 5-10 pounds, bending over, blowing your nose, etc.  When you're home, you will do a lot of resting, walking, resting and walking.  For some, it's difficult at first to read, watch TV or be in front of the computer.  You'll have to determine when you feel up to doing this and it may be for a limited amount of time.  As you recover your strength, you will feel up to doing more things.  As state above, everyone is different. 

I wish you the best for your surgery next week.

Lisa

[Jim Scott]

Mike,

I am taking all prayers and good thoughts!   Thanks.

I do have a question I have not found an answer for, and that is what can/do you do during the recovery period.  I imagine the first few days in the Hospital are sleep and recovery, but after that and when at home what do you fill your days with?  Do you read, work on a computer, or are you so tired that almost anything knocks you down?

What should I expect and plan for both in the hospital and at home?

Hi, Mike ~

Lisa offered you an accurate description of your post-hospital recovery. 

Your doctor will give you the restrictions (lifting, etc) and we always advise recovering AN surgical patients to 'listen to their body'.  Translation: don't try to do more than what feels right for you.  Do not use another AN patient's recovery timetable as if it were your own.  We are unique individuals and our recovery will vary from person to person.  Some are back to work in a few weeks with only minor issues.  A rare few are running half-marathons within a few months of their surgery.  Other AN post-op patients are struggling with vexing problems months after their surgery, not the least of which is frustration. 

I enjoyed a good recovery with few issues but didn't do much my first week at home but nap, watch TV and read, then nap some more.  My point being that fatigue is always a factor in AN surgery recovery.  Your body is recuperating from a massive invasion (the surgery) and is working hard to repair the damage while your brain works to adjust to the change in hearing and/or loss of the balance nerve on the affected side.  The result is fatigue.  The good news is that it recedes are your body heals and as you can do more, you'll get stronger.  Returning to work is sometimes problematic but can be handled by coming back on a part-time schedule at first, if your employer is amenable to that.   If work is not an issue (it wasn't for me, I was just retired) that can help free up your time for balance therapy/exercises and slowly but surely resuming what were your normal activities. 

It's a balance between taking care of yourself, not over-doing it but not pampering yourself to the point that you never get much past the sit, nap, sit, nap stage of recovery.  There may be some challenges to surmount.  Nothing is guaranteed.  However, we're here to provide information and support, as needed.  Please take advantage of our members AN recovery expertise. 

Jim

[sarahinPA]

Mike,
You will be in my thoughts as you prepare for your surgery this month. As PP has mentioned, recovery will be different for everyone. The biggest piece of advice that was given to me before surgery was 1. the first 3 days are the most difficult and things get better and better each day after that and 2. be prepared for your body to be sore, as being left on the operating table can cause that.

Also, when you get home, you will know what is best for you, dont strain yourself, and take advantage of your support. When people offer, take it, as you will recover better without pushing yourself.

My recovery was a little different as i had some complications after surgery. But once I was home from the hospital, i found that getting outside and taking a walk in the park was a really good way to build up my energy. Although i only got about 500 feet my first walk, and then took an 1 1/2 hour nap, i thought it was progress.

Also, it took me about 2 weeks to feel ok to drive, and even then, it was a little difficult and i only went to the grocery store in my neighborhood, but with the balance, it does help to get out there and do things again that you used to. Just make sure your comfortable with it before going.

You will know your body and when you feel up to certain things, dont push yourself, and hopefully you have a nice employer that will allow you to take the time you need. I took all 3 months of my FMLA leave, although i think i could have went back to work at about 2 months. ( i took advantage of the extra time off )

Good luck, my best words of advice came from my doctor, he said "have peace with this, its in their hands now, and they will take very good care of you"

[james e]

Good luck to you. Since your hearing is good on your AN side, why are you having a translab? Just curious. I had a translab, very good and fast recovery, but I gave up my hearing. My hearing was horrible...all but deaf...so giving up the ear was not a big decision. Giving up a good ear must have been a difficult decision.

James

[MatthewLH]

Thanks for all the great insight and responses!   The unknown has been what bothers me most about this process and this fills in some of the gaps with what to expect and what I should feel like in recovery.

The reason for Translab is that this is what multiple surgeons have said is the best procedure to use with my tumor based on its size (3.7cm by 2.6cm by 2.8cm) and its location.   Translab gives more of a direct shot at the tumor I am told and have seen on the MRI's.   One surgeon did say he would use Retrosigmoid which is what I wanted to hear, but he would not use this to preserve hearing.  This surgeon gave me a less than 1% chance to retain hearing using the Retrosigmoid approach, he just preferred that method.

Because my hearing is good I wanted to be told Retrosigmoid with a reasonable chance to retain hearing, but my reality (which I took time to accept) is that I will lose hearing/inner ear on that side regardless of procedure and my main concern is facial nerve preservation.  I have told my wife that I could be Halloween ready at all times, but she doesn't always like my sense of humor.

I will take some time after the surgery to continue looking into hearing options.  The Baha bolt seems popular and I have been reading about the devices using teeth to conduct sound as well. 

Thanks again for all the responses. 

P.S.  My name is Matthew.  Mike is one of the posters kind enough to respond to my first post.

[MDemisay]

Matthew,

Glad you are going with your gut! We have a special group here, certainly! Welcome! Do you pray or meditate? In the days before your operation, you could receive a great deal of solace from group prayer and individual meditation......A great help to me and others here is the knowledge that everything will be ok if you have done your research and give the rest to God. A meditation CD that has been helpful to me is Dr. Wayne Dyer's I AM meditation available through Hale House.


Mike

[leapyrtwins]

Good luck with your surgery.

The BAHA isn't really a "bolt" but it sounds like you have the general idea 

As someone who has a BAHA, I have to say that personally I find it amazing and have never regretted having the implant.

Best,

Jan

[MDemisay]

Dear Matthew,

Please know that I will be pulling for you in the form of prayer as you go in to surgery on Monday, try to relax and get some good rest after the translab surgery.
You are on your way to recovery.......May it be a smooth road.....

Mike

Post as often as you'd like....we are here for you!

[mindyandy]

Matthew
I wanted to wish you luck for your surgery tomorrow. You sound confident and before you know it you'll be telling us how your recovery is going. *hugs* & remember we are all here for you if you have questions.

Mindy

[MatthewLH]

Hi all, this is Matthew and I wanted to let everyone know that the surgery went very well.  The post surgery CAT scan (not physically happy with that at 2AM following surgery) showed what the surgeons believed during surgery, which was no signs of any remaining tumor.

Considering I was in surgery nine days ago I am feeling and doing very well and my overall healing and energy level is better than I expected at this post surgery date.

My brain/eyes/inner ear are still working to function together with only a single inner ear input, but I am getting steady improvement and doing my PT exercises. I even took a little stroll in the neighborhood today.

There is still some facial nerve weakness, but the nerve is intact and tested functional before they sewed me up.   I am seeing slow and steady improvement with this each day.   Baby steps.

Thanks again for all of the kind thoughts and prayers.

[PamJ]

Well done Matthew the worst is behind you now it's all systems go for the healing process.  I had my tumour out 18 months ago and have just had a BAHA fitted that I am really pleased with.  Good Luck for the future.

Pam