AN Removal July 14, 2008

[bre2you]

Hi,

My name is Bridget.  I am new to this site but wanted to share my experience thus far.  I was diagosed with an AN in May of this year.  I had surgery on July 14, 2008 to removed the 2.8cm AN (trans-lab).  I came home on July 18.  Prior to surgery, tests showed I already had 84% deficiency on my right side.   When I woke up after surgery, the room was perpendicular.  That went away after the first day and a half.  The right side of my face was numb and barely moved.  That has slowly progressed and now I can smile although my right side is still fully numb.  My taste buds seem to be a bit numb as well so I am figuring out what I can and can not eat/taste.  I fell a few times the first night I got home.  We figured out it was because I did not have on my glasses when trying to make it to the bathroom in the middle of the night.  Also, those go-green fluorescent light bulbs we have in the bathroom did something to me as I could not focus and literally fell to the floor when the lights were on.  We have since changed the bulbs and all is well. 

I am getting around the house pretty good now.  I seem to tire very easily when I go outside though.  I have not noticed any change in my hearing, but I have not put anything up to my ear yet.  I know the hearing is gone, but don't think I am ready to KNOW that yet.    

I normally wear contact lenses, but invested in a (cute) pair of glasses prior to sugery as based on what I read, I figured I may not be able to wear my contacts for a while. My right eye is my best seeing eye and it is very dry right now.  I am praying that as the numbness goes away, so will the dryness in my eye.

I have not had to take any pain medication since I have been home.  My right hand seems a bit unsteady but I guess that will go away in time as well.  I got my bandages off on July 22 and don't have another post-op visit until Septemer 2.

Before the surgery, I was walking 3 to 4 miles a day 5 days a week.  I want to get back to that, but I realize I need to be patient.  If anyone has any recovery tips to share, please do so. 

Thanks for reading/listening!

[leapyrtwins]

Hi Bridget and welcome.

I wish you would have found this forum prior to your surgery (I wish I had also), but I'm glad you found us afterward 

It sounds like you are having a normal recovery - very similar to my own.  I had retrosigmoid last year and it left me SSD (single-sided deaf).

Lots of people adjust to SSD, but if you find you aren't adapting well there's always the BAHA or the Transear.  I have a BAHA and I am absolutely thrilled with it 

If you ever want to know more about it, please just ask.

Mind if I ask which part of the country you are from and where you had your surgery?  It might be helpful information for the newbies.

Jan

[Kate B]

Hi Bridget,

Let me be next in line to welcome you.  You asked about expectations for recovery after surgery.  There is an earlier thread started about this exact question at http://anausa.org/forum/index.php?topic=175.msg20481#msg20481.

Here is my experience.

Hi all,

Oftentimes, the expectations we set for our surgery help us prepare for the recovery time afterword. I think the *term* brain surgery can be frightening. It doesn't have to be. Know that after any treatment you will be changed. You have just been through a diagnosis of a brain tumor and treated it.

My advice is to go into the surgery knowing that it is major surgery, that you will need to focus on your recovery, and that life will go on.  Based on data, I knew I had a high probable outcome relative to maintaining my facial nerve, and a 70% chance of hearing retention.  I was hopeful and realistic about the potential outcomes.

My advice is to set goals for recovery and make the post operative time a focus on resuming your life.  After surgery, I worked through balance issues by setting goals. They told me I had lost 37% of my balance prior to surgery, so my other side seemed to have compensated and made the balance easier to regain. My surgery was Thursday and by Sunday I made it my goal to walk around the hospital floor 3 times per hour.  My former husband needed to hold on to my elbow that day, but by Monday I wanted to do it without his help. At Seton Hall, they referred to us as the couple where you couldn't tell which one had the surgery:)   

     There were a couple of times I felt off balance during recovery.  Like many on this listserv, it seemed to be at night.  Like one night I woke up in the middle of the night for a drink of water and while trying to walk around the dog,I walked into the furniture.  Or the time I just finished telling the hair stylist that I was doing great and she asked me to stand up for a moment to sweep all the clippings and I stood up and veered into the wall.  We both laughed....but truly those are the extremes and happened during the first five weeks after my surgery. 
      I NEVER had a headache with the Middle Fossa approach. My biggest side effects the first five weeks were fatigue ( I took naps daily for the first few weeks) and my right eye did not tear at first.  However, it was moist enough that I didn't need daily drops.  I went to an opthamologist in Hinsdale that works with AN's. He, too, said that my eye closed correctly and was okay.  He said sometimes the lack of tears might last for 3 month to a year to..... My tears did return right after New Years and my operation was in November.
     Keep in mind the uniqueness of the experience for each individual.  Know that your outcome and experience will be as varied as the darn tumors themselves.  But go in with an expectation that you will recover (even if you have side effects) and prepare to move forward.  Soon you will be on the other side of the mountain coaching others. 
     There was a movie called, Pay It Forward with Kevin Spacey and Helen Hunt.  Its theme was that the way to pay someone back for good fortune is to "pay it forward".

This is my hope for you as you begin and journey along the AN path. 

Kindest Regards,
Kate

 

[bre2you]

Thanks to you both for your replies.  I live in Flint, MI.  I had my surgery at Providence Hospital in Southfield, MI.  Dr. Bojrab is my surgeon.

I went into the surgery with a positive attitude and I do believe it has worked in my favor.  I know that God is watching over me and taking care of me.  My husband has been right there helping (even picking me up off the floor at times).  I am used to being the caretaker and not the one needing to be taken care of, but I am learning to take time to heal. 

Hopefully, I can learn from the pros  and be of help to others in the forum.  Thanks for making me feel welcome!

[leapyrtwins]

Bridget -

IMO a positive attitude helps immensely during recovery.  Likewise, I believe that the support of family members and faith in God are also helpful. 

I've heard very good things about Michigan Ear - and I've heard of Flint!

I have a brother who lives in Barryton, MI which - as my son says - is "nowhere near civilization".  So you may, or may not have, heard of it 

I'm from Illinois and my doctor is one of the partners of Chicago Ear Institute.

Jan

[chocolatetruffle]

hi bre2you, Welcome and glad that you found us!!!  i used to live in allendale and berrien springs in MI, your post reminded me of the blistery beautiful winters.     Incidently my AN is also 2.8 cm and i removed it last year by translab too. 

anyway, after my surgery, i had double vision which passed in 2 weeks. I also had dry eyes and numbness on my tongue (left side) - which returned to normal tearing and tongue sensation in 6 mths. so hang in there !!  by the way, how is your balance?  there are some threads on vestibular exercises in this forum that could help you.  Doing these exercises gave me confidence in walking and negotiating through uneven floors.  In terms of getting back to exercise routine, i started yoga again at 3rd mth and walking 2-3 miles and lifting weights again at my 4th month. Each person's recovery is different, so take it easy, and let your body decide when you can start doing these stuff.

Finally, help your body to heal by paying attention to your diet, ie  eating healing foods like fruits, grains, vegetables and fish.  Continue to lean on your friends, family, support groups to take care of your mental and spiritual needs too!  Hope this helps and keep healing - best wishes!

[Omaschwannoma]

The more you challenge your balance system the faster you regain your balance.  Check out vestibular therapy in your neck of the woods, tai chi classes or yoga, walking outside, mall, or anywhere where your visual field is vast, build up your muscle strength in your legs to aide in your ability to recover from a "stumble".  Remember you and all of us have good days and bad days, we're off and on, up and down.  We are not machines but human--prone to imperfection.  Embrace the "new" you.  May you find the joy in that!

[Debbi]

Hi Bridget-

And welcome!  Glad you found us.

It sounds to me like you are doing very well for only being a few weeks post surgery.  As everyone else has said, you just have to be patient with yourself and listen to your body.

As for the SSD thing, give that time, too.  I am really not having any problems with it so far, but it has only been three months for me, so I suppose the jury is still out.  As Jan said, the BAHA is a great device if you find you really don't like being SSD.

I think you have to be particularly careful at night with your balance.  You may want to consider putting in some night lights, or having a flashlight handy.  I am still very, very careful in the dark - I tend to stumble and bump into things alot unless I turn the lights on.

Make sure to keep your dry eye lubricated with drops so that you don't damage your cornea.  I use Refresh Celluvisc during the day and Refresh PM at night (my eye doesn't produce tears at all right now.)  And be careful outside as even a slight breeze can dry your eye out faster - wear big sunglasses (plus, you'll look cool!)

Hope you continue to recovery and feel better each day.

Debbi

[Jim Scott]

bre2you (Bridget):

Thanks for your post and kind words regarding our membership. 

Your recovery seems to be relatively normal with the usual annoyances and frustrations.  I'm two years out from my AN surgery and still have to be a bit cautious about walking in the dark as my balance is not 100%....more like 85%.  The fatigue you're experiencing  is also fairly common when recovering.  Time and some effort on your part will remedy many of the issues you're dealing with, today.  Patience is necessary and from the words and tone of your posts, you understand that and are adapting as necessary.  Of course a positive attitude and strong familial support are vital to a good recovery and you seem to have those in place.  All I can add to that list is prayer, which is an individual choice, of course, but it works for me and many others in ways that are sometimes astounding.  In any case, we appreciate your story and update and in my humble opinion, you're going to be fine. 

Jim

[hruss]

Bridget,

i am happy for you that you found this website, although it were after surgery. I also found it after both of my surgeries but soon after that i realized that i need a subsequent treatment, so it is of great help to me! i believe you will find here very useful inf, too.

aren't you afraid to get around in the dark?! . I personally can't make my way when it is dark that is why i always put up the light. I think, however, that my balance is not working perfectly since in the dark i hit into walls, lean to some side, instead of keeping a steady pace - and i have noticed this after my surgeries.

I have to say that i am not wearing contact lenses too because my eye scratches from time to time, and especially when there is even a light breeze out there, let alone windy weather. i wear shades (as Debbi pointed big sunglasses are fancy! ) but they do not prevent my eye from getting reddish and blurry. in such cases i use Tears Naturall - eye drops applied when you feel dryness in your eye!

As far as walks are concerned, this was the only thing doctor "gave me as a homework" - i was supposed to walk around as much as i did not feel tired. at first it was difficult because i could not turned left or right when crossing the street becauseeverything was spinning, but thanks to my parents who walked with me i managed to do it step by step alone! i also had double vision and this also made my walking more difficult but gradually this faded away too!

Do as much as you can but once you feel tired get back home and take a good rest - your body is regaining your strengths and need time!

Best wishes in your recovery!
Hrissy
 

[Pooter]

Let me get in line to welcome you to our little club.  Being only 2 weeks out, you are fairly early in your recovery but you are doing very well!  You will recover from the dryness in your eye.  I still have a bit of parallysis and only recently gotten clearance from my doctor to wear my contacts again.  You may very well have to wear your new, cute glasses for a while yet (or not).  Continued success in your recovery!

Brian

[bre2you]

Well it has been three weeks to the day since I had my surgery.  Last week, I cooked a full meal, did some light housework (dishes, vacuum) and walked around the track for 40 minutes -- not all in the same day of course    My balance is still off but each time I lost my balance at the track I was able to recover by myself -- thank God

Yesterday I went to church.  It was very obvious there that I am SSD.  I could hear, but it was obvious to me for the first time that I was only hearing out of one ear.  We went to a restaurant after church and my deaf ear was on the isle side, so I could barley hear the waiter unless I turned towards him.  So, I have to remember to position myself so that my good ear is facing out.

My taste buds are still not right either.  I have been eating fruit and vegetables to make sure my body gets its nutrients.  The fruit that I have tried so far are watermelon, grapes and pineapple.  I love seafood, but fish does not taste right to me yet.  I can eat shrimp though.  Spaghetti with meat sauce is also tolerable. 

I was able to cover up my scar with my hair but I did have to get a trim on the left side to match the right.  The dryness is my eye is MUCH better.  The numbness on the AN side is the most annoying but based on your comments it will be some time before that goes away, so I will just be patient.

My goals this week are to go to the track at least three times and to start driving at the end of the week.

Have a great week everyone and thanks for your support!

Bridget

[leapyrtwins]

Bridget -

good to hear from you.

It sounds like you are reaching many milestones and that your recovery is going well.  Don't overdo it though.  As I'm sure you already know, fatigue can set in fairly fast post op. 

The balance will most likely get better in time.  Three weeks isn't a very long period of time.

The taste buds should sort themselves out also.

Lots of people adjust to being SSD, but there are options - TransEar and BAHA.  Lots of us here are users of one or the other, and I think I can speak for everyone when I say we'd all be glad to answer questions if you have them.

Jan

[bre2you]

Thanks, Jan.  Dr. Pieper told me there are some things they can do if I did not adapt to being SSD.  He said they usually wait six months though before doing anything to allow the body to heal from the AN surgery.  I would like more info on the BAHA, so anything you could share would be great.

Bridget

[Debbi]

Hi again, Briget-

Just want to add another comment on the SSD experience.  I'm three months post op now, and am finding it much easier to be out in public.  The first few times were very unsettling to me - everything sounded odd and it was a bit scary at first.  I seem to have adapted quite well at this point.  Of course, I still can't hear out of that ear  but I'm getting used to positioning myself so that my good ear is pointed in the right direction.  I still haven't ruled out Transear or Baha, but at least it's all gotten easier now.

Good luck, and have a successful week!

Debbi