newly diagnosed

[eyeamneone]

Hey everybody.  This is my first post to the forum here.  About three weeks ago I was diagnosed with an Acoustic Neuroma.  I had an MRI after severe facial numbness and tingling.  I was then told about the tumor in my head.  I'm around 30 years old.  When I was first diagnosed I was pretty emotionally low as most of you may have been.    Anyway, I have my surgery scheduled for two weeks.  I can't remember the exact name of the procedure I'm going to have but they're going to go in behind my ear.  I would greatly appreciate any advice, sharing your surgery stories or anything else.  Thanks.

[cajungrl37]

Hi there,

You will get a lot and great advice in this forum.  I don't post too much, I mostly read and it has helped.  I was diagnosed in May 2005 with a 4 cm AN on the left.  I had never experienced tingling or numbness in the face.  I had a stopped up ear at first, then the headaches and then the off balanced.  How big is your tumor?  Since my tumor was considered a large tumor, I had to ungergo the translabryinth or (translab).  I have lost my hearing totally on that side.  I had facial drooping after surgery, but had the hypoglossal anastomosis done to give me tone on the AN side, but everyone's tumor has effected everyone differently, depending on size and growth, at least that's what I have noticed in reading other AN experiences.  This is a good place to talk and ask any questions that you may have.  This is a group of very well informed and understanding people.

take care

Leah

[Obita]

Hi eyeamneone and welcome:

I had translab surgery 2 and a half years ago for a 2.5cm AN.  I am deaf in the left but just fine otherwise. 

The recovery is kind of slow so don't let it get you down.  The more you rest, the faster you heal.

Best of luck to you,  Kathy

[Patti UT]

HI Eyeamneone,
  I am sorry you are having to join our blub, but SO GLAD you found this forum. You will find the compassion and true understanding of what you are going through here. These folks have a lot of first hand knowlege to share. Keep us informed on your progress. Ask lots of quuestions as you research your options. You will find lots of info and answers here. I'm just 2 years post op. Like Kathy said, post op progress is slow, so try and be patient. Thats probalby the biggest thing I have had to learn , is to be patient. SOmething I've never been very good at.
Take Care, and keep posting and asking questions.

Hugs
Patti UT  yootee

[eyeamneone]

Thanks for the responses guys.  a few answers to your questions.  I live in Chicago.  I'm 30ish.  I'm told by doctors that the tumor in my head is in the neighborhood of a golfball size.  The two surgeouns I spoke with alredy..i'm sorry, three, have said to go right to the surgery and bypass the radiology.  It also has some cystic qualities.  from what i know i'm going to be in the hospital for 5-6 days.  How are they going to treat my pain during this time?  How about when I leave?  I highly doubt advil or tylenol are going to cut it.  Have all of you guys lost your hearing in the effected ear?  Right now my hearing isn't that bad.  I would like to save it.  So, again thanks to everyone who has written back.  And for those "lurking" but don't type I invite you to break the ice and we'll talk.  but for this post's topic i want to discuss pain management after the surgery;

[krbonner]

Hey everybody.  This is my first post to the forum here.  About three weeks ago I was diagnosed with an Acoustic Neuroma.  I had an MRI after severe facial numbness and tingling.  I was then told about the tumor in my head.  I'm around 30 years old.  When I was first diagnosed I was pretty emotionally low as most of you may have been.    Anyway, I have my surgery scheduled for two weeks.  I can't remember the exact name of the procedure I'm going to have but they're going to go in behind my ear.  I would greatly appreciate any advice, sharing your surgery stories or anything else.  Thanks.

I'm also 30-something, and had translab surgery one month ago.  And, honestly, aside from short hair on one side and needing a 30-45 min nap in the afternoon you'd never know I had it done so recently.  Some people do have post-op issues that take longer to clear up, but there's no guarantee that will happen to you - I'm walking proof!  You're welcome to read about my surgery and recovery at my CarePages page: go to www.carepages.com and visit the page KatieANSurgery.  For me, the waiting and wondering about what my outcome would be was almost worse than just dealing with it those first couple of days post-op.

Where are you having your surgery?  How big is the AN? 

Best of luck, and keep reading and posting any and all questions.  This is a very friendly, supportive group!

Katie

[krbonner]

Thanks for the responses guys.  a few answers to your questions.  I live in Chicago.  I'm 30ish.  I'm told by doctors that the tumor in my head is in the neighborhood of a golfball size.  The two surgeouns I spoke with alredy..i'm sorry, three, have said to go right to the surgery and bypass the radiology.  It also has some cystic qualities.  from what i know i'm going to be in the hospital for 5-6 days.  How are they going to treat my pain during this time?  How about when I leave?  I highly doubt advil or tylenol are going to cut it.  Have all of you guys lost your hearing in the effected ear?  Right now my hearing isn't that bad.  I would like to save it.  So, again thanks to everyone who has written back.  And for those "lurking" but don't type I invite you to break the ice and we'll talk.  but for this post's topic i want to discuss pain management after the surgery;

My personal experience:
Due to size, location, and rapid growth I was also advised to move ahead to surgery instead of radiation.  It was a choice I was very comfortable with.

I had my surgery on Wed, and came home Sunday afternoon.  The first 24 hours I was in neuro-ICU and on IV morphine and oral codeine for pain.  By 48 hours post-op, I was on just the oral codeine.  By Tuesday post-op (a couple days after I came home) I switched myself to just Advil/Tylenol because I hated the way the narcotics made me feel - and no one tells you how constipating narcotics are!  That got to be worse than the head pain!  Ugh!     And I was surprised at how well the OTC meds worked - but Advil has always worked well for me.  I stayed on Advil 24 hours/day until about 3 weeks post-op.  Now I'm taking it every couple of days for a headache, but that's it.

And yes, the hearing on my AN side is 100% gone, but it was 95% gone pre-op so I honestly have not noticed a difference.  I also haven't  noticed a difference in my balance from pre-op.  I was given a prescription for meds to help with dizziness, but I haven't needed it for two weeks now.

Everyone has their own unique experience and reaction to the surgery.  And I know I've been very lucky.  But I also know it was immensely helpful, for me, to read about others' experiences when I was waiting around for my surgery.

Katie

[Cheryl R]

You will find a wide variation in how much pain people have  after surgery.    I had mid fossa approach done 5 yrs ago and had almost no pain and took Tylenol # 3.  6 mos ago I had translab done and used only Vicodin post op.        No time did I ever have pain that was not taken care of by the oral meds.                  I did occ go a little longer than I should of in order to take the meds with food at a meal.          There have been some who get pain pumps post op  and assume this is usually with morphine.            The amt of pain you have will depend on your incision size and location,your personal pain tolerance, and other post op factors.                       Pain control post op  is ususally monitored very closely now  and is considered the 5th vital sign.    You will be asked to rate your pain on a 0 -10 scale.                      One may have nausea post op and there are several meds available for this.    They are usally given  thru your IV or your capped IV site.
   Each doctor usually has his favorite or standard pain med he uses so you can ask ahead and let him know if a particular one is known to bother you.
    Hope this answered your question somewhat!                        Cheryl R.

[cookiesecond]

Hi eyeamneone,
I am glad you found this group. I have found it very informative and encouraging. I had the translab approach to remove a 3+ cm AN 8-2-05. I had surgery at Duke Health Raliegh in NC. I live in SC. I had a great team of doctors. Drs Cunningham,McElveen and Fukushima. My surgery lasted 8 hours because the tumor had wrapped around the facial nerve. I had no facial problems! My only lingering issue is balance and occasional nausea.
My hospital stay was 6 days.I was on vicodin pre op for a previous back injury but my doctor switched my medicine to percocet because he said vicodin has been linked to hearing loss and with the translab I lost all hearing in my AN ear.I have since read that abusing vicodin leads to hearing loss but I guess he was just extra careful and I appreciate that.
I was in icu overnight, then a stepdown room and then back to a regular room.  I was admitted the day before surgery to start iv antibiotics.
I was sent home with percocet for pain and a steroid pack and phenergan for nausea.
Each An journey is different.
I feel having confidence in my doctors was a great peace and having a good support system is invaluable. I am not usually a needy person but I had to let go and let others help for awhile.

Take care and feel free to ask away. There are many on here that are very helpful.
Lynn

[Obita]

Hello again:

My hearing was almost gone by the time I was diagnosed.  Because of that and where my tumor was we chose the translab approach to get it out.  This approach will guarantee deafness.

Everyone and every tumor is different.  If they are going to try to save your hearing they will use one of the other approaches.

My head pain was not near as bad as I thought it would be.  The pain I did have was easily managed with narcotics for a few days after getting home. My neck did hurt from being cocked one way for 8.5 hours.  They send you home with strong meds so don't worry about it.

It sounds like they might be using the retrosigmoid approach on you??  This approach is behind the ear also.  With this approach they try to save your hearing.

flyer58 lives in Chicago if you want to hook up with someone local from this forum.

Good luck, Kathy from Minnesota

[Pembo]

I came home on Extra Strength Tylenol. I did use it 24 hours a day for a few weeks but gradually that changed.  I too had a lot of neck stiffness after 16 hours of surgery but my OT was my angel for working that out.

Good luck to you.........

[msuscottie]

Welcome, but sorry that you have to be here! I was diagnosed at 28 years old and had surgeries at 29 and 30 years old. I'm now 31, but unfortunatley have a lot of experience with ANs. Feel free to message me if you'd like to talk.

[Sue]

Hi and welcome to the forum.  A "golf ball" size tumor sounds pretty big to me! I have a smaller one, so I had Gamma Knife. Yours sounds like it's too big for that option.  Hopefully your team of doctors are well versed in the removal of AN's, and with the helpful support from the surgical patients on this forum, you will get through this just fine.  It's not something one looks forward to - someone operating on their head!, but modern medicine is a wonderful thing. Write down your questions for your doctors so you can remember what to ask them. On this forum there are some helpful posts on dealing with the hospital stay, personal care after your surgery at home (showering, hair washing, etc) that can be of help to you.  You can search for those topics and I'm sure you can find them.

Best wishes to you.

Sue in Vancouver

[msuscottie]

My tumor was 3.5cm and my Dr's described it as a "golfball" size too.

[Boppie]

I had some pretty good pain pills to take every four hours starting on the morning of release from hospital and as needed at home.  They worked great, something with codeine in them (Darvocet)  I only took them for a few days and then tapered off to tylenol.  Some folks are given steriod packs but I didn't need it.  The neck pain from the surgical position seems to be the bigger problem for pain management.