what can I expect

[lugnuts]

I am so happy to have found this forum.  It seems to be the best place to find actual experential information.  Although I have had symptoms of AN for many years it was diagnosed Oct. 2006 and I have been watching and waiting since.  In Oct. 2006 it was 15 mm (transverse); 0.8 mm (A); 0.6 mm (crano caudial); in Dec. 07 it was 18.6;13.5 and 10.6mm.  It is growing and I feel it.  Aside from the typical issues described in this forum I have a few questions I have not seen the answer to; I know the progress is very individual but I would like some input.
My AN is on my R side; I have good vision in general in my L eye with the exception of inability to focus the eye; this has been occuring more frequently and happens several times an hour and lasts from about one to a few minutes; my MD does not think it is related to the AN; my OD says my eye looks fine.  Does anyone have related experience?
My other question is related to return to functionality after surgery.  I will have another MRI in June and suspect more growth based on my symptoms.  After  the Dec. MRI my MD said that we can schedule treatment or wait, I decided to wait.  I now feel that I will have the AN surgically removed in the fall.  I have a demanding job that requires great attention and energy (I am a director of a department-big woop); I am concerned about succession planning etc.  The question is: What is the recovery period after surgery?  Can I expect to return to norman stressful activity after the surgery, and, if so, how long does it take?  I would like to know (ie 4 weeks, 6 to 12 months, forever?)
Thank you,

[leapyrtwins]

Hi -

I didn't have symptoms like the ones you describe, but I did have surgery.

I'm the controller of a professional nursing association, not a director, but still a hectic job    I returned to work part-time in 2 1/2 weeks and full time in 4.  Everyone's recovery time is different, but most docs will say it's typically 6 weeks.

I don't know how much you have investigated your treatment options, but radiation may be an option for you and the recovery isn't as long as surgery.  You may want to look into it, if you haven't already.

Jan 

[LADavid]

Hey Lugnuts
Jan does make a point (she has a brain you know  ).  There really isn't anything typical.  I was in excellent physical condition prior to surgery.  I had a 1.5cm on the right side -- surgery in the beginning of December.  When the tumor was removed, it had to be pried from the facial nerve stretching it a bit.  Even still, the doctors predicted a month or two recovery.  At nearly five months, I still have some facial palsy -- enough that I talk from one side of my mouth and have balance issues.  I can't go back to what I normally do for a living because I'm an actor and need full control of my face.  However, in my former life I was a marketing executive.  I would have to guess that at about two months I would have been able to return to work -- maybe shorter days, but I still would have been able to function.  If the issue of temporary facial palsy and balance (you don't do high-wire work, do you?) won't interfere with your ability to do your job, you could probably count on 6 weeks, possibly less.
Best wishes.
David

[TLC719]

Lugnuts, I had eye pain in m right eye three years before they knew it was AN.I went to three or four different optimologists ,they did not have a clue.There was one I talked to over the phone he thought it could be a tumer but did not tell me because did'nt want to scare me.Mean time it was siliently growing all those years & my symtoms got worse. One morning I almost passed out,that when I went to my primary Dr. & finally got a MRI ,that told the the story A big lump in my head!3.8cm.I never thought that would happen to me maybe I should play the the Ga. lottery.In short Don't wait around to long! Truly TLC

[Jim Scott]

The question is: What is the recovery period after surgery?  Can I expect to return to norman stressful activity after the surgery, and, if so, how long does it take?  I would like to know (ie 4 weeks, 6 to 12 months, forever?)
Thank you.

The quick answer is 'everyone is different'.  My recovery from surgery was around two weeks but I would recommend putting aside four to six weeks for your recuperation, just to be cautious.  As for work, you can always come back sooner and I doubt anyone would complain, but if you say 'two weeks' and end up needing three or four to perform your demanding job, that'll be a problem.  Remember, this is major surgery, not something relatively quick and simple.  You'll feel better week by week, but you'll carry at least some minor 'reminders' of the surgery for a long time.  I do.  I'm in great shape two years post-surgery but in my opinion, I'm still improving.  I think this is common for post-op AN patients.

An acoustic neuroma can affect different nerves, depending on it's location and growth pattern.  That will include facial movement, eye control as well as tongue and facial sensation.  If you are experiencing an inability to focus the eye opposite the AN, your doctor is probably correct in that this has nothing to do with your AN.  However, I'm not a physician and my opinion is worth what you paid for it.

Jim

[lugnuts]

Thank you for the kind and thoughtful responses.  Over the last few days I have been focusing on the worst case; this can be depressing and a bit too comsumiing.  It do believe that it is best to analyze the situaton then try to habituate the symptoms (or, perhaps, this would be called denial); this I can do when at work and when actively occupied in other ways but when I am at home, relaxed or laying in bed sometimes I really focus on what is happening to me.  I will have another MRI in May then, most likely plan on having the tumor removed in the fall.  From a certain point of view it is good that this is not an emergency and plans can be made, on the other hand it drives me crazy thinking of the options and potential outcomes, which this forum has provided excellent information.  After the MRI in May I will get a consultation with HEI but, at this time, I am planning to procede with my Kaiser neurosurgeon in Redwood City, I have confidence in him, he has done several hundred (any comment out there).
Thanks to Jan for her comments, I will consider radiation however I would like to have it out and I understand that surgery after radiation may be more difficult.
Thanks you, LA David, for the comments; I read your comments about the carnival, if you act half as well as you write I think you are Harrison Ford.  And to Jim, thank you for the comments, I agree my L eye symptoms are most likely not related to my R side VS.
And to TLC719, I appreciate your comments.
I now feel that I am out of the closet from a certain perspective.  Although my hearing loss has been obvious to people at work I have been able to hide my balance problems (I think); I believe soon I will discuss this with my collegues.
Thank you all for being there.
By the way, my name is not really lugnuts and I am not into auto mechanics at this time.  Lugnuts is the name of a brand of artist made cloth bags for things like groceries, gym clothes, lunch bags, etc.  I tried other names when registereing but they were taken.
JD

[Debbi]

Hi JD (aka Lugnuts)-

As you can see from my signature below, I'm having surgery next (gasp!) week, so can't tell you yet about recovery.  What I can tell you is that the first few weeks after diagnosis were very, very stressful.  If you are llike many of us here on this forum (and it sounds like you are), you will occasionally overload yourself in your aggressive quest for information.  All I can say is to give yourself time to digest things - particularly those things that seem the most frightening to you. 

And, take full advantage of this forum - there are NO stupid questions here.  And, we all know what you're going through.  I wish you much luck - and please keep in touch and let us all know how you are doing.

Debbi (six days and counting in NJ...)

[Curly Jo]

Hi JD,

I like you have experienced eye problems but mine are on the side of my AN.  I was able to find a Neuro-Opthalmologist.  He confirmed that for now; the AN is not causing the eye problems.  He did state that I could experience issues post surgery depending on the damage to my facial nerve which is compromised now.  For me, I am in the wait and see.

Best of luck with your research.

Curly Jo

[leapyrtwins]

JD -

I totally understand the feeling of just wanting your AN removed - it was one of the factors that made me choose surgery.  However, I thought it would be helpful to mention radiation to you since some AN patients don't realize it's an option.

Try not to focus on the "what ifs" and the scary possibilities; it can be very depressing.  Everyone's AN journey is different and you may be stressing about things that won't ever happen in your particular case.  There are a lot of positive stories on this forum; try to focus on that.

IMO once you find a doctor you are comfortable with and you decide on your course of treatment, the stress level goes way down.  In the meantime, hang in there.  We are all here for you.

Jan

[jacobson69]

 " I am planning to procede with my Kaiser neurosurgeon in Redwood City, I have confidence in him, he has done several hundred (any comment out there)."

JD,

I just had retrosigmoid surgery in Kaiser Redwood city with Dr. Nutik on May 13th and I've had great outcome with him.  So, if he is your neurosurgeon, you will be in excellent hands.  The nurses at Kaiser are an awesome bunch!  It has been almost 2 weeks since my surgery and I've had no major complications.  I lost my right side hearing, but I knew this could happen and was ok with it (I had already lost some hearing in that side before).  I started walking a day after surgery. I have no headaches, dizziness, vision/eye problems.  I have very little facial weakness. My balance is actually back.  I've actually started jogging a little during my evening walks.  At the two weeks mark, I am planning to start driving my kids to/from school.  Right now I do require an afternoon nap.  Please know that people recover from these surgeries at different rates.  It all depends on the size, location, how involved your AN is with the surrounding tissues/nerve.  Some ANs can be firm, soft, or vascular, thus some can be easier/more difficult to remove.  Your doctors cannot tell you what kind you have just by looking at the MRI.  I hope this answered some of your question and I wish you the best outcome possible if or when you decide to go for surgery.

Best,
Hui

3.5cm x 2.5cm x 2.7cm
Retrosigmoid on 5/13/08 with Dr. Nutik @ Redwood City Kaiser
No major complications
I cannot say enough good things about Dr. Nutik, the nurses and Kaiser

[leapyrtwins]

Hui -

sounds like you are having a great recovery.  Congratulations and thanks for telling us about it.

JD -

did you schedule your surgery yet?  It's been a while since you mentioned you were going to.

When you do have a surgery date, don't forget to put it on the AN Calendar.

Jan

[Kate B]

  The question is: What is the recovery period after surgery?  Can I expect to return to norman stressful activity after the surgery, and, if so, how long does it take?  I would like to know (ie 4 weeks, 6 to 12 months, forever?)
Thank you,

Although everyones experiences are different, there is a "typical" range of recovery which is about six weeks. It doesn't minimize those who's recovery is longer.  I put together a chart of treatment options and related side effects because I wanted to know the big picture data relative to the treatments.  PM me if you want a copy.

I returned to work full time after 5 weeks as a Director is a large suburban school district.  My biggest side effect after surgery was fatigue for a few weeks. I took daily afternoon naps.  My suggestion is to make "recovery" your focus for the period of time you are off. I set goals for healing, (walking longer distances etc...)

You have found a facility with the experience that you have a comfort level with which is the first big hurdle.

All the best,
Kate

[lugnuts]

" I am planning to procede with my Kaiser neurosurgeon in Redwood City, I have confidence in him, he has done several hundred (any comment out there)."

JD,

I just had retrosigmoid surgery in Kaiser Redwood city with Dr. Nutik on May 13th and I've had great outcome with him.  So, if he is your neurosurgeon, you will be in excellent hands.  The nurses at Kaiser are an awesome bunch!  It has been almost 2 weeks since my surgery and I've had no major complications.  I lost my right side hearing, but I knew this could happen and was ok with it (I had already lost some hearing in that side before).  I started walking a day after surgery. I have no headaches, dizziness, vision/eye problems.  I have very little facial weakness. My balance is actually back.  I've actually started jogging a little during my evening walks.  At the two weeks mark, I am planning to start driving my kids to/from school.  Right now I do require an afternoon nap.  Please know that people recover from these surgeries at different rates.  It all depends on the size, location, how involved your AN is with the surrounding tissues/nerve.  Some ANs can be firm, soft, or vascular, thus some can be easier/more difficult to remove.  Your doctors cannot tell you what kind you have just by looking at the MRI.  I hope this answered some of your question and I wish you the best outcome possible if or when you decide to go for surgery.

Best,
Hui

3.5cm x 2.5cm x 2.7cm
Retrosigmoid on 5/13/08 with Dr. Nutik @ Redwood City Kaiser
No major complications
I cannot say enough good things about Dr. Nutik, the nurses and Kaiser

Hui, Thank you for the response about Dr. Nutik at Kaiser, Redwood City; I hope you are still doing well.  I am scheduled to have my AN removed by him with assistant of the H&N surgeon on Dec. 11.  I know all situations are different.  I have confidence that I have found an excellent skilled neurosurgeon and my outcome will be the best possible.
JD

[jacobson69]

JD,

I just saw your response today and I hope your translab procedure was successful.  Sending you good thoughts and good wishes to you and everyone who has been going through this ordeal.

Be well,
Hui

PS -- I am doing well.  The only after effect I really have is loss of hearing on my right ear.  I've had my 6 months follow up MRI and there no sign of regrowth.  I will have another MRI in July.  I feel that I've got a second chance in life after all this happened.

[leapyrtwins]

Hui -

thanks for the update.  It's good to hear you are doing well.

I don't think we've heard from JD recently.  Now you've got me wondering how his surgery turned out 

Good luck with the MRI in July.

Jan