Author Topic: dad, 78 diagnosed with AN, advise pls  (Read 5678 times)

julianon

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dad, 78 diagnosed with AN, advise pls
« on: May 26, 2007, 11:59:22 am »
Hi all, my dad was recently diagnosed having acoustic neuroma, findings indicate: left C-P angle measuring 3 x 3.8cm with cystic and solid components.

Just last week he had his gall bladder removed because of stones, and since he's already in the hospital we requested for the doctors to check his head because he's complaining of headaches now and then.  After an M.R.I., it was revealed that he does have AN.

After reading about acoustic neuroma on the net, he indeed started exhibiting majority of the symptoms around 3-4 years ago.  Hearing loss, numbness of his cheek now and then, and just a few months ago he started to complain that he can't seem to walk a straight line, not like a drunk but gently wobbly.

He's a very strong person, at 78 he still runs, climb ladders, occasionally plays soccer and can lift moderately weighted objects (not that we're allowing it, but he's persistent).  It was just this year that the sense of balance started to affect/bug him.  For the moment he is still recovering from his gall bladder operation, he can already stand and walk but needs assistance.  This was his first MRI so we have no idea how fast /slow the cyst is growing.  But at 3 - 3.8cm, I was left thinking that just 3-4 months ago he is still climbing ladders and painting portions of his house.

Now, my question is, at 78 years old what do you suggest?  We are afraid that any procedure might complicate his condition.  I also read on the net that most elder people don't really die of AN but of other causes. Will AN be painful physically in the long run?  I checked on the forums and the oldest person I've seen with AN is 72 who had a successful operation.

Is it okay to post here the impression of the MRI scan?  I need advise to be guided accordingly.  He is actually more afraid of the side effects / complications of the AN treatment procedure.  For now, he is still making follow-ups with regards to his gall bladder operation.  After that we'll deal with what to do.  Please ask me whatever questions you can think of.  I might missed out on some details that can help you advise.

Thank you very much guys.  I really need help so I can understand further our options.

John


Joef

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #1 on: May 26, 2007, 07:17:08 pm »
First of all .. I'm not a doctor! ...

Its a little to large to just wait and see, but as long as it does not get worse ...  I've talked to a daughter here (Mary) with an 80+ year old mother who had a large AN removed.. And last I heard she was doing well … (she did have some facial issues)

Generally... for older folk they are not as concerned about removing the whole tumor.. Just enough to relive the pressure.. and not to hurt the facial nerve.. hearing believe it or not.. as long as the other is ear is good... losing "one" ear hearing is not so bad.... its better to keep the face and eye issues at bay…

lets see those MRI picture -- post away.. there are lots here, and post op scar's too !
« Last Edit: May 26, 2007, 07:22:26 pm by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

macintosh

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #2 on: May 26, 2007, 11:09:11 pm »
John—

One of the best ways of using this board is for advice on particular doctors. If you tell us where you’re located, someone may be able to advise you about their experiences with doctors in your area.

Although your dad’s AN is relatively large, many ANs grow very slowly as people age. The usual growth rate is 1-2 mm. a year; it might be even slower in a 78 year old.  I would be surprised if your dad was advised to have surgery before having another MRI in six months to see if it’s actually growing. If anyone does advise immediate surgery, you might want to get a second, independent opinion before going forward.

Mac


Boppie

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #3 on: May 27, 2007, 12:16:04 am »
John, I agree that debulking the tumor might be the best treatment if you need to do any treatment at all. 

I am 65.  I'd be happy to send posts personally or speak on the phone if you want to talk.
« Last Edit: May 27, 2007, 12:17:49 am by Boppie »

Windsong

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #4 on: May 27, 2007, 12:50:11 am »
I was struck by some positives here..... you said your dad is strong, has played soccer, and still runs.... that's pretty wonderful at 78.  :)   I am guessing that when you say he can lift moderate weights that you mean exercise type weights? or do you mean since his gall bladder op and An diagnosis you are watching that he doesn't lift anything too heavy?

Only his doctors, who know his history medically and the present size and location of his An, can really advise you, I think. Do post the pics though as I know there are a lot here who have had that size An and had surgery successfully too.

It's a plus that he is so strong and active. And age is relative I think if as you said he had still been running......

Ans generally grow slowly so it's even possible that his has been that size a long time. Then again you mentioned that he began having some symptom signs 3-4 months ago. I bet his generally- sounding- good condition helped stave off some of those symptoms for a while....

My father at age around 70 had some brain surgery then two weeks later some serious abdominal surgery. He recovered very well  from them. (though he has a bag he has to wear). l A few years later he had a lung op. ( a lobe removed) He was up and out of the hospital within 5 days and all packed and ready to head home and dressed and out on the patio that night with a couple of friends over and family there too... climbing stairs in the house and also to get outside. ...It's now about six years after that and he's over 80 and still walks almost every day etc...long walks.....his doctors who tested him before that last op said his body and heart were those of a 50 yr old not someone in his early 70's at the time... so again age can be relative and not mean much. Only you and he and his docs will know that type of thing.....

Recovery is so individual isn't it? There are some Aners who are in their 70's and even over and they have had surgery, or wait and watched, or radiation  and again it matters how big, what location, and the individual's own prior physical status.....

Only his doctors can advise. I am sure you will get more than one opinion though.

I am wishing you and your father all the best. Take it one day at a time, concentrate on recovery from the gall bladder, and the rest will fall into place too as you speak with treatment docs.

From your post it sounds like he has a lot going for him that is good.

Take care,

Windsong





« Last Edit: May 27, 2007, 12:54:55 am by Windsong »

julianon

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #5 on: May 27, 2007, 09:07:39 am »
Thanks for your replies.  I'll try to answer most of your questions...

The issue now is that after 3 days discharged from the hospital from gall bladder surgery, he is having a hard time walking/standing.  I've been asking what he thinks is the reason and he said he feels that his knees are generally weak.  Not jumping into conclusion but I like to assume it is because of lying down in the hospital bed for a week, and barely being mobile after being discharge and not because of vertigo (he is too lazy, but we insist that he sits and do some steps now and then).  Aside from being stubborn :), he is eating normally, being very talkative at times.  From the looks of it, right now the AN is not affecting him as much as the operation.  He has NEVER been hospitalized all his life and I guess recovery or perhaps his mental/psychological state is taking longer than usual to go back to normal.  I can say that he is genrally okay AN wise, except for the fact that he is too lazy to move.

Perhaps his strong physical shape delayed the more serious effects of AN, doctors advised that he go thru the observation phase first.  MRI after 6-12 months and check to see if it is growing.  I am eager for him to recover from this operation, that way we could observe how much AN is affecting him.  I've been reading posts on the net and stuff and having a 3.0cm bulk in the head, comparing to his current state, I do believe his general health poised as a big factor in delaying the effects.  Of course, we just can't keep crossing our fingers, 3.0cm is huge already.

Doctors advised that IF he decides to undergo surgery, they will remove part of the tumor and attach a sort of a hose to drain some liquid (??), then gamma knife afterwards.  The details are sketchy at the moment because our priority then was the gall bladder.  The issue is, we are in a third-world country (Philippines) and the options are limited compared to doctors/hospitals in the US.  As soon as he gets better we are going to consult some doctors here who are trained to treat AN, there are only a few here who specialized on such.

He is actually thinking of just keeping it in his head.  He is more worried about the effects of operation, and having observed him recovering from a more 'basic' gall bladder operation, I do think he will have trouble with the recovery period from AN surgery (if ever) mentally and psychologically.  Until now, he doesn't like to walk and is so lazy (but we're watching him closely).  Yeah, every individual is different.  Maybe his body is like a 50 yr old too, pre-operation.  Post-operation, he just got lazy but in good spirits.  He is complaining that he can't eat what he wanted to eat, etc.

About the lifting of weights, he likes to do carpenter work around his house.  So now and then he climbs over... everything.  Setting up tarps, going up the ladder to do some carpentry, moves furniture a lot now and then.

Oh, I'll be posting more details soon.  We still don't have the actual MRI scan (some hospital procedure, takes a while to get them.. 3rd world :)). 

Right now, with regards to AN I can't wait for 6 months to have him undergo MRI again just to check if it is growing.  Oh, and he doesn't have the headaches for now.  It was more frequent before his gall bladder operation.

Just a few questions, will AN be painful?  I read somewhere that AN isn't usually the cause of death to most elderly people (except when it reach brain herniation size), is there some truth to it?

Here are some of the impression details-
Pertinent FIndings:

Mass lesion is seen in the left C-P angle measuring 3 x 3.8 cm. with cystic and solid components.

There is moderate enhancement after contrast infusion.

The left internal acoustic canal is widened.

Compression effect is noted on the IV ventricle.

There is very mild dilatation of the III and IV ventricle.

Increased signal is noted in both ethmoid sinuses.

Polypoid signals are seen in the sphenoid sinus.

MRA shows no significant stenosis of the major intracranial vessels.

IMPRESSION:

Left CP angle tumor, consider an acoustic neurinoma
mild hydrocephalus
ethmoid sinus disease
sphenoid retention cyst

That's all for now.  Question, if you are familiar with all the findings and impressions, is there anything that's not supposed to be happening?  I mean, all the more serious symptoms just started 3-4 months ago.  Hearing from one ear started to decrease like 3-4 years ago, one side cheeks/facial numbness started like 2-3 years ago, headaches maybe just a year ago, some minor problem swallowing about 6-12 months ago, and some mild wobbling while walking started just 3-4 months ago.  That is why I was surprised that the tumor is already 3.0cm!

Thanks for the feedback.  I like to hear more, and more questions too so I can give you guys a better idea what's happening.

John

Boppie

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #6 on: May 27, 2007, 11:38:12 am »
John, the "debulking " of the tumor is the operation I think your doctor refers to;  then a small tube to drain fluid would be put in there to equalize pressure.  I am sure more expert posts will explain this further.

You refer to your Dad saying his knees feel weak.  I believe that could be from the anesthesia's effect on the joints.  One side effect from surgery can be mild to moderate arthritis.  Walking would help get some flexibility back.  Your Dad might be depressed about having already had unexpected gall bladder troubles and now this tumor...seems like one falls apart suddenly when we're older.  But he has shown he can do lots of physical work.  Get him some sort of homegrown or professional physical therapy.  Give him tasks to do that are reasonable.  Encourage your Dad to use a walker or cane, at least for a while to get those legs going and keep the heart healthy.

My own Dad hated his recovery from gall bladder surgery.  He swore up and down that the surgery made him feel worse.  The man was totally out of sorts because he couldn't go back to eating the fried foods and sweets he loved; he wanted it his way. 

I have heard from middle aged friends who had gall bladder surgery.  I believe they had considerable pain post op and in recovery.  I wouldn't say recovery from AN surgery was painful, but I would say it "felt" risky, scarey, like an all or nothing venture for me and mine. 

 
« Last Edit: May 27, 2007, 11:48:36 am by Boppie »

julianon

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #7 on: June 04, 2007, 09:22:58 am »
Just an update.  My dad is getting better from his gall bladder surgery.  Right now our focus remains on his full recovery and other internal organs.  He also got some prostrate and kidney stone problems but they are not that serious.  As for the AN, we consulted some doctors and the best option for now is his next MRI on November to check if it is still growing.  he is hesitant to undergo an AN surgery so let's see.

Thanks for your comments, will give updates as they come.

mema

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #8 on: June 20, 2007, 04:36:44 pm »
John,                                                                                                                                                                                     
Is there longevity in your family.  I know that my dad died at 78 and he was the longest to live.  But if there are people in your family who live lets say to 90 then it might make a difference. Especially if your dad is in good shape.  Wait and watch a few months I agree sounds like a good idea.                                                                                                                                                                                     


                                                                                      mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

kippy6

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #9 on: June 27, 2007, 09:28:24 pm »
This is a tough call. Everyone here has listed valid points. Longevity runs in our family. I'd try to take the safest option for his health...whatever that might be. Find a doctor who deals with several hundred AN's a year. Send off copies of his MRI CD and his MRI report to several different doctors who specialize in this. Please keep us posted.
AN surgery July 19, 2006
for 3cm AN and arachnoid cyst (right side)
Translab surgical approach
Dr. Brackmann and Dr. Hitselberger
House Ear Insititute

julianon

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #10 on: June 28, 2007, 09:42:07 pm »
Thanks for your comments, it helps me understand what this A.N. thing is all about.  We're scheduled to have another check-up with a different neurologist next week so let's see the feedback.  The first one recommended to have another M.R.I. after 6 months, and suggested the "debulking" method if ever.

About longevity, not easy to tell since my dad was adopted.  Based on looks though, he looks maybe 8-12 years younger.  At the moment, he's slowly recuperating from the gall bladder operation.  He went back to the hospital because of diarrhea and doctors advised he stay for a couple of days to avoid dehydration.  He lost almost 30 lbs already.  He's really lazy lately because of being bed-ridden the 1st couple of weeks after the operation.  The past few days though he's getting better, his bowel movements is getting back to normal (sometimes a week w/out one), and is able to stand/walk/ eat better.  I just hope this progression continues.   Like I said before, we just want him to get his normal diet/ strength back and then take this A.N. matter full-hand, since there's still 5 months for the next MRI.  Of course, options are now being studied/considered.  Issue still is that our country doesn't really have a lot of doctors that deal with A.N.

Question, can A.N. cause uncontrollable urination?  He can control his urination abit but the issue is he sometimes urinates 4-6 times a night (or sometimes more).  I did some research in the cause of urination and the closest I could find is Spinal Injuries and Neurological conditions like multiple sclerosis or stroke.  Would appreciate a feedback on this.  Thanks

John
« Last Edit: June 30, 2007, 09:39:40 am by julianon »

Omaschwannoma

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #11 on: July 02, 2007, 07:53:21 am »
Just an update.  My dad is getting better from his gall bladder surgery.  Right now our focus remains on his full recovery and other internal organs.  He also got some prostrate and kidney stone problems but they are not that serious.  As for the AN, we consulted some doctors and the best option for now is his next MRI on November to check if it is still growing.  he is hesitant to undergo an AN surgery so let's see.

Thanks for your comments, will give updates as they come.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Omaschwannoma

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Re: dad, 78 diagnosed with AN, advise pls
« Reply #12 on: July 02, 2007, 07:55:26 am »
Sorry about the above "no comments" but somehow I clicked the wrong button.....

The frequent urination could be from prostrate/kidney problems.  My father was diagnosed with prostrate cancer and before diagnosis was frequently urinating during the night.  Just a thought. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear