Author Topic: headache associated with acoustic neuroma  (Read 13360 times)

marjoryb

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headache associated with acoustic neuroma
« on: March 20, 2007, 09:42:14 am »


The March 2007 issue of the Acoustic Neuroma Association Notes , issue 101 has an article about headaches.   I recommend it to anyone comtemplating surgery.      I, unfortunately, think I have fallen under the "chronic phase" of post-op headaches as I'm 8 months out of surgery and have found very little relief..   it scares me to think that I may have to deal with this pain for 2, 5 or 10 years, but I have hope.    Of importance in this article is the type of surgical approach used for the surgery - mine was subocciptal which results in more frequent and severe post-op headaches; other surgical approaches have fewer incidences.   

Marjoryb

Jim Scott

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Re: headache associated with acoustic neuroma
« Reply #1 on: April 09, 2007, 03:21:38 pm »


The March 2007 issue of the Acoustic Neuroma Association Notes , issue 101 has an article about headaches.   I recommend it to anyone comtemplating surgery.  Unfortunately, I think I've fallen under the "chronic phase" of post-op headaches.  I'm 8 months out of surgery and have found very little relief.   it scares me to think that I may have to deal with this pain for 2, 5 or 10 years, but I have hope.  Of importance in this article is the type of surgical approach used for the surgery - mine was subsuboccipital which results in more frequent and severe post-op headaches; other surgical approaches have fewer incidences.   

Marjoryb

Mary:

I know that's the accepted medical consensus.  However, I had retrosigmoid approach microsurgery (see my signature) and suffered no headaches at all.  I'm now 10 months post-op.  I attribute my lack of headaches and overall successful recovery to prayer and an excellent neurosurgeon with many years of experience removing AN tumors.

I regret that you are in pain and pray that your headaches will soon subside or at least become infrequent and treatable.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Larry

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Re: headache associated with acoustic neuroma
« Reply #2 on: April 10, 2007, 04:22:09 pm »
Mary,

As I am sure you have read a number of posts here, there are a lot of people that have headaches and those that don't.

Personally, I'm one of the unlucky ones and have been searching for a stop to the pain for 4 years now. You do learn top live with it except from time to time, like any normal migraine (not from a head op) it does get to you.

Keep searching, explore different options, maybe even Botox. One poster her is on a botox trial and she believes, thus far, that it helps. There are loads of different options from prescription drugs (I have found neurontin to be a help) through to accupuncture, cortizone, physio around the neck region and there must be some so called natural treatments as well.

Don't despair, hopefully, you will find relief.

Laz

2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Static

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Re: headache associated with acoustic neuroma
« Reply #3 on: May 08, 2007, 02:44:59 pm »
I had suboccipital AN removal and currently suffer from daily headaches although taking meds that are providing some relief and do have to say that I did have these headaches prior to the surgery so I can't say for sure whether or not the headaches are from the AN surgery, the AN, or from something else altogether!  I do know that weather changes make the headaches worse which, I was told, is a sign of migraines, but I was also told that I don't necessarily fall into the migraine category.  I think I pretty much have my doctor stumped.  Going to see what I can find out at the symposium.
~Karen
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Featofclay

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Re: headache associated with acoustic neuroma
« Reply #4 on: May 08, 2007, 02:55:40 pm »
Marjory,
So sorry to read that you are still having headaches.  I had headaches for several weeks after I first got home from my surgery but they are getting much better and I am not having them as often.  The green gel Advil stops them within 15 minutes for me.  As someone else mentioned, the weather plays a big part in my headaches as well and did even prior to my surgery.  Hope yours will improve and go away completely.
Jean
Diagnosed 12/19/06; 1.7 cm x .8 cm right side
Retrosigmoid 2/16/07 @ House Ear Institute
Dr. Rick Friedman, Dr. Marc Schwartz & Dr. Michael Stefan
Excellent results

mema

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Re: headache associated with acoustic neuroma
« Reply #5 on: May 09, 2007, 04:31:10 pm »

I had 25 FSR treatments.  Day one of treatment got first headache.  They are chronic.  Sometimes they are mild other times brutal.            The docs blamed it on the head gear.  I never beleived that.  So here I am 15 months later still with headaches.  So its not only surgery that can cause them but also radiation.  I have a bleeding disease so I can't take any aspirin based pills.  Only tylenol.


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

Larry

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Re: headache associated with acoustic neuroma
« Reply #6 on: May 09, 2007, 06:07:45 pm »
Mema,

mmm, unfortunate for you but interesting. Maybe these tumors do have an impact on headaches and its not just surgery or other treatments. Maybe we need to look further.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Captain Deb

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Re: headache associated with acoustic neuroma
« Reply #7 on: July 26, 2007, 10:28:39 am »
Marjory B
How are you doing? Could you update us on your headache status? Have you seen a specialist or are you exploring any new treatment? We all would like to know how you are.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Rc Moser

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Re: headache associated with acoustic neuroma
« Reply #8 on: November 08, 2007, 09:43:03 pm »
What I have read Headaches are a side effect of AN's. Some studies (helsinki) say 70% will experience head pain. 15% will suffer cronic migraine's. Most will suffer from migraine's.  Some  of us are constantly fighting head pain of some kind. Headpain can occur with large or small tumors regardless of type of treatment. How ever larger tumor undetected for years which were experiencing migraine's have a greater risk of severve head pain following treatment. 

For us that had severe migraine's before and after treatment headaches are something we have to deal with. I'm 4 year and two month out and still have mild migraines about every 5 days. Two of these in a month will be so severe I will be unable to function and have to lie in bed for 12 to 28 hours with no noise, light, and hardly any movement.

I find that it's not the loss of hearing or the imbalance issues, or even the mental loss, but the headaches are the most life altering effect for AN's.  I can take the ringing in the ear where there is no ear and all the other side effects the don't tell you about, but the headaches is by far worse for me.

For those that don't experience headaches is surely a blessing not have to deal with head pain daily or the threat of  migraine's weekly.


9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.