Headaches Post AN Surgery

[Omaschwannoma]

Here is a very interesting article regarding headaches post AN treatment and wanted to share with you all.  The good news is "it will go away." 


http://www.medscape.com/viewarticle/565668

[Captain Deb]

Yes they do begin to subside, mine went from daily to  once or twice a week, depending on the level of activity and it took 3 years. I still get some brainwreck migraines pretty frequently despite being on 1200 mg of Neurontin and 100 mg of Topamax (am upping that in Jan when my insurance kicks back in.) I've pretty much resigned myself to having this condition permanently.

Capt Deb

[nancyann]

I was one of the'lucky' ones as far as headaches go - once I got home I began having excrutiating, unrelenting headaches round the clock for approx. 2 1/2 weeks.  Then little by little they started lessening, I think they stopped around 2 months post op, just one once in awhile.  I rarely got headaches preop, & feel for anyone who has ongoing problems with this - it is so debilitating & depressing to get them on a regular basis.....

[Static]

Mine aren't as bad in the summer, matter of fact, I did pretty good this past summer and forgot how bad they got in the winter.  Stupid weather patterns the winter brings, ugh, I  need to get my head fixed real soon!  It is something I've learned to deal with but it doesn't make for easy daily life.

[Larry]

5 years and still going strong - not one day without a headache and probably 3-4 times a week - a major brainwreck.
I am waiting for that magical day when I have a headache free day!



laz

[Omaschwannoma]

Larry,

So sorry about your 5-year brainwrecks.  My heart goes out to you and Deb, if I could wave a "magic" whatever to take them away, well......

I see you have re-growth and W & W mode.  Has any of the docs said the tumor is what's causing the pain?  Headaches are one of the BT symptoms, but you already know that. 

[Larry]

karen,

the "QWACKS" reckon i shouldn't have headaches after 6 months post op- yeah right. personally, i reckon a contributing factor is the lack of "gentleness" when cutting open the scalp and also when closing it. I don't know about the actual AN - I guess that depends where its growing and what it's pressing on.

All I really know is the pain and being disabled thorugh sheer pain that is horrible

laz

[Janet]

Larry, I have new found hope!

Last week I went to a doctor at Georgetown University (WashingtonDC, Dr Ducic) who does a carpel tunnel like procedure on the occipital nerve which can be the source of headaches and migraines. (mine start at the back of the head which fits the syndrome) He doesn't touch the nerve but frees up space for it. It is done outpatient. I also have a very tender spot on the scar which is probably a scar neuroma from the lesser occipital nerve judging from the way the pain radiates.I can live with the scar pain but he can fix that using a different procedure. The occipital pain is life changing.

He is the first doctor that I have seen that can offer something that addresses the source of the pain rather than treating the symptoms. The is a 20% chance that the surgery will do nothing. Some are totally free of pain after and others have varying degrees of success. It won't make you worse because he doesn't cut the nerve like some of the other occipital nerve procedures. He has done 200 of these procedures. He is a plastic surgeon that specializes in all types of peripheral nerve surgery. I have nothing to lose but money. (I live in Seattle and this would be out of net-work.)

Janet

[Soundy]

I have had headaches of varying degree ever since surgery... from this dull ache with spikes of severe that is
going on now to days that I just drug myself and sleep til it is gone ... the severe ones are getting less ...
down to 1 or 2 a week instead of the 4 or 5 of six weeks ago... I just play it by ear and treat what comes up...

[jtd71465]

I'm one of the lucky ones.  I had more headaches prior to surgery, coming up on one year post op and I could count on one hand the  number of migranes / headaches I've had....the one I have today is due to the 5 or 6 beers I had last night...I'll exclude that in the official count.

All joking aside....I've posted this before and heard it from one of my Dr's, one cause for migranes after surgery could be due to "bone dust"....my guess is advances have been made with surgical procedures but I was wondering if anyone else had heard this?

Thanks,


Joe

[jerseygirl]

Jtd,

I have heard and read about this in a medical journal when I was researching AN treatments after it was decided that my scar tissue is really a growing tumor after all. I guess a lot of people who had surgery complained about incapacitating headaches (including myself) that surgeons took notice and starting addressing this issue. Some people, otherwise healthy, opted for radiation when possible for fear of horrible outcomes, including headaches, which caused competition among microsurgeons and radiosurgeons. Back in 1988 I don't know about anybody who were doing both and could advise you on what is better for you.

I am very pleased that no surgeon nowadays closes the incison the way I was closed in 1988 by stuffing the muscle (trapezoid) into the incision along with a metal plate. This guaranteed headaches whenever I turned my head, bent over or did any activity whatsoever because the stuffed muscle pulled on the dura! This is not to mention that my trapezoid on the AN side is smaller and the first opening is huge in comparison to what they do now!

When I was researching treatments the second time around, headaches were high on my priority list right after the facial nerve. I asked everytime what the surgeon did to avoid headaches. I heard about bone dust, cranioplasty, new metal plate and whatever else, all designed to reduce or eliminate headaches.

The headaches do indeed go away just like the article says but I feel that mine were so incapacitating that I lost what seemed to be the best, most energetic years of my life from 25 to 35 to headaches that robbed me of joy, activities, parties, etc.

I am happy for anybody who does not have headaches and hope headaches will diminish or stop altogether for those of you who have them!

                                Eve

[Soundy]

I have noticed a return of facial numbness and eye twitch when I have the severe headaches...
this bothers me as I am worried that something is going on... even though doctor says don't worry
til after MRI on the 18th... easy for him to say since it is not his head hurting or face going numb...

aside from dry mouth and metal taste my eye and facial symptoms had gone away... they do go away
when headache subsides but it is still worrisome... has anyone else had the return of facial issues with
headache ?? I keep thinking internal swelling pressing on the nerve but have been told I am not the doctor..
seems logical to me ... but without a degree my thoughts on the matter seem uselsess

[yardtick]

Soundy,

My is a facial neuroma, when I get a headache I get all of the symptoms you describe.  The eye twitch causes a stabbing pain behind my eye and my vision becomes very blurry.  My face feels numb all the time but when I have a headache its like I've had dental work and the freezing is starting to thaw, so you have numbness and pain at the same time.  It is weird. 

Good luck on the 18th. 

Anne Marie

[Captain Deb]

Jeez Janet, with all the $ I've spent on meds the past 5 years I could have probably afforded that surgery sans insurance! Good luck with that--you'll get to be our headache guinea pig, I guess.  Outpatient  surgery!! Dr Love had his spinal surgery outpatient. The things they do with microsurgery now are truely amazing.  I see The Headache Wiz in January and I'll ask about Ducic.  He knew Silberstien, so he'll know this doc, too, know doubt.

I got an appt for a neck MRI finally.  Just want to rule out a disc problem as I know you did the same and encouraged me to do so.  The headaches start/radiate so deep in the neck and occipital region--Hey someone pull that danged cutlass outta me neck PUL--LEASE!!!!! OUCH!!!


Cheers, and here's to ONE headache free day for our dear sweet Laz!

Capt Deb

[Janet]

My doctor took all of the latest precautions including collection of bone dust. I think all doctors, no matter how aclaimed they are, have a percentage of headache problems and that includes radiologists. If nobody really knows what causes headaches, nobody really knows how to prevent them. At best, some have favorite medications but that doesn't begin to address the root problem. They only offer therories. I think a lot of our headaches are different and therefore have different causes. Maybe we were prone to headaches to begin with and cutting a large nerve pushed the other nerves over the edge. Maybe the AN isn't really where the problem originates only a contributing factor. I just hope more will be done in the future to find out what really causes these post-op headaches!  Janet