ANA Discussion Forum

Post-Treatment => Headaches => Topic started by: Omaschwannoma on December 02, 2007, 02:39:04 pm

Title: Headaches Post AN Surgery
Post by: Omaschwannoma on December 02, 2007, 02:39:04 pm: 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
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 02, 2007, 03:12:29 pm: 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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: nancyann on December 02, 2007, 04:31:31 pm: 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.....
Title: Re: Headaches Post AN Surgery
Post by: Static on December 02, 2007, 09:31:22 pm: 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.
Title: Re: Headaches Post AN Surgery
Post by: Larry on December 03, 2007, 03:58:20 pm: 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
Title: Re: Headaches Post AN Surgery
Post by: Omaschwannoma on December 04, 2007, 07:01:57 am: 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.
Title: Re: Headaches Post AN Surgery
Post by: Larry on December 06, 2007, 11:33:15 pm: 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
Title: Re: Headaches Post AN Surgery
Post by: Janet on December 07, 2007, 09:46:20 am: 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
Title: Re: Headaches Post AN Surgery
Post by: Soundy on December 08, 2007, 09:13:44 am: 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...
Title: Re: Headaches Post AN Surgery
Post by: jtd71465 on December 08, 2007, 09:59:34 am: 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
Title: Re: Headaches Post AN Surgery
Post by: jerseygirl on December 08, 2007, 11:06:02 am: 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
Title: Re: Headaches Post AN Surgery
Post by: Soundy on December 08, 2007, 08:39:47 pm: 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
Title: Re: Headaches Post AN Surgery
Post by: yardtick on December 09, 2007, 10:26:32 am: 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
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 09, 2007, 12:13:53 pm: 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!!!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_sword_through_head_lg_clr.gif)

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

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: Janet on December 09, 2007, 07:09:43 pm: 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
Title: Re: Headaches Post AN Surgery
Post by: Larry on December 09, 2007, 09:09:37 pm: Hi Janet,

I really hope that procedure helps you. As deb said, we'll let you be the guinnea pig. Even if it worked for you, I still have reservations about surgery on my head again - dunno, just have this blockage now. We'll wait on your verdict and see what happens but i will press my docs on the subject and see if anyone here could do it. Hey, might be a good excuse for me to go back to Seattle!!

Oh, and Deb, keep doing those anti voodoo war dances fending off the evil headache spirit.

laz
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 10, 2007, 09:44:52 am: Here's a video I took of the Headache Monster last night on my hidden video camera.

(http://i235.photobucket.com/albums/ee60/Captdeb_photos/troll_green_lumbering_lg_clr.gif)

Ain't he an ugly sucker? Yikes! Makes me skin crawl just lookin' at him!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: Patti UT on December 10, 2007, 08:02:34 pm: Quote from: Static on December 02, 2007, 09:31:22 pm
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.

I hear ya (in my good ear) Static. I was thinking how great my head had been feeling all summer, our winter came a bit late, so lack of winter storms was keeping my head clear. Now that it has set in, I'm all wonky headed with vertigo, no depth perception and the dreaded brainwreck. If I didn't have kids in school, I'd run away to OZ every winter.

DEeb, that headache monster sure gets around. The big lug.

patti ut
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 11, 2007, 10:17:09 am: Getting Xmas ornaments out of crawl space under the stairs. Can't find the friggin TREE SKIRT! Root around some more (Dr Love has bad back--he can't do it) Get flashlight--root around some more. Swear and cuss. Look in first box I had pulled out. Find tree skirt. Cuss some more. Head feel like it's going to explode. Cry. Hold head. Lay down. Cry some more. Cuss some more. Ouch. Ouch. OUCH!!!! Five friggin' YEARS!!!!! When will this EVER END!!!!!!

What was that doctor's name?

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirateface_crying_sm_wht.gif)
Title: Re: Headaches Post AN Surgery
Post by: Janet on December 11, 2007, 11:13:50 am: Deb,

Google Occipital Neuralgia. Could the trigger be this rather than a true headache disorder? Maybe one sets off the other. I have the exact same trigger. The occipital nerve runs around like a ram horn from the base of your skull, behind your ear and around. Sometimes I wonder if the AN gets in the way of a diagnosis because most occipital neuralgia patients don't have ANs. I wonder if the migraines before surgery were actually this rather than a true migraine and the surgery exacerbated an existing problem. The symptoms are very similar. Could this set off your cluster headaches? Could your incision connect the nerve paths? The occipital nerves run outside the skull. Think electricity and how it works. As always, more questions than answers.

I'm just trying to connect the dots between specialties with given info! There doesn't seem to be any AN/Headache specialists out there. Janet
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 11, 2007, 11:50:19 am: AHA! Nerve entrapment. My PT diagnosed me with that one already. That occipital neuralgia thing, along with degenerative disc disease in my neck is just one of a cluster of factors that give me these "multiple component" headaches. I'm having my neck MRI'd this week just to see how far the degenerative disc thing has gotten and if anything can be done surgically.

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: Static on December 11, 2007, 05:07:37 pm: That green guy is a nasty bugger! I was wonderin what the back monster looked like because it seems that I have been hit by that sucker too. This past Saturday I was being a good girl and going through paperwork while sitting on my bed, got up to get my glasses and couldn't sit back down, the pain was so bad and I have no idea what I did. Thought it would work itself back out but it didn't and it's still hanging around. It has been so bad, it was taking me forever to get up from a sitting position and at times it was just easier to not get up because it hurt so much. I've been home from work for the past 2 days and it isn't looking good for the rest of the week :( I can't even romp around with the puppies because I can't freakin bend over or get back up, it's like I'm 80 years old! Why do these things happen when there are tons of things to get done? Deb, can't you make a monster to scare these other monsters away??? I'm sure you must have something up your sleeve because these anti inflammatories, muscle relaxers and pain meds are just putting me in never never land!
~Karen
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 11, 2007, 05:16:55 pm: (http://i235.photobucket.com/albums/ee60/Captdeb_photos/beholder_hovering_lg_clr.gif)
Headache and other Monster Scarer-away-er Monster. Too bad he's a very lazy Monster!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: Static on December 11, 2007, 05:18:18 pm: Actually, he looks like he would give a nice massage :) LOL!!!
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 14, 2007, 12:13:13 pm: Big ole nasty visit from the headache monster on Wednesday! Woke me up at 3 AM. That Occipital neuralgia thing--felt that occiptial nerve just throbbing! Am hoarding my what little Imitrex I have left for emergencies only. Didn't feel the true migraine symtoms till later in the day. By 3 PM it was an emergency and I may have waited too long. I think Janet is right about one thing triggering another. I think what I experience is a domino effect--first the neck thing (cervicogenic), then the occipital nerve thing, then finally the migraine. The whole thing plays out over a few days. All I know is I had a whopper load of pain for a full 18 hours. Yuck!

Capt Deb >:(
Title: Re: Headaches Post AN Surgery
Post by: Janet on December 14, 2007, 03:44:48 pm: Capt,

I hate the middle of the night head pain. I wear a soft neck brace at night. It keeps my chin from going down too far while I am sleeping. It is downward and sideways movement that triggers the occipital pain for me. Before the brace, Indomethacin and Botox, I would wake up in the middle of the night a couple times a week with severe (I do mean severe) head pain in the back of my head. My neck MRI doesn't show any problems in my neck, so I really do think it is the occipital nerve for me.

I am hoping surgery that creates more room for the occipital nerves will stop the problem.

Janet
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 16, 2007, 01:21:42 pm: I'll tell ya, I'm ready to do surgery on myself if it'll get that friggin nerve to quit firing!!!! I can feel it back there just shooting off during one of my "episodes." I do use ice packs and try to numb it. Helps a little. My PT gave me an image of the occipital nerve where it runs through the head muscles and you can see the spot where it starts to hurt! For me this is the middle of a three-part domino-effect headache.
1. Neck--
2. occipital nerve--
3. forehead, behind eye and all over left head. Often accompanied by nausea and light and sound sensitivity

I was shooting Imitrex between stages 1 and 2 which worked pretty well, but was really expensive! Around $60 per headache, after I reached my insurance cap of $2000 in May. Can't do that anymore! If I shoot it between stages 2 and 3 it's not nearly as effective.

I talked to my cousin, who works for Glaxo, last night. I told him that what I wanted for Christmas was a suitcase full of Imitrex samples. He laughed and said he'd work on it. I love him, but didn't tell him he was working for big Pharma, the enemy. Watched Sicko last night. I'm moving to France. Or Canada. At the end of the movie was a website for Americans wanting to marry Canadians for the health benefits--www.hookacannuck.com. Nuff said about that'n I guess!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)

Capt Deb
Title: Re: Headaches Post AN Surgery
Post by: Larry on December 16, 2007, 07:56:19 pm: Humbug to the headache monster.

Janet, any idea when you are having your surgery?

laz
Title: Re: Headaches Post AN Surgery
Post by: Janet on December 16, 2007, 09:42:53 pm: End of February. If it doesn't work, at least I tried. The big concern with most nerve surgery is that it can make it worse. This surgery is different in that the occipital nerve isn't touched but more room is created around the nerve. He said he won't make it worse and I needed to hear that. The lessor occiptal nerve is growing in my incision and that one will be revised. (I can live with that pain but I might as well get that fixed as well.) The occipital nerves are peripheral nerves outside the skull and can be a source of a lot of head and neck pain. If you Google Ducic Georgetown you can read about the procedure. My headache neurologist is concerned with my long term use of anti-inflammatories and thinks it would be worth a try.
Title: Re: Headaches Post AN Surgery
Post by: Soundy on December 16, 2007, 11:09:36 pm: As long as I stay on my carefully stack pile of 20 pillows I am fine at night ..but if I turn and
come off them I will wake with a headache... if it is just starting Tylenol and hot shower
knock it out ...if I wait too long codeine is needed...
and really only four pillows but my husband claims there are so many that there is no
room for him
Title: Re: Headaches Post AN Surgery
Post by: danijake on December 17, 2007, 08:09:25 am: Ibuprofen eases the pounding, but the headache is still there. So I take lots of ibuprofen and Pepcid AC for my tummy. I can handle a dull ache, but not "the heartbeat" :'(
Title: Re: Headaches Post AN Surgery
Post by: Captain Deb on December 18, 2007, 04:11:34 pm: I found this on Dr Ducic:
http://www.georgetownuniversityhospital.org/documents/Physician%20Update/PhysicianUpdateAprMay06.pdf (http://www.georgetownuniversityhospital.org/documents/Physician%20Update/PhysicianUpdateAprMay06.pdf)
Veeeeeeeery interesting!

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
Title: Re: Headaches Post AN Surgery
Post by: Omaschwannoma on December 18, 2007, 06:07:55 pm: Wow, Deb just read that article and really sounds promising! Thanks for posting.
Title: Re: Headaches Post AN Surgery
Post by: cgreen on April 02, 2008, 11:41:30 pm: hi...I am new to this discussion forum, so please forgive me if I am out of turn. I am at my wits end and am hoping someone has a similar ailment and maybe an answer...so far I have been unable to find a doctor who can figure this out...

Before my surgery, I lead a very active life style...running, biking, soccer, paddling, tennis...you name it, I loved it....

It took a while to get my feet back on the ground. I have headaches daily and have been told that is too be expected. The really weird thing is that whenever I exercise I get this horrible stabbing pain in the front part of my ear. It's like a knitting needle stabbing me in the side of my head...it's awful, not to sound like a baby but it can bring me to tears.

Anyone out there experiencing this crazy pain?....I refuse to live my life horizonal!

Thanks for listening...Cindy....

(edited to remove personal contact info......)
Title: Re: Headaches Post AN Surgery
Post by: staypoz on April 03, 2008, 06:23:53 am: Hi, Cindy. Those of us who post in the "headache" section know exactly what you're talking about. You should geta copy of the ANA's booklet on headaches. I think you will find it and this forum very helpful.

staypoz
Title: Re: Headaches Post AN Surgery
Post by: ppearl214 on April 03, 2008, 07:52:03 am: Hi Cindy and welcome.... glad you found us here and looking forward to your further participation. so many here that can share experiences with you about post treatment headaches and do hope that the responses help to bring you answers you seek out.... hang in there... the headaches are a true bugger.

Phyl

(FYI... site rules note that we're not suppose to post private info, which includes contact/phone/email, etc info... http://anausa.org/forum/index.php?topic=4.0. Suggestion is to have folks here PM -- private email -- you here on the site and you all can share personal info behind the scenes. No worries..... just FYI for future use.... again, welcome! :) )