Author Topic: Headaches  (Read 30079 times)

jan pentecost

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Headaches
« on: September 04, 2005, 12:31:00 pm »
I ask you....why does my doctor tell me I shouldn't be having headaches when, in fact...I do. I tried taking Elavil for them...which worked BUT the side effects aren't worth it...weight gain...water retention. And my headaches are more during the day and the Elavil puts me to sleep...I go in on the 15th and I know what he'll say...I shouldn't be having them. Or the more I think about it, I'll get stressed resulting in a higher degree of headache. I want to know why I have them in the first place.
It is like a adoc telling a female she doesn't have menstrual cramps...okay.
I read more and more here that I am not alone. We own a business and being off work is not an alternative. Sometimes Excederine Migrane doesn't cut it. Help...any advice and direction will be most appreciated.
I am now 4 months post-op and the headaces really started about 1 month out.
jan
1.7 cm Left Side
May 3, 2005
Dr. R. Sterling Hodgson
Legacy Emaunuel Hospital
Portland, Oregon

Raydean

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Re: Headaches
« Reply #1 on: September 04, 2005, 01:07:02 pm »
You might ask your doctor about anti seizure medications for your headaches.  These medications are being prescribed for AN patients with headaches.  A friend of mine in Seattle told me that the medication "gave her, her life back.  She's off the couch and doing things again.  Made a world of difference for her."

Best to you
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

Janet

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Re: Headaches
« Reply #2 on: September 04, 2005, 11:24:38 pm »
I take an anti-seizure medication and Indomethecin (anti-inflammatory).  I am 17 months post-op. I can finally say my headaches are under control. I am from Seattle. (Not the same person Raydean referred to.) If you are interested in the MD I went to, just give me an e-mail.  Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

bjordanr

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Re: Headaches
« Reply #3 on: September 06, 2005, 12:15:58 pm »
I am 6 years post-op and still struggle with headaches.  My surgeon told me the same thing at first - doesn't understand why I have them...shouldn't..etc.  It was not until a few years later that he admitted that they are probably from bone dust or scar tissue.  Post Op Headaches are COMMON. There is SO MUCH research and papers on the subject.  Especially if you had the Retrosigmoid / Sub-Occipital approach.

I had to go to an independent (not associated with the surgeon) nuerologist to finally start getting help with the headaches.  They tried me on Elavil first too - FORGET IT. I had all the same side affects - weight gain (20lbs in 2 weeks!), water retention, tired all the time and brain fog (like a zombie!).  Also tried - B12 shots, physial therapy, massage...a whole bunch of medications...

Currently I am taking Neurontin (anti-seizure) and Vicoprofen (anti-inflammatory). Although the headaches are not gone - there is a big improvement over what they used to be! 

Hope this helps.

Peanut

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Re: Headaches
« Reply #4 on: September 09, 2005, 09:46:39 pm »
I welcome any more suggestions for dealing with headaches following the retrosigmoid/suboccipital approach. Neurontin disagreed with me so, after three tries I gave it up.  Elavil (amitriptyline) made no difference at a very low dose.  I am over two years from surgery and have had just a few glorious days with no pain at all.  Those days give me renewed hope.  Most days in the early morning I take some Feverfew or acetaminophen to reduce the head pain to a point where I can stand it.  I sometimes use a hot pack on my neck.  The pain often feels like an inner earache in the AN side (now deaf) ear.  I also sometimes get relief from Ultraset or Hydrocodone when the Ferverfew and or tylenol do not work.  How to find a doctor who acknowledges the reality of this pain?  As soon as I am free from it I start functioning at a higher level.  As is, I am fearful of planning strenuous days because of the aftermath of pain.
Peanut
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007

Larry

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Re: Headaches
« Reply #5 on: September 19, 2005, 04:50:17 pm »
I have had post AN surgery headaches for 3 years. I have discovered that drug related assistance is different for everyone. Neurontin helps me a little, nothing else does. I have tried accupuncture, cortizone, ice packs, lots of different anti inflam's - I sometimes feel like an in house chemist.

I am a little luckier than some others in that my doctors understand (or so they say) about the headaches. A change in specialists has helped too. This one now informs me that the headaches will largely be due to the cutting of the head, the muscles and whatever else they cut. Also, the way the scalp flap is put back - be it tightly or not. Makes sense to me as that area of my head is still tender. I'm guessing that the surgeons were more interested in the tumor rather than the scalp. Options - not a lot. I am going to see a pain management clinic shortly to try and get the mind to alleviate some of the matter.

Larry
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
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wind6

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Re: Headaches
« Reply #6 on: September 20, 2005, 11:49:09 am »
I saw my neurosurgeon last week and we talked about the intense headaches I have been having. My tumor was removed retrosigmoid and my doctor thinks what I am having is muscle pain from the healing process. He prescribed Flexoril (muscle relaxant) that I have been taking only at bedtime and YAHOOOOOOO the headaches have stopped!!! The drawback is I cannot take this during the day because it increases the dizziness. Hope this info helps some of you.  Sherry
2.5cm x 3.1cm facial nerve neuroma
removed 8-2-2005(retrosigmoid)
St.Johns Hospital-Springfield,Illinois
Dr.Michael McIlhany and Dr.Carol Bauer
Wait n' watch mode for 8 years.
Gamma Knife at Northwestern Memorial Hospital. Chicago,IL. Dr. James P. Chandler. July 10, 2013.

luv2teachsped

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Re: Headaches
« Reply #7 on: September 20, 2005, 07:34:47 pm »
Wind 6- I am glad you found something that is helping your headaches!!  I had them for quite a while and they can really take over your life.  Glad the Flexeril helps!!!   luv2teachsped
3cmx3cm/translab 5/05
University of Michigan
Dr.Telian and Dr.Thompson

BAHA implant-4/07, processor on 8/07

Peanut

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Re: Headaches after retrosigmoid/suboccipital resection of AN
« Reply #8 on: September 27, 2005, 12:29:36 am »
Larry and Wind 6,
Have you seen the latest (September 2005) issue of ANA Notes?  The Q & A session at the National Symposium in Florida last June featured questions from the audience fielded by doctors William Friedman (Gainesville, FL), moderator,  and  Patrick Antonelli (Gainesville, FL), Derald Brackmann(House, Los Angeles, CA), and Stephen Lewis (Gainesville, FL), panelists.  To the questions why does retrosigmoid surgery cause headaches and what can be done to alleviate these debilitating headaches, Dr. Lewis acknowledged that "they're obviously a very difficult, troublesome and significantly life affecting problem. It depends on the characteristics of the headaches.  They can range from simple wound pain, a disruption of the nerve-the cutaneous nerves in the skin-all the way to disruption through fibrous scarring deeper in."  He goes on to say that with the retrosigmoid approach "there could have been involvement or division of a nerve called the great occipital nerve, which comes up through the muscles of the neck and  supplies the area of the scalp, starts occipitally and radiates forward and gives rise to a characteristic kind of headache and can be exacerbated by palpation of the region.  If you push on it, you can really get a bad, bad headache.  That can happen with this local scar tissue, if that nerve is working its way to the surface, or may have a neuroma formation itself. There are may ways to treat that, from local medication, anti-inflammatory medications to local injections to steroids and local anesthesia agents to more permanent methods, such as nerve sectioning, freezing, or surgical division of the nerve.  It really depends on the exact characteristic of your headache."
Dr. Friedman  offers another physiological explanation for the pain and suggests a surgical solution:
"Headaches may be more common after retrosigmoid approach [sic] than after translab.  I think the reason is that if you don't reconstruct the area by putting the bone flap back and putting some plastic over the hole, then the dura, the lining of the brain, is in immediate contact not with the skull but overlying muscle.  As that scars down, whenever those muscles contract, like whenever you move your head or neck, and the muscle contracts, it pulls on the dura, a pain sensitive structure and that can cause a severe headache.  When we do have medically intractable headaches after a retrosigmoid, I encourage patients to think about having a very minor procedure.  We open that wound, remove the scar tissue and put a small plastic plate in the bony defect, so that the dura is no longer in contact with the muscle."
Does anyone have any experience with any of the explanations and suggestions for treatment of  post-op headaches given by Friedman and Lewis at the AN Symposium?
thanks in advance,
Peanut
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007

Larry

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Re: Headaches
« Reply #9 on: September 27, 2005, 04:48:42 pm »
Thanks peanut, I will discuss this issue with relevant specialists next time i see them.

cheers


Larry
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

wind6

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Re: Headaches
« Reply #10 on: September 28, 2005, 10:35:53 am »
Thanks for the info Peanut. I see my neurosurgeon again in late October. I will ask about this then however, the muscle relaxers are still doing a great job for me. I havent had even a slight headache since I began taking one tablet each night. That has been a wonderful relief as I was not able to even sleep through the pain beforehand.  ;D
2.5cm x 3.1cm facial nerve neuroma
removed 8-2-2005(retrosigmoid)
St.Johns Hospital-Springfield,Illinois
Dr.Michael McIlhany and Dr.Carol Bauer
Wait n' watch mode for 8 years.
Gamma Knife at Northwestern Memorial Hospital. Chicago,IL. Dr. James P. Chandler. July 10, 2013.

Peanut

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Re: Headaches
« Reply #11 on: September 29, 2005, 08:08:11 pm »
I'll be interested to learn what your October appointment yields.  Are you taking 10 mg of Flexoril each bedtime?  I am starting a course of acupuncture and also have worked up to taking 50mg of tramadol (Ultram) four times a day but still have felt no sure positive results from the tramadol.
Thanks for the input, Sherry.  If you show the ANA symposium Q&A on headaches to your neurosurgeon, please let us know the reaction or any added comments.
Peanut
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007

wind6

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Re: Headaches
« Reply #12 on: September 29, 2005, 09:04:25 pm »
Hiya Peanut, Yes it is 10mg's at bedtime. I am just a bit concerned tho about the dizziness. I think it may be a bit worse and I am not sure if its the Flexeril or what. So far I believe its an okay trade-off as long as the headaches are gone. :-\
2.5cm x 3.1cm facial nerve neuroma
removed 8-2-2005(retrosigmoid)
St.Johns Hospital-Springfield,Illinois
Dr.Michael McIlhany and Dr.Carol Bauer
Wait n' watch mode for 8 years.
Gamma Knife at Northwestern Memorial Hospital. Chicago,IL. Dr. James P. Chandler. July 10, 2013.

amn70

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Re: Headaches
« Reply #13 on: October 03, 2005, 02:09:45 pm »
To all of you out there experiencing headaches and head pain--I can sympathize with you and I hope you are taking care. I am nearly 9 months post-op and am having terrible pain. I had translab surgery (not supposed to experience severe headaches with this surgical approcah--WRONG) and thankfully, my neurosurgeon is willing to work with me on alternatives to counter the pain--I can only be on vicodin or other meds for so long. I already have had to cut back on my running as it bothers and jars my head too much. The pain runs along my incision and also slices into my head. I went to the ER three weeks ago as my doctor thought I was having an aneurism (I was experiencing the worst headache I ever had in my life and throbbing and pain behind my right eye and weakness in my right arm). The CT scan showed nothing and I was diagnosed with having a severe migraine. I thought I only had to "survive" the surgery and I was not prepared for this ongoing pain (I was told I was in the 1-3 percentile of people where severe headaches and pain may be a problem). I will not give up working out (strength training and lighter cardio) because the next thing I know, I will be obese and still dealing with pain. I will keep you posted about what my doctor and I decide upon but I can only hope I will find something. Take care all and thanks for listening!

clfsong

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Re: Headaches
« Reply #14 on: October 03, 2005, 05:15:10 pm »
Hi, I know how you are feeling...My neurosurgeon kept telling me I was having migraines.  The headaches started about a week after surgery and lasted 3 years.  They were not migraine.  They were cluster headaches.  My best response to you is.... if you are not seeing a neurologist, find one.  They can help you determine the type of headache you are having.  I had to do several things for mine, but mine were not migraine.  Mine were cluster headaches and tension headaches.  If you want information on how I dealt with them, take a look at my web page at http://hometown.aol.com/clfsong/page/MyAcousticNeuromaStory.htm

It may give you some ideas on where to start.  At least I hope so.  That's why I did the page.  I suffered pretty badly in the beginning, and I found out that I needed to be pro-active to solve the problem.  I wish you the best of luck, and feel free to contact me if you have any questions.  I'm always glad to help A.N. folks.  Must warn you though, don't check e-mail as much.  Please put AN in subject line so I know your from the forum.
Best of Luck, Cindy