Author Topic: Headaches...  (Read 9416 times)

Rayinpa37

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Headaches...
« on: May 29, 2006, 09:15:13 am »
I am 2+yrs past sub-occipital removal of a 2.1cm an that left me deaf on right side.. continue having headaches that they now are telling me are migraines.. well i didnt think migraines would last days and days.. but mine do.. they have tried several narcotics, now i have started medrin(midrin)  not sure spelling which is for migraines..

they take some of the pain awy.. but only lessen it.. withing 3-4 hrs taking it.. it is back.. they are single sided, throbbing, make me dizzy, nautious, put on the sunglasses in the clouds headaches.. from what i read they seem to be migraines..

no one acknowledes that they are side effect of the surgery.. any ideas on pain releif anyone has found.. so i can kick dr in the knee and get him moving on it...   any and all suggestions are welcome
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Ray Grace - age 40
Dunmore, Pa

1.9cm AN removed via Sub-Occipital Surgery
March 8th 2004
Dr. Robert Martuza, Massachusetts General Hospital
--Using CROS Hearing Aids

Battyp

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Re: Headaches...
« Reply #1 on: May 29, 2006, 11:48:14 am »
Migraines are a definite side affect of surgery..higher with suboccipital surgeries from what I've read.  I had migraines before sugery and used zomig with lots of success.  Yes, they can last for days!  The can make your life a living hell!  There are many on here who suffer from migraines since sugery.  I'm sure they'll be along shortly to give you some pointers!

Raydean

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Re: Headaches...
« Reply #2 on: May 29, 2006, 01:34:32 pm »
Flurbiprofen
In 2001, we heard from a couple of patients troubled by severe and chronic headaches post-surgery. They both came across a medication that helped them very much. The medicine is called Flurbiprofen. One patient reports that the drug was originally an arthritis medication. it's an older drug.
I'n not a doctor but this drug may help also.

Raydean

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

Captain Deb

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Re: Headaches...
« Reply #3 on: May 29, 2006, 04:12:00 pm »
I am strugging with the same thing and have been given a tentative diagnosis of "hemicrania continua"  See the thread of the same name in General Discussion. I feel like I have been misdiagnosed for about 3 years! Along with the headache I get, eye tearing, a runny nose, sweating and extreme agitaion in addition to the classic migraine symptoms. The current common migraine meds have never worked for me except for Zomig nasal spray--which actually let me down the last time I used it.  I did have a sample of Imitrex injectable, which I used a couple days ago, with a bit of success.  Read a British medical journal called Transgeminal Autonomic Cephalgias by Peter J Goadsby--I don't have a link, you'll hafta Google it. You could be having TAC's, a name that encompasses a group of several kinds of headache, which mimic migraines in a lot of their symptoms.
Another AN surgical patient, Janet was diagnosed with Hemicrania Continua (a form of TAC) and has gotten a lot of relief with a drug called Indomethacine. I'm on it now and I think it's working, but I get a headache when it wears off in the AM.

Good Luck
Capt Deb
"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

Rayinpa37

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Re: Headaches...
« Reply #4 on: May 29, 2006, 09:04:20 pm »
was reading what capt deb posted about see link..

http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm

OMG this is perfect description of what goes on.. Constant headaches that are rollercoaster like.. rising and falling in intensity.. dr only just said maybe they are migraines.. i am calling in the morning with this diagnosis.
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Ray Grace - age 40
Dunmore, Pa

1.9cm AN removed via Sub-Occipital Surgery
March 8th 2004
Dr. Robert Martuza, Massachusetts General Hospital
--Using CROS Hearing Aids

rjbarker

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Re: Headaches...
« Reply #5 on: May 31, 2006, 07:52:48 am »
Hi Max -
   Maybe look at the article on headaches and link in the ANA/NJ newsletter for April 2006, at www.ananj.org

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Larry

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Re: Headaches...
« Reply #6 on: May 31, 2006, 05:12:05 pm »
As a chronic sufferer myself, having tried virtually all anti inflamatories, cortizone in the head, accupuncture, and kicking the cat! -(don't have a cat but it sounds good!), I am convinced that the headaches are a direct result of one thing - the surgery. The way the head is cut open, pulled about, the muscles cut, the scalp put back together etc.

My view is that we engage these surgeons who know all about the growth and how to dig it out but when it comes to the cutting, prodding etc, well, puit it this way, if your car is in an accident and the body and motor are wrecked, you send it to to different specialists - a panel beater and a mechanic. With AN's we use a "mechanic" for both jobs. Kinda like my daughters car - it needed a quick and nasty bit of rust removal and re paint to get it back on the road. the mechanic did a quick and nasty job - ok, it passed its test and is on the road but it doesn't look like a 100% job.

Personally, I don't think I'll ever get rid of these headaches, apart from the odd bit of short term relief. Sorry, but I have lost faith in the available meds.


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

rntiggergirl

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Re: Headaches...
« Reply #7 on: June 01, 2006, 02:40:44 am »
Hi
I had significant headaches after my middle fossa surgery.  I was diagnosed with facial/trigeminal neuralgia. I started on Neurontin and with in 2 weeks the nerve pain in my head and face almost completely disappeared.  Neurontin is a seizure medication. I take some getting used too.  At first it made me very fuzzy headed, kind of feeling like I was floating in the clouds.  However, after about 3 wks the symptoms slowly decreased, now I don't notice them at all and my nerve headaches are gone.  I have a CSF Leak which causes a completely different headache, but we are working on finding the leak so it can be fixed.
Cheryl

Kathleen_Mc

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Re: Headaches...
« Reply #8 on: June 01, 2006, 06:26:03 am »
Over the last 15 years I have been tried on various things, some aimed at relief of the headache when it comes and some at prevention. The relief one's provided very little. The one's that prevent worked but I was unable to tolerate the side effects......Inderal is one (anti-hypertensive orginal use....I have low blood pressure and it droped it below a functional level) but it did work, another was an anti-depressant Amitripyline (worked great, made me too dizzy). Just some suggestions for you to give to your doctor. Kathleen
« Last Edit: June 01, 2006, 05:29:50 pm by Kathleen_Mc »
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

amn70

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Re: Headaches...
« Reply #9 on: June 02, 2006, 12:10:16 pm »
Hi Ray,

I am in the same boat as you regarding suffering from severe post-operative headaches and severe pain alongside my head where the incision hooks around. I had a 1.5 cm AN removed in Jan. 2005 via translab method and also had FSR in Sept. 2001 (obviously failed, hence why I had to have surgery).

Luckily, my neurosurgeon has not dismissed my pain--I have gone through several types of medications (neurontin, cymbalta, three others that I cannot remember and now tramadol). The tramadol eases the pain briefly and then we moved to cervical medial injections into my head. One injection did not provide any relief and my neurosurgeon has now referred me to a pain management doc. I had two more cervical medial injections (one into the side of my head below my incision) and the second where doctors went in through my C2 & C3 vertebrae, injecting a concentrated doseage of steriod into the alleged nerves causing my pain (they took pictures of where they inserted the needles). This procedure gave me a very brief respite from my pain (does not get rid of headaches though--only the pain alongside my incision). It was after this that I agreed to have radiofrequency ablation--a procedure that I would not recommend to the faint of heart (painful!!!!).  They go into the same area (c2 & c3 vertebrae) but this time with a probe connected to the needle. The probe produces very high heat and BURNS the alleged nerves causing the pain (docs used the pictures from my previous procedure to pinpoint exactly which nerves they injected). Obviously there are risks involved with this procedure (I had to be awake the entire time as to monitor sensory and motor functions). I am fairing okay with the side of my head feeling relief but the headaches persist (that is what we will tackle next). I will keep you posted and all the best!

Angela

staypoz

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Re: Headaches...
« Reply #10 on: June 02, 2006, 02:29:54 pm »
Angela, it sounds as if you and I had something similar.  I had a c2 dorsal root ganglion block where they inject steroids and use a fluoroscope to do it.  I got some significant relief from that. 

How long ago did you have the ablation?  Is the hope that this will be a permanent fix for that pain?

amn70

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Re: Headaches...
« Reply #11 on: June 02, 2006, 02:50:58 pm »
Staypoz--I just had the ablation done this past Tuesday (May 30). From what I understand, this type of procedure can yield relief anywhere from 9 months to a year (maybe even a shorter duration of time). I have a f/u visit on June 19 so I'll learn more then about how/when/if we'll proceed with future treatments or other options. How are you doing and how along did you have surgery?

Janet

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Re: Headaches...
« Reply #12 on: June 05, 2006, 12:09:53 am »
I just wanted to point out some general differences between Pain Clinics and Headache Clinics because I noticed both terms used regarding headache treatment on this site.

Pain clinics or centers treat a wide variety of pain. The doctors are usually anesthesiologists. Pain centers associated with hospitals are usually a department of there own and treat anything from sport injuries to headaches.

Headache clinics are usually under the neurology or neuroscience departments. The doctors are neurologists that specialize in headache research and treatment.

Both headache and pain clinics treat headaches but their approaches can be different. (It is a little like the differences between surgery and radiation with AN patients.)  This is how the departments are set up in the hospital that I go to. I randomly looked at some of the university web sites around the US and found that most of them were similar. Not all have both departments. You might need to find out if they are neurologists, anesthesiologists, or another type of doc.

Janet

Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

amn70

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Re: Headaches...
« Reply #13 on: June 05, 2006, 07:57:59 am »
Just to note, I am seeing an anesthesiologist. He is part of the pain management division of the hospital where I had my neurosurgery (my neurosurgeon referred me to this individual).

staypoz

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Re: Headaches...
« Reply #14 on: June 05, 2006, 12:39:21 pm »
amn70, I got some relief with a combination nerve block and series of trigger point injections (non-steroidal).  I still had head and neck pain, but I went weeks without a brainwreck, and the other pain wasn't so severe.  And I am also seeing an anesthesiologist at a pain clinic.  I am going back for another round and waiting to have my full induction hypnotherapy session soon. 

My surgery (sub-occipital) was nearly 2 years ago.ÂÂ