ANA Discussion Forum
Archive => Archives => Topic started by: Rayinpa37 on May 29, 2006, 09:15:13 am
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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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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!
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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
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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
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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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Hi Max -
Maybe look at the article on headaches and link in the ANA/NJ newsletter for April 2006, at www.ananj.org
d***
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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
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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
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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
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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
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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?
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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?
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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
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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).
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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.ÂÂ
My surgery (sub-occipital) was nearly 2 years ago.ÂÂ
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Staypoz--please let me know how the next procedure you have goes. I am already experiencing neck and head pain again and am a little frustrated at this point (not the end of the world but just wish the pain would subside already). Thank you.
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Does anyone have any information on this?
The Skull Base Institute (Dr Shahinian) is doing a procedure for Trigeminal Neuralgia which I think is a cousin of whatever we seem to have, but worse as it is triggered by eating or brushing teeth. Only TM involves the 5th cranial nerve which is larger. I think we have something similar going on with the 8th cranial nerve. (Entrapement or too close to a blood vessel?) Click on Trigeminal neuralgia and see if the description of pain sounds familiar, but in a different place. They also do AN surgery there. I wonder how they treat their post AN patients with headaches.
Here is a link for the Skull Base Institute.    http://www.skullbaseinstitute.com/ÂÂ
I looked at this site because someone sent me an article (both e-mail and hard copy) from the paper about a local woman with trigeminal neuralgia who had this procedure done there. It was titled, "The Miracle I was looking for". After 15 years she was pain free.
It sounds like some of us are getting some relief but nothing permanent or complete. I keep this article by my computer for a little hope and inspiration.
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Thanks Janet,
Jamie posted something on this a while back if my rotten memory is correct.
laz
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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
Hey Angela!
If you get a few pain free moments, would you participate in the post-treat headache case histories we're putting together? Trying to find a common thread to all our difficulties so we can pass info on to our health care providers. My own neuro has never treated anyone with post AN surgery headaches before, and I know I'm not alone.
Thanks
Hope you are doing OK
Capt Deb
Ca
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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
Hey Ray,
We are compiling some post AN surgica headachel case histories --would love to have your input
Thanks,
Capt Deb
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Capt Deb,
I would be happy to participate. You can e-mail me at amn70@yahoo.com
with information. I, too, hope you're hanging in there and I am grateful to everyone's support and input. Have a good day.
Angela
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amn70, I will keep you posted.
It was amazing to me how much the trigger point injections helped. You can get them with or without steroids. (I am getting them without, because apparently the steroid injections can break down your skin if you have them often enough.) There were so many knots in my neck that have just disappeared. The combination of the shots and the nerve blocks allowed me to reclaim at least a part of my life back, which is what I think we are all striving for among the various remedies available. What I don't know yet is how long-lasting the effects will be.
Hang in there and please continue to share your experience with the ablation.
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It seems that one of the advantages of a trigger point injection is that your won't get any stomach or fatigue side effects. Botox injections have the same advantage. They treat the problem locally and leave the rest of the body alone. Maybe Capt Deb could be better treated at a pain clinic?
For those wondering where to go for help,
Pain Clinics are more apt to give the trigger point injections because they are usually staffed with anesthesiologists and this is what they are skilled at and trained to do.
Headache clinics are more likely to treat with medication. This includes Botox injections into the muscle groups to relieve muscle tension. (Botox is not covered by most insurances for headaches, yet. I've read that it is approved for some neck conditions.)
Both places overlap on their treatments so this is a "in general" description. I worked in a hospital for 23 years (RN) and know that different specialties carry different types of malpractice insurance, so I suspect this plays into the different treatment approaches. (You need the training to be eligible for specialty coverage.)
It seems that there are so many variables as to which one works best. I am so happy to hear of people's experience with both places of treatment to help with figuring out where to go. I think it can be confusing as to where to go for help. It's like a medical maze.
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For those with chronic headaches. Here's an interesting site, where a Dentist (!?) has put togther a web based questionaire to diagnose headache problems. http://headachesearch.com/ I have no idea whether he knows what he's doing or not, but it may be entertaining or give you some ideas to talk with your doctor about.
Regards,
Rob
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I have had headaches both before and after my AN surgery and my gp doctor and my neurosurgeon both told me they are not an related. I have pressed the issue though, and was told to go to the headache clinic in the city, which i never did, but tried many different meds through another neurologist and nothing I tried was helping. I would eventually end up with rebound headaches from any pain meds and the other things, beta blockers, and meds like topomax (however they are classed) honestly never really helped me. I also have complained of constant, daily, headaches only to have it dismissed. Guess I should be pressing harder about. Just been dealing with it because messing around with different meds is sometimes more trouble than it's worth. I did find that an ice pack on my head helps immensely but I would look kinda weird walking around like that and it's not fun on your butt all the time cuz of headaches. So far I'm just dealing, time will tell.