ANA Discussion Forum
Archive => Archives => Topic started by: thecakes on April 08, 2006, 12:42:01 pm
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My heart goes out to all of you that have headaches, I hate pain myself, as I'm sure we all do. Reading these posts makes me think how lucky I am. I never had even a little headache since my operation, oct 02. No pain. Not even a second of pain. I did"nt get off on this with no complications at all, but I feel very lucky. Is there anyone out there with no headaches at all?
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I also head no headaches post surgery, tho I did have other problems. My daughter has frequent severe headaches due to non AN health condition. (Chiari type 1). I really feel for the Aner's with headaches, migraines, or other health conditions that result in headaches. I did hear on the news the other night that there is a new drug that shows promise for migraines. I'll look it up and see if I can copy the article.
Best to all
Chet
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Here's the article on the new drug for migraines Might be something to ask your doctor about.
Source of information www.komotv.com
Chet
New Treatment For Migraines
April 6, 2006
By KOMO Staff & News Services
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SAN DIEGO - Scientists meeting at the American Academy of Neurology annual conference in San Diego report that combining two pain medications already being sold can help banish headaches faster.
A new drug called Trexima Migraine combines the common medication Sumatriptan with Naproxen sodium into 1 tablet. This combination of drugs are the same as those found in the migraine drug called Imitrex and the over the counter painkiller Aleve.
Two new studies of almost 3,000 migraine patients finds that taking the Trexima gave more patients headache relief within 2 to 4 hours than taking either the Imitrex ingredient or a placebo pill alone.
Migraine expert Dr. Stephen Silberstein says hitting headaches with this double punch attacks the headache at multiple levels in the nervous system, producing faster pain relief.
The company says they expect Trexima to be FDA approved and available to consumers by the end of the year.
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Headaches was one of the things I worried I would get post-surgery. I didn't have them before and luckily don't have them now. One thing to be grateful for. The facial numbness and paralysis don't cause me any pain at least.
I feel for people who have the headaches. My husband had headaches every day, probably caused by arthritis in his neck. He finally found a drug that worked well for him and then it was taken off the market due to problems. Vioxx and Bextra.
Jean
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I too have not had post op headaches. I had enough preop to last for a while I guess! I also have enough post op problems without the headaches too.
I'm wondering if the headaches are more prevelant in mid fossa or translab vs retro or if there is a connection to the headaches based on type of closure methods. I had my skull piece replaced with titanium screws, no cement or mesh.
I do have major sympathy for those with headaches and continue to wave my magic bat wand to give you relief! :-*
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(http://image2.frappr.com/pix2/i/20060317/a/3/8/a38aae02c7f9501429a127d0e8276f5d0_mid.jpg)
No...no....no....er...ah..........er
No......this........... definitely................. hurts!
Ow....ow...ow!
Captain Deb ;D
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I've a question for Batty Princess and thecakes,and Jean which surgical approach was used? Was your tumor large. just figuring out what the four of us have in common besides no headaches.ÂÂ
I had a very large tumor, translab. There were outcomes, but headaches weren't one of them.
best to all
Chet
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I had a translab. My tumor was 3.5 cm, maybe larger. It was all wrapped up in the facial nerve. I thought that I had read somewhere that the translab approach was less likely to cause headaches.
Jean
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I had just about everything else happen :(   BUT no headaches :) The middle fossa approach was used and my tumor was 3.5 cm.
matti
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Chet I had retrosig
Which I thought I read somewhere had a higher incident rate of causing headaches. Not sure though.
Anyone else know?
Jean was translab
cakes what about you?
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Hi, I'll join in here. I had a small to medium growth and trans lab - chronic heradaches for 3.5 years now. No respite and haven't had a day of no headaches.
My assessment is that there are multiple reasons but one of them is the way we are sewn back up and cutting of the muscles. I guess the ent surgeons are mopre concerned about the growth that finesse re cutting etc.
Larry
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No headaches. Mouth and tongue nerves still healing.
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I am pleased to report that I have had no headaches since healing up from surgery. In fact, I haven't taken so much as an aspirin in over four months! And I had a monster of a growth at 5cm x 5cm. Never really had any bad headaches before surgery either - just equilibrium problems and left side deafness. Must be how the cards fall.
What's really bothering me now is the incessant ringing and roaring in my deaf ear. There seems to be a certain time of day when it's at its worst. Sometimes I can hear and feel the blood pullsing and whooshing on my left side. This has prompted me to constantly monitor my blood pressure with one of those "Omron" machines. So far, my numbers are normal for the most part. They'd better be! All the jogging I do every day! But that feeling of fullness and pulsing is very distressfull. Anyone else get that?
Paul
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2.5cm removed via retrosigmoid and very fortunate not to have any headaches. I also read that retrosigmoid has a slightly greater chance of post-op headache. But it was a risk I was willing to take for the slim to none chance of saving my hearing. No hearing in the AN ear, but no headaches or facial problems, so no regrets. I feel for those that deal with headaches.
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Hi Everyone,
I was one of the fortunate ones that did not get headaches after my sugery. I had a small AN and was removed by Middle Fossa approach. I do get headaches from the daily stresses in my life but not from the AN. I will keep all of you suffering with headaches in my prayers. Ann
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No headaches here too! .. I did get a small ones when I first got the BAHA, but I took out the BAHA and took an couple of asperin and it was gone .. I was almost 4 cm with Trans-Lab ..
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CrazyKat - yeeeeeeeeeeeeeeeesss - I get the horrendous screaming in my ear and the pulsating tinnitus in my deaf ear. The pulsing is just so distressing. It's my worst symptom by far, along with the extremely loud tinnitus i get , particularly in the early evenings. I find it so hard to cope with - I feel so ostrasized when i get - like i'm in my own world, where only I can hear that loud loud screaming in my ear. I look around at other people when I'm out, and still remain in disbelief that they can't hear it.....
Do you think maybe with the pulsating tinnitus - it gets worse when you lie flat and the blood rushes to your head? I have found that on the days that I get it, it's alot worse when i lie down.
Headaches - I had a 3.3cm - had translab approach - I get headaches, but always have so can't say if it's because of surgery. All the research I did and advice I got from various surgeons is that retrosygmoid carries a higher risk of headache.
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I had a 4+ cm tumor removed via translab nearly two years ago. I had "unexplainable" and random headaches before my tumor was removed (especially during pregnancy), and had some "head noise". Since the surgery, I have had no headaches and no noise or ringing in the ears. I am pregnant (5 months along) for the first time without the AN and have not had the horrible headaches with this one. I just assumed they were part of pregnancy for me...but maybe not.
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I had translab. I don't know the size of tommy,, the dr never said.
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SKT,
Sorry for not responding sooner. I had to hit the ground running this morning for an early afternoon gig.
In answer to your question, yes, it seems to be at its worst when I am at rest or laying down. It happened tonight after I came home. My left ear is screaming and buzzing at this very moment. I hope the damned thing isn't growing back!! My ENT says the incidence of regrowth of these things is very rare though. Last time I saw him I did ask about the tinnitus. I asked, "How can there be tinnitus in an ear without an
auditory nerve?" He replied that they "think" it may be the brain, sort of searching for the nerve, turning up the internal amplitude so to speak - if that makes any sense. So it would seem that are experiencing a common malady among A.N. victims.
Well, it's back to the hospital tomorrow morning for some more blood work and an upper endoscopy. The CrazyCat is receiving the second part of his 48 year "comb-out". Heeheeee!!!! My Third M.R.I. is scheduled for early May to check for regrowth.
Take care, Paul
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CrazyKat
Thanks for the post. I wouldn't wish this sort of crazy tinnitus on my worst enemy - but it's been so nice speaking with you. I've really not come across too many people on this site who have experienced the pulsatile tinnitus. That can get me really run down sometimes as it keeps me up for ages at night. Tonight my tinnitus was at its full screaming raging levels at my father in law's dinner. It can be at such an unwelcome friend.
Thanks for passing on your ENT's advice. Seems they just don't know. It does feel like a trauma signal from the brain I think. I had a full hearing ear, and one day my head woke up with no ear mechanism. It hasn't been happy since.....
Sofe
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Interesting..I had the pulsatile tinnitus before diagnosis when I'd lay down and was stressed. Nothing since sugery just a nice steady annoying hummmmmm.... I also now have tinnitus in my right ear since surgery and my new ent said it was probably due to brain trauma or from the skull being invaded during surgery. I'm hoping it settle downs!
I was wondering if those with translab got rid of their tinnitus but I guess not according to what you guys said. Was considering additional surgery to stop the noise and trade it in for a whoosh lol
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I really dont think surgery can get rid of the noise - they have no way of predicting which translab patients (or any surgical patients for that matter) will end up having tinnitus post surgery. If there was a surgical technique discovered to rectify tinnitus, there would be one very rich surgeon out there.....
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Thanks SKT, I was told the tinnitus would leave but there would be a whooshing type noise. Thought about trading in the old sound for the new but of course always worried I'm going to make it worse and now I'm adjusting...hate it but adjusting!
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CrazyKat - yeeeeeeeeeeeeeeeesss - I get the horrendous screaming in my ear and the pulsating tinnitus in my deaf ear. The pulsing is just so distressing. It's my worst symptom by far, along with the extremely loud tinnitus i get , particularly in the early evenings. I find it so hard to cope with - I feel so ostrasized when i get - like i'm in my own world, where only I can hear that loud loud screaming in my ear. I look around at other people when I'm out, and still remain in disbelief that they can't hear it.....
Do you think maybe with the pulsating tinnitus - it gets worse when you lie flat and the blood rushes to your head? I have found that on the days that I get it, it's alot worse when i lie down.
Headaches - I had a 3.3cm - had translab approach - I get headaches, but always have so can't say if it's because of surgery. All the research I did and advice I got from various surgeons is that retrosygmoid carries a higher risk of headache.
That "hearing" the blood pulse thru your head is indeed distressing, but it really gets alot better with time as your head heals. Changing positions used to really trigger it for me--sitting to standing, standing to lying down. After three years, I hardly get it at all, but it will kick in when I'm having a migraine. It will go away in a while, for the most part anyway!
Capt Deb
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Translab, no headaches. tumor 2 inches.
Denise
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Ahoy there Capt'n Deb! And thank you SKT......
Thank-you for your divination and prognostication regarding the pulsating tinnitus. I know what you say is true about this. I also feel that, although I'm in pretty good shape, I'm still in the healing phase after only six months. I was reading that Mark Ruffalo - the actor - disappeared for about a year before resuming work after his surgery.
Someone told me that Lou Grahm, the lead singer from the band, "Foreigner," has also been afflicted with an A.N. and received his treatment at Mass General in Boston, where I was treated. Not 100% sure if this is true or not but it has come from a pretty good source.
Had an upper endoscopy yesterday. It went well and was quite an experience. I was tranquilized like an animal on "Wild Kingdom". After spraying my throat with a numbing aerosol that stopped the gag reflex, they injected me with Demerol and a tranquilizer to put me down.
This, however, did not render me completely unconscious. I came to as they were plunging this black, tubular device down my gullet to widen the esophogeal sphincter. I was bucking like a roped calf before passing out again. This was almost as much fun as the companion colonoscopy I had in December!! Now it's time to have my "oil" checked (cholesteral) and a return head M.R.I.....
I'd also like to report that I had my first headache in over four months after this procedure yesterday; probably due to the drugs they gave me. The left side - leeward - , anterior part of the head and the left side of my face, behind the eye - just like the good ole' days recovering in the hospital. Nothing that three Advil couldn't snuff out though.
Speaking of eyes, did you know that neromas or schwanomas can grow on the optic nerves as well? I know of a woman who has had this condition. Good God!!!!
Paul
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I am happy to report that I still do not get headaches. At about 4 weeks post-op I started having horrible head pain that would wake me up everynight. My neuro put me on 1 tablet of Flexeril at bedtime and poooof...the head pain vanished and has not returned so far.
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Windy wench, you are lucky with the no headaches. I get so annoyed (can't really say what i think on this site) with my headaches. It is such a horrible burden. At times, I just want to squeeze my head off coz none of the drugs help me.
I must say though, given the other problems that other posters have had, apart from some vertigo, and the headaches, I'm ok.
It seems like this dreaded growth leaves a legacy of some sort to people.
Larry
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Windy wench, you are lucky with the no headaches. I get so annoyed (can't really say what i think on this site) with my headaches. It is such a horrible burden. At times, I just want to squeeze my head off coz none of the drugs help me.
I must say though, given the other problems that other posters have had, apart from some vertigo, and the headaches, I'm ok.
It seems like this dreaded growth leaves a legacy of some sort to people.
Larry
Laz,
My doc recommended Botox injections for my headaches, which weren't covered by my insurance, so I had to decline. Just as I sold a painting for huge bucks and said "yay, now I can Botox my head" they started to fade away--at least the daily ones. Have you talked to your doc about Botox in the head? Seems like they are so budensome to you that they may be a good option for you to try.
Capt Deb
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Paul/CrazyKat,
Lou Gramm was treated here at MGH? Proton or microsurgery? Wow! :) I had no clue he had an AN!
The headaches are what drove me to my MRI that found my AN. Primary had me on 100 mg Imitrex mixed with 50 mg Tramadol to help aleviate. 1 week post treatment, tinnitus has now migrated from minimal in left ear to a more constant in both ears. I know there is still swelling occuring from my CK treatment and headaches are tolerable right now (have had an occassional sharp head pain) but right now, I'm keeping in mind that it's too soon, post treatment, to really know. So, for now, I'm trying to be a good martyr, suck it up and give it a little time to see what happens.
Will monitor this thread to see what others are experiencing... and Laz... tell the headache fairy to sod off! :)
Phyl
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Headaches were not an issue for me before or after surgery but I did (on occasion) have unbearable neck pain. More like a dull ache than pain. They were unreal. Thank heaven it only happened a few times and has not happened at all for well over a year now. :D
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Yes Phyl, that is what I was told. I'm still searching the net for some affirmation that it did indeed occur. I was also informed that David Paich, the keyboardist and principle songwriter for the band "Toto", had also been afflicted with an A.N. Here again, I am not 100 % sure of this. I found out from my sister, who was told this by people in her church that know him personally. She had told me, back when I was receiving my treatment that he was going to call me for encouragement. He never did but I was thrilled nonetheless. David is a Christian as well.
Talk to you soon!
Paul
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thanks Paul for sharing that! :) I would love to see any kind of celebrity step forward with an AN diagnosis to help those of us with brain tumors, especially us rare 6%..... maybe I'll do a websearch/bio on them and see if I can find anything. I'm sorry you didn't get that phone call thrilled, nonetheless, that you are feeling ok. :)
Coffee!
Phyl