ANA Discussion Forum
General Category => Inquiries => Topic started by: ppearl214 on November 06, 2007, 07:01:30 am
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Hi all,
I am posting this in this forum, instead of the Headache forum, for wider visibility in hopes that you all can help with this survey. This is open to all post-treatment patients (microsurgical and radio-treatments). This has been discussed (locally) recently and need to get a feel for if you all are running into this.
Survey questions:
1. Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?
2. If yes, what kind of AN treatment have you had and when did you have your treatment?
3. How long, post-treatment, did you experience these kinds of sharp head pains?
4. If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
You participation is appreciated.
In advance, thank you.
Phyl
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Head pain survey
1) No, except when I deal with certain types of people ;)
2) Radiosurgery
3) N/A
4) N/A
Mark
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1:no
2:microsurgical
3:n/a
4:n/a
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Phyl,
You may want to also ask "How Often".
1. Yes-- but only once
2. Microsurgery: retrosigmoid
3. about a year after treatment.
4. n/a
5. How often: only once
Regards,
Rob
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1: No
2: Mid fossa and later translab
3: NA
4: NA Cheryl R
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No
translab
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1. No
2. Translab
3. n/a
4. n/a
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Nope, no steak knives to the head. I had trans-lab and no issue with headaches to this point.
Lori
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1. Yes.
2. SubOccipital, 1999
3. Still have them.
4. Gosh, so many things. Had a few nerve blocks, do exercises, breathing/meditation etc.
ETA: I've used lots of drugs but to no real avail so far. gr. I've used anti-depressants and anti-seizure meds.
Triptans and ergots, oh my! ;)
Imitrex Sub-Cu is the best so far for the cracking-my-head-open pain.
Last week I used DHE in the hospital and that worked well after the 2nd day. (Five day mig.)
If I forgot anything, just ask! I'm an open book.... With a few pages missing. :D
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1. Yes
2. Retrosigmoid in 2004
3. Still get them
4. Drugs, nerve blocks, accupuncture, massage, hypnotherapy, physical therapy
staypoz
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No
Retrosigmoid 5/31/07
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thanks folks (and Mark, you're a nut! :) )
Looking for more inputs and please know it's truly appreciated.
thanks again,
Phyl
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1. Yes
2. Retrosigmoid 2004
3. Started 2 weeks post-op and on going
4. Referred to headache neurologist. Neurontin (not effective), Trileptol (not effective), Indomethacin (effetive), Maxalt (effective) Botox (effetive) Physical Therapy (not effective) biofeed back (not effective).
Janet
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1. yes
2.translab 2006
3.started 1 yr prior to surgery
4.tylenol 3's (not effective), referred to neurologist tegretol (not effective), topamax helping, something else along the line as imitrex if I get a breakthru migraine. Too long of a name, its in my purse.
You described the pain exactly the way I have to my drs.
Anne Marie
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No
GK July 2007
Dana
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1. No steak knives, but sharp sudden twinges behind AN ear
2. CK Sept 2005
3. At 17 months out - off & on for 2 days, none since
4. n/a
Adrienne
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1. Yes
2. suboccipital, 1/2005
3. 24/7 for 1 year tapering off to twice monthly
4. first 6 weeks - fioricet (developed rebound headaches), 800 mgs. ibuprofen (when finished with dr's. script I began buying from store) tapering off to now 200 (the usual dose x's 2) up to 800 over 12 hour period (for the occasional nasty one which can last three days)
By the way I was told these head aches are not AN related!!!!!! Was told "more likely neuralgia."
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No
Retrosigmoid 1/10/07
I was told that headaches (not all) after surgery can be caused by "bone dust"...has anyone ever heard of that before?
Funny thing is I had more head pain prior to surgery...
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Survey questions:
1. Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?
Yes.
2. If yes, what kind of AN treatment have you had and when did you have your treatment?
Retrosigmoid approach microsurgery 6/7/06 followed by 26 FSR treatments from 9/06 - 10/06
3. How long, post-treatment, did you experience these kinds of sharp head pains?
Approximately 9 months.
4. If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
No physician recommendations. He said the pain was normal healing. I took 4 Ibuprofen tablets (200 mg. each) per day at least 5 times per week to alleviate the pain. They were very effective. The stabbing pains and 'tightness' have now completely disappeared and I consider myself healed.
Jim
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1. Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?
once in a while but I do not describe them more like a head pin and it only last for a few seconds. My opinion of this is reconnecting of nerves or firing.
2. If yes, what kind of AN treatment have you had and when did you have your treatment?
March 28,2005
AN, left cerebellopontine angle, 1.5x1.1 cm in transverse & 9 mm in craniocaudal dimensions,microsurgical removal,Sean Mc Menomey MD @ Oregon Healthy Science University
3. How long, post-treatment, did you experience these kinds of sharp head pains?
I still do
4. If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
I don't
eve
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Nope, no head pains. Although others sometimes give me pains else were.
CK
NO
and NO
Sandy
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1. No
2. "Zapper" (Gamma Knife)....but to answer the question...N/A
3. N/A
4. N/A
Gary
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1) yes
2) microsurgery
3) few ( only after surgery)
4) none
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you all rawk (and Sandy, you have been SO missed! :-* ). Thank you all for sharing this with me.... it's giving me a good sampling (microsurgical vs. radio, etc)... and most appreciated. I shared these concerns with 2 of my drs as they are working these issues for me. More participation is appreciated so I can give them a good indicator that this may/may not be related to AN's treatments as a whole.
thank you all again,
Phyl
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It's a no for me on all issues, Phyl.
Sue in Vancouver
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1. Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?
Yes, I describe as Ice Pick Stabbing pain
2. If yes, what kind of AN treatment have you had and when did you have your treatment?
Retrosigmoid approach microsurgery 6/03/02
3. How long, post-treatment, did you experience these kinds of sharp head pains?
Still do, 5 1/2 years post surgery.
4. If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
a. Nerve Block Injections, relief was only a couple of days
b. Meditation, physical Therapy, TENS Unit, Accupunture (2) different doctors,
c. Neurontin 4000 mg daily, Topomax, Indomethacin, Maxalt, Percocet 10-650, plus another 30 medications tried. I have stuck with
Percocet for 3 years now along with other medication, nothing completely relieved the pain. Doctor wants me to go to Mayo or John
Hopkins for another opinion, recent MRI was normal.
Thanks!
Chuck
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1. Yes on occasion
2. Translab 6/28/07
3. started about 3 wks after surgery still get off and on.
4. I mentioned it to him but really didn't talk much about it because they don't last long and I just deal with it because I don't like taking medication unless there is no alternative.
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Does anyone ever take a short course of decadron 4mg 3xs a day for 3 days with a rapid taper if you are in the throws of a severe migraine/headache crisis?
Irene
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1. yes on occasion not often however did have the episode about 3 weeks ago off and on for about 2 days.
2. no treatment yet (will find out Monday 11/12 when CK is scheduled)
3. n/a
4. n/a
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Does anyone ever take a short course of decadron 4mg 3xs a day for 3 days with a rapid taper if you are in the throws of a severe migraine/headache crisis?
Irene
Hi Irene, I know of some that did take the occassion decadron well after treatment as occassionally needed but not many.
Thank you all for sharing this with me... this is most helpful and insightful......I appreciate everyone's inputs.
Phyl
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*bump*
Hi all, have any of you been officially diagnosed with "ice pick migraines"? That is the actual name of the type of migraine (Google and such will bring up the info) and wasn't sure if any of you have been diagnosed with them and if so, how have you been treated.
This type of migraines may be... again, key word is may, what we describe here in this thread. I'm trying to learn more about them.
Phyl
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1. Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?
Yes, but not that often
2. If yes, what kind of AN treatment have you had and when did you have your treatment?
suboccupital, January 2004
3. How long, post-treatment, did you experience these kinds of sharp head pains?
still get them but few and far between
4. If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
these pains don't last long enough that I've even mentioned them to a dr. I to take topamax for other more constant headache issues
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Hi Phhyll, 1. No 2. radio 3. n/a 4. n/a However, I want to add that I get visual (I forgot what they call them) migraines, you know the kind where you start losing your vision and you see this wierd "c" shape with triangles of black, orange and mirror like images and there is a center in all of this...but luckily I don't get the headache that can follow this. This was the "headache" that sent me to the ER and got my AN diagnosed. It's very wierd and very scarey. I had another one in July and called my neurologist at home because I was terrified that something was wrong. But he stayed on the phone with me and talked me through it until it went away which was a few short minutes, his voice was very reassuring. Do any of you have this? I hope I'm not confusing this thread for you Phyll. Holly
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I have these type of migraines but do not think it is AN related as they started 33 yrs ago during my first pregnancy. Even though I am a nurse I did not realize what was going on and it scared me also. I occ will get a little bit of a headache after them but not always. One just has to sit or lie down and wait it out for a half hr or so. I do not get them too often and think bright lights can be one of the triggers.
Cheryl R
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Yes, surgery, middle fossa, 11/05. They were fairly frequent (several times a day) for first six months. They have tapered off and now I get one maybe, once or twice a week. They make me wince!! I never reported to my doctors.
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Oy vey, where do I start?
Yes, sharp stabbing ice pick pains in 3 places, occipital left-side, incision area just above ear, and above left eyeball. Mostly I would wake up with them. Started 3-4 months after middle fossa surgery for left AN, although I began having some migraines at 10 days post-op. Continued unabated for 2 1/2 years. Many different unsuccessful meds including narcotics, which like Arushi, gave me rebound headaches. I finally found a great doc at 3 years who did nerve blocks and corisonse injections, prescribed large doses of Neurontin and taught me to manually inject Imitrex. Now I'm on Topamax after talking to Dr Silberstein at the ANA Symposium in Philly in July. Much better now, ice-picks are not as frequent and are more aches than stabbing pains like before.
More like this!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/stressed_man_clamp_md_clr.gif)
Best of luck dear phyll and hope this is just a temporary thing for you.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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HI everyone
1 I do experience some sharp ice pick pains very occasionally . They are very brief but intense .
2 I have not had any treatment for them due to the very occasional nature.
3 I must add that I had them propably for 3-4 years before my AN diagnosis and after my treatment there has not been any increase .
4 I have mentioned them to my GP but he just thinks that they are just one of those things and apparently he gets them sometimes as well . A good friend of mine does get them too and being a hypochondriac he has had several scans showing nothing that could be the cause of them .
Regards Kat
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Yes, all the time. But more frequently the heartbeat in the head and neck tightening. Always in pain!!!
Translab 8/13/07
Started 8/30/07 and hasn't stopped
Fired original neuro for telling me to see a shrink!!! New neuro prescribed neurontin and imitrex sub-cu inj. along with ibuprofen. Makes the headaches tolerable.
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My headaches are like Captain Debs. I woke up from surgery with a sharp ice pick stabbing pain that never went away for a year. I finally found a pain management doctor who controlled my pain. My body was so weak I was finally told that my 5th nerve trigeminal had been severed. >:(
1 Yes experience sharp ice pick pain. INTENSE sharp pain behind eye, going into my right side of my temple and upper head.
2. Translab 1-10-06 Gammaknike 9-29-06
3 Woke up after 14 hour surgery with sharp painful headache thats all I could think about
4 Have been on Many different TOPAMAX 400MG, DILUDID 2X 4M. OXY 20MG 3-4X . along with my Effexorr 300 for never returning to work again due to the extreme headaches.
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1. yes,only once but I get brain spasms not quite as intense.
2. FSR 26 treatments nov-dec 2005
3. happened 20 months after
4. never mentioned the sharp pain to a doc
mema