ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Captain Deb on June 04, 2006, 10:37:12 am
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
2. If you had headaches pre-diagnosis
3. Surgical approach, facility and surgeons name
4. Family history of headaches
5. When headaches started started post-treatment
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
7. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers
  d. location on head/neck
8. what medications/treatment you've had
9. Any "definitive diagnoses" you have gotten from a specialist
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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great list, oh Pirate Wenchy one! I'm meeting with my primary care physician this Wed... she's been handling all of my pain mgt and such just prior to my treatment and will now take back that task now that I'm post treatment. This WILL come with me Wed. Thanks hun! :)
xo
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Great idea. I think the fact that I have had 3 different diagnoses from board-certified specialists speaks volumes.ÂÂ
1. 1 year, 11 months post-op
2. No history of headaches pre-op
3. Suboccipital craniotomy and "fat pack" for CSF leak from ear; John Hopkins, Dr. Rafael Tamargo
4. No history of headaches
5. Two weeks post-op
6. MRIs, x-rays, blocks to determine origin of pain
7. Daily overall head pain, daily neck spasms, frequent severe head pain emanating from incision site and severe neck spasms, all pain sometimes accompanied by nausea, sometimes pain referred to forehead, sometimes pain in ear, kept diary and could not identify any triggers except exertion, including standing up!
8. Daily OTC NSAID; botox, triggger point injections, accupuncture, nerve blocks, physical therapy, massage, reiki, and scheduled for hypnotherapy
9. occipital neuralgia, chronic daily headache, torticollis
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Ok, Pirate Wench.. here are my answers:
1. Treatment status( how many years/months post op)
2 mos post Radio-surgery (Cyberknife)
2. If you had headaches pre-diagnosis
Yes, migraines, usually attributed to "time 'o month" although noted primarily in occipital region (also note Chiari 1 Malformation, for which the headaches will also occur)
4. Surgical approach, facility and surgeons name
Neurosurgeon: Peter Black/Elizabeth Claus - Brigham Woman's Hospital Boston
Cyberknife, Beth Israel Hosp, Boston
5. Family history of headaches
typical migraines with siblings due to time o' month. One sister with massive headaches, diagonosed Aug 1969 with childhood astrocytoma (malignant brain tumor). Passed away Dec 1969
6. When headaches started started post-treatment
too soon into "post treat" now to answer sufficiently
7. What diagnostic tests you've had (MRI CT Spinal tap, etc)
numerous MRI's
8. Description of headaches
  a. frequency - now daily
  b. intensity and duration - some "sharp" pain in left ear (AN side). Otherwise, overall "rated 6-7 on pain scale"
  c. recognizable triggers - no triggers recognized at this time
  d. location on head/neck - left ear, but primarily in occipital area
9. what medications/treatment you've had
Imitrex 100 mg, Tramadol (50 mg), also told to take both together.
10. Any "definitive diagnoses" you have gotten from a specialist
None other than the AN and Chiari 1 Malformation.
Deb, not sure if this helps since I'm not micro-surgical, but.. hey.... worth a shot! :)
xoxo
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1. Treatment status( how many years/months post op)
2. If you had headaches pre-diagnosis
4. Surgical approach, facility and surgeons name
5. Family history of headaches
6. When headaches started started post-treatment
7. What diagnostic tests you've had (MRI CT Spinal tap, etc)
8. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers
  d. location on head/neck
9. what medications/treatment you've had
10. Any "definitive diagnoses" you have gotten from a specialist
Wow, staypoz, you are my clone!
1.  3 years 6 months
2.  Occaisional migraine-like occipital headache pre-op nothing significant no nausea
3.OOPs! forgot the three--I'll edit later
4.  Middle- Fossa, HEI Drs. friedman and Hitselburger
5.Mom had migraines (she says--had a little subastance abuse problem so who knows!)
6. First brainwreck 10 days post-op--increasing frequency till 9 months post-op was in bed most of the time
7. MRI, CT both with contrast
8.I have exertion headaches that are a dull ache just about everytime I do anything strenouos, bit it has gotten better in the past year. About once a month I get a real brainwreck--shaking, crying,tearing, on pain scale definite 10--starts in the neck and crawls over to incision area and behind eye--ALWAYS on AN side. Escalates rather fast, but can emerge from a dull all-day exertion headache as well.  Sometimes I'll go thru cycles of having these every morning for a while. Triggers are bending over gardening or stretching canvas, picking up toddlers.For a while, low barometric pressure was getting me
9. Amytripteline, , Topamax, Inderal, Verapamil, Indomethacine(currently on this one, but ready to bail cuz of stomach problems) as preventatives
hydrocodone, fioricet, Imitrex injectable(works the best) Zomig inhalant, Maxalt, Imitrex pills, Relpax pills. The pills don't work, the Zomig works OK sometimes, but the Imitrex injection bailed me out on my last biggie when the Zomig failed on the one before it. I give everything ONE chance--don't work, move ON.
10. Nothing definite,but  cryptic CSF leak and hemicrania continua have been discussed
Thanks to all who participate in this  survey--takes a while, I know, but it may be worth the effort in bringing some relief to some of us!!
Capt Deb
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1. Treatment status /  2 years 2 months
2. If you had headaches pre-diagnosis / Migraines starting 10 years ago and increasing in frequency
3. Surgical approach, facility and surgeons name / Retrosigmoid with placement of 2 titanium mesh plates and 8 screws, Swedish
                                   Medical Center, Seattle, Dr Mangham and Dr Steege.
4. Family history of headaches / No
5. When headaches started started post-treatment / 2 weeks post op (when steroids stopped)
6. What diagnostic tests you've had (MRI CT Spinal tap, etc) / Indomethacin trial, neck X-ray.
7. Description of headaches
  a. frequency / Daily
  b. intensity and duration / Severe sharp electrical stabbing pain lasting 20-30 minutes and smaller versions all day, dull ache behind
                     right eye, involuntary tightning of neck muscles off and on all day.
  c. recognizable triggers /  Physical movement, lifting, bending over, alcohol, bright light, looking down.
  d. location on head/neck / Sharp pain in left occipital area. Dull ache behind left eye, Tension in neck and head extending down
                     left shoulder and arm. This is the opposite side from my surgery. My incision on the right always feels
                     slightly inflammed.
8. what medications/treatment you've had / Maxalt, Neurontin, Trileptal, Indomethacin and Botox.
9. Any "definitive diagnoses" you have gotten from a specialist / Hemicrania continua from a headache neurologist
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1. Treatment status( how many years/months post op)
Retrosigmoid Surgery 7/97, Surgery to repair CSF leak 12/97, One-Time Radiosurgery for regrowth 2/2000.
2. If you had headaches pre-diagnosis
Yes
3. Surgical approach, facility and surgeons name
Retrosigmoid, Thomasville, GA, LINAC Radiosurgery, Shands, Gainesville, FL
4. Family history of headaches
Yes
5. When headaches started started post-treatment
20 years before treatment, but worsened about a year prior to diagnosis.
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRI, CT, Spinal Tap, You Name It!!
7. Description of headaches
  a. frequency - pretty much daily
  b. intensity and duration - Usually wake up with HA and gets better after taking Exedrin. Once or twice a month I have a really bad one for about a day that nothing will help.
  c. recognizable triggers - barometric pressure changes, bright sunlight, perfumes, alcohol, hormonal changes
  d. location on head/neck - behind right eye (AN side)
8. what medications/treatment you've had
Neurontin, Topomax, Fiorinal, Imitrex (I don't even remember all of them) Exedrin is the only thing that helps at all.
9. Any "definitive diagnoses" you have gotten from a specialist
NO
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WOW this thread is sooo helpful and thanks to Janet for figuring ou the best way to post on it with the red type and all!
Capt Deb
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Hip bump to top, still fishin' for headache folks--gonna email this whole thread to my neuro.
Capt Deb
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1. Translab 2003 Sept 17th. (2 yrs, 7 months)
2. Yes, severe migraine's.
3. Translab, OU medical center. Sanders/white and two others.
4. No
5. slight headache's after a months, stronger headaches when returned to work. Full blown migraine's within four months, still get them, but a little less intense and seem to be easier to treat. IMO Noise induces my head pain. this noise can be as little as pots and pans or silverware clanking, have extremely hard time at work with all the industrial noises. IMO I am extremely sensitive to any noise.
6. Ct's, MRI,
7. Slight headache's daily, some start when sleeping, Noise intensifies my head pain and one to two a week turn into migraine's which put me to bed with no light or noise. Usually over the counter pills will resolve it in 8 to 24 hours.
8. Over the counter Tylenol usually works best for me with little stomach problems, but have gotten sick in my stomach before. also use Excedrin, Excedrin quick tabs, but usually have a headache hangover with them. have also tried GelStat Migraine Homeopathic drug with little success. Won't take anything stronger due to the possible side effects and reading the results they usually don't work anyway. Save them for when I just can not stand them anymore. Right now can control them with over the counter drugs with little risk of side effects (Tylenol).
 a. Pain starts in the eye's moves to the forehead then down my right side into my mouth and teeth. seldom have pain on my AN side.
 b. nerves that fire to the teeth and right eye and behind the eye seem to trigger my migraines.
 c. Migraines, occurrence once to twice a week, lasting from 8 hrs to 24 hours. bed ridding pain, any noise or light causes my head to really thump, teeth ache with heart beat along with forehead and right temple area and behind right eye. Can't lay on my side till migraine starts to subside. Tylenol ever 4 hours with ice bag treatments throughout the first 4 to 6 hours.
 d. AN side really buzzes during the migraine's. also even when I don't have migraine's any noise makes my an side buzz, riding in a car, TV over 4 bars (which is just over hearing volume), any sharp noises even small makes my an side ear buzz, (rush, ringing or what ever sound you call it) Rushing sound right now with no noise but typing.
9. No.
10. estimated time AN when undetected: Probably 13 years, suspect started in 1990 when I first started to have problem's passing annual hearing tests. Working around jet engines with afterburners not unusual to have some hearing problems.
11. Opinion on health: good IMO, from what I read better than most, but figure it is as good as it's going to get. Fight headaches daily and migraine's once or twice a week.
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Stll PHishin' for headache folks--see original poat for questionnaire!
Capt Deb
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still Phishin for headache folks and hopin this helps any noo-bees
Capt Deb
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Bump to top!
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Just thought I'd fish for more post AN surgery headache sufferers.
Capt Deb
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1. Treatment status( how many years/months post op)
Surgery 4/88, LP shunt 7/88, Regrowth monitored for 8 years, another surgery pending
2. If you had headaches pre-diagnosis
None
3. Surgical approach, facility and surgeons name
Suboccipital Retromastoid with steel plate and muscle flap, NYU, NY, Drs. Benjamin and Cohen
4. Family history of headaches
None
5. When headaches started started post-treatment
10 days after, when steroids were discontinued.
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRI, Spinal Tap,
7. Description of headaches
a. frequency - daily
b. intensity and duration - varies from day to day. Frequently wake up with a headache, accompanied by nausea and vomiting. Might get an hour or two of respite at night.
c. recognizable triggers - Length of sleep - no more than 7 hours a night for me, odors, perfumes, physical activity, head turning, bending
d. location on head/neck - behind right eye (AN side), the scar hurts and sends shooting pains all over the right side, deep inside the head on the AN side only
8. what medications/treatment you've had
Work: Aspirin, Indocin suppositories, acupuncture, massage, regular stretching as a preventive measure
9. Any "definitive diagnoses" you have gotten from a specialist
Cluster headaches, migraines, vascular headaches and "scar headaches". Was told by my neurologist: "Well, if you had an operation on your leg, the scar there would hurt. You had an operation on your head, so the scar there hurts"
Comments: my headaches lasted for 10 years post-surgery. The end of the headaches corresponded with the beginning of the regrowth (coincidence or maybe the tumor is somehow contributing to the brain's blood supply?). Currently headache free and trying to avoid headaches after the next surgery.
Eve
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1. Treatment status( how many years/months post op)2yrs
2. If you had headaches pre-diagnosis yes, I had the worst ones before i got diagnosis
4. Surgical approach, facility and surgeons name Trancelab nov 1 06
5. Family history of headaches, none
6. When headaches started started post-treatment i month before
7. What diagnostic tests you've had (MRI CT Spinal tap, etc) CT, xray.eeg,
8. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers........Lite's
  d. location on head/neck...Left front an side
9. what medications/treatment you've had antitripaline
10. Any "definitive diagnoses" you have gotten from a specialist miagrains
Wow, staypoz, you are my clone!
1.  3 years 6 months
2.  Occaisional migraine-like occipital headache pre-op nothing significant no nausea
3.OOPs! forgot the three--I'll edit later
4.  Middle- Fossa, HEI Drs. friedman and Hitselburger
5.Mom had migraines (she says--had a little subastance abuse problem so who knows!)
6. First brainwreck 10 days post-op--increasing frequency till 9 months post-op was in bed most of the time
7. MRI, CT both with contrast
8.I have exertion headaches that are a dull ache just about everytime I do anything strenouos, bit it has gotten better in the past year. About once a month I get a real brainwreck--shaking, crying,tearing, on pain scale definite 10--starts in the neck and crawls over to incision area and behind eye--ALWAYS on AN side. Escalates rather fast, but can emerge from a dull all-day exertion headache as well.  Sometimes I'll go thru cycles of having these every morning for a while. Triggers are bending over gardening or stretching canvas, picking up toddlers.For a while, low barometric pressure was getting me
9. Amytripteline, , Topamax, Inderal, Verapamil, Indomethacine(currently on this one, but ready to bail cuz of stomach problems) as preventatives
hydrocodone, fioricet, Imitrex injectable(works the best) Zomig inhalant, Maxalt, Imitrex pills, Relpax pills. The pills don't work, the Zomig works OK sometimes, but the Imitrex injection bailed me out on my last biggie when the Zomig failed on the one before it. I give everything ONE chance--don't work, move ON.
10. Nothing definite,but  cryptic CSF leak and hemicrania continua have been discussed
Thanks to all who participate in this  survey--takes a while, I know, but it may be worth the effort in bringing some relief to some of us!!
Capt Deb
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Hello all... I have sat here and read every post on this subject and noticed not ONE good post-op report involving headaches... My surgery is less that a month away. I know knowledge is power and I want to be as knowledgable as I can be prior to surgery. I have been headache-free my entire life which seems pretty incredible knowing now that I have a ping pong ball growing in my brain.
Am I supposed to believe from this subject topic that I am destined to suffer from daily headaches anywhere from mild to blinding for the rest of my life ???
Someone PLEASE give me some GOOD news to hang on to !!!!!!!!!
Don't get me wrong. I am not looking for sugar-coated answers, "Oh it will be OK"
I am looking for honest to God positive reports from anyone not suffering from years of post-op headaches....
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Good morning Tim:
I did not post on this thread last night because I did not and do not have headaches. Not one, even immediate post-op. I did get bad muscle spasms in my neck after I got home from the hospital. Dr. said they were from my neck being stretched in surgery for so long. Valium took care of those.
I am a translaber. Theory is that post-op headaches are better when the translab approach is used.
I really was suprised that you could have a hole drilled in your head and it didn't hurt.
Kathy
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Thank you,Kathy,that's one.... anyone else ???
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Tim:ÂÂ
I don't think Road Trip Dale had headaches either. He checks in monthly. I wanted you to have at least two of us so I am posting for him?????
Kathy
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Hi Tim, I'm almost one month post-op and don't have headaches either. I also had trans-lab. Mine was interesting because I had started to have a dull ache at the back of my head on my AN side almost daily a couple of weeks before my surgery. It is completely gone now. I am completely off the pain meds now, taking my last steroid today. Glad for that because sleeping will be back to normal now. Just wanted to reassure you.
Jean
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I am one year plus post op and have not had a problem with headaches. I have had the occasional "jolt" as the scar healed but headaches have not been an issue. I had middle fossa surgery at House with Drs Brackmann and Hitselberger.
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Tim, I started this thread in order to give people with post-op headaches something to identify with and a view of what others have done for relief. Post-op headaches beyond a few weeks or months are by no means the norm.
Capt Deb 8)
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Thank you ALL for relieving my mind on headaches.. All I could think was how in the world could I survive daily severe headaches... From what I was reading last night here it sounded like long term severe headaches are the "norm"... I will rest a little easier tonight... Thanks again..
Tim
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Deb,
For your survey, I also suffer from daily headaches and also did pre-op but they weren't as bad as now. I didn't do the whole survey thing because mine really doesn't differ from anything I already read. I will fill it out if it would help you tho, just let me know!
~Karen
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
6 weeks!
2. If you had headaches pre-diagnosis
Yes
3. Surgical approach, facility and surgeons name
4. Family history of headaches
Yes, <mother>
5. When headaches started started post-treatment
years
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRI
7. Description of headaches
a. frequency daily, lasting one full month, once
b. intensity and duration no throwing-up but, close <scale it a 10>
c. recognizable triggers slight headache can change quickly into a full-blown migraine within minutes. (eyes ache)
d. location on head/neck coming on slighty but, realize it is "going there!" Yes, I just got a heating pad for the neck.
8. what medications/treatment you've had
100 mg Imitrex
9. Any "definitive diagnoses" you have gotten from a specialist
*no, not from a specialist
10. What works best for you, icing, heat, ?
I use the iron disposable 8 hour neck wraps that heat up when you take them out of package. <btw, you can put
them in a sandwich back and into the freezer and they be good here they left off, for use; the remaining hours>
I bought a neck heating pad. I do have the gel headache ice pack in the freezer, as well as heat products.
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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1. Treatment status( how many years/months post op) - iI'm 6 months post-op. Surgery was 7/7/06
2. If you had headaches pre-diagnosis I had exertion ( when exercising ) headaches prior to surgery. I went for an MRI and that's when they discovered the AN.
3. Surgical approach, facility and surgeons name Left suboccipital craniectomy for resection of left AN with titanium plate . Johns Hopkins University Hospital. Dr. Rafael Tamargo
4. Family history of headaches - No
5. When headaches started started post-treatment - Immediately in ICU - treated with morphine. No headaches for approx. 1 month after surgery - then started with increasing intensity and frequency. I have dull headaches during the day. I wake up two to three times during the night with headaches. Onset of intense headaches is sudden with no warning signs.
6. What diagnostic tests you've had (MRI CT Spinal tap, etc) - MRI, CATScan
7. Description of headaches
a. frequency - daily
b. intensity and duration - range from very intense ( 10 to 12) on a scale of 1 to 10 to a dull ache. They usually last 1/2 hour to 1 1/2 hour and respond to medication but they recur during the day several times.
c. recognizable triggers - bending down, exertion,
d. location on head/neck- behind left eye (AN side), at left temple, across forehead
8. what medications/treatment you've had- oxycontin, advil, tylenol, gabapentin, verapamil (beta blocker), prednisone
9. Any "definitive diagnoses" you have gotten from a specialist - No
Marjoryb
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Hey Tim
Like you, the headaches get bad... I have had 2 neurosurgeons here tell me that the Chiari is the primary source of the headaches, not the AN.... I know you are prepping for the Chiari decompression surgery (as well as the AN surgery). Know I will be there with you in heart, soul, wishes and thoughts.... as one AN/Chiari patient and friend, to another.
Hang in there.
Phyl
Thank you ALL for relieving my mind on headaches.. All I could think was how in the world could I survive daily severe headaches... From what I was reading last night here it sounded like long term severe headaches are the "norm"... I will rest a little easier tonight... Thanks again..
Tim
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Thank you ALL for relieving my mind on headaches.. All I could think was how in the world could I survive daily severe headaches... From what I was reading last night here it sounded like long term severe headaches are the "norm"... I will rest a little easier tonight... Thanks again..
Tim
you had your surgery before me, do you have headaches? i am only about 3 weeks post op and am having some sharp pains that only last for seconds at a time.