AN Headache Case Histories

[lmurray69]

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

[Timjk]

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....

[Obita]

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

[Timjk]

Thank you,Kathy,that's one.... anyone else

[Obita]

Tim: 

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

[jlamborn]

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

[vcschaub]

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.

[Captain Deb]

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

[Timjk]

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

[Static]

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

[Palace]

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

[marjoryb]

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

[ppearl214]

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

[kkweiher]

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.