AN Post-treatment Headache Case Histories

[Captain Deb]

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

[Peanut]

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)

3years 2months (surgery April 2003)

2. If you had headaches pre-diagnosis

No, not like these

3. Surgical approach, facility and surgeons' names

Suboccipital/retrosigmoid  Massachusetts General Hospital, Boston   Barker and McKenna

4. Family history of headaches
No

5. When headaches started started post-treatment
 
within two months

6. What diagnostic tests you've had (MRI CT Spinal tap, etc)

MRIs

7. Description of headaches
 a. frequency

used to be daily, now several per week

 b. intensity and duration

from 2 to 7 on a scale of 0-10 (were 9.5 at one time) from 2hours to 2 days
 c. recognizable triggers

over tiredness, physical exertion

 d. location on head/neck

seems to be an inner earache on AN side, down neck, up head along scar always on AN side

8. what medications/treatment you've had

Celebrex, Neurontin and Amitripyline did not work for me (bad reactions); Vioxx seemed to be effective when I used it now use tramadol in preventive way, 200 mg. per day, and Feverfew, acetaminophen, and Hydrocodone as needed, also use hot pack on neck.Also have acupuncture (for head pain) and craniosacral therapy (treatments on head in hopes of reducing pain and helping post operative fluid sac to reabsorb)

9. Any "definitive diagnoses" you have gotten from a specialist

Definitive?  Are you kidding?  You jest.




 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!!!
                     
Yes, very slowly, think I am getting my life back, hope so, it's so gradual...
Capt Deb

[dally1932]

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)

     4 years post operative

2. If you had headaches pre-diagnosis

    No headaches/pain of this type prior to surgery

3. Surgical approach, facility and surgeons name

   Retrosigmoid Method, Dr. James Robinson-Piedmont Hospital/Atlanta, GA

4. Family history of headaches

   Nothing out of the ordinary

5. When headaches started started post-treatment

   Mine started the day after surgery and have not deminished. I think the term headaches understates the problem, I like the words "head pain" better

6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
   
   CT Scans, MRI (4 since surgery), CT scan of Temporal bone, Barium Swallow, Modified Barium Swallow

7. Description of headaches
   a. frequency
   
    DAILY   
   
   b. intensity and duration

  Pain most of the day and night from a stabbing "ice Pick" feeling to just a dull ache pain.
   
c. recognizable triggers

  No real triggers, other than fatigue intensifies it at times

   d. location on head/neck

Left side (AN) starting at above left ear, running up about three inches to the rear about 4-5 inches down the left side of the neck.

8. what medications/treatment you've had

Neurontin 4000 mg, Dilaudid, Purcocet, Vioxx, Fentanyl Patch, Tegretol, Topomax, Trazadone, Indomethacin, Darvocet,, Morphine SUL, Hydroxyz HCL, Hydromorphon, Dilantin,Lidoderm 5%, Patch, Verapamil, Lyrica, Prednisone, Depakote, Ketorlac, Amitriptylin, Accupuncture, TENS Unit, Nerve Block Injections,

9. Any "definitive diagnoses" you have gotten from a specialist

  Most of the Doctors are leaning toward "occipical nerve damage". I also have developed swallowing difficulty on the AN side that they are also leaning toward nerve damage. I have an appointment today with a different neurosurgeon who ordered the CT Scan of the temporal bone. I had asked him at the initial appointment about CFL. He said it was possible and ordered the CT Scan. The results of the scan show fluid in the mastoid air cells and minimal fluid in the mastoid area. It also shows "apparent dehiscense in the mastoid air cells adjacent to the crainiotomy". I will see what his interpretation is today.




 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

[Captain Deb]

Thanks Dally!  If you go to "profile" you will see a box titles "Modify profile"  Click on it and you can enter your tumor sizes etc where it says signature so we can have a frame of reference on you. What size was your tumor and where were you treated?
Sure hope things get better for you.  Sure hope things get better for all of us!
Capt Deb

[Janet]

Dally,

What treatments worked the best for you?  I noticed you have tried a wide range of things. I am really curious what your neurosurgeon will recommend based on you CT scan. Keep us posted. It sounds like you have found a neurosurgeon to take an interest in your headaches.  I hope you find some relief soon.

[dally1932]

I had the followup with the neurosurgeon on the ct scan of the temporal bone. He said when he read the report he felt he found part of the problem, seepage into the mastoid air cells, however opon closer exam of the CD disk I took of the actual exam, he doesn't feel it is a leak, but fluid that found its way in during surgery. He feels it has no relationship to my pain or drainage on the AN side. He sent me back to my primary care doctor. He gave me a shot of pain medication (I didn't get the name of it, only know it started with a "T"), he held me for a half hour to see if it worked, it did not. He prescribed a new medication called Migrazone 100 mg. I can take 1 per hour, but no more than 5 in a 12 hour period. After two days of being on them, I threw them across the room as they increased the pain to a more constant level. Back to the Percocet for now. Best to you all who read this post. He also asked me to take the ct scan to my ENT to determine if they felt it was causing a problem.

[cookiesecond]

Dally,
I sure hope you find some relief soon. You are in my thoughts and prayers.
Does the percocet give you any relief?
Take care,
Lynn

[Hillarie]

1. Treatment status( how many years/months post op)
   
    6 months post-op (12-5-05)

2. If you had headaches pre-diagnosis

    Sometimes - but not like this!!  Like Dally, I prefer the term "head pain" or even "migraine", 'cuz this ain't no simple "headache"!!

3. Surgical approach, facility and surgeons name

    Sub-occ, St. Vincent Hospital in Portland OR, Sean McMenomey and Dan Rohrer, MDs

4. Family history of headaches

    None to speak of

5. When headaches started started post-treatment

    About 2 months post-op

6. What diagnostic tests you've had (MRI CT Spinal tap, etc)

    Three MRIs, 1 CT scan

7. Description of headaches
   a. frequency

      1-2 per week

   b. intensity and duration

      Between 7 and 9.5 on a 10-scale.  They usually last 2 days.

   c. recognizable triggers

      Sensory overload - like when I'm at a party or restaurant with lots of noise & movement, and I'm trying to concentrate on a conversation

   d. location on head/neck

      Always begins on right (AN) side with ear pressure and pain; moves down scar to neck and shoulder, and up head along scar behind ear and over to forehead and eyes, until my entire head is exploding with massive, unrelenting pain.  Sometimes I get nauseated from it.

8. what medications/treatment you've had

     Medications:  Percocet, Lorazapam, Imitrex, Excedrin, Phenergan - Imitrex 100mg gives pretty good relief.  Treatments:  Lying down in a dark, quiet room with an ice pack over my eyes and another at the base of my skull works great in conjunction with a pain reliever.

9. Any "definitive diagnoses" you have gotten from a specialist

    All my neuro-ENT said it that is common to have post-op migraines.

[Hillarie]

PS - thanks so much for this headache discussion - I am relieved to know that I am not alone in my suffering.  Okay...that sounded bad - but you know what I mean, right?!?   

[tc]

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)
10 months

2. If you had headaches pre-diagnosis
 occasional migraines and the headaches that cause me to be diagnosed, but not as painful as the continuous one I have had since 6 weeks postop

3. Surgical approach, facility and surgeons name

Sub Oc. Eastern Idaho Regional Medical Center

4. Family history of headaches
Migraines

5. When headaches started started post-treatment
6 weeks post op

6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRI

7. Description of headaches
   a. frequency Continual
   b. intensity and duration more intense at night, lasting about 2 hours each night
   c. recognizable triggers
pressure to incision site, loud noises
   d. location on head/neck
back of head (incision site, radiating to ear, and occasionally to face and neck
8. what medications/treatment you've had
Lyrica, Trileptal, multiple muscle relaxants, neurotin, multiple types of pain medication, relaxation/biofeedback, physical therapy to neck muscles
Indocin and Hyrdocodone seem to work the best, and make the headaches tolerable and at times am pain free, I have been on this treatment for the past two weeks (Thanks Capt Deb!)

9. Any "definitive diagnoses" you have gotten from a specialist
None




 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

[Brendalu]

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) 1 year, 12 days

2. If you had headaches pre-diagnosis normal stress headaches

3. Surgical approach, facility and surgeons name  Translab, ClearLake Medical Center, Webster, Texas

4. Family history of headaches   just normal stuff

5. When headaches started started post-treatment   as soon as the morphine wore off

6. What diagnostic tests you've had (MRI CT Spinal tap, etc) MRI, CT, MRI contrast, EEG

7. Description of headaches
   a. frequency              almost daily
   b. intensity and duration  lasts for many hours  starts out as a throb, graduates to feeling like my head is in a vice and then throbs more and eventually, as long as I am quite and non mobile it moves to a dull ache
   c. recognizable triggers everything seems to trigger the "It"  Having my head in one position make It come on more quickly
   d. location on head/neck  Starts by my incision, moves along the ocipital bone and then up al pretty much engulfts my head and neck.
 
8. what medications/treatment you've had  relaxation techniques, barium swallow, a night guard for my TMJ (I didn't have that previously either) ibprophin (800's) Vicoden (made it worse) Narproxin,

9. Any "definitive diagnoses" you have gotten from a specialist  Sterss, TMJ  not anything that helps.  Neurologist was so excited I wasn't having seizures that she forgot about the headaches and all of the gliomas near my central nervous system!

Deb, I am the first post AN my neurologist has ever seen, also.  How can we find neurologists who have worked with AN Wonkyheads?




 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

[Janet]

As headache neurologists and pain clinics become more popular, odds are that you will find more experience with post AN headaches there. I know that I am not the only AN headache patient where I go. The first general neurologist that I went to was so obviously unfamiliar with post AN headaches that he even suggested a referral to someone that specializes in headache treatment. The first time I went to the headache neurologist, she said that AN headaches are known for being difficult to treat and knew exactly what I was talking about.

[Brendalu]

Janet,
I will ask for a referral.  Thanks for the advice.
Brenda

[Captain Deb]

Brendalu--after 3 years, I'm seeing a little progress with my headaches. My new Headache Wizard is treating them like cluster headaches (google them or visit www.clusterheadaches.com) and has me om 1800mg of Neurontin and I'm giving myself Imitrex shots of 1 1/2 to 2g. The shots work WAY better than the pills and come in an auto inject pen.  My doc has me giving them to myself manually at a lower dose than the auto inject so I can take them more often. I've also had a series of trigger point injections, which have helped--it's all on a thread called Capt Deb visits the Headache Wizard in General Discussion. See a headache specialist at a headache clinic if you can--wish I'd gone that route at 6 months instead of suffering for 3 years! Duh!
Capt Deb

[Boppie]

Deborah, I'd like to help on this forum if I could.  In this case, I just score a zero.  I can count on one hand the number of very slight headaches I've had post op.  Post translab I am not noticing headaches.  Not taking decongestants.  Not having ear pain.

I had a few headaches pre op that lasted for a day.  Ibuprofen always took them away.  I have never taken presciptions for headaches.