Post-Treatment > Post-Treatment
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 8)
Peanut:
--- Quote from: Captain Deb on June 07, 2006, 09:24:43 am ---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!!!
          ÂÂ
Yes, very slowly, think I am getting my life back, hope so, it's so gradual...
Capt Deb 8)
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dally1932:
--- Quote from: Captain Deb on June 07, 2006, 09:24:43 am ---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.
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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 8)
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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.
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