Headache Description

[Kim Zingale]

Hi,

Could you guys describe your pre-op and post-op headaches to me? I haven't had many headaches in my life, so I'd like to get a better idea of the amount of pain and the location of the headaches that you get so I can be more prepared for what I could expect. Currently, I have been getting a headache around once per week, but I don't know if they're associated with the AN or just life in general/stress/eye strain.

Thanks,
Kim

[Captain Deb]

Kim,
My pre-op headaches were probably migraines, but I didn't know it and they were located in the back of my head and were throbbing in nature and then migrated to the eye socket on one side. I got them about once a month or so. Post op they were the same only multiply the pain by about 10 times and by 6 months I was having them daily. It took 3 1/2 years to find the right meds to control them.  Today I do pretty well on Neurontin, Topamax and limited activity.  I've mostly lost my career and am on full disability and medicare.

Please remember that most of us never develop these to this extent--I'm in the extreme minority.  I wish I had had a little more information--like folks with pre-existing migraine should look more carefully into radiosurgery.

Capt Deb

[lori67]

Kim, I had headaches for about 15 years before my diagnosis and haven't had one since.  Well, maybe a little one here and there, but I don't even count those.

My pre-op headaches always started behing my right eye - I always felt like my eye was going to pop right out from the pressure.  Then it would work it's way over my forehead and then it would start to hurt  on the right side of the back of my neck - up far where you can first start to feel bone and not just the muscle from your neck.  I was always told these were sinus related and I guess could have been perceived that way with the eye pressure, but I think the neck pain should have clued someone in that these were not sinus related.  They got pretty bad towards the last few months before my surgery and I had to take Alleve or Advil every day.

Fortunately though, I have not had a headache since surgery.  I realize I'm one of the lucky ones in that respect.  There are a lot of people here who didn't have them before and wound up with them after surgery.  Maybe if you could see if you could reduce the general stress (easier said than done) and the eye strain a bit, you'd have a better idea what the cause might be.  Good luck.

Lori

[Cheryl R]

I have been one of the lucky ones with no headaches in spite of 3 AN surgeries and 1 CSF leak.     Some achiness past one surgery that I did not consider a true headache and of short duration.   Pain meds took it away.    Also some neck pain post op which was of usually 2 weeks time and did sometimes need some work of heat,massage and pain meds and sleep positioning.         That can happen to alot of the surgical people due to how we lay and how long during the surgery.              Some people do end up with various other body aches for that reason.             
    That is what is so frustrating to that we can not tell ahead what we will end up with post op.
                                                Cheryl R

[Kim Zingale]

Thanks for your responses! I doubt my current headache is related to the AN, and I guess I'll just see where I end up post-op.

Kim

[Captain Deb]

"Headaches are present in 50-60% of patients at the time of diagnosis, but fewer than 10% of patients have headache as their presenting symptom. Headache appears to become more common as tumor size increases and is a prominent feature in patients who develop obstructive hydrocephalus associated with a very large tumor."

I stole this offa another thread in the watch and wait section.  I'm sick and tired of docs tellin us that ANs don't cause headaches!!!! When I went to my GP with headaches and hearing loss the first thing he said to me was--"we need to get you in for an MRI--you could have an acoustic neuroma."

Capt Deb

[Syl]

Hi Kim,

I'm one of those people who rarely got headaches, even with my AN. I had retrosig surgery in June. The headaches began about 3 weeks after that.

Initially, they confined themselves to my rignt side (AN side). The pain usually begins at the neck resulting from neck strain. So I watch what I put my neck through.

Now, the pain spreads to the entire head, but oddly enough, I find the AN side headaches more debilitating because those spread from the neck all along the right side to the temple, where I get a sharp and throbbing pain. Sometimes, the pain goes past the temple to the right eye. It feels like my eye will fall out of the socket from the pressure.

After my surgery, I was sent home from the hospital with a bottle of Tylenol with codiene, but have been able to get along with otc Tylenol. I do have to take 1000mg 3+4 times a day. If I don't take it right before I go to bed, I'm sure to wake up in the middle of the night with a headache (possibly from neck strain).

I've mentioned in another discussion that Tylenol and my heating pad are my new best friends because they have helped me manage my headaches. It's not very often that I get a headache that lasts more than 20-30 mins. As soon as I feel the pressure in my neck, I turn on my heating pad and apply heat to my neck.

I like to consider myself lucky because my headaches are manageable and haven't interfered with my job or activities when I'm out and about. They seem to occur most often when I'm at home.

I tried weaning myself off the Tylenol but found my neck straining more often and resulting in a headache.

Not everyone gets headaches after surgery, and hopefully you won't either. I wish you luck in making the best treatment choice for you. And, I hope this info is helpful.

Syl

[marjoryb]

I am one of the headache sufferers.  I had surgery in July, 2006.

My headaches were few and far between before surgery.   Now, I get a headache at least once a day.      The pain didn't start immediately after my surgery, but by 3 to 4 months post-op,  I was screaming in pain .  It felt like my head was going to explode and I walked around the house holding my head and moaning.  I still get headaches every day, but mostly at night  - they wake me from my sleep.   The day time headaches I can usually feel coming on - beginning with a tightening and tension in my neck.   If I pop my pills straight away, I can usually stop it from getting worse.   I have tried all sorts of medications, acupuncture, nerve blocks, etc. but I still have headaches.    I'm still waiting for some doctor to provide a miracle cure.

Marjoryb

[Syl]

Marjoryb,

I'm praying for that micracle cure, too.

Have you tried a heating pad on the neck? It rarely fails me.

What surgical approach did you have? What medication do you take for your headaches?

Syl

[wendysig]

Most of my headaches started behind my ear in what I now recognize as being my mastoid bone. From there they spread to the top of my head.   Probably my AN acting u p.  I had these headaches for at least a year and always attributed them to stress until I found out they were an AN symptom.

Wendy