Headaches pre/post surgery

[JHager]

Hi everyone,

I have reached that lovely point at which my AN is apparently starting to cause headaches where it is contacting my brainstem.  I wake up in the morning fine, but as soon as I start moving (5 - 10 minutes), I get a sharp pain that lances through the back of my skull.  Feels like someone jabs a big needle from one mastoid bone to the other.  This lasts only a moment, but results in a nasty ache that affects the back of my head, neck and shoulders.  Oddly, it lasts for about four hours, then slowly dissipates until I'm fine again my mid-afternoon.  Of course, it's at its worst right when I greet my first Physics class of the day.

My guess, and my father (who is a surgeon) is asking his colleagues about this, is that my CSF pressure rises briefly when I get out of bed, then balances out again.

Hopefully, my upcoming surgery will relieve this issue.  (I'm having translab on November 7.)

I know a lot of us have tumor-induced headaches before treatment.  Did that issue resolve itself afterwards?  (I realize, of course, I may get completely new types of headaches, but that's a future issue.)

Any advice/comment/experience would be appreciated.

Thanks!

Josh

[jamie]

I had morning earaches/headaches with mine as well. I read it's because carbon dioxide levels go up at night, and the the body swells a bit. I also had mastoid aches, that's from the pressure of the tumor in the CPA at the base of the skull. I found that if I took ibuprofen before I went to bed, it kept the swelling down at night and I woke up without the pain. Since my radiosurgery the aches and pains have greatly improved, I'm sure after surgery yours will too. Until then you may want to try and take ibuprofen before bed.

[JHager]

Jamie,

Thanks - a great (and obvious, now that you mention it) answer.  I'll give it a try.

Josh

[jw]

You know, this is interesting.  I used to have bad headaches in the morning.  I went for tests, and even to a neurologist who ordered a sleep apnea test.  End result, he said that I had sleep apnea and I started using a CPAP machine.  I'm wondering, since I'm suspected of having an AN, if part of this could be caused by AN?  The CPAP machine would keep the O2 levels higher at night and might solve some of the problems.  I used to be more fatigued through the day.  Perhaps it's two separate issues - sleep apnea and AN.  Perhaps AN makes the sleep apena worse?  If it impacts the brain stem, can it cause breathing problems at night?  Understand that I'm being hypothetical here - I'm just wondering if AN could make sleep apnea worse?  I guess the sleep test would not identify AN because it's not looking for anything like that, like hearing?  And I guess that a neurologist who specializes in sleep disorders wouldn't even consider AN.

I read it's because carbon dioxide levels go up at night, and the the body swells a bit.

[jamie]

Morning headaches are a classic symtpom of brain tumors, and if you do have an AN, it could very well have been the cause. The CPAP may be alleviating the swelling by keeping your oxygen levels high during sleep. You're right that a sleep study would not diagnose an AN, they're not even looking for that, just airway obstruction or breathing disturbances. For an AN to interfere with breathing, it would have to be severely pressing the brainstem, and would probably have to be very large. You would very likely be fully aware of an AN before it got that large. 

[Patti]

For years I woke up with severe headaches once in a while.  I would vomit and call in sick for work, go back to bed and be fine a couple of hours later.  Later, when this happened three times in 3 weeks, my friend (my chiropractor) told me to see my doctor and get an MRI.  There was a 4cm tumor and it was pressing on my brainstem.  Headaches and vomiting haven't happened since I had it removed 5 years ago.  Patti

[JHager]

Hey everyone,

Thanks for all the quick posts.  If there's one thing that I've found to be true in this AN journey, it's that someone has experienced the same symptoms you have. 

Thanks for sharing, and for the support.  Although we're seperated by many miles, it's nice to know I'm not going through this alone!

Josh

[northerndoll]

For years the only symptom I had that i had an AN was severe headaches.  Then the tinitus started.  It took me 6 yrs from onset of symptoms til I could finally get someone to do a CAT with dye. That is when they found the golf ball tumor on my brian stem. Initially post operatively I had a sore head...but amazingly no morning headache for the first time in years.  I am now exactly 6 yrs post op.  I occassionally get severe headaches that require hospitalization and the use of morphine IV.  Thank goodness they are less than once a yr.  On average i have a headache once or twice a month....I doubt this is much different then the general population.  Why do i get the severe headaches?  Various doctors have different opinions.  Some feel it may be due to weather changes, hormonal changes, or the most likely choice scar tissue at the operative site.
I must say I was traumatized by the whole expeirence. To this day I shudder when I see brain surgery on tv programs.  An interesting irony, I used to be a Critical Care RN.  Still, being diagnosed at 34 and being a single mom to a little boy was the hardest.  The only lingering issues I have, of course the most obvious, L sided deafness, very mild facial paralysis, and occassional vertigo when objects around me move quickly. Other than that I live a perfectly normal life. Have a new baby and feel better than i have in yrs.