Pre surgery headaches, do an cause these?

[Maxine M]

Hi all,

This is a first for me, posting on the internet that is.  I don't even do facebook, but this headache (also a first for me) is making me try anything.  I was diagnosed, after having Bells Palsy, with an acoustic neuroma on my left, having also been diagnosed with a "thymoma" (tumour near the heart) in the same year.  The doctors say that the two tumours aren't related, so I guess I'm just extra lucky to have the two types, that or maybe modern medicine still has things to learn.

Which is why I'm writing on this forum.  Anything I can discover on the internet about AN's and headaches, seem to point towards them occurring post surgery, or in very large tumours.  The thing is, my latest MRI (about a year and a half ago), showed a stable 9mm (small) AN, and of course, I'm yet to have surgery.  Still, for the last two days, I've been suffering an awful neck and head ache.  The pain is constant, and can sometimes come in really sharp burst that nearly bring me to my knees.

The pain radiates up my neck to the back of my skull and sits mainly behind my left ear.  Any movement is painful, and at one point my jaw started feeling slightly stiff (maybe I was tensing it without knowing).  I understand that these headaches are likely caused from unrelated neck pain, and if I'm to believe the doctors, this is what it is, but Oh Boy, is it painful.  So much so, that I'd really like to hear from anyone else with an AN and similar headaches.

Max

[ANGuy]

Everybody gets headaches.  Everybody on this forum has an AN and headaches.  They have heartburn, back pain, and gray hair too.  You are going to find members of this forum who will attribute their headaches to their AN, that doesn't mean they are correct, or incorrect.

When I was first diagnosed, I had the same headaches start up as you are having.  I was never a headache person, a bottle of Tylenol would expire before I used it up.  What was causing my headaches was reading all of the horror stories about AN's on the computer all of the time.  My posture while reading about them would become terrible, my neck would tense up, my jaw and shoulders would be tense and my head would start pounding.  It's called STRESS.  The Drs. will tell you that an AN doesn't cause headaches because there is no mechanism for them to do so.  If you don't believe your Drs. , get new ones.

In the time since, I have become used to the idea of having and AN.  I just glance over this forum every day or so.  I DON'T spend my time reading all about AN's anymore and my Drs. told me to "stay off the internet" in the first place.  Yes, I did learn some things and in some ways it was helpful, but their admonition put things into perspective, there is a lot of "noise" on the internet that you can make yourself crazy with.  I no longer worry about my AN, and I know longer get headaches. 

It is my un-expert opinion that your headaches are caused by your WORRYING about your AN.  It is human to worry about such a thing and I am not trying to belittle you for worrying.  My point is that when the time comes that you are able to get past the worrying, you will probably find your headaches have gone away too.

[Echo]

Hi Maxine and welcome to the forum.

I was prone to migraine headaches 3 or 4 times per year when I was younger. As I got older they were replaced with tension headaches depending on my stress levels.  At 58 I was diagnosed with my AN.  I did extensive research during that first year and while I did not get a headache doing the research I sure did get an upset stomach. 

Roughly 9 months into my first year after being diagnosed I started waking up at night with what I call a "sick headache".  It would only happen when I slept on my back and it was unlike any headache I had ever had - it was a weird pressure feeling.  It would always be at the back of my head near the base of my skull where it meets my neck.  Rolling onto my side did nothing.  If I sat up in bed for 15 or 20 minutes it would go away. Almost as if the pressure in my head was changing.  Those headaches occurred frequently for several month prior to having Gamma Knife and for approximately 1 year after Gamma Knife.  I can still wake up at night with a "weird" sensation in my head if I sleep on my back, but I no longer have the intense discomfort I was having previously.  I discussed these headaches with my neurosurgeon.  He said he doubted the AN was causing them, but he didn't rule it out either. Personally I think there is some type of association.  You've had a lot of medical issues to deal with. Stress could very well be at the root of your headache, however, many people with AN's have headaches prior to and after treatment and I'm sure they are not all caused by stress - that's why there's a specific section on this forum for "Headaches". 

Cathie

   

[Maxine M]

Thank you both for replying, and so quickly.  I know it would be usual to worry over being diagnosed with an AN but although I did do a little research in the beginning, it's been about 5 years since I've done so.  I sort of have the idea of getting on with life and it really hasn't effected my life that much so far.

This headache is awful, and I had it in my head that it was caused by neck pain, my GO thought so too, but also suggested an MRI (costly)  just in case it was caused by AN.  Everything I read said that it wouldn't be the AN, given it was only small, so I wanted to know if anyone had experienced similar headaches (now affecting swallowing) with a smaller AN.  Given that it is now affecting my comfort in swallowing I'll get a CT scan when they open on Monday.

Thanks again though for taking the time to respond.  Max

[CHD63]

Hi Max .....

Since you seem to have some additional symptoms appearing since your last MRI a year and a half ago, in my opinion you need another MRI with contrast, not a CT scan to determine if your AN has suddenly decided to have a growth spurt.  Ideally another MRI with contrast in the same machine, at the same medical facility, read by the same radiologist or physician is the most accurate way to determine if growth of your AN is indeed the cause of these new symptoms.

Thoughts and prayers.

Clarice

[ANGuy]

Hi Max .....

Since you seem to have some additional symptoms appearing since your last MRI a year and a half ago, in my opinion you need another MRI with contrast, not a CT scan to determine if your AN has suddenly decided to have a growth spurt.  Ideally another MRI with contrast in the same machine, at the same medical facility, read by the same radiologist or physician is the most accurate way to determine if growth of your AN is indeed the cause of these new symptoms.

Thoughts and prayers.

Clarice

I agree.  For whatever reason, I mistakenly assumed that all of this AN stuff was new to you.  Since it isn't, then I agree that you should pursue the cause of the headaches, which in my un-educated opinion are not from a 9mm AN.

You should be getting an MRI on some kind of regular basis anyway, so that is something to consider.

[Maxine M]

Thanks again for your responses.  I've actually got an MRI booked for tonight, but I'm sure it will be unrelated.  Better to be safe than sorry.

Thanks all, Max

[ANGuy]

Wow! I was referring to an animal known for it's hardheadedness and I got censored! This board has some real uptight and self-righteous people on it. 

George Orwell must be looking down and laughing since he DID warn us.

[Gearbox123]

Hi Max, good luck with everything that you have going on. Having two conditions to worry about is tough and can certainly bring on stress. I got diagnosed with a small A.N  and a movement disorder called Dystonia of the trunk, so I can certainly understand having two issues. It is like hitting the lottery ticket with no money.   What I will say is, that my problems with pain started in my jaw ,and ear area which are all close by . Headaches too me are very regular along with the fullness and pressure. My A.N is small 5mm with growth and no growth in the last 4 yrs. Some people with small tumors seem to suffer a lot , it is once again the location and how much pressure is being put onto the nerve by the tumor. Stress can also be a culprit, and how does one manage it if one is in consistent pain. I am not a Doctor but the combination of pain and stress is a very difficult to resolve especially when having these issues. I can speak for my self that I have had days when I have had no stress and still had the headaches and days where I had a lot stress and my headaches might have been even worse. I would agree with the others about  the yearly MRI. I did not get mine this year waiting on getting my insurance straighten out with my Neurosurgeon so that I could get Gamma Knife Radiation. I will  wish you all the best and will pray for you and hope you get to the bottom of your problem.  All the best!

[Doc]

...I have a headache right now 

[michellef08]

I had regular headaches before my AN surgery. They weren't excruciating or even rose to the level of migraines, but I was taking Advil about 2-3 times a week, which I thought was totally normal! I thought everyone got that many headaches? However, since I had my AN removed almost 3 years ago, I now realize it was not normal and I very very rarely have them anymore! I never asked my doctor about them because as I mentioned, I didn't think it was a problem! So I'm not sure if it has any scientific background, but my headaches went away! My horrible motion sickness went away after my surgery as well, so maybe that was related to my headaches?