Surgery Vs. Radiation and Headaches Caused by Tumor

[juliec]

I was diagnosed about 3 weeks ago with a small tumor (1cm x 1.3cm) they are calling an acoustic neuroma. The info on this site has been very helpful, but there's so much info to wade through. Hopefully this isn't a duplicate of a question already asked that I missed. I'm trying to decide between surgery and radiation, wait-and-see is not an option because I'm relatively young (45) and the location of the tumor, which is pressing against my brain stem slightly. Because of the location, I'm not sure if radiation is even an option for me. Does anyone know? I have a dr. appointment scheduled next week, but was hoping someone might have a similar situation and could tell if radiation was an option for them. 

Also, I've been reading that some people get headaches from this tumor, but my ENT dr. told me these don't cause headaches. Was my doctor wrong, or maybe it's the location of my tumor that caused him to say that? I'm just wondering because I've had headaches for years (about 25 years) but figured it was due to my car accident. The headaches have really increased in frequency the last couple of years and am wondering if maybe this is why.

Thanks for your help.

Julie C
Bloomington, MN

[Jim Scott]

Hi, Julie - and welcome, although I wish you didn't have a reason to join us.  Only a physician familiar with your case can tell with a medical certainty whether you're a candidate for irradiation or not but if an MRI showed an acoustic neuroma pressing on your brainstem - which is not good - it may well have grown too large to safely treat with radiation.  Many AN patients find themselves in that situation.  I was one of them.  Fortunately, with a partial resection of my large AN (4.5 cm) and then, radiation, my tumor was effectively vanquished.  I trust you'll have a similar outcome. 

Your headaches may not have anything to do with your AN, but, again, that is a question a licensed physician familiar with your medical history can answer better than I.  My uneducated guess is that your ENT is correct.   However, I'm just an uneducated former disc jockey and not really qualified to dispense medical opinions. so you can safely ignore me on this issue, if you wish. 

Jim

[Kaybo]

Julie~
HI!  I am not a Dr. either so I can't answer with any medical validity, but I can say that I have SEVERE headaches for years and then once the tumor was removed, I don't EVER have them.  Even the occasional headaches I have are usually linked to my girly cycle and are NOTHING compared to what I used to have.  Until I got on this site, I figured that it was that way for everyone!!

K   

[Larry]

Julie,

Unfortunately, you will get mixed mesages re headaches and AN's. In my case, I had my AN removed around 8 years ago via middle fossa surgery. The olnly symptom i had was a loss of hearing. I hardly ever had a headache in my life. Post surgery, I have had chronic headaches every day (most days tolerable). I am convinced that it was the "slap happy" approach to the surgery that caused my headaches. Its the cutting of the bones and the putting back together and all that "non technical" description.

I recently had radiation treatment coz it grew back and my headaches got worse for around a month but have settled back to what they were like pre radiation treatment now.

Everyone will have a different story - there are just too many variables like where the AN is growing, what its pressing on, what the surgeon does in your head (that no-one else would know), whether the machine delivering the radiation has been calibrated perfectly and isn't "off" by a margin outside the tolerance level.

Sorry that you won't be able to rely on our posts on this one as the results differ. For example, Middle Fossa surgery was a disaster for me but for others it has been great.

i think a lot depends on your surgeon or radiaologist whether you get quality treatment or not.


laz

[leapyrtwins]

Julie, welcome to the forum 

Generally ANs under 3 cms can be radiated, but it pretty much depends on the located on the tumor.  Make sure you consult with a doctor (or doctors) who perform both surgery and radiation.  Some doctors do both, but some only do one or the other - and they tend to have biases along the lines of what they personally do.

As for your question regarding headaches, my AN didn't cause headaches before or after my surgery.  However, as with all things AN, everyone is different.  Our experiences are unique from the symptoms we have prior to diagnosis to the outcomes we have post-op or post radiation.

If you haven't already, please contact the ANA and ask them for their informational literature - it's very well written, easy to understand, and will answer a lot of your questions.  We can answer your questions also 

Jan

[chocolatetruffle]

i had the same experience as kaybo - used to have these incredible headaches for years (about 2-3 times per month) and after my surgery, i don't really have them anymore (only about once every 4 months). not sure if the headaches were caused by the tumor but i sure don't miss the headaches 

[LOIS]

  Welcome Julie,

  My AN didn't start in the place they usually do so even though it was on the small side it was already pressing against my brain stem, which is one of the reasons I was not a candidate for radiation.  There were other reasons too which I wont go into right now.  I do have headaches from the surgery although they are easing up somewhat.  I also ended up with a complication of meningitis which I was told is the main reason for the headaches now.  The surgeon did get the whole tumor out and saved most of what was left of my hearing with retrosigmoid surgery.  And I haven't had any facial nerve problems although I still do have some balance, dizziness, and wonky head issues.  I had surgery almost 10 months ago and was told to expect the issues to last for a year.  But I'm not in the medical field either and that is just my experience.  Everybody's is different.  I think the hardest part is finding a physician that you are comfortable with.  In my case I did find one locally which I am very thankful for. 

Lois

[petittrv]

Julie,

I had headaches that were getting pretty frequent about six months before being diagnosed.  I have had very few since the surgery.  My tumor was larger and the doctors thought they may have been caused by the pooling of cereberal fluid on the top of my brain because of the restricted flow from the tumor.  I had a stiff neck also which was probably from the pressure on the brainstem.

I was in Iraq when the headaches started and I just figured I wasn't drinking enough water.  My hearing went out also on the AN side (became muffled) and I thought I may have gotten some sand wedged in the ear canal.  It wasn't until I got back and failed all my hearing tests that they did an MRI and found the tumor.

The headaches are gone now but there is still the possibility that I was just dehydrated (although I was working an "office" job that tour and really wasn't as exposed to the heat). 

Can't speak abot radiation vs surgery, I was only given the surgery option because of the location of the tumor against the brainstem.

So technically the tumor does not cause headaches but having a foreign object inside an already limited space area is going to cause some sort of discomfort - my non-medical opinion is that once you get it removed (however it goes) you'll see the headaches diminish as well.

Good Luck in all,
Rick

[epodjn]

I had some headaches before and have some headaches now but they are different. The headaches I have now are more of a head pain and I can tell you exactly whenI will get them bases on weather and health. Sneezing is the biggest problem for me. Dumb huh? But I have pretty bad allergies, and even with treatment I sneeze a lot and the change in head pressure causes the head pains. All is better with a couple ibuprofen though, they aren't bad at all.

[wendysig]

Hi Julie and welcome,

Sorry I am chiming in so late.  Although I am not a doctor and don't know for certain, since your AN is already pressing slightly against your brainstem, there is certainly a possibility that radiation may not be an option for you.  Location is one of the important determining factors in treatment.  I have heard of ANs that are actually pressing on the brainstem causing headaches( from patients not doctors), although they otherwise usually do not.  IN my case and in many others, I did have mild  to sharp pain behind my affected ear when my AN was inflammed,  which is not unusual at all.  I hope you get the answers you need soon to help you make an informed  decision regarding treatment.

Wendy

[CHD63]

Hi Julie .....

Somehow I missed your initial post ..... but I do want to add my Welcome and please do let us know how you are doing.

As you can read, the headache issue(s) are quite variable with each of us.  In my case, I had migraine-like headaches for many years, but they virtually stopped before my AN diagnosis.  One of my biggest fears pre-surgery was that it would cause them to come back.  Thankfully, they did not!

Clarice

[cheza]

Hi there,

I'm sorry to hear of your dilemma, choosing which route to take is never an easy decision and unfortunately its one that only you can decide.

Make sure you know all the facts, the pros and cons and which one will be better for you and your personal circumstances, if you have surgery you may need help when you go home for at least the first couple of months, I'm afraid I don't know what life is like after radiation because I had surgery. (No option for me)

As for the headaches, well I used to suffer from migraine when I was a teenager but they stopped when I was 15-16 I never had another one until about 4 months before I was diagnosed when I had headaches everyday and by the end of each week terrible migraine. Once the tumour had been removed I didn't have another headache, then suddenly around last October they started again, I have since found out that my residual tumour has started to grow again, coincidence......I don't think so, but as with you my consultant says they are unrelated, I'm not so convinced, after all he's never had an AN and going off most posts on headaches and facial/nerve pain I believe the minority who don't have them are the lucky ones.

Hope this has helped, hope you're ok.

Cheryl XxX 

[moe]

Hi Julie,
Belated welcome to the forum.
My tumor was also pressing against the brain stem, so surgery was the only option.
Let us know the outcome of your decision.
That is the hardest part, just figuring out which way to go
But we are here, would love to answer any questions, calm ANY fears, and remember, no question is a dumb question
Maureen

[Tumbleweed]

Hi, Julie:

Welcome to our forum. Others have already addressed the issues of headaches and candidacy for radiation treatments, so I'll talk about radiation vs surgery. Of course, radiation is not invasive (except very minimally so if you have GammaKnife (GK), due to the 3 screws that are used to secure a metal crown to your head during the procedure). For medium-size tumors in particular, I believe the general consensus is that there is a significantly greater risk of facial paralysis or numbness following surgery compared to with radiation; radiation poses negligible risk -- about 1% chance -- in that regard. With surgery, you run additional risks of cerebrospinal fluid leakage (draining down the Eustachian tube on the operated side and out the nose), hydroencephalitis, chronic headaches (roughly a 10 to 15% chance with retrosigmoid -- or behind-the-ear -- surgical approach), and (relatively rarely) cognitive and behavioral changes (presumably caused by prolonged anesthesia or the prolonged retraction of the cerebellum with some surgical approaches). Radiation virtually poses none of these risks, although some people report headaches after treatment.

Radiation doesn't remove a tumor, however, so you're stuck with a dead tumor in your head. In roughly 25% of cases, the tumor may shrink significantly. But that takes time. And in the meantime, the tumor may first swell to a larger size, putting more pressure on cranial nerves and possibly the brainstem, which may cause an increase in symptoms (although they almost always disappear within several months). Many people report having no side effects or only moderate fatigue after radiation, while others report having severe fatigue, vertigo or disequilibrium, increased tinnitus and partial (or in some cases, severe or total) hearing loss. Usually, the symptoms you might get after radiation are limited to only those you had before treatment, only worsened. Also, it's important to realize that  a tumor takes a couple years or more to die after being irradiated, during which time it is still doing its evil deeds.

If you find yourself leaning towards radiation, you should research GK and CK (CyberKnife) and traditional FSR (fractionated stereotactic radiation). They all differ in the homogeneity of radiation delivered, accuracy, and statistical results. My own bias is towards CK, as that's what I had. CK delivers the most homogeneous dose of radiation and offers a slightly better chance of hearing preservation compared to GK. GK and CK are the most accurate, thereby minimizing collateral damage of healthy tissues.

I hope that helps,
TW

[yoga52smh]

Hi Julie,

Just thought I’d chime in as well and say that I didn’t have headaches very often prior to surgery and I also only have them if I get too hot, and I’m not hydrated.  I never pursued going with radiology so I can’t speak to that.  My AN was 1.5 cm and I wanted it out.  I was 52 at the time.  Life is pretty great, there are those times ( I would say about once every few months) when I will get a headache but I take a Tylenol and all is good.

Check that the doctor has done many AN surgeries or radiotherapy’s, ask all your questions, and your decision will be made.  Best wishes for a great outcome either way and welcome to the forum.

Sue