Headaches before surgery? Newbie

[Shah_jl]

Hi All! I was diagnosed with a 14mm AN in Dec 2016. I have minimal side affects. Although my hearing is just about perfect right now, I was told that my tumor has extended into my fundus which makes hearing preservation unlikely. So I'm on a watch and wait. I was diagnosed by MRI after being referred to a Neurologist due to my frequent headaches. They said headaches are unrelated and that it was an incidental finding. But has yet to give me another answer for my headaches. I have occasional ringing in my ear, and mildly off balance at times. My biggest complaints are headache and fatigue, but I was told due to my AN being small, it's not the cause. I'm so confused. I am in Michigan and have consulted 3 doctors. The first told me watch and wait. If it grows they could do Middle Fossa approach to try to keep my hearing. Then I went to the second Dr who said that hearing would be lost due to position of tumor. The third doctor said the same thing as the second. So I've crossed Dr #1 off my list. Not mentioning the tumor being in my fundus and talking about potentially saving my hearing was a huge oversight for me. But then I'm feeling a certain way about Dr #2 and his insistence that An's my size don't cause headaches. I'm sorry I am all over the place but as you probably know this can be overwhelming. Then to top it off, my primary doctor thinks I should have it removed regardless if it grows at my next MRI or not. Before it gets to my facial nerve or to need surgery when I'm older. Has anyone else with a "small" tumor experienced headache and fatigue? This didn't start happening in Dec, it's been years.

[Citiview]

Shah Jl

Welcome and sorry you have 'joined the club'. That location of the tumor is the worst for hearing preservation. At best probably 50/50 no matter what you do. I'm in the same boat but with a smaller AN. I don't know about the headaches but I think fatigue affects a lot of people. The location of the tumor makes it difficult for the surgeons to remove it because it's hard to see and get in there. In some cases they have to do a blind dissection. That's my understanding. If you look at my posts then you will find research that I uploaded that talks about it.

Dr. Friedman wrote a paper/research about the presence of fundal fluid being a good predictor for hearing preservation and conversely the lack of fluid being poor for hearing preservation. In a conversation I had with him he mentioned that he was not finding that to be the case.

Wishing you the best.

[ANSydney]

Shah, welcome to the club that nobody wants to be a member of and everyone is friendly.

You've discounted your first doctor, however he's the one that I would most follow.

Very few people get to retain hearing regardless of whether they follow surgery, radiosurgery or observation. It's great that your hearing is just about perfect right now.

As Citiview has stated, if the tumor has reached the fundus, it's the worst for hearing preservation. However, I disagree with hearing preservation is 50/50 even if a tumor doesn't reach the fundus. It appears that most lose hearing.

No matter what you do, your hearing is likely to decline. If you want to minimize the decline, watch and wait has the best results. ( https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf ) In particular, "In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis.".

How many ANs has your primary doctor seen? Mine has seen none!

[Citiview]

Perhaps I should have said 50/50 whether middle fossa or suboccipital or radiation. But yes, long term perhaps the hearing prognosis is poor regardless.

[michellef08]

I definitely had headaches before my surgery, and don't have them after my surgery! I also had motion sickness, which is now gone as well. I could see how it may not be 100% related to the actual tumor - but if it's impairing your balance nerve at all - your brain has to work harder, and thus the headaches? There is no scientific background to that, just my personal theory. I honestly didn't even know I had bad headaches - I thought it was normal for everyone to pop advil a few times a week, but now that they are gone, I have realized that it wasn't normal!

[Kathleen_Mc]

It has been my experience that most doctor's believe Acoustic Neuroma's do not cause headaches so that leaves the question "why do we al suffer from them then, pre-op and post-op".
To me it only seems logical that something growing your head would cause pain.
Kathleen

[Patti]

I definitely had headaches before surgery!  I tried everything before I knew I had a tumor.  I never realized how abnormal it was.  I attributed it to sinuses, but always wondered why i didn't have mucus. I was using saline sprays, netti pots, stretching in the morning. lots of tylenol, advil.  After the fact, my former students said they remember me always rubbing my forehead and wincing when i got a sharp pain.  When i started vomiting with head pain in the morning, I finally got a doctor to get me an MRI.  I had retrosigmoid, and the headaches were gone.  Unfortunately 16 years later my tumor is back, but much smaller.  I do get the occasional sharp pain but nothing long lasting.   

[ANSydney]

I have a moderately large tumor and no headaches.

[gary.s]

Hi Shah,

I was diagnosed January 2017 with a 1.6 x 1.2 cm acoustic neuroma. It is on my right side and I have lost most of my hearing on that side. I have headaches most of the time and experience dizziness once in awhile. Fatigue seems to be part of any strenuous physical activity, and rest is necessary. My doctor wants me to Watch and Wait until May when I take another MRI to determine if any growth has occurred. Since my tumor is relatively small, the Gamma Knife radiosurgery is recommended if the tumor begins to grow. It seems that many of us have headaches, dizziness and fatigue.