Headaches/head pressure

[Rseecola]

I am a 26 year old with a small AN. I was first diagnosed in 2010 with a 4.9mm AN, I originally went to a neurologist because of tinnitus and severe left-sided head and face pain. Prior to this I had never had headaches before in my life. I was originally put in the watch and wait category because tinnitus was my only major issue. I have had random infrequent headaches (maybe once a week at the most) It has been growing ever since and when I got an MRI yesterday it is up to 8mm. I have noticed some difficulty with my balance, some pressure on my ear and my headaches have become significantly more painful and frequent (13 of the 31 days in January and so far 13 of the 27 days in February). I was a division one athlete in college and now with these headaches I am having trouble doing anything I used to do. My doctor (whom I don't feel listens to me) told me headaches aren't normally seen in this size AN. I work in the medical field and I believe that the same thing can affect two people completely differently. I was just wondering has anyone experienced similar symptoms? My doctor told me that I will eventually have to do something about it and I can either do it now or watch it for another year and see what happens. I don't know if I can take these headaches for another year. If someone did have head pain and they got it removed did the pain go away? These headaches feel more like there are too many contaminants for the the container, just tons of pressure. Thanks for your help.

[Kathleen_Mc]

my major issue pre-op was headaches and insomnia, along with hearing loss that I wasn't aware of, and facial numbness and tingling.
Post-op, once recovered from the surgical pain, I have continued to have issue's with headaches.....as bad as before??? not sure. They can be really horrible or just nagging in the back ground.....they are differenct than pre-op for sure but headaches none the less.

[kathleenanna]

Hello.....I am two years post op....I did have headaches pre-op also.  But now, like Kathleen Mc said, the headaches I experience now are different.  Weather is also a determining factor.  I find that if I take 3-4 Aleve, it helps reduce the headache on really bad days.  Some days, its just a slight, but annoying, head pressure all day.  Some days, its nothing!!!   Never know what I am going to wake up to in the morning!     

[Mickey]

Hi Rseecola.. I`m a believer in W+W. With that said, there are times when I`m not. In an instance like yours when your 26 + AN growing at a fast rate with much increasing symptoms, I wouuld think its time to react. Most important, do your homework + get yourself the best medical team you can... Best wishes, Mickey

[char1957]

Hi Rseecola,
Your saying that your doctor doesn't listen to you, speaks volumes to me.  It took me 3 years and 3 Md's before I found a Nurse Pract. who did listen to me.  She sent me for an MRI and they found the AN.  (the doctors thought my symptoms were "all in my head" and put me on antidepressants) Because of waiting so long to get the diagnosis, I had no choices.  My only option was the cranny.  If I had a diagnosis sooner,  I might still have my balance and hearing, who knows.  With all this being said, my point is.... find someone willing to listen to you.  You know your body better than anyone.  As Mickey said, do your homework and get the best doctor and medical team that you can.  I wish you the very best in your journey.
Char

[PamJ]

Hi I had terrible pain with my AN I would describe it as swallow a lump of ice and having brain freeze, I was told the way I described the pain was not usual with an AN and was watch and wait for nearly 3 years.  The tinnitis and the pain was getting worse and the hospital agreed to take it out.  I'm 2 years post op now and am so pleased to say I have no more pain and still have tinnits 24/7.

[izzy123]

I have had an acoustic neuroma for about 10 years. I need the surgery really bad but I had financial issues. I am ready to have my surgery this year and am very scared. I'm 53 years old. I have terrible ringing in my right ear and my hearing is pretty much gone on that side. I hope I haven't done any serious damage besides that. I am lucky that I don't have any facial nerve issues yet but the pressure in my head is getting to be an issue and I have headaches almost every day. I have also had some pretty serious falls over the years from lack of balance due to the tumor. I have broken bones and bloodied myself up pretty bad. I see a chiropractor for my falls due to terrible pain. Please don't let your tumor go too long. It is my own fault and I was dumb to wait this long. Don't let anyone tell you that you don't get headaches because they are WRONG! I would love to live on vicodin but my doctor wont prescribe it too often due to its addiction. So I swear by Aleve. Good luck and please continue on your journey to get your surgery because eventually it will crowd out your head like it doesn mine. God Bless!

[Bonnie B.]

You want to find a doctor that will listen to you 100%    There are options other than surgery you could look into.

[briangustafson]

I am new to responding to these posts but have been a member for a few months. My tumor is larger than yours but I have the same symptoms; headaches, intense head pressure behind the right ear, minimal hearing loss to this point and increasing balance problems. My docs have also told me they do not think the headaches are related and I am being treated with several meds for cluster headaches; I am not a doc so it is difficult to disagree but I also don't believe in coincidences; it is my belief they are related to some degree and I am addressing them as such. My headaches are actually two different types; the ongoing, rolling type that throb and seem to grow and subside (always present) and the extremely sharp, ice pick through the ear type they are calling cluster headaches, which last anywhere from 20 minutes to a couple of hours. The pressure in my head is always there but varies in intensity. I am 59 so I think I may be looking at treatment a bit differently than you, who at 26 has a lot more years left. My suggestion? Research, research and research some more. Once you make a decision, pull the trigger and don't second guess yourself. Best of luck.

[hdread]

This is my first post - I was reading through in anticipation of my Mom's 2nd appt. with the neurosurgeon tomorrow to get the results of her 2nd MRI.  This post caught my eye and I wanted to respond - perhaps to provide some hope. 

My Mom was diagnosed with AN this past Feb. and was also told that her terrible headaches were not a result of the AN...until we saw the neurosurgeon who said that the headaches were because of the AN, but not directly.  He told us that they were most likely caused by the combination of her sudden loss of hearing and resulting tinnitus and physical 'worry' about what was going on.  He described it as the body's reaction to all of the stress - both physical and emotional.  He recommended deep tissue massage of the head, neck and shoulders along with physiotherapy.  My Mom was very discouraged by this information, but booked herself an appt. for physio anyway.
 
She felt worse after the first 2 sessions of physio, but after 6 weeks of physio (2x/week ... not cheap, but mostly covered) all of the terrible head pain/headaches were gone.  She also took a low dose pain medication that her family Dr. prescribed during this time.  She still has head 'fullness' as she describes it and a different type of headache when the weather is humid, but that terrible headache she had when this whole thing started is gone. 

I hope this information will help/encourage others. 

[DIZZYGRAN]

I was also told that no way the tumor was the cause of my headaches but I had terrible headaches so who knows.