pain with AN?

[lynnie]

Hi, all
I just learned I have AN (7mm, 3mm, 2mm). However, I'm really baffled because my symptoms don't seem to match those I read about.
Right now, I have pain...feels like an ice pick in my ear and pressure in my temple. I also have blurred vision (particularly in the morning)--all on my AN side.
I also pulsatile tinnitis. Have had a few morning balance episodes. But no hearing loss.
The pain and pulsating in my ear is what is driving me crazy. Has anyone else experienced something like this?
Lynnie

[TP]

Lynnie, first of all I am so sorry to learn you have been diagnosed with an AN. However, I am very happy you found this website. You will learn so much from the folks on this website.

First of all, everything I've read most folks don't always have the same symptons based on the size or location. I had my AN for many many years (I am thinking at least 10 and possibly 20 years based on some symptons I recall having). I had a rather large AN and didn't start to have symptons until about 1.5 years before I was diagnosed. I started to lose my balance and then had severe neck pain. I saw my regular Dr, chiropractor and finally a pain dr who was treating me for neck issues. Eventually (about a year after the pain started) I noticed I was losing my hearing very quickly and then BOOM I started getting horrible headaches. Within a few weeks my pain Dr ordered a brain MRI and had surgery scheduled within 3 weeks from diagnosis due to the size and location of my tumor (4cm on my brainstem pressing against my spinal cord).   

Pain stinks! If you are having that type of pain I would assume your Dr shared with you what options you have available. However, due to the size of your tumor I would believe you have some options. I am sure you will get several posts from folks sharing with you the types of procedures available to you. In the meantime, your Dr should be able to prescribe you something to help with pain. Fortunately for me I only had to take pain pills for about 3 weeks prior to surgery. Once I had the AN removed my headaches and pain associated went away. I had post op issues but that was due to CSF leaks.

Hang in there! We send prayers your way!

[lynnie]

Thank you for your prompt response!

I can't believe how large yours was! My goodness! I hope you are feeling better now. :-)

I won't see an neurosurgeon until Friday. So, I guess I'll learn a lot more then.

I'm having trouble understandin how mine, being so small, can be causing so much pain. I too, I have neck pain (and tingling in my shoulder) but never connected the two. I suppose I should mention it to the doc on Friday.

Well, thanks again. I'm sure I'll be back online. No one else to talk to about this.

Lynnie

[TP]

Hi Lynnie, make sure when you go to the Dr you write down what he/she says. In fact, take someone with you to support you and help with asking questions. Some folks recommend you take a tape recorder. Even though your AN is small - everyone is different. Let your Dr know of ALL the pain around your head and neck area. Assuming you had a brain MRI, your MRI should show where the AN is located and if any ventricules are being pressed against. That was my problem and reason I started to have pain.

Please keep in touch. God bless you!

[bpham]

Lynnie,

Some have different symptoms.  In my case, my was small too (10mm x 6mm) and yet my symptoms were quite different and usually associated with large tumor.  In my case, my left face was almost paralyzed and I had spasms too.  Even my Dr was suspecting that the tumor was on the facial nerve instead of on the balance nerve.  This worried me before I had the surgery because my Dr told me that if that was the case, then they could not remove the tumor and only could enlarge the area around so that the tumor did not have to press anything else around it and would have space to growth!!  They were not sure until they opened up.  It turned out to be on the balanced nerve and it was removed.

Anyway, depending on the location where the tumor grows you would have different symptoms.  May be your Dr. can look at the MRI or CT Scan and tells you more info.

Things should be fine after the tumor is removed.  I had mine done 6 weeks ago and I'm doing pretty good.

Good luck.

[lori67]

AN's seem to baffle everyone!  What a wide range of symptoms I've read about - it's amazing!

Mine was there for about 15 years, they estimate, and I never had any real pain until about 3 weeks before surgery.  Then it felt like a really bad sinus headache (although, looking back at all the "sinus headaches" I was diagnosed with during the past 10 years, I wonder if they really were from my sinuses).  I have had one headache since my surgery and that was after a really busy day and I know I pushed myself too hard and got too fatigued.  I did have the occasional pulsing sensation in my ear though, but that's gone now too.

Your doctor should be able to suggest something that will  take care of the pain issues for you.  I hope your appointment with the neurologist goes well!
Lori

[jb]

I've had the ice pick in the ear feeling from time to time.  Mine is usually a few quick jabs over about 15-20 seconds and then stops, but repeats a few times before it goes away altogether.   Just prior to having my AN diagnosed, I was also having a migraine-type headache and sore neck on the the AN side that went on for a couple of weeks. 

I also have pulsatile tinnitus.  I used to just have it occasionally for a few seconds at a time, but over the last couple of weeks I've had it several times a day and lasting for 30 mins to 1 hour.  I just had radiosurgery a couple of months ago, so my AN may be swelling and causing some extra pressure in there.   I had gotten used to some hearing loss and 'normal' tinnitus, but now this pulsating sensation is driving me crazy too.

I hope your neurosurgeon can offer some help.  Let us know how it goes.

[Mary 117]

Hi Lynnie. I had the pulsating titinnus. I actually thought it was cool. It was like bio-feed back and I could keep track of my heart beat. Weird, I know. I had that for about 1 1/2years before they did an MRI and found a 2cm AN. The reason I ended up getting the MRI was the headaches and generally feeling awful. The pulsating went away after surgery but now I have mild ringing. I lost very little hearing but they were careful as I am a musician.

Hang in there.
Mary
2cm AN Middle fossa, HEI Dr. Brackmann 05/24/05

[chica07]

Lynnie,
          my AN, it is a small 9mm...My major symptom was vertigo but for about one month before my vertigo symptom, I had headache almost everyday but I thought it was stress from work. 

[Jim Scott]

Hi, Lynne:

I'm sorry you have a reason to be here (an AN diagnosis) but I'm glad you found us. 

Your symptoms are not abnormal at all.  I also had the stabbing pains, temple pressure - and a few other symptoms  Hearing loss is common but not guaranteed.  Pulsatile tinnitus is fairly rare but likely the source of your misery (pulsatile tinnitus) is your AN. 

AN patients can present with a host of symptoms; from headaches to stabbing pains to loss of appetite to single sided deafness (SSD) to cognitive problems to eye problems and so on.  While deafness and a few other symptoms tend to be common among AN patients, no one is 'typical' and symptoms vary widely in type and intensity. We're all unique individuals with our own unique manifestations of an acoustic neuroma tumor.  Now, you're part of the club nobody really wants to join.   

Jim

[JTomes]

I too have been newlydiagnosed. I have bilateral tumors, I have had a headache for 16 days without relief. I have had some dizzy spells and some numbness in my face. I am so confused at this point I can understand the dizzyness!

[ppearl214]

I've had the ice pick in the ear feeling from time to time.  Mine is usually a few quick jabs over about 15-20 seconds and then stops, but repeats a few times before it goes away altogether.   Just prior to having my AN diagnosed, I was also having a migraine-type headache and sore neck on the the AN side that went on for a couple of weeks. 

jb, I just started a thread in "Headache" forum about "Ice Pick Migraines"... may be worth a peek.

Phyl

[Victoriah1999]

I am so sorry you presented with the ice picks!
It's AWFUL.  I presented with that, and being without balance, and walikng into doorways CONSTANTLY.
It depends on where you get the tumor as to how much it will affect you.
Everyone has a different body, so it can be different for all of us.
Where are you from, if it is OK to ask? 
Your tumor may be relatively "small" but it may affect you more if it grows in the "wrong spot".  So please
do not worry about telling us that "size doesn't matter." 
Keep us updated on what you find out going forward.
(((HUGS)))
Victoria

[lynnie]

Thank you all for all the information and support.

My AN is small (6.4mm x 3.9mm x 3mm)and confined to the IAC.... that's I'm so surprised that I'm having so many problems. I can't imagine what a larger one must do!

I live in Columbia, Missouri. I have seen one neurosurgeon here...who told me the 3 options and asked if me my pain was bad enough for treatment at this time. I have a second opinion at the Advanced Center for Medicine at Barnes-Jewish Hospital in St. Louis.
I am trying neurontin for the symptoms in the meantime.

I have done a lot of online research on AN...but no where but on this forum have I seen much mention of pain associated with AN.
I'm also confused about the nervus intermedius...could that be a contributing factor?

Thanks again for all your help and support!

Lynnie

[HCSTARWIND]

Hi Lynnie-
 My AN is also small 5x5x3x9mm in the left IAC. I was dx Feb 06. It has grown slightly. My initial symptoms were tinnitus high frequency and hearing loss. After about 6 mos I noticed twitching of my left eye and hemifacial spasms on the left. I followed up with a neurotologist in Mass. He is very good. I am in watch and wait for now. I also have otosclerosis in the same ear. I had a bout this last summer with veritgo so went back to Mass. It turns out it is BPPV in the Rt side and Vestibular rehab has helped this . Now I am experiencing facial numbness on the left and tingling into my lip. My left eyebrow droops @ times esp. with noise. Sometimes my left temple area hurts and is tight. My left neck area is also bothering me. No real sharp pain, just like and irritation in the back of my head. I am having another MRI next week to see if there is another reason for the facial symptoms. R/o a clot or possible adverse effects from a previous surgery I had 23 years ago. I had a mylogram  and had cervical neck disc removed and a fussion place between C6-7. The array of symptoms we have are not  psychlogical. Don't let anyone tell you that. There is a foreign object in your head and it is causing you symptoms. You will find the support here . I wish you the best with your f/u treatment. Stay in touch . Helen