ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: LisaP on August 30, 2009, 05:59:28 pm
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Hi,
Just wanted to know if anyone has ever experienced pain, in their ear or on the side of your head where your AN is on? I have for the past two months. The pain is more of a throbbing, it is tolerable but noticeable.
I had a physical last week due to insurance purposes so that I could get another referral to go to Boston for another MRI. My next MRI is not due until Feb of 2010, but due to this new symptom, I thought it would be good to move it up. Soooo I then called Dr. McKenna's office in Boston and they agreed to move the MRI up (probably in Oct or Nov) but they stated that the new "pain" that I am having is not related to my AN!!! I can't believe that, so my question is, has anyone ever experience any kind of pain before receiving treatment?
thanks
LisaP ;D
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LisaP,
That sounds like the pain I've been experiencing. See my recent post under "Symptoms". I also plan on getting my next MRI done sooner than the planned six month interval. See the replies to my post. This may not be all that uncommon.
Jeff
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Hey Lisa! BTW, BoSox sweep this past weekend! w00t! :)
I never had any pain before my treatment (CK) so to answer your question... for me... no.
will see how others respond to this question as well.
Phyl
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I too have experienced similiar pain...,mostly in front of ear, sometimes in back and above. I have been thinking it is due from clenching my teeth/TMJ as this is so stressful. Often, it just feels like a burning sensation right in the front of ear but I have also had pain in the ear itself. I had mention it to several dr. because I was wondering if it was facial nerve but no one seemed to think that so this is just my own conclusion.
Cheryl
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Lisa ~
FWIW: Prior to my AN diagnosis, I experienced intermittent, stabbing pain at what I later learned was the site of the tumor. These were intense but infrequent and disappeared following my AN removal surgery.
Jim
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Hi. I had sharp pains along the jaw on the AN side on and off for a couple of months. They stopped after I was on a round of steroids prescribed because of sudden hearing loss. Sorry to hear you've been experiencing pain for so long.
Helen
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Hey, Lisa! I had odd pains on my AN side for years prior to diagnosis. Sometimes the ear, sometimes the head. Just prior to being diagnosed, I had jaw and tooth pain. One of the docs I consulted after diagnosis also said no correlation to the AN...I found that very hard to believe. That pain has gone since surgery...hmmm, not AN related, huh...think I beg to differ ;)
Cindy
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I don`t have any pain. Just tinnitius which I`ve had for 30 years. I guess that could be called a pain. You do get used to it and find ways to make it much more bareable. ( neuromonics ) etc. Mickey
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Hi Lisa,
I had throbbing pain that would wake me up for about two years. I went back and forth to my GP and he considered it part of a sinus issue. The pain was worse than having an ear infection. Most recently, I have not been experiencing the pain to the same severity, but I do continue to have pain inside my ear and behind my ear. The Neuro did not think it was related to the AN either. Go figure!
Vivian
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LisaP:
I ocassionally had a sharp piercing pain right behind my AN ear. I didn't pay much attention to it. It disappeared after my surery.
Syl
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Thanks to all that responded,
When Dr. McKenna's office told me that the pain was unrelated, I thought to my self NO WAY, they are wrong. I am soooooo glad that I have you all and this forum due to now I know that this is just not in my head (get it) :P. Anyways my MRI is being moved up, still waiting to hear from Boston. I am finding that each MRI that I have is tougher to get through, I feel anxious and it feels like the magnets from the MRI are pulling the AN out of my head. My regular doctor has prescribe just one ativan for the procedure. During my last MRI if it was not for holding on to my brothers picture I don't know how I would have gotten through it.
Thanks again and of course I also continue to have headaches, dizziness, ear ringing and balance issues oh well!!
LisaP ;D
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Ear pain is one of my symptoms, throbbing, deep ache in my ear, pressure and horrible tinnitis (constant) I know it is from the AN because the other ear is perfect. There are times to that I get sharp pains for a few seconds that almost take me to my knees but luckily they go away as quickly as they came, now if those ever lasted they would be taking me to the ER kicking and screaming because the pain is intense. So I believe your pain is your AN, you know your body best. Have you thought about another opinion? Have you sent your case out to House?
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Lisa,
I hope your pain and other symptoms subsides. My information may not be useful yet. I'm scheduled for MRI tomorrow to "rule out" ;) AN (therefore, we'll know within a week if my symptoms are analogous to yours or not). However, the pain you describe and that of others in this post are very similar to pain I've been experiencing for about 3-4 months now. It is an intermittent throbbing pain that feels like I'm being poked with a dull pointy object. It usually feels like it's deep inside my ear, but often originates above, below and behind it. Sometimes it hurts around the temple/right side of head and seldom I feel it in my upper cheek. It is not too bad and is certainly tolerable, but at times can be intense. It usually lasts for 10-15 seconds at a time, but will throb several times a day (or several times an hour) depending on the day.
I've done a ton of research in the spirit of understanding the symptoms of AN and questioning whether I could have one or not. I've read countless patient stories and this type of pain does not seem uncommon at all, however it's usually not listed as a classic symptom. When pain/headache is given as a symptom, then it's usually in the context of a very large tumor that is pressing on the brainstem. However, based on my anecdotal readings, this type of pain seems not uncommon for small/medium sized tumors. It's not surprising that many doctors dismiss as unrelated.
Just as FYI, my other symptoms include: unilateral sensorneural hearing loss (low frequency) of 20-25%, constant hitched ringing tinnitus, pulsating swooshing tinnitus, occasional lightheadedness or mild off-balance (never spinning vertigo or classic dizziness). Perhaps related or not, but occasional eyeball twitching (once a week?) where everything darts back and forth very fast (most noticeable when reading for on computer) that lasts for about 15-20 seconds. I should know within a week.
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I am finding that each MRI that I have is tougher to get through, I feel anxious and it feels like the magnets from the MRI are pulling the AN out of my head. My regular doctor has prescribe just one ativan for the procedure. During my last MRI if it was not for holding on to my brothers picture I don't know how I would have gotten through it.
LisaP ;D
Lisa, you're not alone on that! There are numerous of us here who need "a little something" to get us through the MRI's - me, I'm partial to Valium (you know I throw that term around like I've used them for years ::) never had one til a year ago - but they do the trick)
Keep us posted,
Cindy
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Cindy,
Thanks for the response, the stongest med that I take daily is tylenol so to take an "Ativan" will be a big deal for me but it is better then having a panic attack. Thanks for making me feel that I am not alone.
I think maybe my doctor (who is suppose to be the best) should join our forum ::).
Sarbeans,
Where are you having your MRI done? You won't know for a week? When I have mine done at the Mass Eye and Ear, I got the results within 2 hours. Good luck and keep us posted, I will be thinking of you today.
LisaP ;D
For Phyl, I am going to Portland this weekend to see my niece and the Seadogs, have never been to a minor league gqme, looking forward to it.
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HI LISAP.
Maybe ask for 2 ativan for your MRI??? if it is a small dose. I would imagine it is a small dose.
Good luck, dream of your favorite place.............
Maureen
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Thanks,
I told my husband that he better listen to what the doctor tells us the results are due to I probably willl still be in dream land. I received a letter from Boston Eye and Ear stating that my MRI is scheduled for Oct 14th, I have to change it due to I will be in Salem, go figure, I have no other plans all of the other days in Oct and November, that is just the kind of luck that I have.
Oh well, thanks again for those of you who responded!!
LisaP ;D
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I received a letter from Boston Eye and Ear stating that my MRI is scheduled for Oct 14th, I have to change it due to I will be in Salem, go figure, I have no other plans all of the other days in Oct and November, that is just the kind of luck that I have.
Go figure! Sounds like my kinda luck too :-\
Maureen
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Hi All,
My new date for my MRI is now October 21st in Boston, just in time to let everyone know at our Worcester Luncheon how I make out. I am nervous, I have noticed that my symptoms are worse, hopefully it is just stress.
LisaP :-\
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Lisa... keep me/us updated and yes, at the brunch as well. Let's see what he says first.
BTW, I think score is 3-0 (Sox over Orioles) :)
xo
Phyl
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Hey Phyl,
I know it those ##!!! Red Sox that are giving me all of this stress :P
Over the Labor Day Weekend, I went to Maine and saw the Seadogs play, what fun it was to sit for only $10.00 and have the best seats in the house and this poor lady two seats from me got hit in the head with a foul ball (just like in Feverpitch). She ending up being ok.
Yes I will let you know how I make out with my MRI, wish me luck ;D
LisaP
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Good luck tomorrow Lisa, I will be thinking of you.
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Lisa,
good luck. Let us know how it goes.
Marianna
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Please remember that the outcome of the MRI and any action you take or don't take have nothing to do with whether you will get a hat. Which you will. Eventually. :)
Steve