Pains in and behind ear????

[formula30]

I am due for another MRI soon, I had one at three months, and it showed some swelling, so they are keeping a close eye on it.........but now about five and half months after gamma I have been having pains behind my ear sort of in the back of my head on that side.  Last night it kept waking me up.  It's not a headache, actually like a jab..........I was just wondering anyone else have this, a few times today it kind of made my wince.........maybe all the rain we are getting today isn't helping???  Just wondering if someone else has had this issue?

[mattsmum]

hi - i had radiosurgery 8 months ago, and started getting pains that sound similar at about 4 months post behind my ear on the an side. after a short time they did progress to involve my ear, jaw and face at which point i realised i had trigeminal neuralgia which can occur in around 2% of people. my mri confirmed the tumour swelling is causing pressure on the trigeminal nerve. i had initially thought it was occipital neurlagia from the pins/ headframe which can also occur and was just taking pain killers.
i was given steroids for 3 weeks and amitriptiline (which i am still taking) and it is very much improved.

do get in  touch with your doctors and tell them what you are experiencing in case it gets worse - they may want to give you steroids or do your mri if they think it is trigeminal neuralgia. i am told it will resolve once the tumour swelling settles, and i should not need meds indefinitely. i have been told to start steroids if it comes back badly.

best wishes,

vikki

[formula30]

Thank you for replying to my message.  I really hate the thought of being a worry wart, many people have alot worse problems.  I will be calling today and talking to the doctors office.  I really am trying to stay away from the steroids, but if thats what helps.  I noticed that the pain has went from behind my ear to my ear (sometimes) into my jaw and kind of down towards my neck.  Its weird.  I have had so many tests prior to this AN diagnosis........carotid artery, echocardiogram, heart monitor.  Hoping this is just some swelling that will stop soon.  Thanks again, it always feels better to realize you are not the only one.

[mk]

I have had these stabbing pains behind my ear (they seems like coming from the bone) several times. I know that others have had them too. They come and go suddenly. It is a sharp pain, but only lasts a few seconds. - It may last for a day and then go away. Last time I had them two weeks ago, they did wake me up at night. I found that ibuprofen takes the edge out of the pain and that I just have to wait it out.

Marianna

[ppearl214]

Are you all noting the "ice pick" type of pains?  I ask for my own curiousity as I have been diagnosed with "ice pick migraines" by my headache specialist and have noted that I never had them before until I had my radiation.........  I am now just shy of 5 yrs CK annivsary on my AN and still (on occassion) experience them.

Phyl

[mattsmum]

i have had 'ice pick'  head pains for years - on the top of my head - so not near my an and long before my radiation. are yours near the an?
the trigeminal neuralgia has a somewhat similar quality, but for me has been a lot worse as i had continuous gnawing and burning pains as well as the stabbing jabs. and the stabs would keep on and on and on. my 'ice picks' were only a few jabs at a time and nothing in between.
best wishes,

vikki

[ppearl214]

vikki

My "ice pick" migraines have occurred around different parts of my head, not just near the AN (left sided).... they sometimes occur on the right side, at the top and near occipital area.  Someone had noted to me about possible relation to the Trigem but nothing concrete on it. I do have the ANA and CK Patient Relations team inquiring on my/our behalf the past 2 wks and am awaiting further updates. 

Phyl

[mk]

I didn't know that they are called ice pick migraines.
In any case, I certainly started having them after radiation, and they are always localized on the bone behind the AN ear.

Phyl, let us know what you find out from the Patient relations team.

Marianna

[ppearl214]

Marianna,

Good to know.. thanks. Yes, you can do a Google on "ice pick migraines" and find a lot of info available.  Still awaiting from Patient Relations. I know she's been busy lately. Let me "ping" her to see if I can get update.

Phyl

[JLR]

Good Morning..I, too, at 4 months post CK, are starting to get very very sharp pains behind the AN ear. In addition, I am getting small jolts of pain in the jaw on the AN side and to make matters worse, my face on right side as well is pretty numb....Last night was the worst..took tylenol then aleve.  The pain finally subsided. From being a member of the forum I know I'm not alone. That there are many of you that are post CK with the same or similar symptoms which gives me comfort that I'm not alone at this. At 3 months post CK..it was great. Except for the usual tinnitus, all was well, and was feeling pretty good...then all of a sudden month 4 and whamo! Hope month 5 improves. Any feedback? Thanks. Joan

[6pick]

I started noticing pains behind my AN ear about a month or so ago, too. They've been a dull pain, but sometimes enough to make me wince, like formula30 said. I'll be certain to talk to the experts next week when I go in for my 6 month follow-up.

(Hey, Joan, long time    )

Mark

[JLR]

Hi Mark, Good Luck on your 6 month follow-up! Mine is in June and I seem to have more questions and concerns now than prior to the CK.  We learn more as we go along I guess.  The pain behind my ear is becoming more intermittent which is a good thing. It is still scary facing yet another MRI results consult. I hope we both get good news.  Hope all is well with you Mark, Joan

[Shawn713]

Hello,

I had LINAC radio surgery 2 1/2 months ago and have now started feeling occasional dull aches on the treated side.  The pain is somewhat nonspecific, meaning I am not sure where it is coming from, but ibuprofen helps, and it is not extreme.  My tumor is about 1 cm and near the cochlea.  The pain doesn't last long, just kind of radiates in and then disappears after a few moments.  My first post-op MRI is in September and I will mention it to my doc then if I still have it.  I hope this info helps a little....

[6pick]

So, back from my 6 month . . .

The pain in the back of the head, AN side is pretty normal, so says Dr. Chang.

All is well, I'm right on schedule.

Mark

[JLR]

Great! Congrats! Glad all is well. Im guessing your back in another 6 months?  I was having some pain, some wonkiness and my gait was off..Doctor prescribed a Medose pak and I am feeling better. Doctor said it was probably due to some swelling and or inflammation.