ANA Discussion Forum
General Category => Inquiries => Topic started by: Denisex2boys on May 12, 2008, 07:34:42 am
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??? Ok - so I vaguely remember this happening before diagnosis and once since ...... but this was just the worst weekend - - Is this a 'new' condition????? I had a really bad ear-ache but only on the AN side - by Friday night I could not even bite down on my back teeth there was so much pain - the other (non-AN) side was fine. Saturday, Sunday and today is better - but I am also popping tylenol.
Is this a new thing ...... ?
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Denise-
Hmm - that's a weird one. Is there any chance you might be clenching your jaw and possibly having some TMJ symptoms? (I do that when I am stressed, and it caused a lot of jaw pain.) Probably a good idea to call your surgeon and mention it to him - just in case.
I'll be curious to hear what others have to say.
Debbi
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Denise -
as I recall you are still on the waiting list for surgery. I don't know if this is AN related or not, but IMO you should contact your doctor and see what he thinks. It might have some bearing on when they decide to schedule your surgery.
Good luck and keep us posted,
Jan
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Denise,
I have some pretty yucky ear pain that comes and goes occasionally.....my doc had no answers for me as to whether or not it truly related to my AN. I think at this point he thinks I'm nuts anyway! But I do get some stabbing pains that come and go....nothing consistant that lasts though. Best of luck in your quest to resolve the ear pain, and with scheduling your surgery soon.
Melissa
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I have ear pain on my AN side off and on pretty regularly and I have a constant "tooth" ache on my AN side, but my dentist can find nothing wrong w/ the tooth. I've also been told TMJ possibly, but it sure seems suspicious to me that it just happens to be on the AN side...
Has your surgery been scheduled yet? I may have missed the date...
Cindy
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Denise:
I never experienced such pain pre-surgery. I would call your doctor and ask about this sudden ear pain. It may be 'normal' with an acoustic neuroma, but it doesn't sound as if it is. However, you need a qualified medical opinion and we can't give you that. I hope this is quickly resolved. Please let us know what the doctor says.
Thanks. :)
Jim
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I am post radiatin 2 1/2 yrs. I do get earaches both an side and good ear side. Things that cause it are wind, loud noisy places. Right now my an side ear hurts worse than ever. When i drink or eat it aches. My ent once gave me eardrops for itchyness . My ear doesn't itch but aches. That is why I am so afraid to go on a airplane. I just live with it and try to stay away from things that cause it. My first earache caame after wearing earplugs. So I don't wear them.
mema
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Hi Denise,
I have ear pain on my AN side that spreads out into my jawline on the right side (AN side) just below the ear and also into the bone right behind the ear. At times it gets pretty bad and then it goes away. I had this problem before diagnosis, one of my symptoms which led to diagnosis. I have had it occur a couple of times like that since diagnosis in January. I had thought it could be TMJ especially right after diagnosis because I felt I may have been clenching my teeth due to the stress we feel when we are first diagnosed, however it happened again last week and I don't think I have been clenching my teeth this time. ??? I take Ibuprofren and it eventually gets better..... I too had started to post last week to see if anyone else was having simiilar problems.
Glenda
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I have all of the same problems. I'm on neurotin 300 mg 3X a day and it has helped, but at times nothing works. When the weather is bad with low pressure system I'm in bed because I can't function. At times my teeth do ache and I suffer from migraine headaches. I feel like a hypochondriac everytime I go to the Dr's.
Anne Marie
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Hello
I did feel that as well, at one point.
I usually feel some throbing pain behind the ear that has the AN but one time I did have the pain you are describing, to the point of not being able to chew hard food so much it hurt...but it was only once so I don't know....
Hope you're better now
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Hi,
I'm a new member, just joined today sadly, I was diagnosed back in March of 2007 with a small vestibular schwannoma, my first symptom was tooth pain that then became facial pain up to my ear that is called "trigeminal neugial" (I hoped that I spelled it write). I went to Boston to the Mass Ear and Eye Infir in June and they told me that the have those kind of symptoms was unusual for someone with a small tumor. The first sign is ear pain, rining in the ear or hearing loss. It is now July and my symptoms on a daily basis are, headaches, tooth pain, facial numbness, ear pain , ear fullness, and sometimes a stiff neck. I am going for another MRI in August. I'm on the wait and see treatment.
LisaP :(
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Hello
I do feel ear pain sometiimes, but not inside the ear but behind it, where the AN is. Is a tension pain that comes and goes and actually woke me up one of these nights so much it was powerfull. My AN is only 2.1 x 1.5 x 1.7 which they consider medium but told me ear pain would not be from AN... ??? So now that I see more peop[le having it, maybe they should add it to the "symptoms" list ;D
Pascale
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Sunday morning around 4:00am my left ear drum ruptured. All week I had sinus problems and laryngitis.
Saturday morning I woke in extreme pain. I could not lay me head down on the pillow, the pressure and pain was unbearable. I called the after hrs clinic and my GP was on call. I saw him in the afternoon. He was reluctant to give me an antibiotic, but he did. Than the noise level in my ear changed and everything was tinny and echos. It was very weird and the dizziness started to take over. I napped for a few hours.
Last night my ear drained some more. I called my GP's office and left message as to what happned. I called the specialist office but he's not back from vacation until tomorrow. I'm still dizzy and the ear is more than uncomfortable. I have questions because the 1st ENT who preformed my surgery 2yrs ago told me my ear drum was wiped out and he put something in there. What is that something? He also removed some bone to allow the facial neuroma room the grow. So has there been growth?
I had a MRI June 15th and haven't received the results yet so I'm hoping to get the results verbally over the phone tomorrow. I'll telling you there is never a dull moment with this thing. I'm so glad I'm off work. I would not be able to handle this, working fulltime, the house, the husband and my sons. I would need a padded room.
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Ouch, Yardtick! Sorry to hear about your rupture :( I've never had this happen, but my son did was he was a toddler and I still remember how painful it was for him :'(
Hope you mend fast and that the results of last month's MRI are good. Please keep us updated.
Hang in there :-*
Jan
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Anne Marie:
Boy, the fun never stops, does it? These AN's are the 'gift that keep on giving' - only in a perverse way. :'(
I was so sorry to learn of your ear problem. It sounds frustratingly uncomfortable and definitely not something you need to cope with right now...or at any time. I have no advice or suggestions at this point but I do hope you'll get both pain relief and satisfactory answers to your questions, soon. I know you'll keep us updated so I won't even ask.
As difficult as it may be right now, don't ever lose your sense of humor. We would be lost without it and I know you would be, too. :)
Jim
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Anne Marie, I wish I knew what to say... truly. I'm sorry to hear this and you KNOW I'm sending the infamous Queenie Beanie healing "toots" and hugglez your way.
Oh, hun, I'm sorry to hear this. Please hang tough!
Phyl
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Thanks for the support and well wishes. I have to tell you my husband was pretty freaked out. Louie was stuck to me like glue. It was comical actually I'm propped up dozing on the loveseat in the living room and Louie is layed out on the couch snoring. My oldest son came in from a night out saw us and his first thought was something happened. Yeah something was happening.....my ear drum ruptured!
Jim, I could never loose my sense of humour, remember I live with five men so I gotta keep smiling as best as I can.
Anne Marie
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Anne Marie -
sorry to hear that Louie was freaked out, but it is kind of nice to hear that he's stuck to you like glue ;)
True love - nothing like it ;D
Hope you're feeling better soon.
Jan
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My ear sill drain last night. Today I had sharp shooting pain in my ear and a coughing fit at 6:00am and woke up the entire house. I called the Dr's office and got appointment for Friday morning. I can't wait, I have a load of questions. So that's my update here comes Friday.....
Anne Marie
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I saw the Dr today. Guess what? My MRI was inconclusive because of fluid. They could not get a true measurement of the facial neuroma. Well I guess all of the fluid ruptured out Sunday @ 4:00 am. Last night I did not have any drainage, but I'm still getting ear pain. My ear has been through a lot.
SO, the plan is to remove the scar neuroma very soon. He told me to be flexible....well I'm flexible. Once that is healed than he going to order a very detailed CT scan and than we should know the measurements.
He said on the scale I am a three, and he noticed slight changes in my face since my last visit a month ago. I told him about the hemifacial spasms that are occuring when I'm stressed and tired. Its all part of the facial neuroma. He feels the time isn't right for the nerve graft yet. I know I'm in good hands, but I worry.....
Anne Marie
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Some good news....Tuesday July 22nd I'm having surgery to remove the scar neuroma. I hope this is the begining of no more pain. After I heal of course ::) I have my pre-op tomorrow.
Happy in Ontario, this is a good start!
Anne Marie
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Anne Marie,
I am so hoping that it goes well for you Tuesday. You have been unbelievably patient, it is time for something good to come your way.
Steve
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Thanks Steve,
Had my pre-op today and I'm waiting for Tues, not that I want to wish the weekend away. Can you believe it was my Dr who did the pre-op! He even walked me to the pre-admissions and over to the operating suites. He knows I'm nervous, considering I'm going to be wide awake while he removes the scar, the neuroma and chisels down my skull. Thank goodness he's ordered 2mg of ativan for me to take as soon as I get there.
So good thoughts my forum family!!!
Anne Marie
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Anne Marie -
good luck on Tuesday! I'm keeping my fingers crossed that this is the beginning of the end of your pain.
Never heard of a doctor doing a pre-op, but I'm very impressed! Sounds like you'll be in good hands.
Did you remember to put your surgery on the AN Calendar? There's a link under Steve's profile.
Jan
BTW - love the new picture; very pretty ;D
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Anne Marie, I hope all goes well for you but am quite surprised about why you will be awake for what sounds like a major surgery. Were you told why you would be awake? Will you be having any more surgery in the future as maybe I am not thinking right.
Good luck and we will be thinking of you.
Cheryl R
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Hi Cheryl,
I'm awake because my guess is, it is cost efficient. I was awake when they removed the hardware from my ankle three years ago. Remember I'm Hungarian and have lots of Gypsie blood running through my veins......strong like bull ;D
Yes I'm sure there will come a day when I will need the nerve graft. At the moment my appearance is a 2 on a good day and a 3 on bad day with some synkinesis. I will have a CT scan to determine if the neuroma has grown. My MRI showed the residual mastoid air cells were fluid filled and it made evaluation very difficult.
Anne Marie
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Hello again. I hope this goes well since you have been in so much pain lately. Sounds like you have put up with what many of us would not have been able to.
I well know that ones face can sure vary from day to day.
Take good care of yourself. Cheryl R
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Anne Marie:
Let me join the many others rooting and praying for you to have a relatively painless and very successful surgery on Tuesday. You've certainly had your share of pain and problems yet kept your sense of humor throughout. I really hope you catch a break this time and can start down the road to normalcy. We're with you all the way. :)
Jim
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Anne Marie-
I am sending you my prayers and well wishes, too. I can't believe what you've been through! I hope Louie is holding up okay, too. Let us know how it goes on Tuesdaay.
Debbi, sending lots of good thoughts (and dreams of white pizze) your way...
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LisaP, I was glad to read your post of ear pain, fullness, I am new to this and can hardly stand this feeling. The Dr. in Boston also said it was a bit unusual. I have made an appointment with the dentist but this pain is clearly deep in my ear and it is not because I know something is there because I felt there was something wrong in there before the MRI and the Dr.'s said it was a normal ear. When is your next MRI?
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SYMPTOMS
The symptoms of an acoustic neuroma depend on the size of the tumor. MayoClinic.com explains that tumors smaller than 1.5 cm may not result in symptoms. Since the tumor affects a cranial nerve connected to the ear, patients have problems with hearing. For example, acoustic neuroma patients can have hearing loss in one ear. Ringing can also occur in that ear. Patients can have problems with balance, which may affect their walking. An acoustic neuroma may cause facial numbness and weakness. MedlinePlus adds that though less common, acoustic neuroma patients can have difficulty understanding speech, headaches, sleepiness or pain in the ear or face.
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Hope you are feeling better, Anne Marie.
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The 3 years I was on wait and watch i had terrible ear pain it felt like I'd swallowed a lump of ice in England we call it 'brain freeze' the hospital kept saying it wasn't a typical symptom of ANs eventually I had the tumour out and hey presto no more pain.
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This is encouraging! Lately I have had ear pain...not today, but for two whole days...and today I have a headache but it can be due to normal factors...I have not been sleeping well. I am hopeful surgery will help these symptoms.
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Hi Millie after my surgery I had no more ear pain at all hope it will be the same for you.
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Hi Everyone:
I never had ear problems as a child. I've been through just about everything you described on this thread. Currently, if I cup both ears with my hands, I find the AN side is extremely painful if I "suction-cup" both sides yet, it's the AN side that hurts upon my experiment. Do you people experience pain doing that?
Palace