ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Lisa B on November 28, 2006, 12:38:04 pm
My name is Lisa B.
I am new to this site and spending most my time reading up.Ã‚Â Like everyone else, I'm very frightened.
I was diagnosed following an MRI at the end of Aug. of this year.Ã‚Â Size of my tumor was 1cc x 6mm x 6mm.Ã‚Â I had been to several doctors with complaints of hearing loss,pain in my ear(one ear)several times.Ã‚Â Each time was told that it was probably sinus drip or fluid. My cheek feels very strange.Ã‚Â Went to see if it was my teeth because my teeth feel funny. Had a funny warm sensation on that same side of my face. Balance and light-headedness.Ã‚Â Eye felt a little different.Ã‚Â Couldn't make out where this was all coming from.Ã‚Â I still have all these feeling and now have tinnitis along with all the rest.Ã‚Â
I seem to be having big time ear PAIN . It never seems to go away. Not so much headaches, just pain like a bad ear infection.Ã‚Â I live on motrin which I just read this morning might not be helping the tinnitis issue.Ã‚Â It also seems to not be helping the ear pain anymore.Ã‚Â I've been to 4 different surgeons for consultations..... also confusing.
#1 Dr.Said watch and wait ...he didn't have enough experience to make me feelÃ‚Â Ã‚Â Ã‚Â comfortable.Ã‚Â
#2 Dr. Sissmanis - Said watch and wait and I felt he didn't want to be bothered by a smaller sized tumor. Said that I didn't have substantial hearing loss yet and didn't feel that I should rush it.
#3 Was great and spent loads of time explaining options reasons why all these sensations. ( He's probably the one I'll be using) I'm pretty much wanting to go the microsurgery route.Ã‚Â His name is Dr. Schessel in Washington D.C. Does anyone know of him?
#4 Was a similar experience except he felt that by waiting to long ,I would loss a great deal more of my hearing which when tested last was still not tremendous. I feel I've lost a lot of my hearing.Ã‚Â This Dr was Dr. Niparko....at Johns Hopkins...I'm far from this but on the east coast.
I suppose that I'm just not happy with the watch and wait opinon because I have so much ear PAIN. More than just the feeling of presure that I had over a year ago now.
I am having a great deal of jitters about making a step.Ã‚Â And when.Ã‚Â I can't go to the House Ear Clinic....I'm a single mom withÃ‚Â 2 children and have to stay closer to home.Ã‚Â My friends and support system can't travel so far away.
Has anyone else experienced ear pain and does it go away after surgury?
And any experience with Dr's. Schessel or Niparko?Ã‚Â Ã‚Â
Thanks to all of you for sharing info, experiences. Wishing that all these extra things that our bodies create would walk off & go away.
Sorry that was so long.
Best wishes to all...
welcome Lisa, most of your questions I cant answer but I know someone here will be able to.
I have a AN as well, and Im also a single mom.
I just wanted to take time to let you know that you have come to a great place for good info and for good pals considering you have to face this AN journey.
Sorry to hear that you have had this diagnosis, but as many have reassured me you will be fine.
If you ever want to talk dont hesitate to PM me.
God bless, take care
Has anyone else experienced ear pain and does it go away after surgury?
I can't speak to the particular doctors, but will say that you have to feel confident in your choices. We all make our own decisions, for our own very personal reasons, but what I found gave me the most confidence going into surgery was knowing that I made the best decisions I could for me at that particular time. If you can get through this and not second-guess the decisions you've had to make, it'll help a lot on the other side, I think.
As to the ear pain...
I had intermittent sharp, stabbing pains in my AN ear. I don't think it was as constant as yours - it'd happen for a few seconds a few times a day. I think it was the bony structures in my ear canal getting compressed (which was visible by MRI). I am happy to report that I have not felt that pain even once post-op (once I got past the initial surgical pain). I don't know if that equates o your situation, but maybe it's a glimmer of hope for you. The funny thing is that each person's AN and symptoms (pre- and post-treatment) are so individual, and it's impossible to predict what will happen for you. ???
Hi Lisa B and welcome:
I am so sorry you have an AN but I am glad you came on.Ã‚Â It does help to talk to people that know what you are going through.
My surgeons were in Minnesota so I can't help you with the two you mentioned.Ã‚Â I do know that after talking to my soon to be surgeons for five minutes, my gut told me they were the ones for the job.Ã‚Â They took time with me, they were extremely confident without being arrogant and at the time, they had done over 500 AN surgeries.Ã‚Â Now they are over 800.Ã‚Â
I did not have ear pain, just terrible pressure.Ã‚Â It drove me nuts.Ã‚Â I did ask if that awful feeling would be gone after surgery and they told me it would, after the swelling went down.Ã‚Â They were right.Ã‚Â Now my head feels like it has just the right amount of stuff in it.
Good luck Lisa.Ã‚Â Kathy
Stabbing ear pain sent me to the doctor once or twice a year for about 5 years before diagnosis. The pain would come on me so fast I'd grab my ear, wince, and cry out. I remember telling my family and doctor it felt like a knife in there. The doctor would diagnose ear infection and prescribe antibiotics. If the pain had not gone away with each course of antibiotic and decongestants I'd have gotten another diagnosis.
I have never had such pain in my ear, not even when I was experiencing Translab afterpains.
Sorry to read about your ear pain. Its really horrible isnt it, i have had ear pain now for over 2 months, its always seems to be there and ranges from mild to extremely severe, most of the time its just about copeable, but when its not you really feel low dont you. I havent been diagnosed with a AN as yet, and am waiting for my MRI, which hopefully should be on the 11th Dec 06. Obviously im hopng its not a AN or anything as serious, but all the symptoms i have seem to point to that, decreased hearing in one ear, feeling of fullness in the ear, tinniitus, at times loss of balance, facial twitches and of course the pain. My ear pain does fluctuate, does your ear pain do the same, or is it constantly awful? How long have you had the pain in the ear for? I have been taking ibrufen tablets, which does help, but not always. It must be very difficult for you with the children etc.
Keep in touch, it definetely helps to have the support of everyone who is going through the same thing. This site has helped me to cope with my symptoms knowing that im not alone with this, and neither are you.
Sorry, I've forgotten if I had replied to you or not...forgive me..I do have this mostly all the time and do also seem to need much Ibruprofen. Also ..doesn't help much. I want to hear about how you handle your day's with this...I have been very distracted and get tired easily ,I believe from simply from the lose of hearing and ear pain that I'm overly sensitized to my world. Exhausting.
Please tell me how your coping and keep communicating if you wish..
Whom had written to me on Nov. 28,
I want you all to know that all of the messages were read and taken with great warmth. I'm so very inexperienced at how to post things in this forum that I've blundered a bit with returns (also had many things going on at home). I found that I have to make a list of all the great advise given. I
Do know that I've found all of this a big help. Thanks for the humor also. I'm big on that.
Dont worry about whether you had replied or not, its not a problem, everyone has busy lives dont they. I agree with you 100% that the pain is tiring, being in constant pain makes everything seem harder work. You try not to get grumpy, but sometimes you just cant help it.
Ive given my ear pain a rating of 1 to 5, 5 being the most unbearable. Most of the time its 1 to 2 and the ifbrufen helps, i can even go without taking any, which i often choose to do, i worry about becoming reliant on them or that my body will get used to them and then be of no use. When the pain creeps up to a 3 then i do need to take them, and then quite often the ibrufen takes a while to work. When theÃ‚Â pain is a 4, it doesnt work at all, and i feel completely miserable and cant concentrate on anything. It has only been a 5 three or four times and i thought i would have to go to the accident and emergency to get them to do somethiing, at those times and even on a pain of 4 i get really miserable and cant understand why nobody is doing anything about it, ie the hospital, wheres my appointment etc etc, no one cares etc etc, but it has passed andÃ‚Â i have made it through to the morning, its always the worst at night, i suppose distractions during the day take your mind off it a bit more.Ã‚Â Ã‚Â
I dont know why the pain fluctuates like it does, or why the pressure in my ear is worse on some days than on others, it doesnt seem to have any pattern at all. I can have a really easy day and then that night it just flares up, so i dont know.Ã‚Â I can cope with all the other symptoms, but the pain i cant.
Do you find that even tho you have hearing loss you are realy sensitive to certain types of noise?
Sometimes if someone is talking to me and not looking at me, ie: has their back to me, i usually only catch half of what they have said and now dont bother to reply, i am so sick of saying, sorry, what did you say!?Ã‚Â I find i often repeat back what someone has said to me, because i hear some of what they have said, and i fill in the rest with what i think it was, it can sometimes be quite funny, but as we know also frustrating. I have always thought that the balance thing was to do with dizziness, but ive noticed they are seperate things, sometimes I feel a bit light headed, like when you have got up too quick, but the balance thing, Ive felt completely normal, so to speak!!! and just walking along and its as if you have fallen off the edge of a pavement, seems to be no warning with that.
How old are your kids Lisa, are they at the hard work stage? Not they are not hard work at any age, but you know what i mean! Do you get the opportunity to rest when you need to?Ã‚Â Ã‚Â
Well, i suppose i ought to get on with the day, its 8.15am here, getting light outside now. I dont have a job at the moment, have had a couple of interviews, been in a bit of a quandry when they ask about my health, decided to wait now till after the MRI, at least then i will be able to tell the truth. But who will want to employ me if i do have a AN, another worry! sigh!Ã‚Â ???
Keep in touch Lisa, and take care
Best wishes Jacey
Oh ...you've just told my whole story. Every bit of it ...including the way you've been dealing with hearing conversation. I feel that a lot of the time now I ignore people talking around me because that contributes to my exhaustion. And yes...some sounds hurt my ear so much that I find myself always walking around with my hand over my ear in fear of more pain. The way that you described the lightheadedness was also simmilar. I also can't look up without holding on to something. Sometimes I can't stand dealing with this and get so depressed. It seems that this is how you feel also.
My children are not at the high maintanence stage but they still do need a great deal of my attention (transportation-conversation-involvement). My son is 15 and very very talkative young man. He's one of those non-stop kind of kids. Very happy and wanting to do things...and I just want to always keep him busy so that he remains happy and out of trouble.
My daughter is in college...her first year. I will tell you that she is very independant but I still have a few things to arrange for her once school is out. The moving in and out thing and the fiancial stuff.
Getting back to the AN...do you feel that the location of the tumor has to do with the ear pain? I know that mine looks like it is stuffed down all the way to the end of the canal. I read last night that often the hearing can't be saved when the tumor is further down in the ear canal.
Tell me more about how you are and who you are.....We sound a bit like clones in our experience. Tell me about job hunting and the things you are facing.
Keeping busy does help(sometimes)avoidance does help(sometimes)finding laughter does help(sometimes).
Hi Lisa, your not alone.
Main earpain I had on my then notknown AN side was it hurt BAD and SHARP when I did a wax flush and the water hit my membrane..
then at hearing test-when they turned the volume up=pain from the vibrations. ENT decided MRI and thats how I got to where I am now.
my main concern was not pain nor hearing loss.
It was compressing my cerebellum and spinal cord and those are the cpu's of the body.
Hi there Lisa
Hope you are feeling fine today. My ear is giving me a bit of jip today, not so much pain, the other symptoms, pressure in the ear and tinnitus, feeling a bit out of it in general, and thats without a drink! Have been keeping busy doing some painting (art), i had a painting and easel set given to me for Christmas last year and had never gotten round to using it!! But as i have some time on my hands thought i would give it a go, im finding it very relaxing to do.
My two kids are grown up, 26 and 25, i had them young, im 45 now, i like to think a young 45! So its nice that i have the freedom i dont have to worry about them so much. They have left home now and have their own lives.
If you want to email me you are more than welcome.
cheerio for now
best wishes to everyone.Ã‚Â Ã‚Â :)
It appears we have a lot in common! I was also diagnosed in August of this year with a 1cm x 7mm x 7mm on the right side. I have ear pain that comes and goesÃ¢â‚¬Â¦ like a sharp shooting pain but nothing that is pushing me into surgery. My consult was with Dr. Sismanis at MCV as well and he also recommended for me to watch and wait; a decision IÃ¢â‚¬â„¢m comfortable with for now. I also have a daughter but she isnÃ¢â‚¬â„¢t quite ready for college; she just turned a year old in October.
Are you close to the Roanoke area?
No, I'm not at all near you but I would love to visit there sometime. My dearest friend who is a great support to me grew up there. I'm about half way between D.C. and Richmond. I'd love to meet you sometime and know how you are doing. There's a great place for soup somewhere in that city.
Right now I am also in the waiting game. I'm not quite as comfortable about it but presently I plan on waiting until end of Feb. for my next MRI. I hope I don't get driven nuts with all of the pain and balance things until then. I work full time and a half and I've found myself so unable to do the same pace that I am used to. Also ...I'm trying to time things for when my Little girl (ha, ha....18 year old... is home from college). I'm really going to need someone home who can drive and stick around if I need any help. I have friends who have offered but I still think it would be a good idea.
Let me know your feelings about the doctors visit if possible. I'm so confused about making the right choice. I hope that you are not as see-sawing as I am.
Good to hear from you....enjoy every moment with that little one of yours. They grow up so fast.
Hi Lisa! My brother in law is in Richmond. We don't head that way very often but next time we do I'll shoot you an IM and let you know... maybe we can met up!
I do hope you can wait out the pain as well; it must be difficult. I agree completely that you should wait until your daughter is home. Your friends are wonderful for offering their assistance, and I'm sure you will need it, but it will be more comforting to know someone is there with you 24/7.
I get my next MRI in Feb as well... we will have to compare notes ;)
We sure should keep in touch. I was diagnosed on August 23rd, it would have been earier but I had a vacation planned and felt that rest was in order. Boy am I glad I did that without this knowledge.
I'm feeling today uncomfortable waiting. I've been much, much dizzier than I have in the past few months. Trying to get all of my holiday gifts has proven a bit more difficult because of this. And last night I nearly fell down the steps to my house. I've generally always been a peppy person but today I'm feeling rather blue. :-[
To Everyone here on this forum......
I need some coping cheer.....Share with me some of your funny''''''s ....stories.
I have my toy wing up brain with an X marks the spot but it's not doing it for me tonight.
I'm sorry you were having a bad evening and hope you are back to yourself soon! If you need to chat just shoot me an personal message!
1.5cm questionable Gamma knife failure... have been to UCLA,House, & Scull Base Instatute. If ou need help finding resoces here in LA please post. Will be glad to help. Try not to rush into surgery if you can hold on.
Hi Lisa and welcome....
Ok, first step to handling a new AN diagnosis..... breathe.. :)Ã‚Â Just breathe.....Ã‚Â I promise you, it helps :)
By sharing and posting here, you are doing the best first step you can... you are reaching out to other rare, terrific souls that truly do "understand" when others around you can't.Ã‚Â I know it can seem overwhelming at times, but truly.... take your time as you do have time (based on the size of your AN).Ã‚Â I see that you are symptomatic and it can be overwhelming, but by reading the boards here, asking questions, taking that deep breath (ok, breathe with me now... in through the nose... now.. hold it.... ok, exhale through the mouth... repeat 3 more times... :) ) and self education will bring you the answers (and inner peace) you need to help you along... plus, we serve up a great mug o' grog on the Veranda Deck when needed :)
Hang in there, welcome again and know that we truly are here for you.
Hey Lisa: I'm really lucky- I don't have ear pain, just a ringing - tintinitus (spelling?).Ã‚Â I do have some throbbing on occassion along my jaw line.Ã‚Â But I would agree with the group and do lots of research. The more you know, the better you will feel about your desicion.Ã‚Â I went into the doctor for congestion out of all things and came out with this! But I also think the medical community as a whole is all about surgery, problem being they know the effects of surgery but they don't know the full effects of radiation (other than a 10 year time frame). And I think doctors given liability and mal-practice want to suggest the options they know are tried and true.Ã‚Â Keep reading this website- throughout the strings you will find something that applies to you.Ã‚Â Take care!
Hi laura ....I was just diagnosed with 1.2 cm AN in Dec 2006....in my right ear .....I have pain also from time to time .......but mainly dizziness and fatigue .....I truely wish you all the best ....I was told I could wait ....and moniter it .....but the surgeon I talked with ...I didn't seem to comfortable with ....you have came to the right place ....alot of really sweet people on here ....I have really been fighting with depression ...it has helped reading things on here and not feeling alone.
Lisa I live in Salem ....Roanoke County.....where are you from ?