ANA Discussion Forum
Archive => Archives => Topic started by: thornapple on September 12, 2006, 09:20:48 pm
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Hi. Nice to meet you all.
I was just diagnosed, after being told I didn't have an AN for almost six years. My first MRI with contrast was five years ago and they didn't find it....so I spent the last five years thinking, "Well, at least I don't have that."
Only, I do. I got fed up with the platitudes of my previoius ENTs and found myself an otoneurologist who ordered a new MRI. This doctor was much more thorough, and found it where it has been all along. So now I am in shock and panic.
My tumor is INSIDE the cochlea (nothing normal about me) and I don't have much information other than that so far. A rare incidence of a rare tumor.
I am mourning my hearing and dreading the coming ordeals. I don't feel well much of the time and have the usual physical and cognitive difficulties that vestibular disorders present. I have already had lifestyle changes due to my balance, hearing and tiredness issues. I don't expect things to get better....am I right?
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Thornapple:
Sorry to hear that you've joined our club. The diagnosis is shocking and disturbing. Fortunately, we have several treatment options to choose from. So get informed about them, know what the risks/rewards are, and make the choice that's best for you. Treatments will not restore hearing, eliminate balance issues, or stop the ringing. But they aren't as bad as you seem to think they are. All things considered, if you're destined to get a brain tumor, this is the one to choose. It's slow growing, treatable, and in most cases not life threatening. Most of us go one to live happy and fulfilling lives. So will you!
Keep us posted on what you learn and what you decide to do. You'll find a very knowledgeable support group here to help you through it.
-Labott
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Thornapple: You will not regain what is lost (or highly unlikely) but isn't it nice to know after all these years what is wrong?
I too was misdiagnosed for about 5 years and basically seen as "psycho" and (unknown to me) my parents began to believe I was a substance abuser (I was on major pain killers and sleeping pills). I actually felt a great sence of relief when the tumor was found that my suffering was going to end.
No life after treatment is not 100% but before diagnoses it wasn't 100% either and I think it is far easier to deal with the after effects of the surgery than symptoms for which I didn't know the cause and "nobody" believed there to be a "real" cause for.
Kathleen
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I understand your worries, in one sense you may get better
- basically having two balance nerves one of which is mis-firing
often causes more problems than just one - which works OK.
Yes you have to adjust post-treatment
but given time things improve.
My own experiances with hearing are similar - I have lost
the distorted sound from the left side - so overall
the useful day to day hearing has improved (though technically unchanged)
So, post-op you may feel "Yuk" for a while
but given time yes it will get better
Best regards
Tony
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Good morning thornapple:
Sorry you need to be here. Many of us were not diagnosed until much later than we should have. We KNEW something was wrong in there.ÂÂ
Where do you live? Do you like this new Dr? And what did he/she recommend you do? Is the tumor still small?
The shock part does wear off. Once you have your consults re: radiation and surgery you will want to get it over with and move on.ÂÂ
You can write to me any time if you have surgical questions, I don't know anything about radiation but many on this forum do.
Best of luck, Kathy
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It's lovely to hear from all of you. Well..."hear". Heh heh heh.
I, too, was offered misdiagnoses and prozac, so I wouldn't care that I don't feel well, I guess, or because various medical people thought my symptoms must be from depression. I have often been too tired to be pushy about it but every now and then I would just get pissed off and go back to the fight to get someone to figure out WHAT this was. The last diagnosis I had was eustachian tube dysfunction!!!!!
This time, with the increase in symptoms, I changed my primary care physician to a new guy (the old one was blowing me off) and asked him to give me a referral to a new otoneurologist instead of my last ENT, because I had discovered that an otoneurologist was the best choice for someone with vestibular disorders, and not some ENT who dealt primarily with profoundly deaf children. To that ENT, I was a hobby. To the otoneurologist, I was a challenge, a fun brainiac puzzle which he was able to solve, and I am feeling great relief to be one of his patients. It is always worthwhile to find the right medical care!
over the years, the docs have thought I was malingering; my co-workers are the ones who think I am psycho, because when I have asked them to make allowances for my developing hearing and balance problems, they have been--well--classic cases of inconsiderateness, and it really made me angry. Some of them thought I was faking it.
I am very pleased with this doctor. He is brilliant, and I am extremely grateful that he is so competent. However, acoustic schwannomas are not his specialty; balance issues and vestibular disorders are. He thinks I should leave the tumor alone because he thinks (from his literature review) that if it fills up the cochlea it will stop growing, and I will be able to adjust gradually to one-sided deafness and balance loss. He thinks I should avoid surgery, because that would produce instant deafness and balance issues, and would be traumatic.
I think this plan has a great deal to recommend it, and I don't mind having "slinky" in my cochlea (yeah, we named it) as long as it doesn't get out.
I intend to get a couple of specialist's opinions of what is thought of this agenda. I realize that if you ask a surgeon what to do, he or she will say "cut it out", and if you ask a radiological specialist what to do, he/she will say "kill it".
I also ordered up my five year old MRI to have the second radiologist review it. My suspicion is that "slinky" is there, and the first radiologist missed it. I also plan to visit with my second ENT, who never ordered another MRI, even though my ABR test was abnormal on the right side. I'm not vindictive; I am a teacher. They didn't do their jobs well enough to help me. If I don't tell them what they missed, they will go on preening themselves, thinking they are just the coolest guys since sliced bread, and other people will end up misdiagnosed.
I think I will go dancing this weekend while I still can. I may have to sit a lot of them out, and I may fall down, but so what? I'll be dancing!
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Hi Thornapple,
May I suggest that before you make a final decision, send your films out to House Ear Clinic in L.A. They will give you a free phone consultation. I was very happy with Dr. Brackmann but there are many good doctors out there. Their website is www.hei.org they just about wrote the book on Acustic Neuromas. Keep a postive attitude and hang in there. We are all here to help, any questions please feel free to email me. Ann
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Welll, I knew that last post was coming!!!!!!
And I'm glad it did. It is very importanat to get your mri in the hands of really experienced Dr.s....
Desilu is giving very good advice and I do hope you will do that.
Read up and you will understand why!!! I think you will feel much better when you have more informed options...
TAke care,
Pattibobatti
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Thornapple: To believe that when an AN fills the cochlea it will stop going is wrong, once it fills the cochlea it will then grow out into the space outside of it (further into you head) and eventually put pressure on the lobes of your brain. This is not something to hold onto hope it will "just stop growing" and requires regular monitoring if one is not wanting treatment at this small stage. Just remember the small the tumor the more options you have for treatment.
Kathleen
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This doctor has found published cases in medical literature of instances where, once it fills the cochlea, a tumor has stopped growing. Of course, I understand that doesn't mean it will happen that way with me, no matter what this doctor has discovered in the literature. I think I expressed that pretty clearly. That is why I am seeking other opinions.
I have been diagnosed for five days. I am pretty sure he has regular monitoring in mind. In five days, there has not been an opportunity to set up a monitoring schedule. I expect there will be another MRI in 6 months, and then an annual MRI.
I have no idea how big the tumor is at this point. I have not seen the flms or met with the doctor in his office to go over the written radiology report.ÂÂ
I HAVE "read up" extensively, studied this five years ago at length and again recently, and fortunately know anatomy, biology, physiology, medical terms, prognosis, treatment, cytology, surgical approaches. I have been to and read most of about 75 websites in the last five days and already am in contact with someone at Johns Hopkins to inquire about their procedures. I also, amazingly enough, have two friends who have each had an acoustic schwannoma surgically removed.
I am obtaining all my records and films and will be deciding where to go for second and third opinions, etc. in the next few weeks. Once again, it has been five days. Within eight weeks, I expect to have at least two other reviews of my case and a complete encyclopedia on my tumor. Right now, I am new...but I ain't stupid. ;D ;D ;D
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Howdy again thornapple:
I can still dance.  I don't do a whole lot of spinning but I can do it. ÂÂ
Dance your butt off this weekend and let us know how your consults go.
Kathy
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Hi thorn and welcome.
You obviously have a very unusual situation where the growth in in the cochlea.  As much reading and talking and such, I'm glad to hear that you feel comfortable with your doctor, as for me, that is priortiy in any medical situation.
As you are fresh/confirmed diagnosed, please obtain copies of your MRI and MRI report by the radiologist.  AN's are known (primarily) for being slow growing, but many (especially for young folks), they tend to be more aggressive in growth (as Taylor, Chris, etc here can attest as they are in their teens and 20s and had rapid growing AN's, as well as mine and I'm in my *coff* 40's).  Only mother nature will know how fast your's will grow, so follow up MRI's are very important, as you know... but being your own best patient advocate is another.
I researched and researched and cried and carried on, all leading up to my treatment this past April.  Do not take anything for granted. I also sent my films to House Clinic for a phone consult  with Dr. Brackmann... he gave me his reasons for microsurgery, as well as my own brain surgeon here in Boston, Dr. Peter Black... I also researched radiosurgery extensively and for me, I made the best possible decision I could.
Everyone here that has been active for a while will share that "individual results may vary" and around here, they certainly do.
Growths are growths, regardless of where in the body and what type.  Trust me, I have more than I care to share here (many here know my "growth" histories).  I have learned that no growth is to be ignored or thought of as "well, maybe it just won't grow any further".  I know that sounds crass, but as one with too many growths in my body, I have to note this, based on experience, that I know you are not stupid, so please do not assume.  Your AN needs attention and at some point (and if it is slow growing for you, all the better), it will probably require further intervention.
Based on what you share here, I have faith in you to continue your education on all options, all possibilities, all potential outcomes. I have faith in you to ask questions to those here that do know and understand what it is to be in these shoes, many of us post treatment (all options).  I have faith in you to know that we are a terrific sounding board and shoulder and serve up watered down drinks, but most of all, it's those of us that live through it daily (and not the ones that treat and then head home to a different life come end of the day) that can share the most.
Hang in there... we are here for you.
Phyllis
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FORGIVE ME BUT IT SOUNDS LIKE YOU HAVE AN ATTITUDE. WE HAVE ALL BEEN THROUGH A LOT. PLEASE LET ME KNOW THAT I AM WRONG
PATTIBOBATTI
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Patti, can you please clarify who that comment was to? Thanks.
Phyl
FORGIVE ME BUT IT SOUNDS LIKE YOU HAVE AN ATTITUDE. WE HAVE ALL BEEN THROUGH A LOT. PLEASE LET ME KNOW THAT I AM WRONG
PATTIBOBATTI
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phyll,
This was not intended towards you
pattibobatti
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thanks Patti for the clarification. Appreciated.
Phyl
phyll,
This was not intended towards you
pattibobatti
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Hi,
I'm so sorry you have this problem.
I wanted to say how awful it can be having a tumour and no one "listening" to you for so many years, such that while you search for answers you see your whole life turn upside down, like more symptoms and wave goodbye to your career etc.
I did check back to see your first post as I wondered if you were new or had posted before.
I hope you get better answers and help than you posted so far.... how big is your An now? do you have a good doctor now? i hope you have a good doc following your case now....
Do write in more. There are plenty of people here who have gone through all sorts of things in their own journeys with their Ans.
let them help.
best wishes,
Windsong
Hi. Nice to meet you all.
I was just diagnosed, after being told I didn't have an AN for almost six years. My first MRI with contrast was five years ago and they didn't find it....so I spent the last five years thinking, "Well, at least I don't have that."
Only, I do. I got fed up with the platitudes of my previoius ENTs and found myself an otoneurologist who ordered a new MRI. This doctor was much more thorough, and found it where it has been all along. So now I am in shock and panic.
My tumor is INSIDE the cochlea (nothing normal about me) and I don't have much information other than that so far. A rare incidence of a rare tumor.
I am mourning my hearing and dreading the coming ordeals. I don't feel well much of the time and have the usual physical and cognitive difficulties that vestibular disorders present. I have already had lifestyle changes due to my balance, hearing and tiredness issues. I don't expect things to get better....am I right?
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Well, it's the next morning and after reading these few posts again, I think I am the one with the attitude. Don't have one now, though!!
I do apologize for my last post. I now think I was wrong.
Pattibobatti
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Hi thornapple,
I see that you are on the website now. Would you let me apologize to you in a personal message?
Thanks
Pattibobatti
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No, it was intended towards me. What kind of support forum is this?
I have to say I don't find this remotely welcoming;
1. people who do not actually read my posts before responding so they don't see that I am already doing what they just told me to do, or already answered the question they just asked.
2. people who lecture me without reading my posts.
3. people making snide remarks about the comments of other forum members.
4. accusations of attitude.
If this is a support forum, how supportive do you think this kind of behavior can possibly be to someone newly diagnosed after years of illness? Someone who is experiencing the same shock and anxiety that you faced when you found out? You have all been through this yourselves. What's the matter with you people?
I have a life that has been going downhill for years due to an undiagnosed tumor. I have a very successful and satisfying career that is going to be put on hold, maybe derailed completely, while I figure out how to deal medically and financially with this crisis in my life. I am faced with figuring out how to travel all over the country (with no money) to get the medical care I will need. If I lose or have to leave my job, I have no health insurance. In the last four weeks I lost my hearing to the point that I can't understand people half the time.  My family is worried sick and has been for years; now that they know I have a tumor, they are terrified. I can't know at this point what the outcome will be; disability? A return to my old life? Facial droop? Brain damage? It's certainly going to be one-sided deafness, because the medical profession screwed up until it was too late to save it. I have balance issues, work issues, tiredness issues, hearing issues, money issues, and may be facing brain surgery that will cause more problems.
Didn't this happen to you people, too?
I can't take this bickering, lecturing, and infighting right now. I am too emotionally fragile. I hope you guys figure out how to fix the behavior on this forum. If I experience any more of this I will need additional counseling for emotional distress. I will read here, but I will not post here again.
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Dear Thornapple,
This forum did nothing wrong. I did. The forum is a wonderful place to come to and you only have to read a small amount on here to see that people really do care about you. This forum has helped me very much as well as many other people. It will continue to be a great forum.
I posted a comment that was way out of line. I was wrong. I know it now and I am sorry. You should be angry with me but please don't include the rest of these wonderful people in your anger. I would like to make it up to you, also. Please let me know if there is anything that I could do to help resolve this.
Pattibobatti
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You are mentioning rapid loss of your hearing. Have you mentioned this to your doctor with the possibilty of getting on a dose of steroids as this is used frequently with sudden hearing loss and may bring some back. I have never had to do this but many have with good results so might be something to check into. Cheryl R.
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sorry to hear this discouragement with us here, thorn. We truly are very supportive and as one that went through treatment recently, I have to say the gang here was more supportive than any others I know.
Were you able to determine the exact size of the AN? If you are leaning towards microsurgery, not knowing where you are based, what acute care facilities are you looking into? Many here can make recommendations on dr's at certain facilities of interest to you.
Phyl
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Thornapple:
I certainly sympathize with your plight.  Your symptoms went on far too long without proper diagnosis, and I'm so sorry that happened to you.  I thought I was annoyed because it took a year before I finally got an MRI to determine what was causing my hearing loss, tinnitus, ear fullness.  Finally got the facial numbness and that's when I got the MRI.  I was being treated for allergies!  I am so sorry you got a bad impression of this forum.  This really is a great place for support and information.  I truly hope that everything eventually works out for you and that your outcome will not be as dire as you imagine. We have often wondered, on this forum, why we use the term "benign".  It may not be cancerous, but AN's can be anything but benign - they can be devastating. I wish you the best of luck in your treatment and recovery.
Sue in Vancouver
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I know first hand what it is to go through years misdiagnosed with my An. During those years I continued to lose hearing, continued to have balance problems, found it harder and harder struggling in my own career, lost that battle, fought for an income on which to live, dealt with having to find and pay for insurance, sold a home, dealt with brush offs from some docs over time, saw my life as i knew it shrink and shrink and shrink. It was not easy. That is why i "heard" what you were saying.
One unfortunate thing even post An treatment is that I forget short term memory things. Sometimes that means that in the middle of a post i forget what I wanted to say.
I can't even really give advice on the best way to deal with career and financial situations that come along with a health issue. All i know is that some how during my years of coping, things ended up being relatively ok but I will not totally ever get over the loss of career. People don't talk much about those side issues which is ok as certainly once we know we have an An, all of our energies are directed to finding more info about it, meeting various treatment doctors, making decisions on what to do etc.... none of it is easy.
It does sound like you are gathering all the pertinent information for your own particular An.
Good luck in your decision making and God bless,
best wishes,
Windsong
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Thornapple: The only thing I have to say.....when it comes to this forum.....take what you want and leave the rest.
You can find a lot of "food for thought" here, real understnading from where you're coming and knowledge but like everything in life that involves "other people" there will be things you don't like, try not to take offence and remember that people here are here either for help themselves or to help others and we are not "professionals" just folks who've "been there, done that" or "going there to do that".
Kathleen
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Hello, I am new here but am not a newbie to An removal, I had my turmor removed 12 years ago and it was very tramatic , I am very sorry for how you are feeling , it is very scary to go thru things that have so many side effect, so many things that we don't know if they will happen or not! you have to trust in your doctor's to the best that they can do and when it is all done and you are awake then you deal with the things that are before you, if you worry about all the things that may happen but may not happen you are using up your energy on the wrong things! I know it is all scary and it is all unknown to any of us and everyone who goes thru this. I walked away from a 2month old and a 5 year old with the unknown ahead of me, after a 17 hour surgery I had some challenges ahead of me, I learned to walk again, use my hands, eat, I have no hearing in my left ear, I still have a balance problem, dry eye, but I would rather have these few things and be going forward with my family and friends. We all have challenges and issues May God bless you and give you the stength and courage.
Nickie
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Good evening Thornapple!
All of these posts are really concerned about you. Would you consider posting so that we could try this again!!
It's up to you! Hope you are having a nice evening
Pattibobatti