ANA Discussion Forum
General Category => Inquiries => Topic started by: Cindyswart on May 23, 2011, 02:02:43 pm
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Hello to all!! I am also newly diagnosed. I have now seen a neurologist, a neurosurgeon, an otolaryngologist, all of whom say to wait and watch, and finally an AN specialist who is ready to do surgery. My AN is 1.5 x 1.9 x 2.0. I have facial desensitization, the taste on the right side of my tongue is numb ( tumor is pushing slightly into the brain stem) and the hearing in my right ear is diminished. I am a ballerina so balance is an issue, although I cope well. I am given the chance of 97% for no facial paralysis and my hearing should be fine after surgery. I just don't know how quickly I need to move on this. My neurologist says that I should see the second MRI in October before making my decision. I am 51 and he feels that my AN could stop growing. this is truly the hardest decision I have ever made and all opinions are different. Anyone with words of wisdom chime in!! ???
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Hi, Cindy ~
I'm sorry you're dealing with an acoustic neuroma diagnosis but welcome to the ANA discussion forums. Although your AN is relatively small, it's location is critical and I would suggest considering addressing it soon if the October MRI scan indicates growth. Radiation is an option and although non-invasive, it does carry some risks, as a reading of the post-radiation threads will show. Surgery is always an option, if your doctor agrees, but of course, that, too, carries inherent risks. There simply is no 'magic bullet' for this situation but the majority of AN patients do quite well. From what you doctor has stated your prognosis looks very good. Of course, should the tumor cease growing on it's own, that would be the very best scenario. It is fairly rare, but does happen - and I hope that it happens for you. Please consider these forums a resource and a source of support as you struggle with this AN business.
Jim
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Cindy,
I just wanted mine out. It was something that did not belong there and I wanted it gone as soon as I could get scheduled. But I understand your concerns and we are all different. One thing to think about, is that you said it is pushing slightly on the brain stem. If it grows, that could cause problems. If your ballet performances are not being affected, you may want to wait until October. You have done your homework, visiting all 3 doctors and the AN specialist. Get all of the information you can before you make a decision. This forum is great and you will read about all kinds of scenarios. Good luck to you and keep up updated.
Sandy
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My two cents, and I'm sure not everyone will agree, have treatment sooner rather than later.
If you have the chance of saving your hearing, don't let that chance get away from you. I never realized how precious my hearing was until I lost 1/2 of it.
Although ANs do grow slowly, and tend to grow slower with age, I'm not sure you can bet on that happening. 51 is relatively young; if you were 71 it might be a different story.
At the very least, you definitely need to monitor your AN through MRIs, and take action if there is growth, if you experience new symptoms, or if your current symptoms get worse.
Jan
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Greetings Cindy,
I have an AN about the same size as yours and was diagnosed on April 14th. I'm doing an aggressive acupuncture treatment at the moment. Don't know if it will work, but rushing into surgery, just didn't feel right to me and the chances for saving my hearing with surgery are 50/50 right now. My hearing is a big gamble with or without surgery it seems. I will have another MRI July 14th to see what my "marble" looks like after my acupuncture/electro therapy... In the meantime I am monitoring my hearing with hearing tests. I describe my "alternative approach" in more detail on Derek's thread: http://www.anausa.org/smf/index.php?topic=3791.135
Curious... what type of doctor was the AN specialist?
Best,
Lisa M
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HI Lisa, The dr that I saw was at Carolina Ear and Hearing Clinic. They have a website and I went there first for research. Last evening I spoke with the Otologic Nurse and she gave some very good info. Because my AN has not yet descended into the workings of the inner ear, my possible outcome for restored hearing is very good. When they tested my hearing, in the soundproof booth, my hearing is actually very good, not loss, just diminished. Therefore, they feel that removing my "wart" now will ensure me of a very good outcome. I was also very concerned about facial paralysis. I was given a 97% chance of a good outcome on that also. My concerns now are that if I wait I will be jeopardizing my chances concerning these issues. Soooooo, I have asked them to the schedule the surgery, looks like maybe October. This surgeon is a very busy man! If there is one thing that I am learning from this journey- your health is your responsibility! Read, read, read, ask, ask, ask! I have asked for things that I never thought I would receive, especially from the medical community. And so far they have obliged. I thank everyone for posting- it is wonderful to feel accepted and heard. I will keep my MRI appointment in July, I just have to know what the "wart" is up to! But I feel some peace that this is finally moving forward.
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Hey Ballerina!
Just had my AN removed by Dr. McElveen 10/10 - I did not wait. I did not want to run the risk of any facial paralysis if left to grow. If you are already having some facial desensitization, that would concern me. Also, if there is any chance of saving even partial hearing, that would be an excellent step in helping maintain some of your balance. I was not able to retain any in my right ear - 100% gone.
Balance will be an issue at first but gets better with time. I have actually forgotten about that issue unless I occasionally run in the wall :) With you being a ballerina, you will probably adapt more than the rest of us since you are more in tune with balance issues any way.
Good Luck and Keep us posted!
Misty
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Thanks Misty! It's nice to speak with someone who has actually had him do the surgery. His positive attitude about this whole thing was just to hard to ignor. I am just praying for quick recovery, i am not easily held down and I feel that I will be a bit mpatient to have my life back. I wokr a lot from phone and computer so I think I will do just fine. God has instructed me to cease to worry, that he is in control. That is the train I am on now. I wil stay in touch.
Cindy
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Hey Misty!
Tell me about your recovery time!
Thanks, Cindy
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I actually agree with Jan!
Best of Luck to you...you'll make the right decision...!
Take Care!
;)
Doc
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Thanks Doc! It's wonderful to consider myself so young at 51!! I am determined to get this done and recover as quickly as possible. isn't it funny how something like this makes you appreciate what and who you are!! i just want to get back to being me instead of stagger girl!
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Cindy, my two cents, I would have it removed. My tumor was on my brain stem and was a pretty good size. I lost my hearing totally and I have facial paralysis and had double vision. If I had learned about my tumor earlier I possibly could have avoided some of these issues that I have. I recovered nicely in the sense that I was back to work within a few months (I had two add'l surgeries but won't go there and bore you with that stuff). I am in martial arts and I believe my strength helped me recover quicker. You being a dancer your legs are probably very strong and muscular. That will help you a great deal in your recovery. Hang in there and we will keep you in our prayers!
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I do think I would have had mine done instead of watch and wait because the pressure I have is terrible and I could have avoided going through this had I opted for surgery. Of course surgery is no guarantee that the nerves won't be compromised, that is always a risk. Do your research, go to your consults and you will feel better about what is best for you. I think being a ballerina probably has given you superior balance which will make the compromise on your balance nerve less of a problem. Best of luck with your options and treatment.
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Cindy,
Not to rain on your parade, but you might want to question your doctors a little more on keeping your hearing after the operation. My tumor was 12.3mm x 15.2mm x15.2mm on Dec 1, 2010, and was removed on April 20, 2011 (5 weeks ago) at Mass General. The lead surgeon said, "This is fairly small. Should be an easy surgery." The surgery was 10 hours and I'm now Single Sided Deaf (SSD). At least I was told there was still a 50-50 chance I could lose the hearing. I'm not trying to scare you, but I think one thing you find as you start doing research is that the doctors all seem to have different opinions on what "easy" or "good" mean. The first surgeon I was referred to said "We should just do a translab because your hearings not very good to start with". I did research on what the numbers on hearing test meant and my hearing was on the line between good and excellent. At least the doctors at MGH agreed my hearing was worth trying to save. I am also into martial arts and yoga, and balance was my main concern, and while it's not quite as good as pre-op (I'm only 5 weeks post-op) I think it's pretty good, some I'm pretty happy with the result.
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Thanks Doc! It's wonderful to consider myself so young at 51!! I am determined to get this done and recover as quickly as possible. isn't it funny how something like this makes you appreciate what and who you are!! i just want to get back to being me instead of stagger girl!
Just so you know, having surgery, no matter how small your AN might be, is no cake walk...not even close. My AN Surgery wasn't the first major surgery I ever had (Open Heart in 2008), but I can honestly tell you it kicked my butt, and good. I was in hospital for three weeks, which included in-patient rehab to get me kinda sorta walking again before going home. Remember, I had a Golf Ball sized Tumor. I was back to work at my desk 10 days after being discharged. Not what you'd call normal but getting back to my routine was necessary for me...we all move differently through the AN experience.
If I was allowed to share only one piece of advise with anyone dealing with this nasty AN thing, it would be not to let the Boohoo take hold...that wouldn't be wise. Attitude is 90% of the recovery process...in my "experienced" opinion. The rest is paying attention to your Doctor(s), follow their instructions and one more thing, smile! Mine was half-a**ed in the beginning and still is (left side facial paralysis).
Take Care!
;)
Doc
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Cindy,
With your background as a dancer, you should do well. The recovery period for me was not bad. I went back to teaching kindergarten in 2 months. I'm glad you researched and are happy with your decision. In the end, you are the one that has to feel good about the doctor and which decision you have made. We'll be here for you if you have any questions. The people who have been here a while are so good at helping. Good luck to you.
Sandy
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Hello Cindy
I am typically a huge proponent of the W&W brigade (I am 39 years old, small tumor all in the IAC [ear canal, far away from the brain], decent hearing, active, young children, no balance issues etc.). I think with small asymptomatic tumors W&W is perfect - I have research which sindicates over 65% of small tumors don't grow in 10+ years. So, W&W has tremendous advantages if you meet the criteria... but also risk of hearing loss and obviously continuous, yearly to every two year monitoring, so not a free ride! (and, heck the sucker may grow!!!)
However, your tumor isn't exactly small, isn't 'far' away from the brain stem (all relative I guess, it is just a couple of cm) and is causing you weakness/numbness in your face. While no one really knows, my unprofessional guess is you are unlikely to make 10 years (or more) before the tumor will need to be managed.
You do have time. If your doctors suggest a 6 month MRI - take the time to do your research and get comfortable with the risks, and then move forward at an appropriate time for you. This forum has a great variety of experiences and backgrounds to help guide you in your decision.
Good luck.
Ann
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Hi Cindy and her "wart",
I wanted to share with you that I think being a ballerina does not necessarily give you better balance, but you do know alot of "tricks" to keep your balance. After my surgery I found that I was calling upon ballet skills I hadn't used since I was 16 years old. My vestibular nerve was cut during surgery to attempt to preserve hearing, so regaining/relearning balance took some work. But I remembered how to "spot" during pirouettes, which essentially involves using the eyes to trick the brain into thinking you are not spinning around. Same tricks involved in learning to use eyes to maintain balance after surgery.
I don't do ballet anymore, but I have been able to swing dance/jitterbug with my husband. Overall my balance is fine, but if I don't concentrate I bump into things. Not a big deal.
The decisions we have to make regarding the treatment/surgery for an AN are very difficult. Luckily we have at least some time to research, etc. Have you considerred gettting one more opinion? Someone suggested to me that I have a consultation from the docs at House Ear Institute in LA; I did and that was probably the best thing I had done. They will do a free phone consultation for anyone. Rick Friedman, one of their neurotologists, spent a long time on the phone with me several times just speaking to me in a very straight-forward, respectful, and friendly manner. I had been on the fence after getting differing opinions from several doctors in my own city. After speaking with Doctor Friedman I felt very clear about what I wanted to do.
I wish you the best! You are not alone; keep in touch with the discussion board peeps. We are here!
Suz
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Hi Cindy!
Just wanted to welcome you to the site, and the fact that you are a ballerina is especially interesting to me.
I will be interested to hear how you do if and when you have surgery, post op.
My sister is actually writing a novel about a dancer who gets an AN. She is using my AN as a part of the book, and her experiences with dancing, so I am especially interested to see how you do!
Anyway, continue your research, this is the hardest part trying to make that decision, and you will feel much better when that decision is made :)
Maureen
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How Novel! A book! Love it! It is very disheartening sometimes to stumble the way that I do, But I am a huge proponent of laughter, so laughing at myself is easy! I did get the second opinion and surgery it is. I will keep all updated as we go. The headaches are better thanks to the steroid that my neuro gave me. so for now I am W&W for that day. Thanks for all the good wishes!
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Well it is time for an update. I have been on prednisone for about 3 weeks now and am starting to step it down. No headaches anymore- doc thinks that there must have been some swelling and the pressure was causing the headaches. I met with my neurosurgeon and he wants to move the surgery up so my date is August 23. My hearing turns out is no damaged, only diminished, so he feels it is better to get this done while I have not inner ear involvement, better odds on how much of my hearing can be saved. As for the facial nerve, he is giving me very good odds that that will be just fine. So.... I now start preparing for the big day. I will keep you posted...
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Cindy ~
Thanks for the update. Glad to learn that you're doing better. You have another 60 days before the surgery so plenty of time to prepare. Just ask if you need any information/suggestions.
Jim
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Cindy,
Good, the hard part is over. Getting that decision and date. Just try to stay busy and focused on what you love doing (dancing?~still able to do that?). Once the date gets closer, we'd be happy to tell you what to KIND of expect. Everyone is different.
Take care now,
Maureen
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So, it is almost here, surgery is Tuesday morning. Most of life is normal, but I am not sleeping. just too much to think about. I am not second guessing my decision, just nervous about the outcome. I have been promised very good odds at hearing retention and no facial paralysis, but I know that until they actually get in there, there is no way to predict the actual outcome. this waiting is really the pits! par of me wishes that i could just go now...
If any of you have any info regarding post surgery stuff that you wish you had known, pls post!
Waiting....
Cindy
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Cindy:
My doctors layed it all out for me. They informed me about all the possibilities regarding post-surgery life. Hanging out here on this forum certainly helped a great deal.
I'm glad you chose to go ahead and treat your AN. Though our tumors are slow-growing, inflammation alone can cause more damage. What causes this inflammation? I don't know. But that's what led me to get the darn thing out. The longer I waited, the higher the risks of nerves being damaged or of having a complicated surgery.
What surgical approach did you choose? Since you want to save your hearing, I figure it's not translab.
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My surgery will be keyhole, retrosig- my AN in April was 2.5 CM at largest point. They have given me odds of 70% hearing retention and 99% facial retention. I have a wonderful surgeon and great support from family and friends. I am just nervous!
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Cindy ~
Our thoughts and prayers are with you. See you on 'the other side'! :)
Jim
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Have faith in the surgeons, you're going to do great I believe!
Maureen
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In Case you haven't read- I am now post surgery! Life is getting back to normal- AN was three times the size that they thought and totally destroyed my hearing, now SSD on the right side. Was out of the hospital 5 days after a 9 hour surgery, back to work half days in 17 days. I will do half days for another few days then try full days as my stamina permits. The tinnitus happens occasionally as a wooshing sound, but never stays too long. No headaches and my hair is growing back pretty quickly. I know that i made the right decision and I do not regret it. Life is good.
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I know that i made the right decision and I do not regret it. Life is good.
It certainly is, Cindy. I'm delighted to learn that your life is back on track. Thanks for a very uplifting update! :)
Jim
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Cindy,
Glad you are doing well. I left you a voicemail on Sunday night. Call me in the evening when you get a chance.
Leslie
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I'm glad to hear that the surgery went so well!
Curious how your balance and such is coming along. My sister is writing a novel about a ballerina with an AN as mentioned earlier :)
Maureen
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The day before I had surgery they did a test to see if the balance nerve was toast- and it was. they told me that was very good news for me, that it meant that I would have less dizziness and fewer balance problems after surgery. They did in fact have to sever that nerve completely so that fact that I was already compensating was a plus for me. I feel a little wobbly, especially when I am tired but I am already wearing heels so all is well. Fatigue is a factor in everything right now- it lessens a little each day.
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Hello Cindy,
Dr. Fukushima was part of my Skull Base Surgey team too. Surgery was 6 and 1/2 years ago, and I don't think about it very often any more. Know that your symptoms will continue to improve with time.
Regards,
Rob
PS: There is a local ANA group for the Raleigh- Durham area that meets quarterly. It's informative and great fun to talk to others who have gone through the AN experience. Send me a private note if you would like the email address for the contact person.