ANA Discussion Forum
General Category => AN Issues => Topic started by: Milenkas on October 21, 2011, 08:49:10 am
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After 2 years of fullness, ringing, buzzing, tapping, etc. in my right ear, and on and off dizziness, ent ordered an MRI and found a 5mm accoustic neuroma. The noises in my ear are not as bad, but dizziness has gotten much worse.... I called the dr at beginning of week and she sent me to a vestibular therapist. She said if it doesn't help, have to consider surgery...middle fossa approach. Has anyone had this experience with dizziness with such a small tumor? Was surgery helpful? Was therapy helpful? Should I just watch and wait, or just have it removed?
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Hi Milenkas and welcome to this forum .....
If you have read other posts on here, you know that every AN patient is unique as to symptoms related to size of tumor. Much depends upon the exact location and configuration of the tumor. Since ANs start with the growth of Schwann cells on the vestibular nerve, many of us experience balance or disorientation or dizziness symptoms fairly soon.
At 5 mm, you should have all three options open to you ..... wait and watch, radiotherapy, or surgery. Much depends upon how disabling (or rapidly increasing) your symptoms are and your own comfort level.
If you have not already done so, you may want to send for the free information from ANA-USA. See: http://www.anausa.org/index.php/contact-us
These materials contain very valuable information as you research your options and make your decision.
Many thoughts. Clarice
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I was vomiting all the time from the wonkyness. My doc wrote a script for Zofran 4mg and it helped me through the really bad times. Get the generic. Zofran is about $60.00 for each tablet.
I went through at least two years of mild dizzy spells, a family doctor, ENT, a neurologist, and finally an internal medicine doc finally ordered an MRI. My hearing was bad enough that I had translab surgery and gave up my right ear to save my face. It all worked out in my favor.
Sounds like your hearing is still pretty good if he is recommending middle fossa. That is good news. I decided to get surgery right after my AN was found. But that was right after I decided to get radiation, and then changed my mind...probably changed it 2 or 3 times...BIG time decision. Take your time deciding what you are going to do. Make a list of your options, and write down the good and bad of each, read this forum front to back, ask lots of questions. You will find out more here than your doc will be willing to share. All of here have been through what you just starting to go through, and we will share our knowledge and friendship.
James
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Yes, I know a woman who had the same size tumor. Her symptoms were so bad she went ahead and did surgery. All was removed, she is fine. She had Dr. Friedman and Schwartz at House in LA. Vestibular therapy is not going to work when there is a tumor sitting on the nerve. 5mm is very small, if its not much of a bother you could definitely wait a while.
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I'll throw in my two (or three) cents...
Vestibular therapy won't cure your dizziness, but it certainly should help. The more balance exercises you do, the quicker your brain will adapt to and learn to ignore the aberrant balance signals coming from the degraded balance nerve on your AN side. That is, the more you walk and do other exercises that challenge your balance, the more your brain will learn to rely on your sight and the propioceptors in your feet to determine whether you are properly balanced or not.
It is not unusual for a small tumor to be causing such intense balance problems. Many AN sufferers go through the worst of their balance-related symptoms when the tumor is still in its early stage.
You should be in no rush to get your AN treated, as yours is very tiny. You should take the time to fully investigate all of your options -- watch and wait, radiosurgery (GammaKnife), radiotherapy (CyberKnife or FSR/fractionated stereotactic radiation) and microsurgery (surgical resection). Most importantly for now, watch and wait is probably advised until you know whether or not the darn thing is continuing to grow. The only way to know that is to get a followup MRI -- typically six months after the first MRI -- to see if the AN has gotten any bigger. Some ANs don't grow at all over the course of 20 years, in which case (assuming your symptoms stay stable and don't worsen) you may reasonably decide to forego treatment completely. All forms of treatment involve considerable risk, so you shouldn't rush into getting treated, especially with a very small tumor such as yours.
How long can you wait? ANs grow at an average rate of about 2 mm per year, although some don't grow at all (this is rare) and others grow at a much faster clip (this is not common). If your tumor were to grow at the average rate and assuming your AN is currently located inside your internal auditory canal (your doctor probably would've called it a cerebollopontine angle tumor, or CPA tumor for short, if it were growing wholly outside your internal auditory canal), here are the critical timelines to be aware of:
1. You probably have around seven years before it would begin to press on your brain stem; that would make treatment more urgent, but not unmanageable by any means.
2. You would probably have around twelve years before the tumor would be so large (over 3 cm in size) that radiation would be ruled out as a primary treatment. You would then be "stuck" with only one choice: microsurgery (which might be your preferred treatment nonetheless, but it's good to have other options open to you).
So you can see, you probably have years to make a decision and plenty of time to research your options. A sudden growth spurt in the tumor or an increase in your symptoms, however, might compel you to seek treatment sooner rather than later. But even so, there is no urgent need to rush into treatment.
It's important to realize that no form of treatment is going to fully restore your balance and hearing; more likely, it will only prevent further deterioration. And it's possible that microsurgery or radiation would damage your balance and/or hearing further. So again, you should not rush into a decision immediately, especially before you've weighed all your options thoroughly and have determined whether your AN continues to grow.
So step back and breathe. Then comb this forum for information and emotional support. Do your research. The decision you make will determine your quality of life going forward, so take your time and make sure you keep an open mind to all of your options.
Most of all, know that thousands of people have gone before you and have come out of this okay. You too will be okay.
Best wishes,
TW
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(your doctor probably would've called it a cerebollopontine angle tumor, or CPA tumor for short, if it were growing wholly outside your internal auditory canal),
"cerebellopontine" is the correct spelling, in case you search for more info on this. Sorry, my bad.
TW
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thank you for the information. It helps a lot. When the symptoms started a couple years ago, the main problem was the ringing, buzzing and tapping....and occasional dizziness. Now the "noise" in the ear is almost unnoticable and I'm dizzy (A LOT).....and I feel like I'm in a fog most of the time. I am doing therapy and hopefully it helps. I believe the tumor is still in the canal itself. I don't understand why the symptoms have changed so drastically. They used to "come and go" but now the dizziness is not "going".... :o I am concerned that if I wait, my "balance nerves" we'll just be ruined more and then when I finally do surgery, the dizziness will be there forever because of the nerve damage.....
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Hi Milenkas,
I was diagnosed with Meniere's disease back in the 90's. I have a wonderful ring in my head. In the beginning of 2010 I started to have vertigo attacks. They were full spins, if you can picture the whole world spinning. The attacks became very frequent every 5-8 days, very debilitating to the point my face would turn green and I would want to vomit. By the summer the MRI showed I had a small AN, not as small as yours. Last fall I had a middle fossa operation. I went through a long recovery, but the vertigo attacks stopped this past summer. I have lost some hearing, but the ear works, my facial muscles are all working very well. The ring still exists, but that began before the tumor. Many of the senior members will give you some sound advice, but ultimately the decisions are for you to make. For me, the surgery was urgent, I had no quality of life with full spins on a regular basis. With a small tumor, it affords you some time, I suggest you learn as much as you can before making any decisions. This forum is fantastic, and I hope other members weight in with their advice, and suggestions. Stay in touch.
God Bless.
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Just another question......the last 3 weeks my dizziness has steadily increased and some episodes are more intense. Also, right before a bad spell of dizziness, my head starts hurting--like a pulling feeling inside my head, then the dizziness starts. The dizziness lasts about 2 minutes and it feels like I'm on an amusement park ride. (but not fun)......In Sept, MRI showed the an to be 5mm. I am going for vestibular therapy and doing it at home, but dizziness is not letting up.....any insight or advice would be appreciated..... ::)
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Milenkas -
it's a great idea to watch and wait with a small tumor like yours; but when symptoms increase and get to the point where they are having a big effect on your daily life it's probably time to seek treatment.
Have you consulted with a doctor about doing radiation? or just about surgery?
With a tumor this small, depending on the location, radiation might be a good option for you.
It's a very personal choice, but in my opinion something you should definitely look into. You want to know all of your options.
Jan
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thanks for you input. Dr. said if symptoms get worse would recommend middle fossa approach. She feels I am too young for radiation since they don't know the long term (over 20 years) effect of it. I have to go see her next month. The dizziness has gotten worse and I feel "out of it" a lot. I am doing vestibular therapy and hoping it might help. thanks for your concern...
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Hi, Milenkas:
Excuse me, but your doctor is not well-informed regarding radiation and is relying on outdated opinions/reports. (This is common with doctors who do not practice radiation treatments.) GammaKnife radiation has been practiced in the U.S. for close to 45 years. If your doctor doesn't know "the long term (over 20 years) effect of it," they obviously have had blinders on about the 40+-year history of safe and successful GammaKnife treatments because it is very well-known at this point. CyberKnife is very similar to GammaKnife but has not been in use in the U.S. for nearly as long. So if you're concerned about the risk of radiation treatment, look into GammaKnife, which has a decades-long proven track record of safety.
Please do yourself a favor and consult more than just neurosurgeons, most of whom are biased against radiation and/or ignorant about the current data supporting its safe and effective application. To be sure, radiation practitioners are also often biased against microsurgery, as they see it as unsafe, with many more potentially serious complications than radiation. My point is that you owe it to yourself to get the (biased) opinions from both sides (surgery and radiation). Then investigate -- through this forum and other sources -- for yourself the pros and cons of both types of treatments. You cannot implicitly trust only one doctor's opinion. You do so at your own peril.
Strong words, I know. I don't wish to offend. But I've seen too many other patients on this forum make knee-jerk decisions based on the ill-informed advice of one doctor and come to sorely regret terrible outcomes. Do your due diligence. If that still leads you to surgery, then that's your best choice. But make it your choice, not your doctor's.
Sincerely,
TW
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thank you for your concern. I will definitely check into this further!
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Tumbleweed is 100% correct. Not to diss your doc, but she isn't up to speed with treating ANs with radiation.
Get a second opinion from someone who does radiation on ANs.
Jan
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I am going to hae to respectfully disagree with Tumbleweed and Jan. While radiation may have been used for over 40 years, like any new technology, it wasn't used much at first. It took time for it to start being widely used. I do feel it is a good choice if a person decides its right for them. But I also agree with Milenkas's Dr., and my Dr. who said the same, that we don't have a long enough record of using to see what the long term effects would be for a young person such as myself at 34 years old...especially if I am lucky enough to live to 90 or 100 like many in my family history have done.
Its very much a personal choice, and a tough choice. Just take in all the info, do your research, and you will be able to decide whats best for you!
~Heidi
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Statistically speaking, the risk of radiation treatment causing cancer has been shown in scientific surveys to be virtually no greater than the risk to the general public for developing cancer. This statistic comes from decades of surveys by the medical community. How much more of a track record do you need?
For me, it always comes down to a numbers game. If, for example, the general consensus of consulting doctors tells me I have a greater risk -- in percentage terms -- of facial paralysis, hearing loss, balance deficit, cerebrospinal fluid leakage,chronic severe headaches or other quality-of-life-altering side effects with treatment A vs with treatment B, I'm going to go with treatment B to increase my odds of having a rewarding life after treatment. It makes no sense to me to worry about some hypothetical far-in-the-future risk not supported by scientific data and let it move me to accept a higher quantifiable risk immediately at treatment.
For example in my case, the six doctors I consulted all said microsurgery posed a 100% chance of my being completely deaf on the AN side (a sure thing) immediately following surgery, a 1 in 3 chance of permanent facial paralysis and about a 15% chance of debilitating headaches for the rest of my life. With radiation, however, I had about a 40 to 60% chance of deafness after 5 years and only a 1% chance of permanent facial paralysis (and virtually no chance of getting chronic headaches). It didn't make sense for me to accept exponentially higher risks of deafness, facial paralysis and headaches for the next 40 years of my life because I was afraid of developing brain cancer based on theoretical concerns not backed up by scientific data. It makes about as much sense to question the long-term effects of brain surgery; for example, in the case of the retrosigmoid approach, how does prolonged retraction of the cerebellum and hours of toxic anesthesia affect someone decades later?
I'm not saying radiation is always the best choice for everyone. Your consulting doctors are best qualified to tell you the risks posed by each type of treatment. But it is far better, in my opinion, to base your decision on known risks than on unknown theorized risks.
Nobody knows how long they will live. Life is a gift to be enjoyed today. Choose the treatment most likely to preserve your quality of life.
My thoughts only...
Sincerely,
TW
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Welcome in. My tumor when they found it was about 10 mm x 2.3 or so shaped just like a large almond. I already had tinnitus to the point where i didn't really hear on the rt side.
Dizziness ? no.......BUT the more tired i got during the day , the more i lean to the left. As the Dr. explained it , its cause i have no gyroscope of the inner ear working on rt side so brain over compensates for this.
Now in full daylight the eyes help this a lot , but at nite they cant do as much. So i run into walls and furniture when i see it coming and still cant correct.
Driving at nite isn't so bad, but i have found low speed ways home from work as i am often at work until 8 to 9 pm.
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I saw two doctors, one from University Hospitals in Cleveland, and one from Cleveland Clinic. Both dr.'s opinions were the same....thank you everyone for your input.
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Hi Milenkas again.
I posted to you last month. I know what you are going through. As I mentioned in my earlier post, I averaged a vertigo attack every 5-8 days. My visual world would go into full spins that lasted 3-5 minutes, but felt like an eternity. My son said my eyes would vibrate like crazy back and forth ( known as Nystagmus ). Once the attack was over, I would be very nauseous, soaking wet in my own sweat and completely out of it. You might ask your doctor about using meclizine for your dizziness. I didn't take very well to meclizine, and I was put on Xanax, it helped me. But find out about using some form of an antivert medication while you research and make up your mind how to treat your tumor. You are in my prayers that God will guide you through this very diffcult time.
God Bless.
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Thank you! ;D
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dr. called in a precription for mentizine. I took one last night and was wiped out until about 1/2an hour ago....almost 30 hours of feeling out of it, wanting to sleep and extrement dizziness.....Mentizine is not for me... :o
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I also have to disagree with Tumbleweed and Jan regarding ratiation. I had Cyberknife for a 8mm AN Nov. 2010. I was given a HUGE sales job by the CK Dr. Seemed as tho having non invasive would be a better choice. It was not. I have had terrible side effects from the radiation, as it is looking like I most likely am going to need to have it removed. We are waiting for 6 months, have another MRI and make a decision. I have now had to travel to specialist. What I am saying is to get several opinions and then take time to make your decision. I hope this helps some in your decision process.
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kkgriffin, I'm sorry you've had such a tough time post-CK. How long has it been since you were treated? If it was less than about 15 months ago, your "terrible side effects" are to be somewhat expected and should moderate over time. Also, if you were treated less than two years ago, it is probably premature to consider having your AN surgically removed. And who treated you and at what facility? This is more important than the type of treatment, IMO. Brain surgery of any kind, including radio, is a very complex and highly skilled affair, and it makes sense to seek out the doctors with the most experience and the facility with the most accurate and up-to-date equipment.
As I said in my posts, I am not saying radiation is the best treatment for everyone. And no matter how promising the statistics may be, every type of treatment results occasionally in a poor outcome (that's true even for far simpler and less serious procedures). The point I was trying to make is there is no basis in fact for concerns that radiation might cause malignancy and, since every type of treatment comes with considerable risks, I feel the best course is to ask your doctor in percentage terms what those risks are for each type of treatment. I certainly didn't and wouldn't ever try to suggest those odds are a sure thing and things can't go wrong. I just like having the odds on my side.
Best wishes,
TW
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I've made the decision to have the an removed Jan 26th at the Cleveland Clinic. Dr. feels its better to remove it now while it's small. I've tried vestibular therapy and helped a little but not much. Dr. feels if the tumor is removed, vestibular therapy would help a lot. I'm a little nervous but can't wait until it's over with.
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Milenkas,
good luck to you during surgery. I have been reading your posts and I hope you are feeling some relief in having made a decision. That is sometimes the hardest part. Now prepare yourself best you can for your surgery. I am praying for you that it goes well. This is a hard journey we are on, I had my surgery Oct. 27, so am not far into recovery.. I won't "sugarcoat it",, it is not an easy surgery nor recovery,, but hopefully yours will be easier as your tumor is much smaller than mine and mine was "deep" inside. Go in with a positive attitude that all will go well and it will! Again , good luck and we will all be praying/thinking of you. Jane
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Good Luck Milenkas! I will be thinking good thoughts for you on the 26th. Like Jane said, the decision can be the hardest part, so I hope you are feeling a little relief now!
~Heidi
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thank you for your kind words. I will keep you all posted. Just trying to get everything in order in my house and work before surgery.
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Hi. I jut read all posts and your decision. I will be one day ahead of you but will have translab in so. Cal. I know what you went through deciding! It's quite the process. Sending you good thoughts as you move courageously match forward to save your life!!
Stephsf
tinnitus and slow hearing loss for 8 yrs.
July 2011 sudden full feeling, severe impaired hearing
Treated for ear infections (Not) for 3 months
Audiology, ENT, MRI and dx 11-2011 1.6 cm AN left
Translab scheduled 1-25-12 at HEI
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Good luck, Milenkas & Steph. See you both soon as "posties" ;D
kk -
I'm sorry you had a bad experience with radiation.
As Tumbleweed said, radiation isn't for everyone - surgery isn't either. Treatment is a very personal choice.
But whichever treatment is chosen, there are side-effects and no one can say which ones you may or may not encounter. If there is one steadfast "rule" with AN patients it's that we all are unique in how we recover from treatment. For example, I had double-vision for a few days post op, but I know lots of surgery patients who never had it.
Also, as Tumbleweed said, it's a little premature to say you are going to have to have surgery. Necrosis (tumor death) takes time.
Keeping my fingers crossed for you,
Jan
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Milenkas & Steph
I am not to far behind you surgery bound. Stay strong.