ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: notaclone13 on April 08, 2018, 01:17:52 pm
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Hi All, when recently diagnosed with an 8 mm x 3 mm intracanalicular AN I initially thought that the fact that the tumor was confined to the canal was a good thing. Because this meant the tumor was not near the brain stem. However, based on what I have read it now seems that intracanalicular tumors, even if relatively small may cause more symptoms and problems than bigger tumors located elsewhere. I am interested in knowing how many of us have tumors confined to the IAC. If your tumor (either treated or untreated) is located in the IAC would you mind posting on this thread?
Thanks,
M.A.
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notaclone13
An intracanalicular tumor is considered at a less advanced stage than if it starts to come out of the canal. People's symptoms vary regardless of size and location of tumor. That's what I've noticed after reading posts all these years. People can have a large tumor and almost no symptoms or a very small one and lots of symptoms. Also, people can sometimes lose hearing with a very small tumor but some people with larger tumors may retain hearing for a long time.
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I have a 2.4 x 2.5 x 2.9 cm tumor and my hearing is still OK. I get my hearing tested every month and the last test has the PTA at 45 dB and Word Recognition at 94%. I can use a telephone in my AN affected ear, but it's noticeably inferior.
I just called a friend and we had a telephone conversation and I understood every word.
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An Sydney, just curious, do you have any sound distortion in your AN ear? In January I mostly had pulsatory tinnitus. Now I have constant high pitched tinnitus and sound distortion in the AN ear. Loud sounds make it worse, so I find it helpful to plug the ear with cotton (foam ear plugs don't work very well) or use an earphone and play the free Widex tinnitus app that I downloaded to my phone. I can't help but believe that the tumor must be growing, although I won't know that for sure until the next MRI in June. I decided that if it has grown in the 6 month period I would prefer to act rather than wait for it to grow larger and do more damage. I am finding the W&W strategy very difficult to do. It is like waiting for the other shoe to fall.
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My AN ear is not as clear as my other ear, but I can carry on a conversion on the telephone. I've got low level tinnitus sometimes, which if I concentrate I can notice. Sometimes, after I stand up, I sometimes get a pulsating softish boom-boom at the same rate as my pulse. It goes within 5 minutes.
I'm the opposite t you. I find W&W easy to do. The good news is that it's been stable over the past three MRIs. If it was growing, more than about 2 mm, it would probably make me anxious.
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I have a 1.5cm x 1cm tumor in my right IAC. I have lost 100% of the hearing in that ear, tinnitus has moderated to 1-4 on a scale of 1-10 with 10 being an ungodly racket, balance is wonky especially at night, and I'm now experiencing facial sensation nerve issues on the right side of my face. Consultation with the 2 top surgical teams on the West Coast resulted in identical recommendations for surgical removal. I can't imagine waiting around to see what else this thing impacts next.
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I had an extracanalicular VS (3.5 cm large) and I've lost hearing ability (left ear) only in the last month before (retrosigmoid) exeresis. Then after 3 years, I had a new (regrown) VS, on the same ear, but this time it was mainly intracanalicular (volume 2,60 cm^3, treated with gamma-knife). As far as I can say the intracanalicular is much worse (tinnitus, balance, etc.). --serafino (Rome, Italy)
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With todays advancements in imaging coupled with the fact that more and more doctors are willing to use this technology as a standard part of examination and diagnosis , I can see more and more acoustic neuroma's being found at smaller stages.
Somewhat out of the box here but, its just how I think. I can see a day where you go to the doctor and your whole body is scanned from head to toe by some type of machine just as a regular part of routine physicals. Many problems will be found earlier and earlier, smaller and smaller.
There was just a story in our local paper about a 4 year old who accompanied his mother to the doctor to get her blood drawn. For some unknown reason the boy fainted and so they took him to the ER just as a precaution. The doctor made a decision to do an MRI and they found a brain tumor. 15-20 years ago I'm guessing this would have never happened. Who knows where the technology will take us as far as imaging, diagnosis and treatment.
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Hi,
I was recently diagnosed 3 mos ago with a 9x5x5mm AN inside left ear canal.
I am experiencing tinnitus, off balanceness, and fatigue.
I am in “W&W” mode after numerous Dr consultations and tests.
~Kind Regards to all
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Hi. I have a small intracochlear schwannoma. It's inside the labyrinth. The only symptom is moderate hearing loss and tinnitus. Diagnosed last Friday by dr. Friedman of UCSD.
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Hi I have a 12X5X5 IAC right ear.
symptoms: high pitch tinnitus (very tolerable), balance issues and fatigue.
Diagnosed Feb 2018 and will have another MRI Aug 16. No treatment option yet as no need to until we can get a read on what the tumor is actually doing. I ride bikes, hike, run, dance, etc. I don't let the tumor stop me. I also am taking baby aspiring 2 times daily just to see and I also have adopted a keto lifestyle. No idea if any of these will affect anything but it sure wont hurt!
I have found music grade ear plugs are fantastic in loud places (went to a local music store and also purchased some at Rite Aid) I have several pairs around now. Went to Nashville and hit all the places with music and not a single problem. Invest in the heavy duty ear plugs and I think it will help tremendously!
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Hi kestes, welcome to the IAC club. My 6 month post diagnosis MRI will be in a couple of weeks. I went to the ENT 6 months ago because I was having occasional, positional pulsatory tinnitus in my right ear. I did not notice any hearing loss, but they found some when they tested. I had notice occasional bouts of dizziness, and imbalance which I attributed to a different health issue. I had felt off kilter (literally) for about a year but thought it was just due to some work-related stress. At any rate, can you elaborate on what type of music grade ear plugs you bought? I now have almost constant screeching tinnitus in my AN ear, some days worse than others. I downloaded the free Widex tinnitus app on my iphone and that helps on the bad days. However, noise seems to aggravate the tinnitus. I bought some foam ear plugs at Walmart, but they don't stay in place and frankly, a scrunched up cotton ball works better. So I am curious as to what type of ear plugs you bought that actually work. Thanks
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Hi notaclone. your symptoms, etc. before diagnosis absolutely identical to mine. I kept feeling off for about 2 years and if I had not had an "explosion" in my ear I still may not know about it. by explosion I mean it was a screeching noise that happened instantly one day, I had to stop and grab my ear and thought what in the world. No pain at all. then Immediately after tinnitus and full feeling in ear started. Thought it was sinus infection, zpak, and rounds of steroids did not help it so went to ENT who after several tests found it.
The two hearing plugs I use are Hearos from the Music store or you can get on AMazon and Macks brand from the drug store. They are incredible so far and I have 4 pairs so I can carry them constantly! My next mri will be august 16 and will just see what is going on at that time.
I have already had the ABR and VNG tests which help determine how your balance is and how your hearing is being affected. At first the doctors were recommending Middle Fossa to save hearing but with the results of these tests, they think the surgery would only be 50% or less since it is located deep in the IAC.
Docs have recommended waiting, getting the 6 month mri and if little to no growth then just continuing to wait. Knowing I still may lose my hearing, but surgery or GK would result in hearing loss most likely anyway, so I am perfectly fine waiting and going on with life and enjoying every second!
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Willsee, I can certainly attest to the damage that small tumors can do, but 2mm is really small. Prior to my surgery on a 1.5cm AN in my right IAC, I had lost all hearing in the ear AND was suffering from some significant balance issues. Your journey to the correct diagnosis looks a lot like mine with missteps along the way. The surgeons ended up having to leave 20% of my tumor behind due to its adhesion to the facial nerve so it is important to monitor the tumor and step in aggressively if your team feels it is appropriate (side note - getting the best team of doctors possible with the most experience is critical). Monitoring isn’t a bad idea at this point.
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Hello,
46yo male here working in Melbourne AU, recently diagnosed last month with IAC small 6x4x4 mm AN on my left ear. Had gradual hearing loss over the last 10 years but Jan 2018 felt 50% hearing loss and tinnitus, hence discovered this little bugger.
Went to Neurologist this week and put me on WW for 6 months then MRI on March 2019.
No balance issues just severe hearing loss and mild tinnitus on AN ear. Have issue on identifying where the sound coming from. My colleague on my left side calling my name but I looked on my right side :)
Are you guys doing anything else while on wait and watch? I want to preserve my remaining hearing on left if possible. Just in case my AN grow I leaning towards GK treatment.
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Dodge AU
I've been on watch and wait for close to five years with no change in hearing status yet.
I haven't been doing this all along, but for the last nine months or so I've been taking 81mg aspirin.
There is some research suggestive that aspirin may inhibit growth.
I figure while I'm waiting why not give it a try.
I don't think aspirin will save hearing though. There's nothing in the research about that.
I was told radiation would or could rapidly degrade hearing but that may have been advice specific to my case.
Surgery can cause sudden total loss of one-sided hearing so that's a risk too.
In general I'm happy with how I'm feeling so I wouldn't risk that for hearing alone.
After reading so many posts there doesn't seem to be much consistency regarding hearing loss, tumor size, etc. Some people have large tumors with no hearing loss and others have small tumors with a lot of hearing loss so it's hard to advise.
Good luck
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Cityview I hope the aspirin do wonders for many and stop the growth of AN. I will ask my specialist about it.
Are you doing scan every year?
Do you know if AN shrinks itself later in life?
For me it's an anxious first 6 month wait.
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DodgeAU
I can appreciate the anxiety surrounding the diagnosis and feeling like it's hard to wait the 6 months. I've had a lot of stress and anxiety about the diagnosis as well. In general I don't have anxiety but just dealing with the diagnosis and figuring out what, if anything, to do about it. So I sympathize. Some positive things to think about: the tumor may be exactly the same size in six months or it may grow only slightly. One bit of advice, I wouldn't panic if the next scan shows it to be a little bigger. Sometimes when they interpret the scans over years, the sizes can go up and down because of the way that MRIs work. The imaging is done in "slices" so that can make it difficult to measure, especially smaller tumors.
I do get yearly scans. In some cases I have had more than one per year. I think the first few scans after diagnosis are spaced about six months apart to determine the rate of growth. As I was told, they had no way to know, at the beginning, if the tumor had grown in two months or many years.
I have no information about whether or not they shrink when people get older.
Here is some information about the aspirin regimen. It is not proven yet, but they have found some preliminary, promising evidence so now they are officially doing research.
https://www.sciencedaily.com/releases/2014/01/140124110705.htm
Good Luck with everything and take care.
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That's excellent advise, Cityview. I'll keep those in mind. I'm gaining lots of relevant information on this forum.
Almost 3 years ago I went for a MRI scan for my hearing lossand there was no AN found that time. .
My ENT told me that AN will reach a peak size and then it will plateau, which research had shown that as well. but then again every AN is different.
My wait and watch has just started now I have to find out when is the best time to have intervention, or just keep continue observation.
I saw one recent webinar here in forum that if you have dizzy spells could be an indication of a growing tumour. I had this 3 years ago and thankfully no more after that.
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Almost 8 years W & W with only 3mm AN in IAC. But Im weird. No real hearing loss, massive balance and dizziness issues, fatigue and brain fog. I just developed double vision over the past couple years too, so there may be something else going on, but MRI looked OK. I also have ear pain and fullness. Go figure!
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DodgeAU
That's excellent advise, Cityview. I'll keep those in mind. I'm gaining lots of relevant information on this forum.
Almost 3 years ago I went for a MRI scan for my hearing lossand there was no AN found that time. .
My ENT told me that AN will reach a peak size and then it will plateau, which research had shown that as well. but then again every AN is different.
My wait and watch has just started now I have to find out when is the best time to have intervention, or just keep continue observation.
I saw one recent webinar here in forum that if you have dizzy spells could be an indication of a growing tumour. I had this 3 years ago and thankfully no more after that.
I think I saw that webinar if it was the Vanderbilt one. I found it interesting the the doctor said that small tumors and those that aren't causing vertigo/dizziness are less likely to grow.
Figuring out exactly how long to be on observation and when and if to have treatment is so variable. My main focus has been about figuring out the hearing preservation part of it – radiation vs. surgery vs. observation.
I keep coming back to the fact that it's very small and I have my hearing so it's hard to treat it now.
There's a lot to consider so I just go with what seems the safest overall.
Good luck to you and I hope things remain stable for you.
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In regard to the aspirin regiment, here is the link to the clinical trial which has started and is recruiting:
https://clinicaltrials.gov/ct2/show/NCT03079999.
However, the ability of aspirin to prevent AN growth was only seen in one study and other groups have tried and failed to confirm this result. Below is the result of a recently published paper that found no correlation:
Aspirin does not prevent growth of vestibular schwannomas: A case-control study.
MacKeith S1, Wasson J1, Baker C1, Guilfoyle M2, John D1, Donnelly N1, Mannion R2, Jefferies S3, Axon P1, Tysome JR1.
Author information
Abstract
OBJECTIVES/HYPOTHESIS:
To determine if aspirin intake is associated with reduced growth of vestibular schwannomas (VS). To determine the prevalence of contraindications to regular aspirin in patients with VS.
STUDY DESIGN:
Retrospective, observational case-control study.
METHODS:
The study utilized a postal questionnaire and telephone interviews to determine aspirin exposure. Propensity score matching was used to control for age, sex, and tumor size. Cases were defined as patients with VS proven to have grown on serial magnetic resonance imaging (MRI). Controls were defined as patient with VS stable on serial MRI. Prevalence of regular aspirin use was compared in patients with growing VS versus stable VS. Absolute and relative contraindications to aspirin intake were recorded.
RESULTS:
Six hundred fifty-three patients with VS were contacted, and responses were received by 67% (220 cases and 217 controls). The mean tumor size was 11.3 mm (9.0 mm and 13.3 mm in controls and cases, respectively). Aspirin exposure was more common in stable VS than growing VS (22.1% vs. 17.3%). However, following matching to control for covariates, aspirin was not found to be associated with VS stability (P = .475). Multiple logistic regression (analysis of variance) found tumor size to be the only factor strongly associated with tumor growth (P < .0001). Ninety-two percent of patients were able to take aspirin, with the majority being at low risk of complications from regular use.
CONCLUSIONS:
This study aimed to examine the relationship between aspirin intake and VS stability. In contrast to previous reports, after controlling for covariates, the findings do not demonstrate an association. Only tumor size at diagnosis appears predictive of risk of VS growth.
So while taking a daily aspirin may be beneficial to the heart, I don't believe it will prove to be of much help in controlling AN growth.
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Hello, how are you all? wishing you and your family a Happy New Year 2019!! More prosperity and a shrinking AN's :)
i noticed since last week when I stand up from bed I feel dizzy for about 3 sec, same thing when I lie down to bed feels dizzy for about 3 sec. I tried Dr Google and points me to Benign paroxysmal positional vertigo. Is this normal on people with AN's?
Could this be sign that my ANdroid is growing? Sometimes its uncomfortable or maybe I am just stressed. I hope it will go away soon...
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I wouldn't automatically assume that new symptoms mean that it has grown, but you could mention it to your doctor and see what he/she says.
There have been occasions when I thought I had a symptom, asked for an early MRI, and nothing had changed.
However, the first six months of diagnosis, are important ones for determining growth etc.
It can be hard if it's causing excessive worry.
Some people will have treatment just because of that and they don't prefer to wait.
I can appreciate all points of view about it.
Hope you feel better.
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I know what you mean about BPV. I have had it for several years. When I go to the dentist, I cannot tolerate them lowering my head too far down. I can't sleep flat, I have to have my head elevated. One day I was doing floor exercises at the gym with a trainer, and got so dizzy I had to stop. I assume it was from changing my positions so much. Yoga is out of the question, I wouldn't last 10 minutes. One day I got very dizzy in the supermarket, and had to sit in my car for several minutes until it passed. On some occasions, when I get up out of a chair and walk into another room rather quickly, I will have a transient vertigo attack and have to grab onto something until it passes. Usually the attacks are only momentary, but some have lasted a minute or two. I have learned to keep Dramamine with me at all times when I am away from home. I have also found that I get dizzy when walking for extended periods of time (i.e. 30-60 minutes). I will feel somewhat dizzy while walking and it gets even worse when I stop moving. You are certainly not alone in regard to the dizzies and I do believe that the AN either causes the dizziness or exacerbates it.
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My small AN is in my IAC. I’d like to know how many others have AN’s which are located in the lateral aspect of their IAC as I do. I’ve been told it’s location will continue to negatively impact my hearing no matter treatment I opt for.
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my small AN is located in lateral portion of IAC as well. latest MRI showed it had grown through/obliterated the fundal cap and has now grown an extension into the cochlea. ENT doc says i'm not a good candidate for surgery because the canal is dry, having lost it's normal fluid environment, making extraction without damaging facial nerve very unlikely. already lost useful hearing in that ear, have very poor balance, shrill tinnitus, also pulsatile tinnitus, and hyperacusis. but so far only minimal symptoms of facial nerve impairment. doctor says i wouldn't recover hearing, and would most likely add to my woes if they tried the translab surgery. so i'm on permanent watch and wait, providing it doesn't start growing in the other direction (medially).
*April15/2019: i had an appt today with a new doctor regarding the AN. He explained the fundal cap issue in a different way. i had misunderstood it. So for the benefit of anyone who comes across this post, I am adding the following: The fundal cap is not a structure per se, it is a "space" that is ordinarily filled with fluid. When the AN grew out the lateral end of the IAC, and grew into the cochlear aqueduct, it displaced the fluid. Therefore, there is less chance of saving my hearing and/or removing the tumor without damage to facial nerve. He said it's just easier to work with in there if there is a fluid-filled space surrounding the tumor.
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So sorry for your diagnosis and symptoms. Even small ANs when confined to the IAC seem to cause big problems. It sounds like you have had more than 1 MRI. How long has it been since you were first diagnosed with AN? I sincerely hope you will have no facial nerve issues.
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I had my first MRI and was diagnosed with AN in November 2014. I had such a frightening experience in the MRI machine, due to anxiety and claustrophobia, i didn't go back for the 6 month repeat. Finally got up the guts to make another attempt in April 2017, different, slightly bigger machine. That's when doctor said AN had grown a little, and destroyed the fundal cap (which to my understanding is CSF barrier) and now had extension into cochlear aqueduct. AN was 5.3mm x 3.2mm on first report in 2014, then 6x4x4mm on 2nd report in 2017.
I haven't had another MRI since that one. Seems like there's no reason to. I know the thing is still there, maybe a little bigger now, but maybe not. And I know I just have to live with the symptoms I have. I sincerely feel grateful that it's not growing out the CPA end of the IAC and impinging on the brainstem, which of course is the most common direction they grow (95% of the time according to doc). I have huge empathy for people struggling with treatment decisions and the aftermath of surgeries that don't go quite as expected.
*April15/2019: I just learned today that I had misunderstood the fundal cap issue. It is not a separate structure or barrier, but rather a fluid-filled space. If it's not there, it just makes things more difficult for the surgeon, and lessens the chances for a successful outcome. I apologize for having passed along incorrect information.
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I feel your pain about MRI claustrophobia. I had a bad experience too. The machine was old and noisy and the technician didn’t say a single word to me throughout the 30 minute ordeal. Near the end I started to panic and called out, but no one answered. If it had gone on much longer I think I would found a way to wiggle out of the tube. Next time around, they had a new machine that was quieter and actually had a voice feature that spoke to you, telling you each time a new phase was starting and how long the phase would last. When you know what to expect it is so much easier. Plus, I told the imaging facility about my bad experience and they gave me a different technician next time around. One that checked on me periodically, making sure I was OK. I have also learned that taking an anti-histamine with sedative properties, such as Dramamine is helpful. If you have some benzodiazepines handy such as Ativan or Klonopin that helps too. Whatever it takes to keep you from having a full blown anxiety attack.
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My first MRI I had panic attack and was stopped. Then I found bigger or wider machines somewhere else where I managed to stay calm for 30minutes. I will have my first 6 month follow MRI next month just have to keep anxiety level to minimum.
For some reasons benzodiazepines, Ativan and the likes are banned in Australia therefore cannot get prescription from doctors.
My BPV seems gone now after 3 weeks looks like my body is self adjusting to the AN?
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I was not aware that benzodiazepines are banned in Australia. I understand that they consider such drugs addictive and therefore would not want to give you a prescription for them. But I dont understand why they would not allow the MRI facility to provide you with a one time dose to help you with your anxiety during a stressful procedure. My elderly mother took Ativan for severe anxiety and it was a miracle drug for her. If one is prone to claustrophobia or panic attacks an MRI would definetely be a trigger. The technician who gave me the MRI that induced my panic told me afterward that he actually had one patient wiggle out of the machine. I refrained from telling him that if he actually bothered to speak to the patient during the process and put the person at ease, it might not have happened. I was told that they can see and hear the patient the entire time they are in the machine, yet when I called out to him he did not answer. I started to wonder if I had been forgotten about which led to my panic.
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Hello again,
I got the results of my first 6 month MRI after diagnosis.
Size has changed to 7.5mm x 5.5mm Original diagnosis was 6mm x 4mm. There is marginal increase as per the report.
The otolaryngologist has discussed all treatment options (surgery, radiation, observation).
With all the information, testimonies, of many patients I have read in this forum, I'm quite happy and comfortable to watch and wait as long as possible !!
I was told that majority of small AN in IAC does not need intervention but radiation is an option if AN grows bigger. But since size and location of my AN is far away from the brain stem I am not really worried at this stage.
Since latest MRI was done on different machine, is this within margin of error of machine scanning accuracy? Is it possible that my AN did not grow at all? By looking on the both scans could not see any real change in size.
My next MRI in 6 month time but this time I will be going to same machine as last time for more accurate figures.