Author Topic: New Here - Recent Diagnosis of AN  (Read 5143 times)

Imagery

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New Here - Recent Diagnosis of AN
« on: April 08, 2023, 09:03:41 am »
Hi all. I'm new to the forum and I suspect like many others, I'm trying to figure out my condition and looking for advice.

I was officially diagnosed by MRI/Contrast with a 6mm x 4mm VS (nerve sheath tumor) in my right ear. Since May of 2019, I have had 3 instances were I suddenly lost 50% hearing in my right ear, only to have it come back about a week later followed by varying pitches of tinnitus. Even the tinnitus would go away just a couple weeks later such that I was back to normal. There was about 14 months between each of the three episodes. The first couple times, the ENT figured virus or some unknown thing and didn't seem too concerned because it always got better. But after the most recent episode (November 2022), he ordered and MRI and that's how I found out it was a VS.
 
I have an ENT neurosurgeon who I like a lot. His advice is "wait and watch". I have another MRI scheduled May 16th to determine growth rate. The anxiety is pretty horrible. I seem to be having more extremely high pitched tinnitus in my right ear as time goes on, but that could just be my near OCD "testing" to see if it's getting worse. Or maybe it is a sign it's getting worse? Ugh, I just don't know. 

Surgery is an option, but he said the mid-fossa approach probably won't work too well due to the location of my tumor (closer to cochlea). Translabrythine approach is an option, but that is guaranteed permanent hearing destruction in the right ear. Cyberknife is an option, but that has risks as well. But because my symptoms are intermittent and minor (for now) and tumor size it small (also for now), he advised a wait-and-watch approach. I think I agree?? Just seems like it would be better to deal with this while it's small.

Even if it is growing, do people chose to continue waiting in the hopes that it may one day stop growing? Is there a size when it's best to take action before if it gets too big it makes the surgery harder or requires more radiation? Wait and watch is a very tough concept for me to fully understand.

Thanks,

judyette

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Re: New Here - Recent Diagnosis of AN
« Reply #1 on: April 08, 2023, 11:06:19 pm »
Hi Imagery.  I'm replying to your post because of some similarities in our situations.  My right-sided 6 x 4mm AN was discovered in 2014 and I'm still on wait and watch.  It is also close to the cochlea.  I did get a second opinion on best course of action, and that surgeon also recommended wait and watch.  He said it was in the narrowest part of the IAC (internal auditory canal), and would be difficult to remove without damaging surrounding structures, such as facial nerve.  I could easily end up with some level of facial paralysis if I chose surgery.

I do have constant tinnitus, and my hearing has declined in that ear.  The worse thing for me though is balance issues and sudden short bouts of dizziness/disoriention.  I've gotten into the habit of moving slowly, not turning my head too fast, so I don't set it off.  And I take my walking pole when I go out now. I've had a few (infrequent) episodes of vertigo over the years. The thing has grown a little since being found, but not much. It did grow an extension into the cochlear aqueduct. I'm now overdue for my next MRI, last one was in Feb 2021.

My thinking is that I might as well go on for as long as I can on wait and watch.  My quality of life is not that bad, comparatively.  All the options available to us come with some level of risk.  Everyone's situation is different, and of course there are situations where you don't have the option of wait and watch, such as if the AN is pressing on your brainstem.  I feel lucky mine is at opposite end of IAC, and appears to be (very slowly) expanding laterally (towards the cochlea), instead of medially (towards the brainstem). 

I suppose age is a significant factor too, in making a treatment decision.  I'm an older lady, no longer athletic and on-the-go all the time.  Older people frequently use canes, so I don't feel out of place, whereas a younger more vibrant person might find that hard to take.

I just wanted to give you encouragement that you most likely have plenty of time to decide on treatment options, and it's ok to relax about it while you wait for the May MRI.  Focusing on something else, some project or endeavor far removed from health issues, does wonders for me.  I have a touch of OCD too;  I totally get how hard it can be to stop thinking about something.  Best to you.

Judyette

donjehle

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Re: New Here - Recent Diagnosis of AN
« Reply #2 on: April 09, 2023, 01:54:17 pm »
Hi Imagery, and welcome to the ANA Forums!  Thank you for making your first post.

Like you, I have a relatively small acoustic neuroma.  When first diagnosed, I wanted the tumor out as soon as possible!  And when my neurosurgeon at Emory University Healthcare said I should do the wait and watch approach, I was not happy and sought out a second opinion from specialists I respect at the Mayo Clinic.

They explained to me the risks in having surgery or doing radiation.  What if, Imagery, you decided to have surgery and the end result was that you were no longer able to smile or control your facial muscles?  What if you ended up with eye issues?  What if the best surgical approach caused you to lose all your hearing in your acoustic neuroma ear?  I mean, take time to read on these forums some of the things ANA members often struggle with after their treatment.

The Mayo Clinic doctors explained to me that acoustic neuromas generally grow very slowly, and when your tumor is small, you have time to wait six months and see how fast or slow your acoustic neuroma is growing.  If it is growing quickly, you still have time to decide on what your treatment will be.  If it is growing slowly, you might want to postpone treatment for a number of years and enjoy life without the risks of surgery or radiation.  Some people have been in the wait and watch protocol for ten years or more.  They have enjoyed life without the potential side effects of treatment which others have had.

Even though I really wanted mine to be treated as soon as possible, there have been some benefits in waiting (there have been some downsides, too).  But, for me, when I waited the six months, my second MRI revealed that my little acoustic neuroma shrank instead of growing.  The neurosurgeron at Emory now says I won't need another MRI for another three years (unless my symptoms become worse).  I must admit that my situation is not typical, and I don't know why my acoustic neuroma shrank except for prayer (and, maybe, my consistent 81 mg aspirin regimen?).

As judyette stated in her great post, we are fortunate that we have the option to wait and watch; those with large acoustic neuromas or those with acoustic neuromas near the brainstem may not have that as an option.  Some people do not even have the option of radiation therapy; their tumors are too large.  They need to have surgery and have it quickly.  And, unfortunately, some of them have suffered from the negative risks that brain surgery can pose.

So, my point is that I consider myself blessed that I could wait and watch.  If I don't have to have treatment for another 10-15 years, then that would be amazing!  And it's possible that you or I might not need treatment at all.  So, I have made the decision to wait patiently and see what the future holds without being too rash about making an immediate decision.  And if the time comes when we must make a decision for active treatment, then we will have had plenty of time to consider what are our best options.

I wish you well, Imagery, on your acoustic neuroma journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Greece Lover

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Re: New Here - Recent Diagnosis of AN
« Reply #3 on: April 10, 2023, 06:32:12 am »
you've got some good advice from people here already. I will just add to the part about OCD/anxiety.  This is a real issue that gets talked about less than it should.  Knowing there's a tumor "in there" can really mess with your head.  Don't be afraid to see a therapist. I did that post-tumor and found it extremely helpful. 
It's very hard not to be hyper-sensitive to everything going on once you're aware of it.  But usually small fluctuations in symptoms are not indications of some radical change in tumor growth. (Obviously, remember I'm not that kind of a doctor!)

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

mwatto

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Re: New Here - Recent Diagnosis of AN
« Reply #4 on: April 10, 2023, 07:19:13 pm »
Donjehle I think aspirin may have a place reading tis today: Cyclooxygenase 2 (COX-2) enzyme and pro-inflammatory transcription factor, nuclear factor-kappa B (NF-κB)49 have been shown to be critical modulators of VS proliferation. In NF2, COX-2 was expressed in nearly all VS and its expression level correlated with the degree of cellular proliferation. In cultured sporadic VS cells, the secretion of prostaglandin E2, a potent inflammatory mediator generated by COX-2, correlated with cell proliferation rate, and clinical COX-2 inhibitors prevented VS proliferation in vitro.50 A recent microarray study of 1048 VS, including 111 related to NF2, again confirmed the relationship between COX-2 expression and increased tumor proliferation measured by MIB1 expression. To evaluate the therapeutic potential of COX-2 inhibition, several authors have studied the efficacy of anti-inflammatory medications, such as aspirin, in controlling VS growth. A retrospective series of 347 patients with sporadic VS suggested those who took aspirin for unrelated reasons had slower tumor growth51; however, recent retrospective studies did not find a consistent correlation between aspirin intake and VS growth. Despite these controversies, guidelines from the Congress of Neurological Surgeons recommended administration of aspirin for VS patients who are undergoing tumor surveillance.52 To clarify the therapeutic role of aspirin, a prospective, randomized, placebo-controlled phase II trial of aspirin use in both sporadic and NF2-associated VS is currently underway (ClinicalTrials.gov identifier NCT03079999). The preclinical studies informed the dose of aspirin used in the current clinical trial, which is higher than most people would have taken in the reported retrospective studies.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

donjehle

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Re: New Here - Recent Diagnosis of AN
« Reply #5 on: April 11, 2023, 06:04:08 pm »
Thanks, Michele!  I have read studies which speak of the benefits of aspirin for acoustic neuromas and other studies which say that aspirins don't have any benefit.  But, at this point, I'm willing to keep taking it until it doesn't seem to be helping me.  For now, it seems to be helping.  And prayer seems to be helping,too, so I keep doing that, too!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Imagery

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Re: New Here - Recent Diagnosis of AN
« Reply #6 on: April 15, 2023, 10:14:58 am »
Thanks for the replies, everyone. All great advice, which is best to get from people who have the same condition. All your advice is logical and makes sense.

I just have a hard time doing nothing knowing this little bugger it in "there", which is triggering enormous anxiety. Especially at 48 years of age when I still feel quite young. For example, whenever I have the slightest issue in my good ear, I think I might have a second VS which could mean I have NF2, even though there is nothing in the MRI to suggest a tumor. Or, all last night I had bouts of tinnitus and partial hearing loss in my affected ear, only to have things get better, but then to have it be a problem this morning. Part of my mind says, just take my hearing and let's be done with this torture. The other part of my mind says, why would I want that????

I keep telling myself that no amount of worry is going to change this condition. Sometimes that line of thinking helps, other times it doesn't. Makes for rough times when it doesn't.

When my doc explained the complications from treatment, which included facial paralysis, that was/is probably the main reason I was OK with the "wait and watch" approach since that is not one of my symptoms now. But as I've had time to "wait and think", I can't help but think CK treatment while it's small to hopefully stop and perhaps even shrink the tumor now before facial paralysis becomes a symptom might not be a bad idea. But then, maybe facial issues won't ever be a problem so why poke the bear? Also, as @Judyette mentioned, there's a lot of nerve structures crammed into a very small area so the possibility of damaging them is fairly high. Why take that risk?

What I need to understand and cement into my thinking is, no one, not even the doctors, has a crystal ball that can tell you what will happen if you do this or that. You could roll the dice and be proactive in treatment, only to have the results be a lot worse. Or, you can take a reactive approach, So pick a game plan, stick to it until there's a reason not to, then come up with a new game plan should it be needed. And perhaps more than anything, just accept whatever happens and find a way to move on.

I just need to see what the second scan says on May 15th. Ugh, going to be tough. But I'll figure it out.

Thanks everyone.

mwatto

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Re: New Here - Recent Diagnosis of AN
« Reply #7 on: April 16, 2023, 07:05:05 pm »
Hi Imagery I had severe anxiety- I thought I would die...and PTSD after the radiation - again thought the worst as I have a vivid imagination. Four years ater here I am super chilled (have Covid at the moment and not even stressed re that). My AN responded well to CK and I am no longer worried. I was diagnosed at 57.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Greece Lover

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Re: New Here - Recent Diagnosis of AN
« Reply #8 on: April 17, 2023, 07:31:33 am »
Ha Ha (although its not really funny!) but I can't tell you how many nights I laid awake convincing myself I had NF2.  When I went for my 5 year MRI follow up after surgery, I asked my doctor if there was any chance I could have that.  He said "I can guarantee that you don't."  Anyway, the struggle is real when it comes to the anxiety.  Being aware of it is a good first step.  Good luck!

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

SheilaNelson

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Re: New Here - Recent Diagnosis of AN
« Reply #9 on: April 18, 2023, 08:09:21 am »
Hi all. I'm new to the forum and I suspect like many others, I'm trying to figure out my condition and looking for advice.

I was officially diagnosed by MRI/Contrast with a 6mm x 4mm VS (nerve sheath tumor) in my right ear. Since May of 2019, I have had 3 instances were I suddenly lost 50% hearing in my right ear, only to have it come back about a week later followed by varying pitches of tinnitus. Even the tinnitus would go away just a couple weeks later such that I was back to normal. There was about 14 months between each of the three episodes. The first couple times, the ENT figured virus or some unknown thing and didn't seem too concerned because it always got better. But after the most recent episode (November 2022), he ordered and MRI and that's how I found out it was a VS.
 
I have an ENT neurosurgeon who I like a lot. His advice is "wait and watch". I have another MRI scheduled May 16th to determine growth rate. The anxiety is pretty horrible. I seem to be having more extremely high pitched tinnitus in my right ear as time goes on, but that could just be my near OCD "testing" to see if it's getting worse. Or maybe it is a sign it's getting worse? Ugh, I just don't know. 

Surgery is an option, but he said the mid-fossa approach probably won't work too well due to the location of my tumor (closer to cochlea). Translabrythine approach is an option, but that is guaranteed permanent hearing destruction in the right ear. Cyberknife is an option, but that has risks as well. But because my symptoms are intermittent and minor (for now) and tumor size it small (also for now), he advised a wait-and-watch approach. I think I agree?? Just seems like it would be better to deal with this while it's small.

Even if it is growing, do people chose to continue waiting in the hopes that it may one day stop growing? Is there a size when it's best to take action before if it gets too big it makes the surgery harder or requires more radiation? Wait and watch is a very tough concept for me to fully understand.

Thanks,
Wait and watch" is a common approach for treating small VS tumors because surgery or radiation can have significant risks, such as hearing loss or facial paralysis. However, if the tumor grows or begins to cause more significant symptoms, treatment may become necessary. The decision to wait or pursue treatment depends on various factors, such as the size and location of the tumor, your age, overall health, and the severity of your symptoms.

donjehle

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Re: New Here - Recent Diagnosis of AN
« Reply #10 on: April 18, 2023, 07:08:31 pm »
Thank you SheilaNelson!  I hope you post more often.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Moselle

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Re: New Here - Recent Diagnosis of AN
« Reply #11 on: April 19, 2023, 07:09:35 pm »
Yes, I thought I could wait and watch for a long time but here I am after being diagnosed in April 2022 scheduled to fly to LA Sunday to get the preliminary MRI and CT before getting the one time gamma ray zap a week or 2 later after they map it.  It is because the second MRI  in wait and watch showed very fast growth like 4 mm per year.   


donjehle

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Re: New Here - Recent Diagnosis of AN
« Reply #12 on: April 20, 2023, 05:05:09 pm »
That's exactly why they recommend getting the MRI in six months or a year.  Not all acoustic neuromas grow at the same rate.  And we never know how fast or slow ours might be until we track it over time.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

AcousticBadDream

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Re: New Here - Recent Diagnosis of AN
« Reply #13 on: April 23, 2023, 10:04:53 pm »
Hi Imagery,

I can relate to everything you’re saying.  I’m also 48 and also newly diagnosed, although mine is 10x10x10 mm.

I have zero hearing loss and I’m struggling with the idea that I should wait until this thing wrecks my hearing.  Severe vertigo led to my MRI and diagnosis.

I’m a mom with kids.  My youngest doesn’t drive yet.  She has to have a functioning mom.  This whole “take it slow” stuff doesn’t work with my life.  I’m also the only caregiver for my elderly disabled mother.  (No siblings or any other family to help, her or me.)

All my coping skills are gone.  I’m normally super active- biking, weight training, dancing, choreographing….this is so hard.  I can’t even bear the thought of never riding a bike again.

This sucks, but it sounds like surgery sucks too.  It’s hard not to feel kind of hopeless.  Anyway, I’m not much help but commiserating. ;)

Jill Marie

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Re: New Here - Recent Diagnosis of AN
« Reply #14 on: April 24, 2023, 09:55:06 pm »
Hi AcousticBadDream

I was 36 when I was diagnosed with a Facial Nerve Neuroma.  That was 30 years ago. I can't help with the zero hearing loss as my hearing was shot before surgery. 

My 2 boys were in 4th and 6th grade.  Thankfully my sister was taking care of my disabled Mom.  I'm sorry to hear you don't have anyone that can help you take care of her. 

The only thing I can help you with is letting you know you should be able to ride a bike again.  I didn't drive after surgery so I rode my bike so I could have the freedom of going somewhere on my own.  I didn't ride at first because of the balance issues and because I had a cast on my leg and ankle for several months as I broke my leg a month before my surgery.  When I rode my bike the first time I wobbled horribly, mostly from fear of not being able to do it.  Once I rode a bit my fear left me and I started riding more and more.  The only problem I had was looking behind me (balance issue) so my husband put a mirror on my bike for me.  I rode 40 miles in one day.  There are others on the board that ride bikes as well. 

I started driving again, got a job and raised my two boys.  I retired from that job 3 years ago. 

We are here to listen and help when we can!  Jill Marie
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.