ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: Imagery on April 08, 2023, 09:03:41 am

Title: New Here - Recent Diagnosis of AN
Post by: Imagery 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,
Title: Re: New Here - Recent Diagnosis of AN
Post by: judyette 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
Title: Re: New Here - Recent Diagnosis of AN
Post by: donjehle 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
Title: Re: New Here - Recent Diagnosis of AN
Post by: Greece Lover 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!
Title: Re: New Here - Recent Diagnosis of AN
Post by: mwatto 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.
Title: Re: New Here - Recent Diagnosis of AN
Post by: donjehle 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!
Title: Re: New Here - Recent Diagnosis of AN
Post by: Imagery 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.
Title: Re: New Here - Recent Diagnosis of AN
Post by: mwatto 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.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Greece Lover 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!

Title: Re: New Here - Recent Diagnosis of AN
Post by: SheilaNelson 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.
Title: Re: New Here - Recent Diagnosis of AN
Post by: donjehle on April 18, 2023, 07:08:31 pm
Thank you SheilaNelson!  I hope you post more often.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Moselle 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.   

Title: Re: New Here - Recent Diagnosis of AN
Post by: donjehle 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.
Title: Re: New Here - Recent Diagnosis of AN
Post by: AcousticBadDream 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. ;)
Title: Re: New Here - Recent Diagnosis of AN
Post by: Jill Marie 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
Title: Re: New Here - Recent Diagnosis of AN
Post by: Cheryl R on May 12, 2023, 10:48:23 pm
There could be a chance the hearing could be saved with mid fossa or retrosigmoid.     Location plays a part in saving the hearing.  Not all drs do mid fossa.  It is a hard decision what is best as there are  no guarantees.       I had mid fossa on both sides due to Nf2.   One side was saved and one side wasn't.
        Radiation is also a possibility.           I would do whatever while smaller than wait for growth.                   Cheryl R
Title: Re: New Here - Recent Diagnosis of AN
Post by: AcousticBadDream on May 18, 2023, 09:39:28 am
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

Thank you for the kind response.  Actually since posting, my symptoms have completely subsided.  I guess my brain adjusted quickly!

I definitely have emotional ups and downs with this still new diagnosis.



Imagery, I hope you’re doing okay.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Imagery on May 24, 2023, 07:59:54 am
Had my first 6-month follow-up MRI/contrast and there was no change in size or symptoms, which is good news. I also had the MRI done with a machine that is a lot more clear. Even I could easily see the improved clarity.

My neurosurgeon who specializes in these types of tumors said that is a pretty good indication that I do not have a "fast grower". That's not to say there is no growth. We will need another scan in November which would mark 1 year since original discovery. Then we'll have three data points and a much better indication if it's stable or growing. He also said anything under 0.5mm growth rate is really hard to see, which is why we need another scan in 6 months.

Interestingly, he did take a look at an MRI I had way back in 2004 (~19 years ago) just prior to my nose surgery for a deviated septum (broke my nose a few times playing hockey back in my younger years). He said no one would have known to look for it back then, and he's not even sure there is anything there, but he said if you really zoom in and take a look in this area where my tumor is, he said you might very slightly be able to see something "abnormal". But he said there is no way to definitively know if this extremely minor abnormality that might not even be anything was "it". There was no contrast administered with the MRI back then, but he found that rather interesting.

He strongly recommended we continue with the "wait and watch" approach. I agreed that this is the best course of action.

Below are a few follow-up questions (answers are in his words, but paraphrased). Thought I'd post these for other people reading the thread, or who will be perhaps years from now.

Question #1: Is there any chance I have one growing in the other ear? I'm a bit OCD but seem to be occasionally getting extremely high-pitched tinnitus in the unaffected ear.
Answer: Everyone has a bit of tinnitus from time to time. Especially as you get older. Your anxiety is driving you to notice every little tiny itsy-bitsy thing, which is why you don't notice anything abnormal when you forget to test your symptoms. Moreover, people who have VSs in both ears have a condition called NF and the tumors always present in both ears at the same time. There is absolutely no indication you have anything in the other ear. And people who have NF usually present with symptoms much earlier in life (early 20s).

Question #2: Is it possible I may not have to have surgery or radiation at all?
Answer: Yes, and this first scan is a good indication that the outcome might be trending in that direction. It could be 10 or 20 years or perhaps never before the tumor gets to a size where you need to act. Or it could very well stay this size forever. We'll still do scans every year for at least he next decade to monitor for any change. Now ... just because it's not growing doesn't mean you won't have any new symptoms as time ticks along. But any treatment you get will have negative side affects. In your case, surgery will render you deaf in the right ear because the translabrynth approach is the only option. Gamma/Cyber treatment will most certainly cause some hearing loss because of the tumor location, but it could also cause facial nerve issues, vestibular issues (vertigo), and/or trigeminal issues. At this time I feel it would be a serious and unnecessary risk to treat the tumor given it's only 6x4mm and at this point appears stable, or at worst growing very slowly. And in 10 years, there could be a biological or gene-targeted therapys that could work far better than the conventional approaches used today. In 20 years, I'm almost certain there will be better solutions than cutting it out or irradiating.

Question #3: If I have another sudden hearing loss episode, do I call you or start prednisone again?
Answer: Yes, please call or just walk-in to the office so we can do a hearing test. It would be nice to get a baseline of your hearing while the symptom exists. Especially if you continue to be the odd case where your hear comes and goes. As of right now at this visit, your hearing is perfect. As for prednisone, we can consider that if your hearing loss gets "stuck" and doesn't start improving after a few days like before. I'm reluctant to use steroids because they can have unintended consequences, especially if using for long term. But I just want to remind you that just if you have another episode of hearing loss due to the tumor doesn't mean it all of a sudden started growing fast. That would be extremely rare. You can have hearing loss and other symptoms even if it's not growing. 

Question #4: This is causing me a lot of stress and I think that might be causing my eardrum to spasm and sound like a bug is knocking on my ear drum. lol. This is not a tumor related symptom, right?
Answer: Absolutely stress related (he said what's causing it but I don't remember the fancy name of the nerve/muscle/condition or whatever. Once the stress is gone, it goes away ... and it did). Remember, this isn't a death sentence. You don't need to be that worried about this. You're in a good spot right now based on this last scan. Any number of other health things can arise in the coming years but don't get stuck in the "what if's". Live life!

I'll post again in 6-months after the next scan, or if I have another symptom.

Best wishes to everyone!
Title: Re: New Here - Recent Diagnosis of AN
Post by: Greece Lover on May 25, 2023, 08:30:32 am
Great news, and these are very perceptive questions and great answers.  Sounds like you've got a great Doc with a good bedside manner as well.

My random thoughts about your questions:
#1-I still struggle with this fear, even thought my Doc said "I guarantee" you don't have one in the other ear.  Anxiety is hard to beat!
#2-It will be interesting to see what future treatments develop.
#4-Don't ignore the mental-health side of this diagnosis.  I've seen a therapist a few times, on and off, and it can be really helpful.
Title: Re: New Here - Recent Diagnosis of AN
Post by: swissguy on July 29, 2023, 04:42:23 am
Hello everybody. I read all the topic and I deeply feel you in all your fears and interrogations.
I'm currently a little bit into the same situation. And I already suffered from a generalized anxiety disorder before the diagnosis. Not a perfect combo.

I only had the "chance" that my neuroma was discovered at only 1mm x 2mm.
Wouldn't it be better to take the risk to do some CK now (or some surgery), to remove it without damaging too many things around (as the size is very small)?
Wouldn't it be a little bit pity to wait for some total hearing loss, considering I already have some balance problems now?
In your opinion, considering the size, could it be totally removed with some radiation?

I know you aren't doctors. But I know that some of you have learned a lot from the experiences of so many people here and your opinion would be very much appreciated.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Imagery on December 15, 2023, 10:05:00 am
Thought I'd reactivate this thread and post a follow-up to my AN situation. It's been one year since my original diagnoses, and I had a follow-up MRI. My tumor is growing a little more than 1mm per year. It's now around 7.5mm x 6mm.

Because of the location (near cochlea), surgery will result in 100% hearing loss and permanent tinnitus. Neurosurgeon does not recommend surgery. Cyberknife is the best approach, or I could wait another year. However, if I permanently lost my hearing tomorrow, I think I would opt for the surgery.

With this new data in hand, I'm now leaning towards getting the Cyberknife procedure while it's still small and I still have hearing. This reduces the radiation treatment levels and increases the chance I will retain some hearing in that ear (no guarantee). Also, radiation will cause it to swell, so if I do it while small, the swelling is less likely to bump up against other nerves in the area.

Bummer part is my hearing for the most part is normal, with occasional temporary dropouts. But it always comes back. No vertigo, facial or trigeminal issues.

Neurosurgeon said I could wait to treat it, but it is almost certain to get bigger and in about 10 years it will start causing other issues. It also gets more difficult to treat.

I'll be scheduling a consultation with the cyberknife team to get their opinion. I had a consultation with another cyberknife team last year, so this would be a second opinion (third if you count my neurosurgeon).

I'll post again after the consultation.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Greece Lover on December 15, 2023, 11:12:22 am
Thanks for the update and good luck!
Title: Re: New Here - Recent Diagnosis of AN
Post by: mwatto on December 17, 2023, 12:45:08 am
Happy to chat with you re Cyberknife feedback anytime. For me all is well. I did panic after Covid 8 months ago as had headaches and nerve pain. But all resolved. My 5th MRI next Feb.
Title: Re: New Here - Recent Diagnosis of AN
Post by: Imagery on February 09, 2024, 09:00:38 am
Another follow-up on my condition ...

I completed the Cyberknife procedure. It was actually a two-part visit. The first visit a week ago Monday was to map out the tumor via a CT/Contrast scan and to construct a plastic mesh/mold of my head. This is to ensure my head did not move for the next visit when the radiation was administered. The second visit was this last Wednesday when the radiation was applied.

The procedure was painless and took about 30 minutes. The cyberknife machine rotates around your head, briefly stopping at many different locations to administer the radiation. Completely painless physically, but it is a little emotionally intimidating when the machine stops in front of your face knowing it's beaming you with radiation. My tumor was small 8x6 mm so only one visit of radiation was administered. Some places administer the radiation over three days if the tumor is large.

They also put you on a steroid for 6 days to help with the initial swelling.

It's been three days since the treatment and I don't have any symptoms, yet. I did feel tired the first couple days, but I think that was entirely due to nerves and not sleeping well for a few days leading up to the procedure (I was only getting about 5 hours of sleep per night). Honestly, I could have gone back to work, but I had PTO hours I needed to burn down so I just stayed home. The steroids are probably affecting my sleep post-procedure, so that's not helping.

Follow-up MRI/Contrast in 1 year. The team of doctors say they used to do the first scan at six months, but people would have anxiety seeing the tumor grew due to swelling caused by the radiation. It takes about a year to see if the procedure works or not, when the swelling hopefully returns to baseline or possibly even shrinks a bit. However, I will be taking a hearing test in 6-8 weeks.

The anticipatory anxiety of potential symptom onset or that the procedure didn't work are now my worry. I hope they will subside in time. However, I know I made the right decision based upon the data for my particular case. The main data points being the tumor was growing, I still had hearing in the ear, and I wanted to take care of it while small knowing it was going to swell after the procedure. Again, surgery is an option, but due to my tumor location, I would be permanently deaf in my right ear. At least this way, I have a shot at hopefully retaining some useful hearing. If I was more fortunate whereby my tumor was no longer growing (20% chance), growing very slowly ( <0.5mm a year) or shrinking on its own (rare), I would have remained in the wait-and-watch stage and done nothing. Unfortunately, that was not my case.

I'll post back if there is any change in my status, or after my 1-year follow-up scan.

Title: Re: New Here - Recent Diagnosis of AN
Post by: mwatto on February 09, 2024, 06:58:35 pm
Hi Imagery I have an annual audiogram. Just had 5th one last week and my hearing in that ear remains as it was at diagnosis -around 85-87%. I listen to music all day and do not wear a hearing aid. I avoid ototoxic drugs. Just an aside other than the MRI for treatment accuracy re using contrast- I have never had contrast since then to track it annualy (just had 5th MRI in fact and waiting on consult this coming week). I feel contrast is pro inflammatory and hard on kidneys. I always say if something is flagged then sure I will have another MRI with contrast. My specialist completely agrees as does the technician where I have it done.
Title: Re: New Here - Recent Diagnosis of AN
Post by: DanFouratt on February 10, 2024, 05:02:57 pm
Imagery,

Thank you for sharing.  I am on the same path but I had already lost most of my hearing before CK. I am about 5 months out and had no symptoms. I have had "wobbliness" on occasions.  I have never fell down and I am not sure what the cause is. I recently found out I have Aortic Stenosis.  I showed no symptoms but one of the potential symptoms is wobbliness. (I thought it was the AN.)  I go in for open heart surgery 3/21/24 and get a new valve.  With in a few months after will know which one the issues caused wobbliness. I will let you know.  Aside from this I returned to 100% of my activities with in days of the procedure. I am very satisfied with my procedure.

My doctor wanted to follow up in 6 months but I will be otherwise occupied and recovering. So I kicked down the road. Based on your comments i might make it a year.  I always thought 6 months was too soon.

Good luck on your journey.

Dan

 
Title: Re: New Here - Recent Diagnosis of AN
Post by: DodgeAU on February 10, 2024, 10:37:09 pm
Imagery, good to hear that your CK procedure went well. All the best in your recovery and healing journey. Keep us updated with the progress. I did the GK and felt good after the whole process knowing I've done something to stop further growth of the AN.