Author Topic: New Here - Recent Diagnosis of AN  (Read 5142 times)

Cheryl R

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Re: New Here - Recent Diagnosis of AN
« Reply #15 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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

AcousticBadDream

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Re: New Here - Recent Diagnosis of AN
« Reply #16 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.

Imagery

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Re: New Here - Recent Diagnosis of AN
« Reply #17 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!

Greece Lover

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Re: New Here - Recent Diagnosis of AN
« Reply #18 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.
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.

swissguy

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Re: New Here - Recent Diagnosis of AN
« Reply #19 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.

Imagery

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Re: New Here - Recent Diagnosis of AN
« Reply #20 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.

Greece Lover

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Re: New Here - Recent Diagnosis of AN
« Reply #21 on: December 15, 2023, 11:12:22 am »
Thanks for the update and 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 #22 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.
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

Imagery

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Re: New Here - Recent Diagnosis of AN
« Reply #23 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.


mwatto

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Re: New Here - Recent Diagnosis of AN
« Reply #24 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.
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

DanFouratt

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Re: New Here - Recent Diagnosis of AN
« Reply #25 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

 
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

DodgeAU

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Re: New Here - Recent Diagnosis of AN
« Reply #26 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.

Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left