My AN story

[Hampshire82]

Over two years after my diagnosis, I’m glad I am finally joining a group where the focus is on our very rare brain tumor.

While mine is not dead yet, I have ordered its tombstone as it is on life support. I’m lucky and cursed by tinnitus from it. Lucky because I never would have found it without the one million cicadas that suddenly began their scream in my left ear on October 15, 2021. I was going through tests for a sinus condition and had a CT just before the switch for the tinnitus flipped on. The CT was inconclusive and I asked if I could get an MRI because something wasn’t right. My ENT reluctantly agreed.

I like to get test results before my follow-up appointments and this one said Vestibular Schwannoma. What??? Of course, I went straight to Google to find out what the heck it was. I needed a Neurotologist. The one I wanted was booked until January. I chose another who told me that there were three options: wait it out and monitor, have surgery, or radiation (which he said I wasn’t a candidate for because my 8x5 AN was not big enough).

I decided on surgery because I wanted it out of my head. I started the process of getting a date, etc when January rolled around and I realized I still had the other appointment. A second opinion couldn’t hurt. I am SO glad I waited. This doctor had the exact opposite opinion. Small ANs were perfect for Cyberknife and surgery was better for larger ones.

I spent five days in early March 2022 listening to Tom Petty while my head was screwed to a table with my own specially-made mesh face mask. A robot whirled around the room for 19-21 minutes per day firing about 120 radiation lasers into my head. I had no side effects.

I find out next week where it’s at in its death spiral. Six months ago it was dead inside and was continuing to die from the inside out because the DNA, that its cells needed to reproduce, was gone.

Earlier I told you about the tinnitus being lucky. Well here is the curse. The 24/7 screaming in my ear has only gotten worse since it first started. I have tried just about everything but it is a steady, constant, never-wavering scream of cicadas in my left ear. Nothing alters it. Nothing. If you have ever been to a loud concert and had that ringing in your ears the next morning, times that times 100 and you might get close to my misery.

The current theory is that the left side of my neck and shoulder is so tight (its seriously like stone) that this is what is causing the tinnitus. As the tumor dies and shrinks, any tinnitus is supposed to lessen. Nope. I have had a time trying to get trigger point injections or medical Botox without success. I have another appointment this week and hopefully they can get it through my insurance.

Thanks for listening.

[donjehle]

Thank you for sharing your story, Hampshire82!  When we share our stories, that is when others can listen and benefit from them.  When we keep our stories to ourselves, it helps no one.  Welcome to the ANA Forums!

I'm glad you insisted on getting the MRI because that is what is vital in determining if it is a Vestibular Schwannoma.  And I'm also glad you did not listen to the neurologist who told you that radiation was not an option because your tumor was too small.  As you found out, it is when a Vestibular Schwannoma is too large, that surgery is the only option.  When it is small enough, there are three options: surgery, radiation, or waiting and monitoring.  And all options are valid (even though many on the forums will have their preference for what is best).

In terms of what you were told about the tinnitus dying down after the tumor shrinks and dies, I am afraid to tell you that that is not usually true.  Many have surgery where the tumor is completely removed and still have tinnitus.  Others have had the auditory nerves removed and still have tinnitus,  Many have had successful radiation and still have tinnitus.  While I do not want to burst your bubble, these forums need to convey accurate information, and I do not want other readers to think that if they have radiation therapy (or even surgery) that their tinnitus will lessen or improve.  I don't want to state that it cannot, but that is not the typical experience.

Some have described it similar to an amputation.  A person may no longer have an arm, but they still can experience phantom pain where their arm was.  And when the Vestibular Schwannoma is removed surgically or is killed through radiation therapy, most people do not have a reduction in their tinnitus.

I do truly hope that your experience is an exception to the rule and that your tinnitus goes away completely.  Mine is always with me, but I have learned to ignore it (for the most part).  There are a number of potential 'treatments' for tinnitus (none of which I have found particularly successful for me), but it might be worth discussing options with your ENT.  And if you find one which works for you, please share it on these forums.

I wish you the best in your journey, my friend, and I am delighted to hear that your tumor is dying and that the radiation treatment was successful!
Don

[JmLgrace]

Hey Hampshire82,  So sorry about your tinnitus!  I had surgery ~2 years ago and had no tinnitus for 6 months.  Then it hit.  Like being in an air tunnel or having a freight train in my head.  My ENT worked with me for about 8 months using steroids and water pills.  I also started on the John of Ohio regimen for Meniere's Disease as well as taking Betahistine which my ENT prescribed.  Another biggie has been cutting out artificial sweetners.  I'm sure there is a myriad of causes for tinnitus but I think these things have certainly helped me...by God's grace.  I still go through bouts of heavy tinnitus where I just want to get in bed with an ice pack and get away from everything, but my tinnitus has been tremendously reduced.  I wish you all the best!

[DanFouratt]

hampshire82,

Thanks for sharing your story. I too went CK (Sept 2023) and the tinnitus got worse but is is getting better now. I was lucky enough to have it one and done treatment. I have a MRI late march to see what happened to the tumor.

A presentation by Dr. Cunningham (Duke) in the archives discuss how Cochlear Implants can help with tinnitus. I was able to attend in person, it was very interesting. I was tested for a Cochlear Implant and did not qualify, my hearing was too good in the ear (60%).

My sister has tinnitus also from loud music in her youth. She has had some luck in reducing the volume through acupuncture. I have not found a person who does it for tinnitus in North Carolina.  Next time I am in California I will look her person up.

I will make you a deal, if you find a solution please share and I will too.

Dan

[stevehernes]

Thanks for sharing! It takes a lot of courage to open up about your story and your feelings regarding the future.  Everyone's path is unique, and it's important to prioritize what helps us succeed and thrive.