Another Newbie

[toddnelson]

An MRI on January 21 2024 revealed a vestibular schwannoma 1.4 x 0.8 cm in my left ear. What started as a hearing issue progressed within two months to balance issues.
My doc recommends wait and see due to size of tumor, as well as complications from both radiation and surgery. But I always thought wait and see helped if you were asymptomatic or had mild symptoms. I am NOT asymptomatic. My balance issues are pretty bad, but I have started PT and have been at PT for several weeks now. No improvement yet. My head fullness is terrible, and the hearing is....well, I have lost some hearing in my left ear.
I also seem to struggle a lot now with non-stop nausea, and this sense of fullness in my head, like it's stuffed with wet cotton. Is this common? Will radiation ease either the nausea or head fullness?
How successful has PT been for those that have tried it. I see no benefit yet. How long can PT take before you see any benefits?
I am 65, and my life has been spent hiking and backpacking, frequently with my dog. And trail running. As of now, those activities are not an option; I deal with chronic fatigue and the dizziness/equilibrium is capping my walks with my dog at about 2 miles on a gentle trail.
My doc is optimistic I will be able to hike and backpack again, but I wondered what others thought who have lived through this?
I have so many questions, and am struggling with depression, as well. This has really turned my life upside down. Excuse me in advance if I make a lot of posts. I am struggling to learn and get a handle on this.

[DanFouratt]

Todd,

Everybody's journey and decision process is different. My tumor was about the size of yours.  It grew during one watch and wait procedures.  I only had hearing loss (40%) and tinnitus. Okay an occasional wobbly moments. I did not want my condition to get worse so I decided to address it. I looked at both surgical options and radiation options. (Email me if you want to see this work at Dan4att@gmail.com.) I choose radiation this fall and have not looked back. Neither my surgeon nor my oncologist thought I was rushing and they both supported the decision. I was out and about the next day and back to all activities within four days after the treatment.  Again I only had hearing loss ant tinnitus, which I still have.

I am not a doctor and cannot advise.  I can say decisions are personal but they are yours.

Dan

[Greece Lover]

Sorry you had to join the club.  I would second that the symptoms/experiences are unique to everyone.  I do think it's generally true, however, that sometimes people struggle with balance more pre-surgery than after surgery.  The reason is, once the balance nerves are removed completely during surgery, the brain starts with a baseline and the signals it gets are consistent.  When the tumor and nerves are still there, the signal is fuzzy, and it's harder for the brain to interpret.  It's actually amazing how quickly you recover balance after surgery.  Like you, I'm very active: hiking, camping, biking, etc.  I returned to all of those things within about 3 months of surgery. 

Do you know which surgery options are available to you? It sounds like you might be a candidate for Middle fossa approach. this approach has the best chance at hearing preservation.  That's what I had, and I'm really glad I did.  But, again, everyone's journey is different.

Let us know how we can be helpful and best of luck on your journey!

[v357139]

Hi Todd.  Welcome, and sorry you have to join us. The good news is there are alot of resources on this site that can help you.  Regarding watch and wait, that seems to be the latest trend.  But it can also be helpful the get another opinion, which can either confirm what you have been told, or give you another option.  Particularly with AN, there is often no consensus of opinion between multiple doctors, because it is fairly rare.  Please feel free to post any other questions.  And let us know about your progress.  People are here to help. 

[Angela330]

There is life after this diagnosis.

My story began with experiencing dry mouth.  I had no hearing loss. My initial doctor thought I had a pinched nerve and put me on gabapentin.  When I started to have balance issues I thought it was from the gabapentin.  I ended up taking myself off of gabapentin and changing primary doctors.  I was lucky my new primary doctor was aggressive and ordered an MRI in December, 2018.  I had a very large AN (4.3cmx3.4cm on left side)  and hydrocephalus.  Time was not on my side as I was deteriorating very quickly. My initial appointment with Dr. Kim was January 29th.  I had a 12 hour surgery on February 18, 2019 to remove and spent 7 days in Neuro-ICU to monitor the water on my brain (I was lucky and my body was able to regulate this after surgery) I then spent 1 day in regular hospital bed and because I was doing so well I came directly home. I do have a residual tumor that I have regular MRIs to monitor.  I just had my 7th MRI & it showed no growth, so my next MRI is in 3 years.

Recovery that first year was rough but I learned to be patient with myself as adjusted to my new Normal.  I no longer have dry mouth but my eye on my left side doesn't tear now.  I have adjusted to having SSD and currently looking at getting implant to help me with that issue. I have no balance issues but I regularly do balance exercises and Yoga. 

Last year, I was able to hike partially down the Grand Canyon (I did 7 miles round trip). I also did Tom's Thumbs and several other hikes around Scottsdale, AZ. My husband and I have been working on hiking the Katy Trail and will going to Yellowstone at the end of April. 

As scary as this all is, I do believe it's important to stay positive and take one day at a time.  I wish you all the best. 

[v357139]

Thanks for sharing a great story Angela.  Glad to hear the progress you've made.  I applaud you continuing to work on balance exercises.  I did them religiously for a year after surgery, and I think it really helped.  It can seem quite dark in the tunnel at times.  But there is a light at the other end, and we do make it through.  Thanks again.

[UkulelesAreAwesome]

Todd,
I still have the head fullness you've described. Initially I noticed a feeling of fullness in the ear.  I had gamma knife in August 2022.  The head fullness did not improve.  I've tried Dramamine for the nausea.  I have allergies and I noticed the head fullness is worse when allergies are bothering me. Sometimes Claritin seems to help with the head fullness.

[stevehernes]

How are you doing these days? I hope you are feeling better and have found peace of mind with everything you are facing. Taking steps towards better health feels empowering. While there are hurdles, I'm committed to achieving my goals through a combination of healthy eating, exercise, and possibly incorporating Wegovy under medical guidance. It's about finding the right balance and staying focused on long-term wellness.