2.9cm recently diagnosed with crazy symptoms

[geoffreyowens]

Typical lost hearing in one ear guy and blew it off thinking it was a wakeboarding accident. Thought I had water in my ear but obviously my hearing never got better. 5 years later I started getting headaches fairly regular. Then a couple months ago I noticed a weird numbness in my lips and a metal taste on my tongue. Finally went to an ENT Dr and found I had profound hearing loss yet my ear drum was perfect. They ordered an MRI just to be sure and bam 💥 turns out I have a large tumor 🤯. I was absolutely shocked. I’m a pretty healthy guy and just turned 44. I was able to get in quickly for an Initial consultation at the Barrow Institute with Dr Randall Porter.  Obviously surgery is needed as my tumor is starting to press against my brain stem. I’ve done tons of research, joined ANA became a member and watched hours of videos including surgery ones. Yet I’m still scared. I’ve never had surgery or even broken a bone. I feel like I’m in great hands with Dr Porter but this is still brain surgery and I can’t shake  the feelings on the unknowns. Surgery is probably going to be in March as I have to meet with the ENT Dr who’s going to assist in the surgery Jan 25th. I’m searching for words of encouragement, diet and good recommendations, work out routines and anything else from people in my shoes. Christmas means a lot more this year to me and my family. I wish everyone else Happy holidays and I thank you very much for hearing me out.

[MarlaB]

First of all, breathe.

Welcome to the club no one wants to belong to, yet we are hands-down an awesome group of humans.

My tumor was about the same size as yours, Barrows is a well-respected center and the ANA website has other docs listed who you might want to consult with. If you have faith and confidence in your team, that is more than half the battle.

Have you read through the ANA materials? It's a lot, I know, but the new Cognitive/Emotional booklet: Understanding Emotional, Cognitive and Behavioral Changes might be a good place to help you calm your heart and lessen your anxiety. (Here's the link off of the ANAUSA.org page. https://www.anausa.org/latest-news/957-understanding-emotional-cognitive-and-behavioral-changes.)

Wishing you the best.

Marla B.

[kcollette]

My surgery is the same day as yours so I’ll hav to check back here to see how it goes for you. Mine is smaller but I haven’t had an MRI since July. Good luck!

[MariettaJoker]

I just had my AN surgery on 11/30/21 and I was very lucky regarding my surgery and first 4 weeks recovery. While I do have some issues to overcome with facial paralysis and eye issues, my surgery recovery has been great. I was in the hospital for 3 nights total and on day 5 and every day since then, I've walked 3-4 miles daily. Amazingly, I had no dizziness or vertigo post surgery, none at all. I think this is extremely rare. I was driving at 3 weeks. I was a fit and active walker prior and I think that made a big difference. Current age is 60.

The hearing was lost as expected in my right ear, but Phonak CROS-P hearing aids have helped a great deal. Facial paralysis and some eye issues related to my right eye not closing continue to be an issue, but I've got some surgery planned to help and I'm hopeful some of the movement might return over time.

I'm happy to share my story for anyone looking down the tunnel at this surgery! The dread of the surgery is likely worse than the reality.

Jim

[Crazycat]

Sounds like what I went through 16 years ago. I could tell you some stories. Just be strong, you'll be okay. The MRI I had had the growth at 5 cm x 5 cm.

The last time I visited the ENT who operated on me , he said, "You know, we still talk about you", and, "You would not believe the size of that tumor", to which I replied, "yeah, 5x5 cm, like a golf ball". He said, "No, bigger".....
Okay, then like an egg.
No, bigger.
A tennis ball?
No, more like a hardball.....

I swear, that's what he said to me!
But then, judging by the MRI, the size of that white mass appears to be well beyond 5 cm. I remember showing the scan to a friend of mine back then. He said, "If that white mass is the tumor, then where is the rest of your brain?"

[geoffreyowens]

Wow that’s huge! I’m confident in my Dr and I’m sure I’ll be ok. My dates have been scheduled.
Feb 22 pre op
Feb 24 surgery
March 7 post op.
I’m excited they moved  up my dates and things are coming together. My insurance has a plan where I can upgrade my coverage for 12 months and will cover all costs.
4k deductible and my premiums will go up to $800 a month. I’ll gladly pay that considering the overall cost of this surgery.
Being stressed about the surgery is bad enough but add to the fact this is going to cost me a lot compounds my stress levels. I had a friend start a go fund me and the response has been amazing. It tears me up to know friends and family care enough about me to contribute that I get choked up over it. The responses I’ve gotten from the ANA are as equally amazing. I’ve been working out and improving my cardio to set my body up for success. I’m eating healthy foods (fish,chicken and vegis). I’ll be in Phoenix for around 15 days. My only concern is my facial nerve. Dr Porter is one of the best so I feel like I’ve got good chances it’ll be left intact. I appreciate everyone who’s commented on my posts and I’ll keep everyone in the loop to my progress.
Thanks 🙏
Geoff Owens 😎

[Crazycat]

Yes, the facial nerve is an important concern. MY ENT told me that there was one person on the surgical team whose sole job was monitoring the facial nerve. there was to be an electrode or something that detected when when the nerve was coming dangerously close to being insulted.

I got through the 15.5 hour surgery without any facial nerve problems-- and this was in 2005!

Of course the cost of all this is insane. It just isn't fair; as if life isn't hard enough without health problems. In my case, I was a working musician when it all came down on me. I suffered for close to five years before I was even diagnosed. I was so sick It got to the point where I could barely put one foot in front of the other (and I was an avid jogger at the time  in great shape); I had to take long road trips, driving with crippling malaise and double vision and play through gigs half-deaf with my head feeling like a lead-lined balloon. It was a nightmare, but I prevailed!

[geoffreyowens]

Wow just wow! Thanks for your words of encouragement they bring me to tears. I know I’ll get through this with the support from my family, friends and complete strangers brought together through this crazy tumor! ❤️

[Crazycat]

Good luck with everything Geoff!

My latest MRI has shown some regrowth at 2cm (second growth spurt since 2017) so I may be looking at some radiation in the near future. I'd rather watch and wait for a while as I don't have any symptoms.

[MariettaJoker]

Wishing you the best of luck in the surgery Geoff. I believe you will come through this all with the attitude that the dread was worse than the reality. That was my case. I had some pretty good facial paralysis PRIOR to my surgery due to the tumor pressing the facial nerve and my post surgery outcome is that I have facial paralysis that will likely require additional outpatient surgery to improve. In my case the tumor had been pressing on the nerve for so long it damaged it. I think my case is fairly rare, so I would not think you would have this issue.

I wish I didn’t have the facial paralysis, but I feel it will improve with additional surgery and other than my recovery has been wonderful and non-eventful. I was also extremely lucky that post surgery I had zero dizziness and/or vertigo. This is NOT typical!

Good luck and keep us posted.

[geoffreyowens]

Thanks for your encouragement. I have no paralysis but I do have numbness in my lips and left side for sure. So hopefully it’s just pushing on my nerve as well and my Dr can preserve it. Either way I’m just at the point of wanting it out of my head. Thanks everyone

[kcollette]

Good luck with your surgery, Jeff! I'm three weeks post-middle fossa surgery and feeling pretty good. :-)

[donjehle]

It looks like your pre-surgery and surgery are coming up in a couple of weeks, geoffreyowens.  You are in my thoughts and prayers that it all goes very well.  We can take courage from kcollette that he/she is feeling good just three weeks out.  Hopefully, yours will go as well.

And I am encouraged by MariettaJoker.  This person has a tremendous attitude despite some serious challenges, but also some great blessings, especially not having any dizziness or vertigo.

We can gain strength from each other!

[geoffreyowens]

One week away from my surgery! Yes I’m still anxious yet excited! Between family and friends and even strangers we raised enough money to reach our goal! I’m leaving for Phoenix Monday morning. I’ve been setting up my body for success through lots of cardio and backcountry skiing at elevations over 10k. I’m confident I’ll come out strong and better. I’m tired of the constant headaches and the numbness of my face. Thanks for everyone’s words of encouragement! ANA warriors forever!!!!!!