37 YR Male, 6.3cm AN, 4 surrounding cysts - post surgery success story Chicago

[ANGuy]

Thanks!

I know a thing or two about being a father of daughters, so I know where you are coming from.  Boys are great too, but definitely different!

[mike2market]

Hi Jet! Thank you so much for your detailed testimony!

I have a question, I'm not sure if I missed this on your previous posts: Why wouldn't they surgically remove all of the remaining tumor, on your last operation? Was there a risk of affecting something else if they did?

My mom is 76. We just discovered a few months ago that she has a left ear neuroma, now 5.1cm in size. She lost all of her left hearing and lately it would affect her balance, just like in your case, no dizziness. Hence, she fell down 5 months ago and broke her left hip (osteoporosis not helping). Yes, it's been complicated!

Under medical advice and given her age, they applied a 28 session low power radiotherapy instead of surgery to try and weaken the tumor and maybe even reduce it. But it didn't help that much, tumor is still there and now she is showing other complications (post radiotherapy edema maybe have something to do as well). Now we must proceed with surgery and we are worried about the possible consequences. That's why I'm really interested in knowing, if possible, why wouldn't your surgeon remove all of the remaining tumor and if it was in order to avoid certain consequences.

Thank you in advance!
Mike.

[Jet747]

Mike,

The main details discussed were:

Location of tumor - the goal being not to get too close to the cranial nerves which can cause a wide variety of various issues if they are damaged.

My Health - fairly good at the time, the goal being to give a high probability for a high quality of life given my age and life expectancy.

Preservation of hearing - the goal being to retain it if possible.

So based on the above we all agreed to go conservative on the surgery removing around 65% of the tumor...then follow up with radiation to prevent it from growing back.

Nothing is guaranteed but, so far so good in my case! 

Due to its size, radiation alone was never considered.  My choices were a "big" total resection surgery (100% chance of going deaf in the left ear) or a "smaller" surgery followed by radiation (still a chance of deafness). 

After the surgery my balance returned to normal almost immediately.  I'm not sure if you've seen your mom's MRI, but if you look at mine the tumor was really pushing on the brain stem.  Once the pressure was taken off the stem, my sense of balance came back even though the tumor wasn't 100% removed.

As you will see on this forum, every case is very different so it is really hard to make any sort of recommendation as to what is best.  I'd say your best chance of a great outcome is finding a qualified team of Dr.'s who do this day in and day out.  I'd imagine that there might be geriatric specialist within this already specialized field...though I haven't seen that come up yet.

Feel free to PM me if you have any other questions that I might be able to answer!

Best,
Jet

[Jet747]

2 YR Update

Happy to report back that 2 years after surgery and 18 months after radiation; remaining debulked tumor looks stable!

Life is pretty much back to normal. (as normal as life can be with a nearly 3 year old daughter!)

Minor tinnitus remains constant, however AN side hearing remains fully intact and no other issues have presented.  I still don't like music with too much treble but other than that things are great.  I have been using the Widex Zen for awhile, if you have tinnitus I definitely recommend giving it a try.

Should you ever wish to reach out with any questions send a pm and I'll promptly respond.

Best wishes to all of you wherever you are in the journey!!!

Jet,


Picture of each 6 month MRI side x side to compare volume.



Picture of the awesome and supportive family.



Pictures of my favorite kid!!!

[Jet747]

2.5 year update

Happy to report back that 2.5 years from RS and 2 years from GN the debulked tumor is shrinking nicely.

Took a non-aggressive approach to AN surgical treatment in order to try to preserve hearing.

2.5 years away post treatment my AN issues are limited to tinnitus (lessening over time), sensitivity to music with a lot of treble and inability to lay completely flat (extreme dizziness, no change since surgery).

Thankfully my hearing is still fully in tact.

I’m scheduled for a 3 year MRI then I move from bi-annual check-ups to annual check-ups.

Our 3 year old continues to amaze me with her endless energy.

Good luck wherever you are on your journey!

BR,
Jet

Spent 3 months working abroad this summer, photo in Prague.

[ANSydney]

Congratulations Jet on retaining your hearing following surgery and radiosurgery. All the best for the future.