Author Topic: Recent Diagnosis - advised by 3/3 specialists to watch and wait  (Read 1622 times)

omo7530

  • Newbie
  • *
  • Posts: 1
Hello!

Any and all info would be greatly appreciated. I am a 29yo F. with no prior conditions or surgeries, etc.

I was diagnosed on 7/14 with an AN 7mm in size. My symptoms include headaches (ranging 6-7 on a scale 1/10) and tinnitus in my right ear.

I saw a neurologist for headaches 5 years ago and conducted a scan w/o contrast and nothing came back irregular. I came back to the same neurologist in late June and they ordered a scan with contrast which was done on 7/13 and noticed the AN.

I have since seen an oncologist, neurosurgeon, and ENT (for an audiogram) and all recommended watching & waiting and to get routine MRI's. After the audiogram was complete, I was told I have no hearing loss in my right ear and don't have any other issues besides infrequent headaches and infrequent tinnitus.

While they recommended waiting and watching, the oncologist and neurosurgeon had stated that since it is small and I am young, I would be in a good position to have surgery done knowing the complications of complete hearing loss and facial paralysis (very small chance). But, also since it is so small and I have full hearing, they didn't think surgery would be the right move for me.

At this point, I am not sure why I wouldn't have surgery. Watching and waiting seems like it would prolong the issue even further, but of course I wouldn't know the possibilities of it not growing or getting smaller without w&w and getting routine scans.

If it's there and doesn't grow at all, will other issues come about? Or will I remain as I am currently (healthy, no other issues, living life as is)? I guess I am more so looking for a pro/cons of waiting and watching versus doing surgery and am curious of others experiences.

Reading this thread has been more than helpful and very insightful into others experiences.

Thanks for all the help!

Greece Lover

  • Full Member
  • ***
  • Posts: 198
Re: Recent Diagnosis - advised by 3/3 specialists to watch and wait
« Reply #1 on: August 13, 2020, 08:44:33 am »
Sorry you had to join the club. Yours is indeed small, but as you can probably guess, they don't seem small to anyone!
I was perhaps in a similar boat to you at my diagnosis. relatively young, healthy, no problematic medical history. Mine was 1.2 cm, so on the large side of "small."  I also had tinnitus and no real hearing loss. The hard thing with these tumors (or one the hard things) is that you have so many options for treatment.  I ultimately decided to have middle fossa surgery (the best for hearing retention, but only works for small tumors).  Doc said there was about a 65% chance of saving my hearing. So, I assumed some risk of going deaf in that ear, but also the benefit of that risk was having the tumor out and the ability to move on with my life, which, so far, is basically what has happened. I go in one year for what, hopefully, will be my last follow-up MRI. (fingers crossed)

But, we're all different. Some on here are really strong advocates for Watch and Wait.  My understanding is that it's really hard to predict what these tumors will do, and what impact they'll have. So, it might not grow, but it could grow.  Even if it doesn't grow, it could start to impact your hearing. Or it could not.  For me, I wanted it out, and so far, I'm really glad I made that decision.

If you wanted my advice, I would look for a surgeon who does a lot of Middle Fossa (not always the easiest to find, as most surgeons are more familiar with the RetroSig approach).  See what she or he says, and how you feel about it.

Best of luck, and feel free to DM me if you want to converse about it further.

Micah
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 not tumor.  No MRI for four more years!

Freelander

  • Jr. Member
  • **
  • Posts: 61
Re: Recent Diagnosis - advised by 3/3 specialists to watch and wait
« Reply #2 on: September 16, 2020, 08:35:35 pm »
Hello omo7530,

The answer to your question will be determined by the decisions you make, and good for you for seeking advice from different experts.   It's especially helpful to make appointments with doctors who are highly experienced treating AN like over 1,000, usually found at major hospitals and medical centers.  On this ANA site, you will find many suggestions about where to go, and many of us have also identified places we have visited.    Also be aware that the field continues to evolve and some biomed companies and hospital researchers are working hard to develop medical treatments that could shrink AN tumors, as another option to surgery/ stereotactic radiation.  Wouldn't that be grand! Moreover, a small percentage of people experience spontaneous regression of their tumors, something I had been hoping for over the past 5+ years of W&W.      Your journey is just beginning, do as much research as you can to make the best informed decision you can.  The recommendation to watch and wait with a 7mm tumor makes sense to me, and get another MRI in six months or a year to see if it changes shape, having contrast again should be optional for you since they have already identified its location and size.  Learn as much as you can about this condition, especially now.

 


anything