Just diagnosed

[Gr8fulDad]

Hey everyone!!

I thought I would say hello and introduce myself.  My name is David and I have just been diagnosed with an AN on my right side.  My mother always told me I was one in a million.  Turns out I'm 1 in 100,000.  It's pretty big...4.2 cm.  I'm now getting past the initial shock of it all.  There was a period of ten days that was pretty distressing mentally/emotionally.   I've bounced back and I'm trying to be the quarterback in my treatment strategy and also trying to stay positive.  I'm really freaked out about the risk of facial paralysis.  I've come to terms with the fact that I will be SSD and will have some balance issues for the rest of my life.  Although. my stomach still sometimes twinges when I think about it.  I'm just a bit scared of it and what life will be like post surgery.  I wish the mutant golf ball living in my head would disappear and that life will continue as normal.

At this point, Retrosigmoid has been presented as the surgical option.  I've met with one surgeon and I have an appointment to see another.  I need to be comfortable with a person that is going to cut my head open.  My preference is for a surgeon to take a very conservative approach to the surgery.  I would prefer a surgical approach where the surgeon takes out as much of the tumor as possible while being ultra conservative with the 7th cranial nerve.  Any residual, I would plan to zap with radiation after.  The risk of this approach is more palatable than the risk of facial paralysis.  just my personal preference.  I'm on the hunt for a surgeon that I can trust will not try to be a hero in the OR,but will put my priorities first.

I would love to hear from anyone about their experience with a tumor my size and would love to hear the experience of anyone who had surgery followed by radiation.  I also just wanted to say hi to everyone.  I've read a lot of posts and this community is really supportive and the sharing of information is amazing.  I hope one day to be able to give back and lend the knowledge I've gained on my journey to someone else.

[CHD63]

Hi David and welcome to this forum .....

Although my initial tumor was not as large as yours, I can identify with your fears of life after treatment for your AN.

Because of the size of your AN, if I were you I would seek out the most experienced neurosurgeon I could find ..... one with vast experience successfully treating specifically acoustic neuroma, not just any brain tumor.  This is one time you want someone who is tops in the field.

Most highly experienced surgeons will discuss the surgical options with their patients before surgery.  I, as well, was terrified about having facial nerve damage so I discussed this at length with my surgeons.  They assured me they would not try to remove the entire tumor if it was wrapped around the facial nerve, but rather remove what they could and then zap it with radiation later if it began to grow.

Much depends upon the type of tumor you have (sticky vs easier to remove in total) and exactly where it is growing.

If you look at the ANA web site, you can see a place for questions for your physician, among many other resources there.  See: https://www.anausa.org/pretreatment/questions-for-your-physician#questions-for-the-acoustic-neuroma-surgeon  This is a good list to make certain you have asked the right questions.

Let us know how you are doing.

Thoughts and prayers.

Clarice

[Gr8fulDad]

Thanks Clarice!  That's what I am doing, searching out the top AN surgeons in Canada.  I have an appointment on Wednesday with a neurosurgeon who by my research is a top surgeon and is well known for AN surgeries.  She is next to impossible to get in to see but the Acoustic Neuroma Association of Canada helped in getting me the appointment.  I can't thank the folks at ANAC enough for their advocacy and support.   Thanks so much for sending me the link and your welcoming words!

D.

[caryawilson]

4.2 cm.  That's a good one.  Mine was around 4.5 cm at the time of surgery.  I don't know the options in Canada, but let me share a little about my experience:

1. The surgeon AND hospital are the most important selection.  Not only do you want a great surgeon but you want to ensure the entire hospital team has experience with your condition.

2. All AN surgeons want to see you.  A 4.2cm neuroma is large and unfortunately you are the ideal patient for a surgeon since surgery is your ONLY option.  Unfortunately, the scheduling staff rarely understand the severity of your condition.  I showed up at John Hopkins and gave a printed copy of my tumor from my MRI to a nurse at the neurology center and eventually found the surgeons that specialize in this condition.  Normally, 1-2 neuro surgeons will specialize in AN at a major brain center, and they will work otolaryngologists.

3. Don't overthink the different surgical options (i.e retro, etc).  The surgeons will have their preferred option.  Take their advise.  For example, John Hopkins has refined their approach to give the best angle.  No need to change the approach.

4. One key factor on your surgery is the vascularity of the neuroma.  A highly vascular tumor will require a more aggressive surgery.

5. You will survive.  I had a highly vascular 4.5cm tumor, 17 hour surgery, complete removal of the 7 and 8 nerves.  Waking up sucked.  Get out of bed as soon as possible and start walking.  8 weeks you should start getting back to your old self. 12 weeks and hopefully you can return to work. and 1 year later and I'm feeling great.

6. Don't delay.  Pick the hospital and surgeon and schedule the surgery