Mom with 4 year old newly diagnosed

[DLDB]

Hello All,
This is my first post.  I was diagnosed in late August with a 3 cm AN on my right side.  My symptoms were sudden hearing loss in that right ear.  MRI confirmed the AN as cause and since then I've had more symptoms (dizziness, confusion, fatigue).  Needless to say, these past 4 months have been a rollercoaster of emotion and after consults with 2 radio surgeons, 2 Neurosurgeons, and 2 ENT surgeons I have finally decided that surgery is the best course for me. 

I have lots of moving pieces to figure out before my surgery so I am turning to this group for some assistance / insight.   

My plan: I am *hoping to travel to CA to see Friedman and Schwartz in late Jan or early Feb and plan to be there for 10-12 days.

For parents who traveled out of state for treatment, how did you plan for your babies care during your hospital stay? We have one daughter (4 yrs) and she will be coming with us so I need to figure out logistics.  Our first idea is for the grandparents to join us in CA to take turns with caring for me and our daughter.  Does this sound reasonable?
Where do we stay for 12 days that is affordable and accommodates 4 people ( I need my own room obviously)?  All suggestions welcome

Thanks everyone,
Donna
 

[MT]

Hi Donna,

I wish you quickly go in and out of the surgery. While my post is, expressively not a medical advice, what I can tell based on my experience:

* 3 cm tumor is not small so micro-surgery is the best bet you can have.
For my 2.7 cm tumor, I consulted 6 doctors and only one said that he will partially debulk the tumor and then use Gamma-Knife (GK aka Cyber-Knife) to treat the tumor in order to protect facial nerve. 5 other surgeons said they will try to take out the maximum possible safely and will not go for GK because the tumor has creeped into my cerebellum and using GK could be damaging.

Preserving facial nerve should be your primary concern
Since every AN individual is different hence you should discuss this with your surgeon(s) in depth that how they intend to protect it. For example, in my case one surgeon said partial debulking while the surgeon who did the surgery said he was able to remove about 90% of the tumor in order to preserve the nerve. However, post-op 51 days my right part of face is still paralyzed.

Surgery approach
There are 3 approaches to the surgery and they are 1) retrosigmoid, 2) middle fossa, and 3) translabyrinthine -- approach is selected based on individual case and have their own upsides and downsides. Discuss with your surgeon which approach he is using, why and what are possible outcomes in terms of hearing loss and facial palsy.

Audiography
See if you can go for audiography tests before and after surgery to establish hearing loss.

Post-op
My story is in the link in my signatures but in short, I had mild level of hearing loss which is totally gone after surgery. I am living with facial palsy and since surgery day, I have no improvement at all. Still hopeful to recover as my surgeon told me recovery will start in about 4 to 6 months...

Children care, etc.
My employer was supportive and gave me 45 days off and even then offered me to work half days (at full pay); everything was covered by insurance and I had to drop my children (4 in total, three school going; one 18 months) at grandparents house who took care of them.

Hope my response helps. Good luck!

[DLDB]

Thanks, MT

I appreciate your thoughtful response. 

We will be bringing our daughter with us to CA and having grandparents stay during surgery and after for my recovery.  Fortunately, my partner has plenty of leave so he will also be at home.  That would be so tough to leave the kids for so long.

Take Care,
D