My dad diangnosed with AN recently

[atang08]

Hi Everyone.

First post here and just wanted to start off with expressing how glad I am that there's a site forum for those affected with AN.

My family is trying their best to keep their heads up and trying to take any stress, anxiety, and doubt off his mind.  Although no appointment has been made for surgery, I'm almost most certain that surgery will be the best treatment option since its 3cm x 3.5cm.

Some things about my dad:
Hes very hard working (a custodian at Brandeis for over 17 years)
Hes a damn good father...can't ask for anything else.
He understands English, but hes never gotten computer savvy and has no chance of knowing how to Google about his condition.
Hes only been hearing what the Docs told him.

Me on the other hand, loves to surf the net and to do research. 

So here I am, starting this thread as if I was in his own shoes.

There's a whole list of questions I have that I feel best if it was answered from people who went through surgery for AN or those who has had someone very important in their lives diagnosed with AN.  I would really appreciate anyone who could answer any of them.

1.  Is surgery a high success rate for large tumors? (>3cm) 
2.  Any specific things your loved ones can do for you before and after surgery? 
3.  Since I'm in Boston, should I strongly consider MGH/MEEI (I've seen a couple of success stories with their Surgeons)?  Any recommendations?  Should I convince my dad to look elsewhere?  If by spending more money on air fare and hotels gives my dad a better chance, I'm willing to convince my family to do so.  I just want the best possible for him.
4.  How long is the surgery process?  I've heard from 8-12 hours but would like to hear from any members here. 



Thanks for taking your time to read my post


Anthony

[ppearl214]

Hi Anthony and welcome.

Well, from one Bawstonian to another (and wayyyyyy too many other Bostonians here on the forums....), as you know, we have our own medical mecca right here in our own back yard, thus, I know many that stay local to have their AN treatments. I do know of many here on the forums that had their surgeries with Drs Barker/McKenna at MGH/MEEI and can make the personal recommendations for "patient to patient" referrals.  Some that come to mind (early this Sunday am) is kbonner, Crazykat, Stoneaxe, jcinma... just to name a very short few.  There are many others as well. I have had the opportunity to meet many of them face to face and to spend time with them, you'd have no clue they had surgery.

Suggestion... there is an ANA Metro Boston Support Group meeting next Sunday in Andover.  There is a "thread" in the AN Community forum about it or you can "PM" (email) me here on the site for add'l info.  This will be at someone's home, in a very relaxed environment.  Many that may be there will have had treatments around Metro Boston... and some in watch/wait.  A great opp to meet and greet others in a relaxed environment.  May be worth a consideration for you and your dad (if possible) to attend, so you can meet, face to face, those that walk in the same shoes.

Hope you find this helpful.  Hope you are enjoying the local weather and about time the Sox win... even though Elisbury is back on the DL, but Pedie ready to rejoin!

Again, welcome!
Phyl

[leapyrtwins]

Welcome to the Forum, Anthony.

Your dad's lucky to have a son like you; it's great you are doing all this research on his behalf.

In addition to participating on this Forum, I strongly recommend you contact the ANA for their informational brochures.  You'll find them easy to understand and very helpful.

Surgery is generally the only option for an AN of your father's size; the threshold for radiation is typically 3 cms.  Surgery isn't a piece of cake (it is brain surgery, afterall) but your dad will get through it and be back to himself usually within a matter of weeks or months.  The typical recovery time for surgery is 6 weeks, but every patient is different.  Some recover faster, some recover slower.

Everything I've heard/read about MGH/MEEI has been very positive and those who had their treatment there have been extremely happy.  In my opinion, he has wonderful resources right in his own backyard, so traveling isn't necessary.  I had my surgery locally (Illinois) and have never regretted it.  However, some feel the need to travel, or don't have experienced docs near their home, and House Ear Institute (HEI) in Los Angeles is generally the place they travel to for surgery.   

The best thing you as a family member can do is be there to support your dad and help him through this journey.  The first few days of recovery are tough and healing takes patience, which is sometimes hard to find; recovery can be frustrating.  We have an excellent section here on the Forum for caretakers.  You may find it helpful to read some of the threads posted there.

AN surgery is long - the tumor is peeled away layer by layer by docs working through a small "window" in the skull using a microscope to help them in their task.  My AN was approximately 3 cms @ the time of my surgery and I was "under" for 7 1/2 hours.  So your estimate of 8 - 12 hours is probably right on the money.

Jan

[atang08]

Hi,

Thanks for the replies! 


@donna, My dad is experiencing some hearing loss along with facial numbness.  He's also at times felt some dizziness while working.

So far he has seen Dr. Clark Chen (Beth Israel Deaconess Medical Center) and he has suggested for him to have surgery.  No appointment for surgery has been made, but Dr. Chen is going to make an appointment to consult with other surgeons and neurologists to decide the best treatment and option for my dad.  Most likely it will be surgery...I think my family and my dad already have that mindset. 

I'm greatful to have MGH/MEEI in our back door, but still going to consider other opinions and recommendations. 

@ppearl, thanks for the info about the support group!  I'm def. going to bring this up to my dad.  I'm also going to keep Drs Barker/McKenna in mind. 

@leapy, going to def. request Brochures from ANA and going to do everything possible to help my dad with his recovery.



Anthony

[ppearl214]

Hi Anthony, glad to help. Not sure if you saw in my sig line here but I was treated with Cyberknife radiation at Beth Israel Deaconess approx 4-1/2 yrs ago. Although I don't know Dr. Chen directly, I am very familiar with many of the NS, neuro-onc, etc there.  Glad to help if I can.

Be well... and let me know if you and/or your dad are interested in the ANA support group meeting next Sunday.  May be very worth it.... just a thought.

Hang in there! Your dad is very luck to have you looking out for him!

Phyl

[leapyrtwins]

Just came from an local ANA support group meeting here in Illinois; very helpful.

You and your dad should definitely consider the one near you, Anthony.

Jan

[james e]

How old is your dad? How is his general health? I am 61 and just had my surgery 5 months ago. It took 10 hours, but when you are the patient you have no concept of the time...you just go to sleep and then you wake up. 10 hours is forever if you are a loved one who is having to wait for you dad to come out or surgery. I had a stroke and heart surgery 11 months before my AN surgery. I have applied for disability and it looks like that will happen. All of my problems by themselves have resolved rather well, but not totally, and all 3 together have combined to keep me from working. Hopefully your dad is healthy. Keep us informed of his condition, and you can help him a lot by staying active on this site. Good luck.

[lholl36233]

Hi Anthony,

I highly recommend Dr. McKenna.  He referred me to MGH for proton radiation for my facial nerve hemangioma because of concerns for facial nerve damage during surgery.  Eight months later, not only has my hearing greatly improved, I've had no facial issues whatsoever. 

1 year follow up MRI in December.

Laura

[Sheryl]

Hi Anthony - Sorry you have reason to be here but it's a great place with wonderful people who care.

Although we split our time now between Florida and Cape Cod, I feel that Boston is the place to be when serious medical issues pop up.  I grew up in Boston and worked at one of the large teaching hospitals for awhile before moving full time to Cape Cod years ago.

Both my husband and I have benign brain tumors.  His was a meningioma and mine is a brain stem on the 9th cranial nerve (almost like an acoustic neuroma but different nerve).  I am a wait and watch patient and he has had surgery.  We have both been impressed with the care and knowledge of the staff at Brigham and Women's Hospital.  I just consulted with a new doctor on staff who specializes in brain stem tumors - Dr. Ian Dunn. 

Good luck - keep us posted on your dad - he's lucky to have such a caring son.
Sheryl

[atang08]

Hi,

@jamese, I'm glad to see your healthy and recovering from your surgeries!  My dad is 50 and his general health is good.  Hes on no medications and he gets a lot of exercise by walking during work. 

@laura, Good to hear! (no pun intended)     Already made a list of Dr's and Dr. McKenna is on the top. 

@Sheryl, Makes me feel more grateful that I live in the Boston area.  I wish you and your husband the best.   I will def. keep everyone posted about my dads progress.

Thanks for all the replies everyone!  Since starting this thread, I def. feel more positive and going to try spreading the positive energy to my dad. 

Anthony