Watch and wait might be over!

[Janey]

I saw my physician today after having my 4th MRI since being diagnosed November, 2014.
In the past year my acoustic neuroma has grown 4mm.  He recommends that I start thinking
about treatment.  I had pretty much decided that if it came to this I'd choose GK in Pittsburgh,
because it's the closest well-known treatment center to my home.  My physician also said that
if I waited another six months, it wouldn't be too terrible, but felt that going ahead now would be
the best option.  I am a 60 year old female, and surgery sounds very terrifying!  To actually make
plans to treat this thing is daunting.  Comments welcome!

[Echo]

Hi Janey,

Making the decision to move forward is very daunting as is choosing the type of treatment to have if you fall into that category.  I spent considerable time making my decision and in the end opted for Gamma Knife.  Once you make the decision to move forward you will most likely feel relief. I know I did, and once the treatment was done, I felt like the big black cloud that had hung over me for the better part of a year had finally drifted away. 

I know for me GK was the right decision.  My recovery has had it's moments, but compared to surgery it's been a walk in the park.

Cathie

[rupert]

Good to hear you're doing well Cathie. 

Janey,  I don't think you will regret going to UPMC.  First class all the way.  I had GK there 6 years ago and it has been very successful.  UPMC  is 3 hour drive for me so convenient also.  They can usually get you in fairly quick once you decide. Good luck in your decision.

[Janey]

Thank you, Cathie and Rupert, for your encouraging comments. 

[Blw]

If you are close to Pittsburgh, see Dr. Lunsford. He is the top Gamma Knife radiation expert in the country. As a disclaimer, I had GK, but setting aside anatomic issues, I don't know why anyone would do the surgery. Both have great outcomes with a low relapse rate. Both can conserve hearing, or trash it alltogether. However, surgery is major--it is brain surgery with a night or two in the ICU, 3-5 days in the hospital. Gk is a three day vacation (though Pittsburgh isn't so hot in the winter), with a 3 hr treatment--actually treatment can be 30-60 minutes, but 3 hrs with the headframe on. It is outpatient, and you go back to work the next day. If you have Cyber knife, no headframe. Yes, it could fail, but then you really havn't lost much because then you get the surgery. If you have not gotten multiple opinions, get them until you get tired of listening to people. The choice was the hardest part of the whole process.

[Janey]

Thank you, B/w.  I am planning to consult with Dr. Lunsford.

[mac84]

Janey, I'm right there with you. I was diagnosed in Oct 2014 and on the W/W. My last MRI was April 2015 and I have mine again next month at Vanderbilt. I've said 'no growth' but really it grew from 10/14 to 4/15 1 mm.....I'm really curious to see whether or not the 1 yr since will mean growth. If it does I'm already 90% in the GK camp w/ Lunsford doing it. I've not consulted w/ them yet but I've talked w/ others on the forum who have used him and I know that's the way to go. I can't imagine having surgery with the risks involved vs. GK.

Good luck! Let us know what you decide!

[Blw]

The one criticism of Lunsford is that he can be a bit impersonal. They also evaluate by correspondance, so you don't get much interaction. If you are close enough to Pittsburgh, get an office visit. All those guys are professional and will spend a lot of time with you. Frankly, that was the most surprising thing about this specialty, Every Dr. I spoke with answered questions until I couldn't think of anymore--1hr + in many cases. They make a lot of money off this, but all of the top groups are outstanding.

[Janey]

Thank you for your responses, Mac84 and B/w.  I am about three hours from Pittsburgh and
I do plan to call for an office consult.  I'll have my list of questions ready.  I have to admit,
I'm still procrastinating with this, but I will get on the ball after Easter, as we have a few travel
plans. Mac84 - I wish you the best of luck with your upcoming MRI, and I'll keep you all
updated on the progress of my treatment plans.  I'm so thankful for each of you in our
forum!

[Blw]

This is a great site for developing questions. Keep reading and write them all down. I went in with note pads and research papers.

[Sally Donn]

Dear Janey,

I am your age, also female and have the same size tumour as you. Like everyone, I agonised over what treatment to have.
Living in Europe, I travelled everywhere to find the right doctor, the right treatment option. I even went to see the top doctors in California,
and that's a long way away!
In the end, i opted for the Gamma knife in Marseille, France with Prof. Regis who like Dr. Lunsford has one of the best reputations in the world.
2 months later, I am so well, so relieved, still have my hearing, and absolutely no facial issues.
I would highly recommend the Gamma Knife. Yes, the head frame is unpleasant, but it's all over so quickly, nothing compared to surgery.
it is hard to have to travel to see the best doctor, but well worth it in the end. The GK was not that traumatic in my experience and I feel like
the luckiest person in the world for having done it.
I wish you all the very best!
Sally

[Janey]

Such encouraging news, Sally.  I consulted with Dr. Lunsford and am now waiting for my
insurance to approve GK.   I don't have a lot of hearing in my AN ear, but my prayer is that
I will keep what I have, and not experience other unwanted side effects.  Best of luck to you
for your continued recovery, and thank you for your response.

[Blw]

Good thing to do about the insurance. I locked all that stuff down well ahead of my treatment because I didn't want any messes. I even get the deductible removed for the MRIs if I call insurance ahead of time. Usually the doctors office has a team that handles that, so I told them get approval before you even schedule me for an appointment. My final cost was about $72,000, not counting getting other opinions. I think out of pocket will end up being about $2500.

[Janey]

I am still trying to get a definitive statement from my insurance - wishy washy will turn into
a mess!  My out of pocket will be $6000 for sure and $9000 if my insurance will not consider
the facility as "In network." 

[Blw]

Depending who you have, they may have a website that allows you to search for who is in network. I have Blue Cross /BS and I was able to find any doctor I was considering for a consult.