55yr old female - 2.4cm AN - freaking out

[leapyrtwins]

...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case. 

I would like to respectfully dispute this point as many of us... even further down the road with radio treatments are deemed a "done deal" due to no growth of the AN (goal of the radiotreatments) and are "done".  As we know, even with microsurgery, there is always an unfortunate chance for regrowth (as many post surgical and post radio treatment patients here on the forums can attest).  Unfortunately, it's all part of having an AN, regardless of which treatment choice is made.

thanks.
Phyl

I'm with Phyl.  Nothing is ever 100% guaranteed in the world of AN treatment - other than permanent SSD.

Even though I had surgery and my docs said they got all of my tumor - and I truly believe they feel they did - I still have a 1-2% chance of regrowth.

Never say never.

Jan

[Debbi]

Hi Annac-

Just wanted to welcome you and say that Jed Kwartzler was one of three surgeons I talked to when I was diagnosed last year.  I believe he is very good and does 20 or so of these surgeries a year (that was the number when I talked to him).  I ultimately ended up having my surgery with Drs Golfinos and Roland at NYU just because I felt more comfortable with them (and that they do 50 or so AN surgeries a year).  I would encourage you to talk to several doctors, ask all your questions, then decide who you are most comfortable with.  There are some other excellent treatment teams in the NYC area, so you have options.  And, of course, HEI is always an option if you don't mind the trip. 

Please feel free to PM me if you want to talk, okay?  (We're about the same age, btw, and my tumor was your size when it came out last year)

Debbi

[Tumbleweed]

Debbi raises a good point: to improve your odds of success (for any type of treatment), choose a doctor who treats many ANs each year. You don't want to choose someone who is still practicing. ANs are extremely rare, so doctors who treat them on a regular (weekly) basis are few and far between. Combine this with the fact that treating ANs is a highly specialized and technical procedure -- and the area being treated is so sensitive and critical to normal function in life -- and you can see why you want to choose someone with both a past and ongoing track record of many successes.

This is the reason I traveled out of state to Stanford to get treatment. I realized my decision could have lifelong consequences. It was worth the extra money and effort on my part to have those I deemed to be the very best treat me.

Best wishes,
TW

[jerseyboy]

Annac,
Have you seen all these posts?  There's a lot of reaching out going on here.
Jeff

[annac]

I have read all the replies and other posts on the website and I am just in awe of how much support I am receiving and how much information there is. I haven't posted replies because I've been trying to get myself out of a  depressed stuper. I'm also familiarizing myself with all the terms and procedures so I can ask intelligent questions.

I have 3 consultations coming up and the waiting is the hardest part now. I don't know exactly what my condition is and options regarding surgery. 

[Mickey]

Hi annac! I think your approaching things the right way.  Get oppinions of the best Drs around and come up with what you feel in your heart. Going into 2010 there have been very much a steady improvement over the years into whatever you decide on the course and treatment of ANs. Best wishes, Mickey

[Debi]

Your situation sound so familiar.  I was diagnosed in 2002 and had fractionated radiosurgery in 2004
Recently it was discovered that my tumor has grown.  I have spoken to my doctors here in Rochester NY and they have given me options and explained the risks of surgery and I don't really think I have any option other to let them operate.  I just wish I felt more secure about everything.  I don't know if I need to seek out other doctors for more information or if I can trust them to give me the best advice.  I have read extensively over the years but I am also so "freaked out" that I don't know if I am making the correct decisions.  Has anyone had surgery in Rochester, NY?

[suboo73]

I agree with the advice above, but also notice that while the AN grew quite a bit between 2000 and 2006 ( from 1.2 cm to 2.3 cm), it has grown only 1mm (0.1 cm) between 2006 and 2009. That is not much change over the last three years. Researching your options is a good idea, but I would also think about waiting for another MRI to see if the AN is really still growing. It is possible that it is done and could remain stable now. Watch and wait is also an option at this point.

Best wishes, Steve

Annac & Debi,

I am so sorry you are dealing with the issues of regrowth after radiosurgery. 
Seems like the AN journey can certainly be unpredictable at times.

May i now ask you a question?  How do the doctors determine it is regrowth and not swelling from the radiation?

Annac - best wishes that you get to feeling better and your depression lifts while you are waiting for the upcoming appointments. 
            (I hate to wait, myself and get more and more anxious right before the next appointment/tests.)
Debi - sending you my best wishes as well that you can get past the unsettled times and get on with making appointments to find the answers you need.
          I don't know about the doctors in your area, but i am sure others will chime in.  If you don't find docs in Rochester, i hope you continue your quest to find the     
          best!

While you are both doing this research, etc., please take time for yourself.  I know this is not always easy to do; but hope that some 'me time' will help you find peace.

My thoughts and prayers are with you both.
Please keep us posted on your progress.

Sincerely,
Sue
           

[leapyrtwins]

I'm also familiarizing myself with all the terms and procedures so I can ask intelligent questions.

Annac -

don't be concerned about your lack of AN knowledge - we all started out in the same place.  I had never heard of an acoustic neuroma until I was diagnosed with one.  Ask any questions you want, don't worry about whether they are "intelligent".  There is no such thing as a dumb question.  We are here to help each other and a lot of what the majority of us know we've learned along the way.

You might also want to ask the ANA for their brochures - if you haven't already - I learned a lot from reading them.

I hope your consultations go well.

Jan

[annac]

This is my current status since my last post. I spoke directly to Dr. Brackmann from HEI and he was wonderful and comforting. My case falls into the "failed radiated AN" file. He recommends without a doubt the translaybrinth approach in my case. He sent me all his published data with relation to this approach and his finding with surgeries for my specific case. Dr. Brackmann has performed 50 of theses procedures and his total group has performed 100.

I then went to visit Dr. Kwartler in Berkely Heights in NJ. He is going to be my new local ENT doctor. I do have confidence in him (he did a clinical fellowship at HEI) but he has only performed 3-5 procedures. He did make an excellent point when discussing the actual surgery. He is a neuro-otolgist and works with a neurosurgeron, you have to get a great neurosurgeon because he is the specialist when it comes to vascular issues. Peeling the tumor away from the facial nerve is tricky and the neurosurgeon has the greater knowledge about vascular nerves.

My next step is consulting with Dr. Post and Dr. Roland both in NYC.

My gut feeling right now is that I have to chose the group that has had the most experience in the actual surgery and that seems to be the House Ear Institute in Los Angeles. I've never been to California and my family is pumped up about all going out there, renting a house and making the surgery part of a a recovery/vacation.

Really bumped out about the possible side effects of the surgery but I will pull through and do the best I can!

[JerseyGirl2]

I then went to visit Dr. Kwartler in Berkely Heights in NJ. He is going to be my new local ENT doctor. I do have confidence in him (he did a clinical fellowship at HEI) but he has only performed 3-5 procedures.

My gut feeling right now is that I have to chose the group that has had the most experience in the actual surgery and that seems to be the House Ear Institute in Los Angeles.

I totally agree with your line of reasoning ... but you're smart to continue to investigate a few more local options -- you still might find a good comfort level closer to home. For what it's worth, I went from my home in New Jersey out to House for my Translab in January 2008 and would do it again in a heartbeat.  I, too, dubbed it as a "surgery/vacation" adventure and am thankful that it turned out that way. I'm sure you've noticed on this forum that everyone's experience is unique, so you need to be prepared for a spectrum of post-surgery outcomes.

Best wishes as you continue your research.

Catherine (JerseyGirl 2)

[Jim Scott]

Annac ~

Just popping in to add my voice to the chorus encouraging you to continue your research and agreeing that the surgeon's AN removal experience is critical to helping tilt the odds for a successful (no complications) AN surgery.   My neurosurgeon had 30 years of AN removal experience.  He freely admitted that in the early years (1970's) some of his AN-removal surgery patients ended up with problems, mostly facial paralysis and/or headaches.  He convinced me that the knowledge and technology in the AN-removal sphere of neurosurgery had progressed exponentially in the years since he began operating on ANs and that he was very confident I would have a good outcome.  His confidence was justified by the surgery outcome.  I survived the debulking surgery with no headaches, facial deficits or other complications and my pre-op symptoms disappeared.  As planned, I underwent FSR 3 months later, again, with no problems and a successful outcome (tumor necrosis and shrinkage).       

The House Ear Institute is well-respected and boasts a long history of performing AN surgeries.  Many of our members are 'veterans' of HEI and were pleased with their surgical outcomes.  Should you chose HEI, I'm sure you'll be equally satisfied.  Remember, although surgery outcomes can't realistically be guaranteed, AN surgery complications are not necessarily guaranteed, either, as many of us can attest.  Find a doctor/facility/treatment you're comfortable with, put your trust in that doctor's judgment and skill, take a deep breath and try to focus on your recovery and life without an acoustic neuroma residing inside your skull.  Should you choose HEI, try to enjoy the 'vacation' in sunny California. 

Jim

[sgerrard]

I will just toss in that for surgery following failed radiation, experience with that particular situation is also helpful. House has done very well this past year with several forum members who went there for surgery after radiation. They know the ropes and have produced very good outcomes (even as they whine that it was "harder").

I think a combination surgery/recovery/vacation is an excellent idea. 

Steve

[mellowrama]

Hello Annac & Debbi.

I had CK in fall 2006 on a 19mm an.  It started growing again and was over 26mm last MRI in July09.  All docs I sent my CD films to said do not wait, as it may effect facial nerve.  Dr. Schwartz and Friedman at house was my choice, after consulting barrow (where I had ck) and house.  I did not want to take any risks and had to travel no matter where I went for Treatment. 

Dr. Schwartz told me he had operated on over 100 failed radiation tumors.  I'm so glad went to them (Aug 24) and did not wait, the tumor was very sticky and it took several additional hours (8 total) to get it out - but I was told 99% was removed and no facial issues!

I don't think its good to radiate a tumor over a certain size due to area restriction and swelling, if I recall most docs told me 19mm was as big as they were comfortable with when I had CK.  Swelling should be gone in a couple of years after radiation treatment.  I know that tumors can regrow with radiation or surgery, but I felt no choice after already having had the radiation fail and did not want more rays on my head.

best wishes, Melinda

[mellowrama]

Annac, did I mention I was released 1 week after surgery?  I stayed in LA and extra week because I already had my airfare booked and it was more restful in a hotel than home. 

I too was concerned about side effects and thought I'd be in LA for weeks, and home for weeks recovering...I know everyone is different but I too had a radiated tumor and I'm doing very well! 

Drove 8 hours last week to visit my mom...getting around fine.  I really did not want to have surgery, avoided it...but it was not as bad as I expected  - mainly just the first 3 days then significant leaps in recovery.  For me the sudden ssd with Translab is the most difficult adjustment, but I feel very very lucky to have not had more side effects via the tumor or surgery or radiation!
Melinda