My story; treatment options

[catherine82]

Good afternoon everyone,

My AN story so far: after years of intermittent dizziness (and a few doctor's visits for my symptoms over the years) and a few months of headaches, I have a massive migraine that ends up with me going to the ER after a half marathon last March. A CT scan is done, results normal. I follow up with a neurologist outpatient for my headaches. After a few visits and a normal eye exam, she orders an MRI. We are both expecting it to be normal; of course it isn't. I am diagnosed with a 3.5 cm right sided acoustic neuroma in June 2013, have consults at Duke, UNC Chapel Hill, and Emory (I live in Wilmington NC, originally from Atlanta), speak with a physician from House, and make the decision to have retrosigmoid approach surgery at UNC. My hearing was perfect and although the chance was small I chose retrosigmoid approach for the possibility of hearing preservation.

My surgery was on August 21, 2013. I feel completely confident in my choice of surgeons (neurosurgeon and otolaryngologist) and was extremely impressed with the care I received at UNC. Unfortunately, I had cerebral edema after ~ 8-9 hours of surgery so the surgeons stopped surgery knowing that a fair amount of tumor was left. I lost hearing in my affected ear. I have no facial nerve involvement besides slight lack of tears in my right eye. I spent 2 days in the ICU, 2 days on the floor, and was discharged home. My biggest post-op problem was balance issues which improved remarkably quickly with vestibular PT. I went back to work 8 weeks after surgery. I am adjusting to SSD and otherwise feeling great--back to exercising, running, riding my horse, all of my normal activities. I feel incredibly blessed.

I had my first follow up MRI since right after the surgery last week. MRI shows almost 2 cm of AN remains. My neurosurgeon says I am a candidate for watch and wait, GK, or surgery--would do translab approach to avoid manipulation of the brain and to see other views. I am 31 years old, so likely w&w will not last forever and GK does not have the longterm data I would like to see knowing that I have a potential 60 years of life left. Plus, I do not want to be in the situation of having regrowth after GK and needing surgery then. I am leaning toward surgery. Although I definitely do not want to go through surgery again, I feel as though I recovered well from the first one.

I am writing to see if anyone might offer some advice. Part of me wants to wait and have another MRI in 6 months to determine if it is growing. Part of me wants to have surgery this spring so that I can move on with my life. I feel as though my life has been "on hold" waiting for the MRI that I just had and I certainly do not like that feeling. I do not have a significant other or children to think about at this point it my life, and I would like that in the future. My family (parents, sisters, extended family) and friends are extremely supportive of me doing whatever I think is in my best interest. I know this is a decision I have to make for myself, but has anyone had similar experiences?

Thanks for taking the time to read this, I certainly appreciate any input that anyone might have.

Cathy

[Jim Scott]

Hi, Catherine ~

Thanks for offering us an account of your AN experience.  I'm pleased to learn that your surgical recovery was brisk and fairly uncomplicated.

Here is my take on your situation as you present it: I would lean toward radiation as a follow-up to the surgery.  Although you enjoyed a good outcome from the first surgery, a second increases the risk of complications (headaches, CSF leaks, infection, facial paralysis, etc.)  Granted, radiation isn't risk-free but it is not invasive and usually effective.

I advise considering radiation based on my own AN experience.  In a purposeful attempt to avoid facial nerve damage, my neurosurgeon debulked my 4.5 cm AN down to approximately 2.5 cm and severed it's blood supply, making it thinner and more vulnerable to the effects of radiation.  I emerged from the anesthesia with no facial nerve damage and with my pre-op symptoms gone.  Unfortunately, my AN was discovered too late to save the hearing in the affected ear.  Even though my neurosurgeon employed the Retrosigmoid Approach my hearing did not return and I remain SSD.  90 days post-surgery, I underwent 26 FSR treatments intended to attack and destroy the remaining tumor's DNA and stop it's ability to re-grow.  The FSR sessions were uneventful with no real side effects.  Subsequent MRI scans at 6 months, 9 months, one year and two years indicated tumor necrosis (cell death) and the beginnings of shrinkage. This June will mark the eighth anniversary of my AN surgery - and I'm doing great. 

One caveat is that I was 63 at the time of my diagnosis, surgery and radiation so any negative possibilities regarding radiation were not an issue for me (my radiation oncologist never mentioned any risks).  For you, at 31, the slight risk of receiving radiation that could cause problems decades from now does have to be considered.  In light of that, your inclination to undergo another surgery makes sense.  However, the risks with a second surgery do remain and of course, if you are truly uncomfortable with receiving radiation at this point in your life, your choice is clear.  As you noted, it is entirely your decision. 

I wish you great success in whatever choice you make.  Please keep us updated as your time permits.  Thanks.

Jim

[terisandler]

I believe the most prudent way to make a decision is to tune into your intuition and listen to what it says.  Radiation may have unwelcome consequences - sometimes within a few months after treatment and possibly 20 - 30 or more years down the road.  A second surgery opens up the possibility of more immediate consequences.  I debated and researched until I sensed the correct way for me.  I opted for CK over surgery as I wanted to try the least invasive proactive treatment.  I was 60 years old, which probably does not leave me with as much time for long term radiation exposure issues, and in the short term I have had some minimal issues crop up - but they very well may have been caused by my AN, which had been growing for at least 25 years.  Good luck on your continued AN journey.

[TexasSprinter]

Hi Cathy. I have a similar experience to share. At age 44, I discovered my AN in Sept. 2012.  I chose middle fossa for Dec. 2012 surgery because I wanted to try to preserve my hearing and middle fossa gave the doctors the best chance.  Unfortunately, I lost my hearing during the surgery, and because my facial nerve was "splayed" or stretched out over the part of the tumor the surgeons had access to, they could remove only a small portion of the tumor without undue risk to the facial nerve.  Vestibular nerve was also lost during surgery so I had to deal with balance/vertigo/wonkiness for a few months.  I then tried watch and wait for 12 months but could not stand the constant worry of having the tumor still there and wondering when I would do something about it. I have a wife and young kids and was okay (after lots of thinking and praying) with the risks of a second surgery. I had translab in Dec. 2013.  Translab gave the surgeons much better access to the tumor, which was removed (98-99%) without complications.  I had complete confidence in my surgeons (same team for both surgeries) and am forever grateful for their skill and care.  The recovery was mostly easier this time because I was already SSD and my body had already learned to compensate on the balance issues. Very fortunate not to have any facial issues. I have some headaches that I didn't have after the first surgery but I think they will go away eventually and they are manageable right now with ibuprofen. I didn't want to try radiation either time because I was concerned about long-term possible effects and because I had heard that if the radiation didn't work the risk of complications would go up in a subsequent surgery because of tissue scarring. I've been a member of this forum for over a year now and believe there is no single right answer. Different people could make perfectly rationale but different treatment options in your shoes. Whichever decision you make will be the right one.
Best of luck to you on your decision.  Please keep us posted.
Scott

[TexasSprinter]

Quick follow-up to my prior post. Even though the surgeons monitored the facial nerve during the first surgery and did not expect any issues when they were putting me back together, I woke up with my face paralyzed on the right side. It stayed that way for 12 hours then miraculously "snapped back" to normal with absolutely no further issues. Because of that experience I REALLY anguished over the decision whether to have the second surgery and risk the facial nerve. Ultimately the worry of still having the tumor in there was going to give me an ulcer so I went ahead.  Very blessed the way things turned out for me.

[HlavaDerava]

Hello Catherine,

We used to live in Wilmington, NC in the Monkey Junction area.  Favorite places were Topsail Island and Brunswick House.  I still miss the Summer Concert Series in downtown.  Badly.

I am very new to this (just diagnosed), but I have a great wife who is tremendous in finding things on web.  I have initially thought about radiation, but decided against it due to my concern (more or less fear) of having post op headaches caused by swelling that could go for months and years plus the tumor is pressing on my brain core (excuse my luck of terminology, but I do not know the exact term; the doctor told us, but I was in shock learning that I have AN) that is about 70%  shut by the tumor growth.  With radiation it will stay where it is causing potential mischief down the road.  Hence surgery.

We did researched GK and CK, but my preference was proton.  Why?  Because the beam precision and much lower exposure of healthy tissue to radiation (especially with GK).

But there are disadvantages; among them:
- Long treatments (28 days or 6 weeks)
- The data as to the effectiveness / symptoms is almost non existent in comparison with GK or CK
- Insurance may not cover it or will cover only portion of the treatment

But according to the chief radiologist what can be treated with GK or CK can be treated with proton.

Here is a link to the Proton website:
http://www.proton-therapy.org/map.htm

I am newbie to this site and green; there are many other members who have more experience and knowledge.  But I am learning literally by the hour and this forum is just tremendous.  And helping to learn as I go along.

[catherine82]

Thank you all for your input. I am still thinking things over... Will let you know what decision I come to. Halava Derava, I'm sorry to hear of your new diagnosis but as you have probably discovered there are many positive outcomes! Are you still in NC? I had been living in Wilmington for a year when I was diagnosed with my AN and so blessed to be here because there are so many excellent providers in the Raleigh/Durham/CH area.

[CatzEyes]

...  With radiation it will stay where it is causing potential mischief down the road.  Hence surgery.

We did researched GK and CK, but my preference was proton.  Why?  Because the beam precision and much lower exposure of healthy tissue to radiation (especially with GK).

But there are disadvantages; among them:
- Long treatments (28 days or 6 weeks)
- The data as to the effectiveness / symptoms is almost non existent in comparison with GK or CK
- Insurance may not cover it or will cover only portion of the treatment

But according to the chief radiologist what can be treated with GK or CK can be treated with proton.
...

What an intriguing idea. Has anyone else pursued proton therapy/treatment? If so where, and with what kind of success? I see I'm just down the coast from the center at Univ Washington, so if this really is an option, I'll try getting in touch with them.

Many thanks,
Laura

[john1455]

While you are still considering treatment options, please take a look at this site:

http://www.myacoustic.org/

Along with anausa.org's site (pull down the Overview menu), this should be on every AN patient's reading list.