Has anyone undergone a second AN surgery?

[scjesse]

I had a surgery to remove a golf-ball sized acoustic neuroma back in November of 2007. The MRI taken a few months after my surgery showed that they had removed 75-80% of the tumor. They estimated that it had been growing for 10 years or so, and it was sharing blood vessels with my brain stem, which prevented a full removal.

Six months later I had another MRI which showed that the tumor was reduced approximately 20% in size from my post-surgery MRI. This was of course fantastic news, and I went 18 months before my next MRI. The 2 MRIs that followed showed gradual increases in the size of the tumor, and my last MRI showed it being back to the size of the one taken post-surgery. My doctor says that if it shows an increase on my next MRI (that would be 3 in a row) then he will have 99% certainty that it is re-growing (rather than having been stable for 4 years) and would like to pursue CyberKnife treatment.

I am nervous about radiation and I would personally prefer to have a second surgery, but I was wondering if some of you could offer feedback on that if you have gone through something similar. I am 35 years old and I have read that radiation poses a risk of converting these tumors from benign to cancerous, or it can break the tumor into multiple tumors. Have any of you gone through a second surgery? Is it worth it?

I appreciate all advice, and thanks in advance...

Stephen
Seattle, WA

[Crazycat]

Stephen,

From what I've learned, I don't think that's true about the radiation. If it were, then Cyber Knife and Gamma Knife procedures would be very risky business and many people here have had those procedures without any difficulties.

My doctor told me that in the event of regrowth I would receive radiation.

Once a few years ago, while I was waiting to be scanned with my yearly MRI, I met a girl in the waiting area that was also there to check for AN regrowth. She had already had regrowth and had been treated for it with radiation. I remember her saying to me  at one point, "If you need to have radiation, don't worry about it, it's no big deal".
In other words, it caused no discomfort.

Her words made me feel much better about having radiation in the event of regrowth.

[ppearl214]

Hi Stephen and welcome.

My buddy, Crazykat is right... so many of us that have had radiation (I had CK) and no difficulties in my personal AN journey.

Many here that had surgery done first and residual tumor treated with radiation.  One of our moderators, JimScott, had that done.  "Debulked" his AN, then had radiation on the residual. I'm sure he'll see this later when he logs on so he can share his story.

No need to be nervous about radiation as times have changed, technologies have changed and too many of us as walking proof.  As you know, "individual results may vary" and yes, as with any medical treatment (including surgical) for many medical ailments, not all are good outcomes.  Many of us here will attest to hearing the good, the bad and the ugly. So, please continue your homework, try the "Search" option at the top/left of the forum home page and see what others have shared over the years.  There is a LOT of info here to help the cause.

Hang in there... and again, welcome.
Phyl

[Jim Scott]

Hi, Stephen.  Welcome to the ANA discussion forums.

I'm sorry to learn about your apparent AN re-growth but this can occur, as you well know.  As my fellow moderator, Phyl stated, I underwent tumor debulking followed by radiation (FSR) in a planned 2-step process.  Here's my story:

I was diagnosed (via MRI scan with contrast) with a 4.5 cm AN in May, 2006 after experiencing all the usual symptoms including a complete loss of hearing in my left ear.  My hearing in that ear had slowly disappeared over an approximately 5-year period (and I foolishly ignored it).   I was very concerned about facial paralysis and made this abundantly clear to my doctor, a neurosurgeon who had been removing acoustic neuromas for 30 years.  He shared my concerns and proposed a two stage approach to my AN.   First, the 'debulking' surgery (using the retrosigmoid approach), followed by a 90 day 'rest period', then 26 FSR treatments, 'mapped' by the neurosurgeon and a radiation oncologist he worked with on his AN cases.  The idea was to basically 'gut' the tumor down to a thin membrane that would be highly susceptible to the effects of radiation.   I had complete confidence in this doctor and so, I approved the plan and surgery was scheduled.  Long story short: the AN debulking surgery went exceedingly well and I suffered no real complications.  I recovered rapidly and was ready for the radiation treatment, three months later.  The radiation oncologist informed me that he had kept the radiation 'dose' as low as possible (a total of 27Gy) to spare me any negative reactions.  I'm happy to report that I had none, unless you count boredom.  My last MRI showed definite necrosis (tumor cell death) and the beginnings of tumor shrinkage.  My symptoms disappeared immediately following the surgery and, with some work on my balance, I'm in excellent shape, overall, considering my age (68).  As Phyl stated, each AN patient is different and outcomes, good or not-so-good, can never be guaranteed.  However, radiation treatment following surgery is usually very efficacious.  It certainly was for me. 

As for ANs turning cancerous from radiation, your research will show that the chances of that happening are infinitesimal.  Probably about the same as winning Powerball.  It has to be mentioned but I wouldn't let that distinctly remote possibility worry you too much.  I trust this information will be useful to you and help you make a decision on radiation treatment.

Jim

[scjesse]

Thanks for the feedback guys. I too, experienced gradual hearing loss over an 18-24 month period (mine was in my right ear), but that was all of the symptoms I experienced. I believe my tumor was 3.5cm upon discovery.

I guess the story that has me the most concerned is that of a news anchor here in Seattle. Her name is Kathi Goertzen (anchor for KOMO4 - the ABC affiliate here in Seattle) and she was diagnosed with a meningioma back in 1999. I know that meningiomas differ from acoustic neuromas in a few ways, but she underwent radiation treatment a few years ago and her tumor has now split into multiple ones. She has had 6 surgeries in 12 years, and her progress has really gone downhill since beginning radiation therapy. If any of you are on Facebook, she has a page "Kathi Goertzen KOMO" or you can google her name to read about her story.

I am relieved to hear that this occurrence is so rare. That will give me some mental relief in the event that my surgeon really wants to go in that direction. Having said that, however, what are the risks with having a second surgery?

[jerseygirl]

Hi, Stephen,

Do not let Kathy's meningioma experience scare you and influence your treatment decision. Meningiomas are different from ANs in that they are more resistant to any form of treatment, can come back just a few years later, require more treatment and can eventually result in premature death. On the contrary, ANs today do not result in high level of mortality. An AN diagnosis is now practically never a death sentence while meningioma can be. All of this was related to me during my consultations because the surgeon does not really know what type of tumor he deals with until he goes in and does biopsy, therefore there is a differential diagnosis and they try to be prepared, if it is at all possible.

I had a second  surgery for my AN. It was highly successful, the entire tumor appears to be gone,  facial nerve saved, no pain, NO HEADACHES! You can read my story here on the forum if you look at my posts.

The thing I learned about second surgery is that most neurosurgeons do not want to do it. There is a greater chance of damage, results are almost never as good as the first time (my experience is an exception rather than a rule), greater risk of  a lawsuit, etc.
Radiation of any type is a preferable and most commonly used alternative to the second surgery. Of course, when I first learned that my "scar tissue" was really a regrowing tumor, I ran to radiation specialists. I have learned that this tumor was of such a weird shape and in such a bad spot and  that it made radiation risky. Surgery was also risky but it had a chance of getting rid of it for a long time, if not for good. Radiation simply arrested the tumor's growth and I was not comfortable with the thought that I would need constant surveillance, live with the side effects and still have a tumor in my head! I realized that there was no easy way out and  I chose surgery and do not regret it. Had my tumor been easy to radiate, I would have probably chosen radiation. If my tumor recurs once again, I will have to go with radiation because I do not think my body can handle any more surgeries.

My advice to you is to understand the specifics of your residual, namely its size, location and what important structures (brain and cranial nerves) it is attached to. Only then you can determine the relative risks and benefits of radiation and surgery at it applies to YOU. There is no right and wrong answer. It's whatever works. Best of luck to you!

                  Eve

[jerseygirl]

Stephen,

One comment from you caught my eye, namely that the tumor shared blood vessels with the brainstem. My understanding is that it a common occurrence when the tumor is large enough to touch and even press on the brainstem. My first tumor was huge and pressed and even rotated the brainstem. Generally, ANs are not as vascular as cancers and they do not have as many blood vesssels in them. That is one of the reasons they do not grow as fast.  However, they are not avascular either because, as my first surgeon explained, "all tumors need blood supply to grow". Therefore, they commonly develop blood vessels when    they touch something with blood vessels, like the brainstem. My first surgery was in 1988 and  back then MRIs were in their infancy and contrast was not invented yet. I had to go through brain angiogram (an extremely unpleasant procedure!!!) where a catheter with dye was inserted through my groin, went through aorta, entered the brain, the dye was released and picture taken thus providing my neurosurgeon with a view of my blood vessels. Sure enough there were a couple of big ones running through the tumor which needed to be cauterized during removal. All this was done at a time when  neurosurgeons did not have such plethora of substances limiting blood loss. I had to have one unit of blood after surgery. In contrast, my hemoglobin did not even take a dip after the second surgery! It was virtually bloodless.

ANs are routinely nowadays taken off the brainstem and it is possible that your surgeon is simply not experienced enough with large to huge tumors. I would ask for specifics of shared blood vessels and how the situation is different from any other AN patient with this tumor size. I would also inquire how many large and huge tumors your surgeon removed.  In addition, given that one way radiation works by damaging blood vessels, how will it affect those shared ones? I would seek an expert opinion.

      Eve

[scjesse]

I most definitely have an experienced surgeon. In fact, I believe my surgeon (Dr. Charles Mangham in Seattle) has performed AN sugeries more than anyone else in the world. When my tunor was first discovered, it was indeed pressed up aaginst my brain stem and was even causing a bit of deformation.

I will most definitely asking ALL of the questiuons you posed during my next visit. I am scheduled for an MRI and a follow-up consultation on March 3...

Thanks again for the feedback!!

[jerseygirl]

Stephen,

It is great that you have a very experienced surgeon. Maybe, your situation really is very different from what he encountered before. I am curious now about what he has to say. Best of luck and keep us posted!

                   Eve

[chelsmom]

Hi Stephen,

I'm sorry to hear that you are dealing with the possibility of regrowth.  My daughter had a 5.5+ cm AN tumor (diagnosed at 17 years old).  She had surgery to debulk  70-80% of the tumor in 2006 followed by 28 FSR Novalis treatments.  There was also displacing the brain stem with compression.  Her surgeons felt that the radiation would be the best way to try and prevent regrowth.  In 2009 the tumor had grown back and was 4.1 cm.  We were told that she could not have any more radiation and she needed surgery.  Because her first surgery was so vascular and she had to have 2 units of blood, they decided to do a cranio-angiogram and cauterize as many blood vessels as possible that were feeding the tumor.  This was done as in-patient on a Friday and on Monday they did the translab surgery. 

As was mentioned before, doctors are not happy about doing another surgery especially in a radiated field.  Her surgery was like the previous, 16 hours, and the tumor was wrapped around and stuck to the facial nerve.  They were able to remove 90-95% of the tumor and leave the facial nerve intact but she was left with facial paralysis    (HB 4-5) which has not regained function.  She is now 20 months post op and is scheduled for facial reanimation surgery in 2 weeks. 

I think that some of these tumors are of a more aggressive form then others and she has one of those types. Her surgeon told us that she will need to be followed with a yearly MRI and if there are signs of regrowth that it will have to be treated with surgery again. 

I hope you are able to get some answers soon and decide on a treatment that is best for your situation.

Best regards,
Michelle   

[scjesse]

Thanks Michelle, and I appreciate you sharing your daughter's story. I have a hard enough time dealing with MY tumor, so I couldn't imagine what it would feel like if any of my kids went through this...especially at the young age your daughter is. My MRI is tomorrow, and I am keeping my fingers crossed. I'll keep everyone posted...

[Shan1014]

So sorry to hear about your regrowth.  I too, had a golf ball sized tumor.  85% was removed one year ago.  My 5 month post-surgery MRI showed aggressive regrowth.  I underwent 5 days of Fractionated Radiation with the Novalis Tx machine  in September. 

Surgery was difficult and something I hoped that I would never have to do again.  Radiation treatments were not difficult .... until this past month when it swelled as they will from radiation. This is the hard part and boy, is it hard.   When I started radiation, my tumor was already back to the rather large stage so my swelling tends to cause more problems then most.  My point is... radiation has not been a piece of cake for me and has been very difficult.  Which would I prefer - Surgery or Radiation?  Boy, that is a toss up!

One thing that I had to think about to help me make my decision was that during the first surgery, my doctors were very mindful of the facial and hearing nerves.  If I were to have another surgery, they would not be able to be so delicate in order to get done what they need to get done.  Fractionated Radiation, especially if done on a smaller tumor, tends keep those nerves up and running and gave me a higher chance .

During a couple stages of this whole deal, I took the word of my doctors on what to do.  They have been very good but..... I wished I would have really learned about all of the options and all of my choices each time.  Information is power.

Everyone is so individual on these.... I wish you the best.

[Kathleen_Mc]

Stephen: I also had the darn thing regrow! The regrowth was found about 7 years post-op and monitored for growth for about 8 years, and then I opted to have it surgically removed. Surgery the second time around was a walk in the park (only a brief OR time compaired to the first) and since I had already lost all there was to loose the first time around recovery was nothing.....and yes I'd do it again. I was offered gamma knife but declined, I personally would rather not have something like that pointed at my noggin' , also I wanted to know it was "gone" and not have to watch and wait more to see if the treatment was definitely effective.
It's a personal choice, I had a number of years to ponder my decision and don't regret it in the least!
Kathleen