Debulking Surgery After Failed Radiation

[gkwoman]

I've read plenty here about the recommendation to have a debulking surgery followed by radiation, but I am looking for any information about having a debulking surgery after failed radiation. This is the situation I am in. I won't go into all the details, but sadly it appears that my second GK treatment may not have worked. My AN. which had swelled from 2.1 cm to 2.5 cm at  8 mos. post GK, has now swelled to 3.1 cm in 6 weeks time.  I am having another MRI in August. Because I am experiencing several negative effects, my neurosurgeon said I should seriously consider having my AN debulked. Anything near the facial nerve, or shall I say, whatever may be left of my facial nerve,will not be touched. His goal is to make the AN smaller to get it away from the brain stem, which is being compressed.In the past, I've been told to use a surgeon who has ample experience in removing irradiated ANs and places such as House have been mentioned by other patients. Although I now live in Florida, I have received all of my AN treatment, follow ups, MRIs etc. in NY and would prefer to keep it that way. How do I go about learning who in NY has such experience?  Is it imperative that whomever leads the debulking team have vast experience debulking irradiated ANs since 1. the goal is not to completely remove the AN and 2. hearing preservation is not an issue? The goal is to stop brain stem compression. Nothing near my facial nerve will be touched as there is a very good likelihood the facial nerve is already damaged or will be dying. My primary care physician wants me to do a consult with Sloan Kettering before any further action is taken. Any advice, information, opinions. etc. are very much appreciated.  Thank you in advance for your contribution.

[Jim Scott]

Hi ~

Although my AN experience is not perfectly analogous to yours it was close enough to motivate me to respond to your message.

In 2006 I underwent debulking surgery for a 4.5 cm AN followed, 3 months later as part of a plan, by 26 FSR sessions.  My neurosurgeons rationale for the debulking/radiating process was in response to my clearly stated desire to avoid facial nerve involvement.  The AN was pressing hard on my brain stem and had to be removed as soon as possible.  My symptoms were notable (dizziness, fatigue, loss of sense of taste) but not as bad as the neurosurgeon thought they should have been at that stage.  In fact, he wondered aloud how I was still walking around.

Long story short: the Retrosigmoid approach debulking surgery went well with no complications.  My symptoms disappeared immediately.  The tumor was reduced to approximately 2.5 cm and notably 'thinner'.  90 days later (giving me time to recuperate from the surgery) I underwent the FSR treatments.  They were uneventful with no side effects.  Subsequent MRI scans indicated tumor necrosis and the beginnings of shrinkage.  Seven years later I'm doing great.  My neurosurgeon was elated with the outcome of the surgery and radiation and of course, I shared his elation.

My AN surgery and radiation were performed in New Haven, Connecticut and my neurosurgeon is now retired so I cannot personally recommend a specific Manhattan-based doctor to consult about debulking a previously radiated AN.  However,  the ANA physicians directory http://www.anausa.org/index.php/medical-resources/physicians-directory/214-physician-directory-by-state  lists many doctors in the N.Y.C. area with AN surgery experience and I'm confident that you'll receive some recommendations from our members who have undergone AN surgery by doctors in or around Manhattan.

I'm sorry you have to deal with this situation but I trust you'll be be to locate a doctor who can alleviate the threat the re-growing tumor poses to your brain stem.  Please try to keep us updated on your progress in this search.  Thanks.

Jim  

[gkwoman]

Thank you so much for your response, Jim.  You've given me a lot of food for thought.  My neurosurgeon in NY is listed among those names you have provided me with.  Additionally, the doctor that my PCP wants me to see at Sloan-Kettering is also listed. I feel so much better. Will keep everyone updated once I know what I am going to do. I will be making my decision August.

[mindyandy]

I recommend sending your information to House and get their free consultation. This way you have your options and expert opinions. Keep us informed.

Mindy

[erinflasser]

Hi there - I underwent Retrosigmoid approach surgery 12 weeks ago to "debulk" a 3.5 cm tumor.  I searched high and low for a surgeon and was strongly encouraged to go to a teaching hospital.  That lead me to the University of Miami and Dr. Jacques Morcos.  I feel really positive that if you were to reach out to him he would be able to refer you to someone in NY.  I too only wanted a surgeon who operated on AN patients with significant frequency, as losing my facial nerve was my ultimate fear.  When I met with Dr. Morcos, he told me that my MRI, my health history etc reminded him of the patient and tumor that he had removed the day before.  With those words I was comforted.  I will also add that he partnered with a Neurootolaryngologist during surgery.  In the end, my debulking surgery removed 100% of my tumor, and my facial nerve is completely in tact.  The swelling on my brain stem was relieved, but I did lose hearing in my right ear.  Keep in mind I was prepared to lose it. 

It seems to me that the AN surgical community is well connected, so again if you contact U of M through the ANA website, I know they can provide a referral.  Dr. Frank Telischi is the point of contact for the U of M email link.  He is also my Neurootolaryngologist.  He will answer quickly!  I call them both my angels... 

All the best!

[jamssp]

While I did not have radiation prior to my translab surgery in March, I did use Drs. Gutin & Selesnick at Sloan Kettering. (Selesnick is actually at Weill Cornell.)  They were terrific and very experienced and I would highly recommend that you consult with them if you're looking for doctors in NY.