Barrow Institute

[sherryg]

My  15 year old daughter was recently diagnosed with a 3cm AN in her left ear. Wondering if anyone has had success stories from Barrow on this size tumor and what approach was used.

[jamie]

I had CyberKnife at BNI, not surgery, but I can say they are great there. Your daughter is in good hands. Who is her neurosurgeon? I saw Dr. Porter, he helped plan my treatment.

[shoegirl]

Hi,

I too had Cyberknife at Barrow's.  I didn't have surgery but know some people who have and spoke highly of their Dr.  Which approach are you using to treat you daughter's AN?  Have you met with an Neuro-ENTs there yet?  Or Neurosurgeons?

My Neuro ENT is Dr. Daspit and Neurosurgeron is Dr. Shetter.  I was very impressed with both.  My Radiation-Oncologist was Dr. Kresl (his staff performed the Cyberknife).  I have heard very good things about Dr. Kris Smith and Dr. Spezler (not sure of the exact spelling) both are in neurosurgery.  Also, if you haven't already spoken with Maggie Varland she is the AN coordinator at Barrow's.  You can find her info on their website.

Wish you and your daughter all the best, if you have any questions please feel free to ask. 

[Jeff]

Hello,

I had surgery at Barrow for a 2.5  cm AN that had a very large (5 cm) cystic component.  Dr. Spetzler (neurosurgeon) and Dr. Daspit (otologist) performed my surgery using the retrosigmoid approach. They used this approach in an attempt to preserve my hearing, which was perfect vefore the surgery. Because I was diagnosed with NF2, and taught middle school band,  I decided to go to Barrow over House Ear Institute, because they at least offered me a chance at saving some hearing. Unfortunately, my hearing was lost as a result of the surgery. They left a significant portion of the tumor behind in an attempt to save my hearing. I have since gone to House to have the remainder of the tumor removed and follow my tumor growth on the other side.

My feeling is that the doctors and facilities at Barrow are excellent. They removed a large portion of what they described as a life-threatening tumor, leaving me with no facial problems or other side effects other than hearing loss. Also, the neurosurgeon at House said that Dr. Spetzler left the remaining portion of the tumor in such a way as to facilitate the easy identification of the facial nerve. Given my personal situation, I wouldn't change anything that I have done, including choosing Barrow for my initial treatment.

You ask about positive outcomes, and I have concluded that this is relative to each situation. My personal situation and goals are different than many on this board. My highest priority is facial nerve function, followed by my wish to get an Auditory Brainstem Implant; a device for patients with NF2 that can provide some sound sensations. Others have different goals.

I am very sorry that your daughter and your family have to deal with this. If I can be of any help, please feel free to contact me.

Jeff

[sherryg]

Spetzler and Daspit are the team. They are considering leaving the tumor capsule in place to try to retain some hearing which I believe means a sub occipital approach. Have heard that this may not be worth it and should just bite the bullet, go trans-lab, remove the whole tumor, lose the hearing and be done with it.

[jamie]

Were you given the option of radiosurgery? 3cm is not too large to treat, CyberKnife teams have treated much larger tumors with great success. Here's a link to check out:

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=3630

[Mark]

Sherry,

My impression is that the approach of surgically debulking AN's too large for radiosurgery down to the smallest level which does not get involved with the hearing and facial nerve and then radiating the remainder is becoming more common place. It is generally accepted that the larger the AN the lower the preservation outcomes will be than with smaller ones. Since it is that last part of the resection of the tumor from the nerves that determines what , if any , deficits will occur with nerve function it makes some degree of sense to use radiosurgery on the remainder which has a higher probability of not causing significant nerve damage compared to surgery. Nothing is perfect or guarnateed , but it is  an approach that makes some sense. I know it is done at Stanford in some situations

mark

[Jeff]

Mark and Jamie make great points. I was offered the opportunity to have my residual tumor treated with radiation while at Barrow. Actually, Dr. Porter came to my hospital room after my surgery to discuss the topic. Anyway, I am sure they would be willing to discuss this with you at Barrow.
Jeff

[shoegirl]

Sherry,

I really liked Dr. Daspit.  He spent alot of time with me going over all my options before treatment.  I believe he trained at the The House Institute.  Have you met with any of the Radiologists at Barrow's yet?  Dr. Kresl is wonderful.  Usually a dr. from Radiation, Neurosurgery, and Neuro-ENT each review your case and give you their recommendation, did you get opinions from each?

I was required to meet with each area before I could begin my Cyberknife.  It is a balanced approach - which made me feel very good about my decision to have my AN treated at Barrow's.

Are you from the Phoenix area?  If so, there is a AN Support Group here locally.  The folks at Barrow's can give the information if your daughter is interested.  I haven't gotten in touch with them yet.

Best Wishes, Suzanne

[sherryg]

My daughter had retrosigmoid surgery at the Barrow Institute in Phoenix on 2/17/06. Her tumor was a 3.5 cm acoustic neuroma. Dr. Spetzler and Dr. Daspit performed a total removal and both the face nerve and hearing were preserved. I feel that with the support of a lot of prayer, God allowed Spetzler and Daspit to use their talents to perform a miracle. My daughter is now home and doing very well. Plan to have her back in school on Monday.

[arcteryx]

Wow, that is truly amazing. Most doctors I've spoken with say the probabability of saving hearing in a tumor that size is less than 5%. Some have even told me 0%!! Congratulations.