Dr. Spetzler, Barrow Neurological in Phoenix

[Rhonda]

Hello.  I'm new to the message board and would like to know about anyone's experience with Dr. Spetzler in Phoenix.  I have a 3.4 AN.  I met with Dr. Porter at Barrow's this week.  He seems like a great dr. however, not enough AN surgeries for my comfort level.  They are working on getting me a consult with Spetzler a.s.a.p.  But I'd like to know of actual patients to hear from them.  At the same time I am researching and speaking to Dr.s at House Ear Institute in L.A.  It's getting down to the wire.  I need to have this surgery soon (1-2 weeks max).  Any info would be greatly appreciated.
Thanks,
Rhonda

[dpericoni]

I am from Tempe. I met with Dr. Despit at Barrows. The following week I went to speak to Dr. Brackmann at House. After talking to both very knowledgable neurologists, I choose House for surgery. They do the most AN's in the country and have a whole floor devoted to AN patients. I have a small tumor 5mm by 8mm and could have chosen radiation but, I decided after visiting House and being with doctors who are experts in surgery that that was the way to go. I will be having surgery in October. I would say that you need to make a call to House and set up an appt. I think they are the best at what they do. Good luck.

[Jeff]

Hello Rhonda,

I have had AN surgery by Dr. Spetzler/Dr.Daspit at Barrow and Dr. Friedman/Dr. Hitselberger at HEI. When I was initially diagnosed, I had a 2.5 cm tumor that had a 5 cm cyst attached, causing extreme pressure on my brainstem. However, my hearing was perfect. Dr. Spetzler thought he could save my hearing by using the retrosigmoid approach. Dr. Friedman wanted to use the translab apporoach with no attempt to retain hearing. I chose Barrow. The surgery went well. Essentially, Dr, Spetzler debulked the tumor, leaving 2.3 cm intact. I had no facial nerve damage but my hearing was lost. Dr. Spetzler saved my life.

About 2 years later, the residual AN showed some growth, so I decided to have it removed. I have NF2, and will very likely be deaf, so I chose HEI because they pioneered a device called an Auditory Brainstem Implant. I had the tumor removed and the implant was placed. Sadly, the implant did not work for me, but I will try again when the tumor on the other side is removed. Dr. Friedman at HEI is a great doctor. He is very compassionate and will take the time to answer your questions and discuss options with you. If you send him your films, he will look at them and call you to give his impressions. He is very good about calling or returning emails within 24 hours. Dr. Hitselberger, the neurosurgeon who actually removes the tumor at HEI, has removed more than 6,000 of these tumors over the course of his career. In my opinion House Ear Clinic is the most experienced with these tumors.

Here are my impressions of both facilities and doctors: Dr. Spetzler is a fantastic neurosurgeon and Barrow is a great facility. I think that they did very well by me. Dr. Daspit, the neurotologist that teams with Dr. Spetzler, did a fellowship at HEI, and thus has experience with AN's. His advice to me after my surgery at Barrow was to think about going to House for further treatment.

The doctors at House are extremely experienced in treating AN's. When I was there, they were doing 2-3 surgeries per day. They are kind, compassionate doctors, and very personable as well. That combined with their experience and skills has lead me to chose them for all further treatment.

I think that Barrow and HEI are excellent choices and am confident that you will receive top-notch care at either facility, but my personal choice would be HEI based upon their experience with AN's. I hope this was helpful. Please contact me if you have other questions that I can answer for you. jdkitterman@hotmail.com

Jeff

[David Wrubel]

The previous replies you received are very good examples of why House is what it is. Difficult cases almost inevitably are referred there, as the NF-2 patient experienced. More recently, House has treated a fairly steady stream of patients who initially underwent FSR or other radiation treatments, but who have experienced some sort of regrowth or other complications. Thus, House has gained significant and recent experience in removing previously irradiated tumors, and any difficulties, complications, and results of that particular kind of surgery.

When I chose House, I had opinions from some excellent institutions, including Mt. Sinai in NY, Yale in New Haven, etc. Until confronted with an AN, I never thought there could be a medical issue that I wouldn't feel 100% comfortable with Yale treating it. That's how specialized and unique AN surgery is, and why experience, both individual and institutional, is paramount.

[Rhonda]

Thank you for all of your feedback.  My choice is to go to HEC with Hitselberger and Friedmann.  However, I am beginning the appeal process to my insurance company to cover this.  HEC is considered "out of network".  The surgeons in Phoenix are "capable" and well respected, and Barrows Neurological Institute is world renown.  So this is going to be a bit of a battle to get this through.  In the meantime, I'm a 3rd grade teacher and school starts August 8th.  I was hoping to get the surgery ASAP to miss as little time as possible from this school year. 

Now it's just wait and see.  I do have a second opinion/consult set up with Spetzler on August 8.  His assistant said possible surgery on Aug 9.  I'm hoping and praying my appeal will have made some progress by this date. 

Best,
R

[Jsoule]

Hi Rhonda, HEI is a great facility....I'm post surgery from there 10 months ago and fantastic results. In regards to the insurance problems, have you tried contacting House, as I have heard comments to the effect that they can also help talking to insurance companies..Just a thought and maybe worth the call to them. I wish you well...Sincerely, Julie