Reccomendations on the west coast

[djethex]

Hi everyone,

I was recently diagnosed with an acoustic neuroma, and as such, I am now going through the same decision-making process that is probably familiar to most people here.

Geographically, I live in Oregon, and I have family in LA. So as I've been looking into the surgery option, Dr. Friedman at USC and the House Clinic appear to be two top choices.

For the Cyberknife option, it seems that Dr. Chang at Stanford is frequently recommended, and I am also fortunate in this way.

For the Gammaknife option, however, the experts that I am seeing referenced most often are Dr. Lunsford at Pittsburg and Dr. Kondziolka at NYU.

Does anyone have recommendations for lead radiologists that I might contact on the west coast?

Alternately, has anyone visited Dr. Theodosopolis at UCSF?

Finally, I see that the new Gammaknife Icon has been acquired by Spokane, Washington, which is also nearby. Is anyone familiar enough with the progression of these devices to comment on the advantages that might be offered here?

Thank you.

Chris

[arizonajack]

Regardless of your choice of treatment the most important consideration is the experience and expertise of your medical team.

A convenient location is icing on the cake.

I'm fortunate to live in the same city (Phoenix) as the Barrow Neurological Institute which has a multi-disciplined approach to ANs (unbiased advice on surgical and radiation options).

I chose Gamma Knife as my hearing on the AN side was already all gone. It was a one day deal. Downtown in the AM, home in the afternoon, back to normal activities the next day.

If you can combine quality of care with convenient location, there's no better choice.

[Director]

Hi Djethex- we are holding a webinar on Radiation as a Treatment Method for AN this month which you may find helpful. You can find more detail and register for the free webinar on our website: www.anausa.org.
Allison Feldman, CEO

[djethex]

Thank you, Director, arizonajack, for your replies.

I am very much looking forward to the radiation teleconference at the end of the month, and I expect that it will be helpful in working towards a decision.

I'll also contact the Barrow Institute to inquire about a consultation. As you mentioned arizonajack, identifying the right treatment team is much more important than finding a convenient location.

[djethex]

I wonder if I might ask about this a bit more.

Again, it seems fairly easy to identify which surgeons are well-regarded for the microsurgery option, but harder to know which practitioners are trusted for radiosurgery.

Is that because there is less variation in the results of radiosurgery, or are there particular practitioners that stand out?

[djethex]

Now that I have talked to a large sampling of doctors in this Oregon, there are two that I would like to recommend to others who may be looking. Both of these individuals specialize in acoustic neuromas.

One is Dr. Kim, at the Northwest Ear Institute in Portland. He was especially patient-centered, and treated me with real consideration. It seems that many of the doctors discussing this topic lean noticeably towards either surgery or radiation, but Dr. Kim looked at both options with me in a very open and even manner. I really felt that I learned a lot from talking with him, and would recommend visiting him to others who may be looking.

The other is Dr. Wackym, at Legacy Research in Portland. Dr. Wackym is very knowledgeable about this condition, and is an active researcher in its treatment. He has written articles about how to improve hearing preservation with gamma knife treatment, as well as how to improve accuracy, and how to ensure that patients fully understand the benefits and risks. My impression is that he is particularly well informed and competent.

Finally, I'd like to share some a link that I found for visualization resources. Belleruth Naparstek is a social worker and therapist who has created a series of guided visualization sessions to promote better health, including to have more successful surgeries and how to manage the symptoms of radiosurgery. Her products can be found on Amazon, but it appears that they can also be downloaded from Kaiser Permanente.

https://healthy.kaiserpermanente.org/health/care/!ut/p/a0/FchBDoMgEADAt_iAzYZEYfFmhH6hhdsGiZIIGELt99seZ9DjC33hO-3cUy18_uxCLD22md9bqnCnLVZ8okd_Nd4zoysVAocj_o9bT-GM6IzVap2MBamlBCGsgEWPBohoUkKp8UErXjnTZxmGL2IKPpI!/

[tdlight]

Thanks for the link, dj; interesting.  Since it appears you may be a Kaiser member and are in Oregon, you may want to check out Dr. John Goddard with Kaiser but formerly with the House Clinic.  Being from House he is primarily a surgeon but will advise on radiation as well.  I liked him.

As a fellow Oregonian and one who traveled south for treatment, I am curious to know if you are closer to a decision.

[Blw]

You have a great list of people. I consulted with many and chose Dr. Sheehan at UVA. Reasons were, I didn't want to go to Pittsburgh in January, Sheehan trained with Lunsford and is an MD/PhD surgeon and publishes extensively in the field. UVA is also one of the older GK centers. I consulted with the others based on each being part of an AN center. You want someone who sees a lot of these, and if they are part of a center, they have seen it all. Also, if your doctor radiates and does surgery as well, you get more of an unbiased opinion.