Barrow's Institute

[shoegirl]

Hi, Has anyone out there been treated at Barrow's Institute in Phoenix?  With radiation? FSR or otherwise. What was your opinion of Barrow's?

Thank you!

[jamie]

I was going to respond to your other thread, but I think this one is more suitable because I went to Barrow here in Phoenix, and had CyberKnife by Dr. Kresl about two months ago. CK differs from FSR in that it's done over three fractions, and FSR is usually done over five. CK is more accurate, and has a lesser error margin than FSR. My main side effects were a transient headache that was easily controlled by ibuprofen or tylenol that lasted for about a month, and I lost a few dime sized patches of hair on the tumor side about two weeks post treatment, but it's already almost completely grown back. I had three opinions, all were in favor of radiosurgery. Interestingly one of those opinions was from a neurosurgeon who is actually a friend of my dad's, he was retiring at the time and he started, I guess instinctively to push surgery, but after I had explained to him the info I had found during my research, he seemed to catch himself and agreed radiosurgery was a good choice. Dr. Kresl is a great doctor, he is very genuine in his desire to cure without impacting the quality of life, I highly recommend Barrow. If you have any more questions feel free to send me a message or an e-mail. Good luck.

[shoegirl]

I have heard of Dr. Kresl and heard he is good.  Did it take you a long time to get into Barrow's?  Did you have any hearing loss before CK?  How about after?

[jamie]

No, quite the contrary, I got in the same day I found out about my tumor actually. I don't actually have an AN so I have great hearing, my schwannoma is on the nerve(s) right below the vestibular nerve. Almost the exact same thing, except the lower nerves are said to compensate better for nerve damage, so I haven't had any issues whatsoever. If I did it would be trouble swallowing or problems with my vocal chords, but I had a vocal chord test and it was perfect, no trouble swallowing either. Since the earaches are gone, I wouldn't know I had a tumor.

[shoegirl]

My Dr. is suggesting going to Banner Good Sam.  I know that I want FSR but I am very concerned about where I go and who does it.  I can't seem to find good information on how these centers are rated or their success rates.  I have found some good articles about fractionated radiation which makes me feel really good about the recommendation from my Dr.  I am thinking about getting a consultation at Barrow's but my Dr. doesn't work with them.  I have been playing phone tag with the coordinator.  Thanks for all the advice.  I appreciate it!

[JHager]

Hi Suzanne,

My son was treated at Barrow for a seizure condition.  I have a 3cm being removed surgically in two weeks, and my neurosurgeon was trained at Barrow.  I can say, in all honesty, it's one of the most impressive facilities I've ever seen.  (I also come from a 'medical' family - three surgeons in the bunch!)  The staff is fantastic, they're at the cutting edge of medical technology, and Phoenix is a great town to spend a few days in while you're being treated.  I would highly recommend choosing it.

Coincidentally, there is another 'Sue' AN patient who just had FSR at Barrow earlier this month - she also had a great experience.

Good luck, and keep us posted!

Josh

[shoegirl]

Josh,

I wish you the best of luck with your surgery!  Please let us know what happens and how your recovery goes. Do you have any hearing in your AN ear?  What did your surgeon say about preserving hearing and possible facial paralysis?

I am hoping to get an appointment with Barrow's in the next couple of weeks.

Thank you for your advice!

[JHager]

Hey Suzanne,

No, the hearing in my right ear is shot.  This may actually prove beneficial, as the docs think I've also lost my balance function in the process.  So, I hopefully won't have to deal with the dizziness/vertigo/nausea aspects of recovery.

Preserving my facial nerve is my biggest worry.  With large tumors, the risks are greater that facial nerve damage will occur.  Fortunately, my surgeon also does gamma knife; he will leave a portion of the tumor to keep the facial nerve going if that's the best thing.  Then, we'll monitor the tumor and hit it with gamma if it grows again.  Cool stuff.

Glad to hear you're contacting Barrow.  If you go, drop me an e-mail.  I can give you all the ins and outs of the area, especially a great hotel just down the street.  We were there for eight nights while my son was at Barrow, and my wife and I grew very familiar with the area.

Josh

[jamie]

I also can assist with navigating the area, I live in Phoenix and actually work right nextdoor to St. Joseph. It sure was convenient, I just walked over from work for my consult, MRI and CT, and then for my actual procedure. I only missed an hour ot two from work each time. 

But since your Dr works with Banner Good Sam, I assume you already live here in the valley.

[shoegirl]

Josh and Jamie,

Thank you both for offering, I do live here in Phoenix.  I am pretty familiar with the area and should be able to find it.I just got my appointment scheduled today and I get to meet with Dr. Kresl on the 10th of November.  I am hoping he has a cancellation so I can get into see him sooner.

Best wishes to you both, Josh can I ask you what made you decide to go with surgery?  Is it the size of your tumor?  I still think I want radiation but I still feel like I need to understand both treatments.  Your advice would be great if you feel like sharing.

Jamie are you involved in the local AN support group? Maggie at Barrow's mentioned it to me.  I am thinking about getting involved. 

Thanks!

[jamie]

No, I'm not involved. I didn't really know it existed, but they may not have mentioned it to me because I don't have an actual AN. Plus, there's not really much I need support for, I don't have any of the problems like single sided deafness or vertigo, I just had earaches, and feel pretty much the same as I always have, minus the earaches thanks to the CyberKnife.