Stanford is Outstanding!

[terriann]

I just returned from receiving CyberKnife at Stanford.  It was an extraordinary experience.  Every staff member I encountered was caring and concerned, sometimes jovial, sometimes wry, but always professional.  Admittedly, I was very apprehensive about the whole procedure and quite nervous about receiving the treatment.  But everyone put me at ease and in the end I had nothing to be anxious about.  Everything went smoothly and even the weather cooperated.  My husband and I enjoyed a lovely week of sightseeing in between appointments.   I am absolutely certain that I made the right decision and am so grateful for everyone who worked on my case.  What everyone  says about Stanford and the staff there really is true.

[leapyrtwins]

Terriann -

thanks for the glowing report on having CK @ Stanford.

I've always heard wonderful things about them and it's good to know there's another satisfied customer out there.

Reports like this are very important to newbies - and oldies alike - and also to those trying to decide on their treatment.

Best,

Jan

[Jim Scott]

Terriann ~

Congratulations on your successful CK experience at Stanford - and for sharing it with us., here  This kind of feedback is invaluable to AN patients considering CK at that institution and with your post, you've done those folks a great service.

Jim

[LisaP]

congrats on a great experience.  Keep us posted on how you are doing.


LisaP

[Tisha]

Terriann,

I felt the same exact way!  Thanks for sharing your experience, especially for all the newly diagnosed.  I'm glad the weather cooperated.  Did you go walk down University Blvd. in downtown Palo Alto, sit outside on the sidewalk and have a toast?

[terriann]

We did a lot of walking, including at the University and Palo Alto.  My husband went for a couple of runs while I was inside.  And we sat on many a sidewalk/patio and had a variety of drinks and many meals.  It felt very surreal, because it was the "perfect" vacation, while at the same time I was receiving medical treatment.  Weird!  But I must say, all my nervousness beforehand was unfounded.  It was the easiest, most painless medical experience I have ever had.  I guess the hard part will be waiting for the next MRI.

[Tisha]

I went for my treatment in 2009, and it seemed I took more "vacations" that year than many before...including a cruise, Myrtle Beach and Vegas.  My week at Stanford (Sat - Sat) with my DH was my favorite.  I call it my Acoustic Neuroma vacation.  I only spent 10 hours at the hospital the entire week including all my treatments.  The rest of the time I felt great and we did more site-seeing.  Went to movies, ate out everynight.  I agree, it was surreal that it was so much fun...and I was having radiation. 

[4cm in Pacific Northwest]

I am guessing that the microsurgery experience is quite different there to the cyber knife experience. 

Although my tumor dissection was well done on a very difficult and massive atypical AN by competent teaching surgeons the post op care, my many complications that resulted: to students NOT being supervised adequately nor totally versed on post operative brain swelling and CSF leaks etc... my files getting lost in the big impersonal SU system as it gets passed from one desk to the next (and not making to my lead surgeon's desk)... has left a lot to be desired... I still feel there is plenty of room for improvement in the microsurgery area there for the treatment of AN's. I had great nurses on the neurosurgery ward but in ICU it was just dreadful. Currently I felt I was viewed more as a research specimen than a patient who needed lots of help to get back to their best potential- after the tumor was removed.

I have heard from others too that their cyberknife with Dr. Chang has been a good experience... I am happy for you that this was the case also.


One book, to me anyway, that describes my experience is
Seven Blind Mice- by Ed Young
http://www.amazon.com/Seven-Blind-Mice-Caldecott-Honor/dp/0399222618
... In a figurative way it approaches the elephant-in-the-room

Another one that described my experience was by the famous great “DOCTOR”...
Seuss's Daisy-Head Mayzie
http://www.amazon.com/Daisy-Head-Mayzie-Classic-Seuss-Dr/dp/0679867120
This line of pertinence to me
"Dr. Eisenbart. "I think that Mayzie and her plant / Could help me get a research grant"

I understand the need for research and experience for the advancement of medicine... but there needs to be work on the human element that we patients are not specimens and file numbers but we are PEOPLE.

It is not the Harvard, Stanford graduates etc. that impressed me the most in this, so far 3 years, journey... it is the perseverance of outstanding patients who provide these professionals with the honest and realistic feedback of the true outcome... not always recorded on medical records. Too me it is people such as Virginia Fickel Ehr that I hold in the highest esteem in the advancement for better treatment for the generations that follow- in regards to the successful treatment of acoustic neuroma tumors specifically. Praised are the medical teams that are receptive to the honest reflective candor of patients and NOT made defensive by it.

Remember it was active perservering patients like Ginnie who has helped to make today's better outcomes what they are today... not just the medical professionals. She, and her friends also with this condition, had the abilty to throw the human element into their many scientific equations.... as they improved on the treatment plan with each generation.

It is my hope that medical teams, all over the globe, will receive praise for their work by experienced patients more and more...and we will read more positive posts like this one in the future. Thank you for posting.

DHM

[4cm in Pacific Northwest]

PS Remember not just to be thankful to Dr. Chang and his team approach but also to Ginny and all the leg work she and her team did to provide access to information so you, the patient, could make good informed choices.

Please view this video.
Here is Ginny and documentation about her efforts... and others before you.
http://www.anausa.org/media/anausa_historical_video.wmv


Ginny- I personally want to thank you from the bottom of my heart as I read stories from those who follow both you and I in time - who are having more successful outcomes... as is the case in this newer postie here who started this thread. 

Terri Ann, Jim, Jan, Tisha and the MANY others who are able to look in the mirror to see a symmetrical fully functioning smile... it was more than just the efforts of your medical team that made that possible... it also came from the leg work of patients with courage and candor before you.... and medical teams that are willing to listen to those patients and apply that feedback to new treatment methods.


DHM

[Jim Scott]

Terri Ann, Jim, Jan, Tisha and the MANY others who are able to look in the mirror to see a symmetrical fully functioning smile... it was more than just the efforts of your medical team that made that possible... it also came from the leg work of patients with courage and candor before you.... and medical teams that are willing to listen to those patients and apply that feedback to new treatment methods.

Excellent observation.  At the time of surgery (2006) my neurosurgeon mentioned to me that, although he had been operating on acoustic neuromas for 30 years, he said that, in the past, he "didn't always get the best outcomes" but that today, thanks to what he and other doctors have learned, AN patients have a much better chance of experiencing a 'good outcome' from surgery and/or radiation.  I did - and I'll always be grateful to (a) God, (b) my neurosurgeon and his team and, (c) as you've aptly stated, the many other AN patients that went before me, helping the doctors learn. 

Jim