Newly Diagnosed

[Mickey]

Hi Dakota! Yea it`s kinda shocking when you hear about something you probably never heard before. Well the good news is much has been done over the years to treat this nuisance and let you live a pretty much normal life. Especially in your case so small with plenty of time to go over your options to see what fits your self. I`m still watching and waiting 12X06mm with minor nuisnces and will probably leave it alone untill someone convinces me to take it out. To each their own with alot of information on these boards to help you with some great people! Good Luck, God Bless, Mickey

[Mark]

Assuming you want warm weather to go with your salt water fishing, how does Florida sound?     I would suggest posting over on the CK board and asking for Dr. Spunberg who volunteers over there. He's located in Palm Beach. Harvard Med school trained, so one can assume he's a pretty smart guy 

Here's his Bio

Best

Mark

Jerome J. Spunberg, M.D., FACR, FACRO
Radiation Oncology Institute &
Cyberknife Center of Palm Beach

10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410

Email: jspunberg@radiationoncologyinstitute.com
www.radiationoncologyinstitute.com

Phone: (561) 624-1717
Fax: (561) 296-4270

Dr. Spunberg is a board certified radiation oncologist practicing in Palm Beach County, Florida for over twenty years. He is a fellow of both the American College of Radiology and the American College of Radiation Oncologist. He graduated from Harvard Medical School and completed his residency training in radiation oncology at Columbia-Presbyterian Medical Center in New York. Particular interests include the use of Cyberknife in prostate and lung cancer, as well as intracranial and spinal tumors. He is especially excited about combining treatment with the Cyberknife with other therapeutic options such as IMRT and chemotherapy.

[Mark]

Dakota,

I guess I'm good at posting doc bio's tonight 

To follow up on Francesco's post , here is a bio and contact info for Dr. Chang at Stanford

mark

Steven D. Chang, M.D.
Assistant Professor of Neurosurgery
Director of Cyberknife Radiosurgery
Stanford University
Email: sdchang@stanford.edu
Curriculum Vitae (CV)

Patient appointments:
(650) 723-7093 Neurosurgery Clinic

Dr. Chang specializes in the treatment of vascular disorders and tumors of the brain and spinal cord. He is the Neurosurgery Director of Cyberknife Radiosurgery. His cerebrovascular work focuses on the use of surgery and radiosurgery for cerebral aneurysms and vascular malformations (AVMs). He also specializes in surgical and radiosurgical (Cyberknife) treatment of brain tumors such as acoustic neuromas (fractionated radiosurgery), meningiomas, brain metastases, and pituitary tumors. He is one of the few physicians in the world today specializing in radiosurgery treatment of tumors of the spine. His research focuses on the development of new methods of utilizing stereotactic radiosurgery and Cyberknife â„¢ for the treatment of tumors of the brain and spine. Dr. Chang has also published numerous articles, abstracts and book chapters on the subject of cerebrovascular disease and radiosurgery treatment of brain and spine tumors.

[Tumbleweed]

Hi, Mark and Palace:

I noticed you both had CK treatment at Stanford with Iris Gibbs serving as radiation oncologist on the team. I am scheduled for CK at Stanford in just over 3 weeks but don't yet have an RO assigned to my team. Were you both happy with Gibbs?

Thanks for any info and/or opinions you can give me.

Best,
Tumbleweed

[Tumbleweed]

... I didn't always make good decisions about how I was taking care of myself (ie a little too much comfort food, staying up too late, etc).  Eat right, stay active, and most importantly...get enough sleep!  It sounds "momish", I know...but it's easy to indulge when you're feeling threatened.  Also, I've learned that my vertigo episodes almost always happen when I'm overtired so now I force myself to turn off the pc and go to bed at a reasonable hour.

I totally agree. Getting enough sleep seems to be the biggest factor affecting how I feel. But a healthy diet and regular exercise also make a huge positive impact. I found that when I don't walk or hike for a few days or more, my balance gets worse. This is because our sense of balance comes from three areas of sensory input: 1. the vestibular system (which ANs usually screw up, because the vestibular or balance nerve is usually where the tumor originates), 2. our eyesight (i.e., do our eyes tell us our head is upright or tilted?), and 3. the proprioceptors in our feet. When you walk (especially over uneven ground), you stimulate #2 and #3 and your brain learns to trust them more and ignore #1 (the deranged signals your vestibular system is sending to your brain).

Early on in the course of my illness (before it was diagnosed as a tumor), I found that when I went on hardcore cross-country backpacking trips (climbing up boulders and scrambling in and out of canyons), my balance improved dramatically -- to the point where, after 3 days of cross-country scrambling -- my balance actually returned to normal! (How wonderful was that!) But unfortunately, the improvement was transitory. After the multi-day backpack trip was over, my balance would slowly worsen again until it ultimately returned to its former impaired state in about 48 to 72 hours. The point is, regular exercise is needed in order to have more or less lasting improvement in your balance; otherwise, it will revert.

After years of having this illness (undiagnosed til recently, and as yet untreated), my sense of balance unfortunately never returns to normal anymore -- even after backpacking or hiking. But the exercise does improve it noticeably.

Best wishes,
Tumbleweed

[Mark]

Tumbleweed,

Dr. Gibbs is top notch and I would consider her the "A" player among some very good radiation oncologists there. Last I checked she was also co-director of the CK program at Stanford with Chang. As you noted, they were both my docs although Chang has been my primary physician for AN care over the years and as you would assume from my treatment date of 2001, both have been involved with CK essentially from the inception at Stanford. There are obviously others who are equally capable but she has a ton of CK expereince.

Mark


PS she is the lady on the left in this picture with Dr. Chang pointing to the second CK installed at Stanford

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default

and here is her bio ( I'm getting good at this part  )

http://www.stanfordhospital.com/search/PhysicianDetail?doc=2185

Iris C Gibbs, MD
Co-director, Cyberknife Radiosurgery Program
Associate Professor

Make an Appointment

Clinic:    Radiation Therapy
875 Blake Wilbur Dr Clinic D
Stanford, CA 94305-5847
(650) 723-6171

   
   
Office:    Radiation Oncology
875 Blake Wilbur Dr MC 5847
Stanford, CA 94305
(650) 736-1480
   
   



Specialties:    Radiation Oncology

Sub-Specialties:    CNS Tumors
Stereotactic Radiosurgery

Research Interests:    View Research Interests and Publications



Professional Education:

   Stanford University School of Medicine, Stanford, CA, 1995

Internship:    Highland General Hospital, Oakland, CA, 1996

Residency:    SUMC - Graduate Medical Education, Stanford, CA, 2000

   
Board Certification:

   Radiation Oncology, American Board of Radiology

Years on Staff:    7

[Tumbleweed]

Thanks a ton, Mark. That's all very helpful info!

Best wishes,
Tumbleweed