Excellent job, as usual, Ray. Promising reply. I have asked that someone from Medtronic look into my case again, and be present at my next programming session. Carole > --- rayilynlee <[log in to unmask]> wrote: > > > Mr. Gregan: > > > > Thank you for your response. I'm wondering if thereExcellent job, as usual, Ray. Promising reply. I have > asked > that someone from Medtronic look into my case again, and > be > present at my next programming session. > Carole > > --- rayilynlee <[log in to unmask]> wrote: > is > > any way for patients to attend the programming > seminars. > > I have that machine that allows you to do it, but don't > > know how to use it. While it is true there are many > > "passive" patients, quite a few of us are capable of > > taking a more aggressive role in our own care. > > > > An email friend of mine in Flagstaff has been given > > instructions as to how to set it herself. She finally > is > > getting straightened out after getting a Medtronic > > programmer after six people. > > > > There was a Medtronic person present at my DBS surgery > at > > Scripps in La Jolla CA. > > > > I'm hoping Medtronic would seriously consider letting > > patients attend the seminars. > > > > Rayilyn Brown > > Board Member AZNPF > > Arizona Chapter National Parkinson's Foundation > > [log in to unmask] > > ----- Original Message ----- > > From: Gregan, Joey > > To: rayilynlee > > Sent: Monday, January 07, 2008 9:56 AM > > Subject: RE: Need for Competent DBS Programmers > > > > > > Hello Ms. Brown: > > > > Thanks for your email and I completely concur that we > > are in need of more highly trained DBS programming > > physicians and nurses in Arizona. > > > > Until recently, the vast majority of patients > referred > > for DBS surgery came from three programs (Barrow, Mayo, > > Univ. of Arizona). All three of these programs have > > excellent programming available. As more and more > > community neurologists become involved with the > therapy, > > they to are wanting to program their patients. We > offer > > a number of educational opportunities for these > > practitioners including Basic, Intermediate, and > Advanced > > seminars. They also can elect to spend "on-site" days > > with experienced centers for hands-on training. > > > > In addition, we recommend to all our newly managing > > customers to allow us to be present for programming > > sessions until they are completely comfortable with the > > process. Most physicians gladly insist we be present > for > > these programming sessions but, some feel they are > ready > > to proceed independently. > > > > In the future, you can ask your neurologist to have > one > > of us present at the next programming session. I have > to > > tell you that DBS programming is more of an art form > then > > a step by step process. There is a lot of trial and > > error required along with balancing the reduction of > > Parkinson medication to coincide with stimulation > > increases. > > > > Please let me know if there is any other information > I > > can provide and feel free to contact me either by email > > or telephone. > > > > Sincerely, > > > > Joseph W. Gregan > > Market Development Consultant - Arizona > > Medtronic Neurological > > V/M 800-638-3143 ext: 95145 > > Cell 480-215-6192 > > [log in to unmask] > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------------ > > From: rayilynlee [mailto:rayilynlee@cox..net] > > Sent: Sunday, January 06, 2008 5:07 PM > > To: Gregan, Joey > > Cc: Carole Hercun; Laureen Antes; Owens, Tess J. > > Subject: Need for Competent DBS Programmers > > > > > > Dear Mr. Gregan: > > > > Perhaps you can tell me who at Medtronic I should > write > > to regarding the need for competent programmers of > > neurotransmitters for Parkinson's patients who have had > > DBS. > > > > As you may recall, I contacted you in 2007 regarding > > the AZNPF Annual Meeting. As a constant poster on a > > Parkinson's website and an ear to the ground in the > > Parkinson's community, I am hearing of more and more > > DBS's gone wrong due to poor programming. I have come > to > > wonder if I could get my voice back with better > > programming of my NTs. The programmer I had at > Scripps, > > La Jolla CA, where I had my DBSs done was much better > > than my current neurologist here in Arizona. > > > > Neurologists and neurosurgeons may be highly > qualified > > in their fields, but are not skilled at programming for > > various reasons. Programming now seems to be based on > > the luck of the draw. > > > > Medtronic certainly has a stake in DBS success and I > am > > hoping they can do something to make better programmers > > available to DBS patients. If there is anything I can > do > > to achieve this outcome, please let me know. If > > something isn't done, the negative DBS experiences may > > outnumber the positive ones. None of us want that to > > happen. > > > > Sincerely, > > > > Rayilyn Brown > > Director AZNPF > > Arizona Chapter National Parkinson's Foundation > > [log in to unmask] > > > > > ___________________________________________________________________________________________________ > > CONFIDENTIALITY AND PRIVACY NOTICE > > Information transmitted by this email is > > proprietary to Medtronic and is intended for use only > by > > the individual or entity to which it is addressed, and > > may contain information that is private, privileged, > > confidential or exempt from disclosure under applicable > > law. If you are not the intended recipient or it > appears > > that this mail has been forwarded to you without proper > > authority, you are notified that any use or > dissemination > > of this information in any manner is strictly > prohibited. > > In such cases, please delete this mail from your > records. > > > > To view this notice in other languages you can > > either select the following link or manually copy and > > paste the link into the address bar of a web browser: > > http://emaildisclaimer.medtronic.com > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.17.13/1213 - > > Release Date: 1/7/2008 9:14 AM > > > > > > > ____________________________________________________________________________________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. 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