 |
 |
Carole, I am so sorry to hear you are having such trouble getting programmed. It is good, I think, that you posted your experience. One list member's mother had a bad experience - was knocked off the table by a programming jolt of juice. It certainly is no walk in the park. In order to have it done twice, I hoped I would die on the operating table. The discomfort level of speaking difficulty approaches pain. Just keeping my mouth shut solves that one, but it is hard to communicate because I can't write either. However, I don't know how I would have been able to live with those killer tremors. We PWPs are stuck between a rock and a hard place. It is not an easy choice. We need better ones, for sure. Here's hoping they get you programmed correctly. And soon, too. Ray Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ----- Original Message ----- From: "Carole Hercun" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, January 04, 2008 6:20 AM Subject: Re: DBS results/An Experience > Ray, I keep reading all these wonderful > > DBS success stories, and while I am sure that the patients > are sincere and well-intentioned, I think it is important > to understand that it is no walk in the park. I thought I > was well prepared for my October of 2007 surgery. After > all, I was an R.N., had attended a conference on the > subject, met with a Medtronic rep, spoken in person to > fellow PWP's who had had the operation, watched the movie, > and emailed trusted internet friends. I thought I was > prepared. I wasn't. > Oh, it wasn't what i was worried about- the head shaving, > the drilling through my skull, and the screwing in of the > halo apparatus. It was the little things- like the weight > of it as it held me pinned in one position like part of > some butterfly collection while my back spasms continued > for hours, during the pre-and post-op MRI's and the surgery > itself. > And the bigger things-like the programming that has been > going on for two months now, still with unsatisfactory > success. The man from Medtronic, who make the > neurotransformer, tells me there is no "book," and that he > services many of the major centers on the East Coast, and > that they "all do it differently." And that there are > literally thousands of settings. > In the meanwhile, as they tweak my settings yet again I > know how Elsa Lancaster got that streak of white hair in > "The Bride of Frankenstein." > In conclusion, let me say that I am not trying to > discourage anyone from DBS. It is one of the newer tools in > our fight against Parkinson's and I believe you should use > any weapon you can get as you battle this monster. I just > want to inject a dose of realism into the mix. > Carole Hercun > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > d > > > > > > > > > > > > --- rayilynlee <[log in to unmask]> wrote: > >> Parkinson's treatment inspires hope >> SCOTT FONTAINE; [log in to unmask] >> Published: January 3rd, 2008 01:00 AM >> Every second of every day, battery packs embedded in Rich >> Hammermaster's >> chest send pulses of electricity through wires implanted >> on the sides of his >> neck to electrodes deep in his brain. The voltage of the >> electricity is >> low - if a static spark of the same strength jumped from >> a door handle to >> your hand, you wouldn't notice. >> The treatment is called deep-brain stimulation, and it's >> been approved in >> the United States for the past five years. >> It's not a cure, but the technology - described as a >> pacemaker for the >> brain - has improved the lives of Hammermaster and >> thousands of others with >> Parkinson's disease. >> "The first 15 minutes of your mornings are the toughest >> with Parkinson's," >> said the Puyallup resident. "I had trouble getting out of >> bed. Since I've >> had the surgery, I can get right out of bed. I can turn >> over and kick my >> cover up. I couldn't do that without the volts." >> Parkinson's disease is marked by a deterioration of the >> brain cells that >> govern dopamine, the neurotransmitter that helps regulate >> neurons. When the >> brain has insufficient dopamine, some neurons work >> erratically. That leads >> to stiffness and other motor-activity symptoms in >> patients. >> Deep-brain stimulation doesn't actually stimulate the >> dopamine-producing >> cells, said Peter Nora, a neurosurgeon at Swedish Medical >> Center in Seattle. >> The electrodes quiet the cells. That's the general >> concept of how the >> surgery helps patients with Parkinson's. >> The specifics are a bit fuzzier. >> "The short explanation is nobody knows how it works or >> why it works," said >> Nora, who operated on Hammermaster and about 260 other >> patients. "We take an >> equation that's out of whack and restore it to something >> closer to normal >> activity." >> Doctors affix a frame to the skull to keep the head in >> place, and a CT scan >> is performed to target the location for the electrode: a >> 7-by-9-by-7-millimeter area. A hole is drilled in the >> skull, and the surgeon >> places the electrode in. The patient, still awake at this >> point, answers a >> series of questions to determine the stimulation's >> effectiveness. A wire is >> then tucked under the skin and run to a battery implanted >> in the upper >> torso. >> The science behind deep-brain stimulation is rooted in >> the 1940s and '50s, >> when doctors tried treating motor impairments by killing >> certain brain >> cells, said Peter Shin, a neurosurgeon on medical staff >> at St. Joseph >> Medical Center. >> That practice was largely abandoned with the introduction >> of drugs, but when >> doctors realized Parkinson's patients couldn't rely on >> medication >> indefinitely, research into deep-brain stimulation began >> in the 1980s. >> Researchers are experimenting with the technique to treat >> Tourette syndrome, >> chronic pain and depression. >> The side effects of DBS can range from depression to >> euphoria but are rarely >> permanent, according to a study published in the Journal >> of Geriatric >> Psychiatry and Neurology. The abstract of the 2004 study, >> written by two >> neurologists in the United Kingdom, is published on the >> National Institutes >> of Health's Web site. >> The procedure has risks. About 2 percent to 3 percent of >> patients experience >> a brain hemorrhage, though not all complications lead to >> severe impairments, >> according to the Cleveland Clinic, one of the nation's >> top hospitals. >> Before the Food and Drug Administration approved the >> technique for Parkinson's >> in 2002, it was available in Europe. Some of >> Hammermaster's friends had >> flown overseas to get the technique performed. When he >> asked them about the >> surgery, they were unanimous and adamant: Have it done, >> they said. >> Hammermaster was taking more than 50 pills a day to >> control his symptoms. >> Sports had always been important to him - he was a >> football player at the >> University of Washington and the University of Puget >> Sound and later coached >> basketball at Puyallup High School - but he began >> avoiding games. He had >> surgeries in October and November to have the electrodes >> installed. >> Spanaway's Jessica Christie is 31 and likely one of the >> youngest patients to >> receive the surgery. She began showing tremors in her >> left arm and a slow >> walking gait in early 2002, but doctors were hesitant to >> diagnose someone so >> young with Parkinson's. It wasn't until October 2003 that >> Christie, a nurse >> at Tacoma General Hospital, received her diagnosis. >> She spent plenty of time browsing online forums like >> Parkinson Profile >> trying to find others in her situation. The youngest >> people she has found >> are in their mid-40s. Christie underwent DBS on Jan. 9 at >> St. Joseph and >> said it's made a major improvement on her symptoms. >> "Before the surgery, I hated leaving my house and going >> on errands. I felt >> like people were always looking at me," she said, adding >> that handling cash >> and holding a child were sometimes challenges. "Thank >> goodness for this >> surgery. It's done a lot for me. It's been so helpful." >> Scott Fontaine: 253-320-4758 >> >> Rayilyn Brown >> Board Member AZNPF >> Arizona Chapter National Parkinson's Foundation >> [log in to unmask] >> >> > ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn >> > > > > > ____________________________________________________________________________________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn