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I am 60 years old and had DBS one year ago, Nov 9th and have felt it was effective. I have fewer ups and downs and am able to eliminate much of the medidation I had been taking. I had the surgery done on both sides.
Posts: 2 | From: Billings, mt | Registered: Nov 2006
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I am 63 and have had PD since 1988, 18 years ago. In 2002 I was just about wheelchair bound when my Movement Disorder Specialist recommended that I get DBS bilaterally (both sides).They were not doing it at the hospital I use so I went to Cleveland Clinic that was one top DBS hospitals centers in the country. What was supposed to be a 6 hour operation took 12. The first site caused my eyes to lock left when the doctor asked me to follow his finger which he moved in that direction. The second caused my fingers to freeze when I was asked to follow his finger moving in that direction. Part of the extra time way hve been caused by the experiment in electronically monitoring what was taking place. When my wife and our best friend visited me in the recovery room they were amazed how well I could move and smile with the system not turned on yet. They waited two weeks to turn it on to allow any swelling that may have occured to return to normal. It took several months of adjusting the system to get it properly regulated. I now take lower levels of medicine,and greater intervals. I can walk without any assistance for a mile ot two, maybe longer. Without the surgery I would now be confined to a wheelchair. Like so much of PD medical options, the results very between individuals. Most people that I know who have undergone the DBS surgery have done well. Some have not. At least one of these individuals had poor medical doctors handling her case. For more information try the "We Move" Website Parkinson foyer that is accessible by the chat tab on the top of this website. They are now using the procedure to help cure stroke patients and various forms of dystonia. They have also uped the age level from not over 70 yesr to not over 80 years. Good luck to you and your dad.
Posts: 35 | Registered: Jan 2005
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hi my name is chris i am 41 yrs old male just had dbs one side they just turned on my generator and did some adjustments can anyone tell me does it take a while to get the adjustmentes right i was told it will take about 4 months to get close ...thank you for any help
-------------------- dx: 1999 treated at robert wood johnson dr jacob sage just had dbs in ny dr robert goodman Posts: 1 | From: south jersey | Registered: Jan 2005
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Hi, I was diagnosed with PD in 1998 at the age of 38. I had a slight tremor in my right hand, thought it was from tennis since I was playing about 2 hours a day. Was put on every drug imaginable. Finally I was put on Mirapex and Requip. Seemed to work just fine until I had a weight gain of about 80 pounds in about 4 months and gambled/spent around $400k. My doctor wisely recommended DBS. It was a miracle surgery for me. No shakes at all after I was adjusted, and just a great, NO MORE MEDS! My compulsions stopped not long after the surgery. That was 2002. In early 2008, it seemed the disease had hopped over to my right side. Developed a tremor in my left hand and leg. It seemed worse than my right had ever been. Had another surgery in late August of 2008. Same neurologist, different surgeon. This time it didn't go well at all. My tremor is even worse and I am on Stalevo. I have been med-free since 2002. As you might imagine, the last thing I wanted was meds again. I am going to see about having a 3rd surgery for my left side. I just can't imagine no improvement at all. I still have absolutely NO symptoms on my right side. This last surgery was very painful b/c of some incision behind my ear. There was no incision like that in the first surgery. Also, the first battery is not visible, except for the scar. The second on sticks out so much I can literally "pick it up." I highly recommend the DBS, as early as possible, as does my neurologist. However, this time I am going to see a neurosurgeon who only does that type of surgery. My last surgeon did not "specialize" in it. Even though I had the surgery at a young age, my neurologist says that almost any age will show definite improvement. I highly recommend it.
Posts: 1 | From: new orleans | Registered: Apr 2009
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Hi, I am 23 and was diagnosed with Sydenham's chorea in '06, but the doctors now have taken back the diagnosis and still don't know what I have. I have tremors in my left shoulder and neck and right hand which has now almost fully contracted. I am getting very frustrated with not knowing whats wrong with me. For the past year and a half, my neurologist has been using botox very effectively. Unfortunately, my body is becoming tolerant of the botox and my doctor is now suggesting we seriously consider DBS in the next year or so.
I am pretty scared about DBS, but many of the people I have talked to so far have had good success with it. But I just don't understand how they can do it if they don't even know what I have? Also, I know this seems petty but I have worried about the battery pack sticking out like Breezy was mentioning. I am young and single and I already have enough physical deformities from this stupid disease. I don't need any more constant reminders.
Can anyone tell me more about the actual surgery itself and how long it takes to recover? Anything else I should consider in making this decision? I am a med school student so I know a lot of the facts and technical details but that just makes it worse.
posted
I don't know about your specific case, you should get your doctor to explain it more thoroughly. But I and a friend of mine have had something that sounds similar, and if it's like what we had, I can tell you this much: They will probably do some testing first (maybe intracranial EEG, or SISCOM, I had both) to find the part of your brain the movements are coming from. Once they do this, they can put a grid over the area, and stimulate different parts of the grid to see what works. They may decide to put in a depth probe too if there's a spot that showed up on a scan as active. The process may last a long time, and it will not be fun. But it was worth it to me! I didn't actually end up with DBS though. The stimulation helped them figure out very specifically what part of my brain was causing trouble, and they removed that part, which they recommended above stimulation for me.
A good team of doctors is everything. I definitely recommend the Mayo Clinic. That's where I had my surgery done, and they are number 1 for neurosurgery. Plus they have a lot of fancy equipment and some really genius doctors. Hope that helped! Chloe
Posts: 133 | From: southern US | Registered: Nov 2007
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Yes, definitely. I still have to take some medications, but nothing too bad. You can see my before and after video if you go youtube and search for "before and after brain surgery for movement disorder"
Posts: 133 | From: southern US | Registered: Nov 2007
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DEAR CHLOE, THE VIDEO IS WONDERFUL, THANKS FOR SHARING. I AM SO HAPPY FOR YOU AND HOPE YOUR GOOD HEALTH CONTINUES. HELEN/FL
Posts: 159 | From: florida | Registered: Feb 2008
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Thanks for the advice...and especially thanks for putting together that video. I have for a long time wanted to video myself but been too afraid to see it on a permanent record (though one exists out there somewhere with some of my doctors). But your video was truly inspiring. I am so happy for you that everything has worked out this way. What was your diagnosis?
Posts: 6 | Registered: Jan 2009
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My movement disorder doesn't really fall into a specific category, so it doesn't exactly have a name. It's caused by cortical dysplasia, which is a brain condition that usually causes epilepsy. But none of the tests picked up any epileptic signals. The movements are definitely myoclonus, but that's the symptom, not the diagnosis.
EmilyK, I was afraid to put a video of myself on permanent record too. But now I'm really glad I did. Most of my friends here at college have no idea what I've been through. And even though before my surgery all I wanted was to be normal, there's no way a friend can get to know me now beyond the surface without knowing my biggest struggle. And as a video it's not like I have to carry it around and show it to everyone. You know, it affected me, as in I learned things from it, but it's not me. Anyway those were just my reflections. I'm panicking about finals right now just like everyone else. Gotta go study! Chloe
Posts: 133 | From: southern US | Registered: Nov 2007
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HELLO I WAS WONDERING DID YOU HAVE THE DBS SURGERY,I HAVE PARKINSON AND THEY SAID THAT I HAD THE CERCELLUR TYPE.AND SO I HAD A LOT OF PROBLEMS WITH IT.I HAD TO HAVE 5 DIFFERENT SYRGERY,DUE TO INFECTIONS AND EVERYTHING ELSE.I EVEN GOT MRSA DUE TO AN INFECTIONS..PLEASE LET ME KNOW HOW IT WENT IF YOU HAVE HAD IT.THANK YOU JANICE
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