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Topic Deep Brain Stimulator Go to previous topic Go to next topic Go to higher level

By daughter On 2012.07.26 22:48
My motherís doctor suggested she be evaluated for a deep brain stimulator for her increased mobility, balance and freezing issues. Iíve done some online research and Iím finding two very different opinions about what this procedure assist with. A couple of articles state that it only helps with tremors that cannot be managed with medication and provide no benefit for freezing and balance /mobility issues. Other articles state it is beneficial for balance, mobility and freezing. Before someone drills a nickel sized hole in her skull and pokes around in her brain Iíd like consistent information. Does anyone know someone who has had this procedure for mobility, freezing and balance? Her tremor is well regulated

By barb On 2012.07.27 06:57
We just heard a doctor speak who said DBS could help tremor, rigidity and slowness. He is the first doctor I've heard who discussed the procedure in plain English.

By lurkingforacure On 2012.07.27 07:11
Yahoo has a huge dbs group and i would go there first and read everything i could. i also know that they use difference places to put the leads in, and that can make a difference. one person on another forum's wife had dbs in the 'ppn', pineal nucleus, not sure exactly where that is, but he had to go to canada to do it and it helped with the non-tremor aspects of pd well, at least for awhile, i believe the doctor was dr. lozano....they had to become a patient to get this doctor but lived just across the us/canadian border so made the trek to get established and then had the surgery.

from everything i have read, dbs usually helps for awhile, with some aspects of pd, and then it doesn't help anymore. there are some posts here about dbs as well, you might want to read those too. the good thing is that there is lots of data on it, as well as patient's personal experiences, as well as caregiver who live with the dbs too, so that may help in your decision.

By parkinit On 2012.07.27 20:19
My husband had DBS a few years ago. It does help some with rigidity issues initially. He doesn't have the shaking, just the rigidity. What we were told is that it is more effective with those who have the shaking. However, it does help others by giving them longer time between pills. With us, this phase only lasted a year and then we found that adjustments caused him to lose his speaking abilities and started his drooling, which we never eliminated once it started.

It bought him possibly a year, but not sure the procedure was worth that.

By cmonge On 2012.07.28 12:21
My husband had DBS a year ago and it elimated tremors, period. The neurologist and neurosurgeon, both who are top in their field were honest and said it would not help with balance. It helped with rigidity for a while but it's back. Also, it really does affect speech. If your husband doesn't have a lot of shaking, I would wait.

By karolinakitty On 2012.07.29 19:26
daughter....there is a chatroom @ parkinsonschatroom.com

There are lots of folks there who have had DBS surgery....in fact the couple that runs the site BOTH had DBS and are doing great...both were in bad shape before DBS...

Best time I guess to go would be mon-thurs around 7-7:30 central time....

We had a point where we were told my guy might have to consider it and they told us a lot about it...good and bad....

of course every person is different and every person reacts to it different...best of luck

By packerman On 2012.07.30 13:49
my hubby got his DBS 5 years ago and it really improved his quality of life.
he goes in two weeks to have his battery replaced (out patient).
Pat

By JBehler On 2012.07.31 15:39
My husband had DBS implants approx. 7 years ago. It has made a tremendous improvement in his quality of life. Immediately he cut his meds dosage in half. Every 6 mo. he sees the neurologist for a "tune up". DBS does not stop the progression of the disease. It helps to cut down on the amount of meds. taken when the meds are no longer as effective by themselves. The stem has little segments that are tuned up to affect different areas of the brain. In tuning one area, another may be compromised. To ease ridigity in legs, for example, he may loose volume in speech. That was not necessarily the exact trade off, but you get the idea. There is always compromise. The one area that could not be helped is balance. Hubby's batteries have been replaced once so far and that was out patient.

By Laurel On 2012.10.13 02:57
My husband had DBS seven years ago and has been completely off PD drugs since. He still freezes up sometimes, but everything else is in remission. He still has restless legs, but that may or may not be the PD. He successfully takes Requip.

A warning about DBS: it does NOT help with any cognitive difficulties that arise from the PD. My poor sweetie is starting to suffer more and more from confusion and "spaciness." And he's a writer. (Insert PG-13 word here.)

As others have said, I HATE THIS DISEASE!

By Laurel On 2012.10.13 15:06
I did forget to mention, although the other forums certainly will, that in a small percentage of patients DBS can cause some obsessive behaviors. With my husband, it's eating (btw, obesity is not a good idea with movement disorders...). With others gambling.

By LOHENGR1N On 2012.10.13 18:55
Laural, Requip is an anti-Parkinson's medicine to say he isn't on any parkinson's medicines since the DBS is misleading and inaccurate.

By parkinit On 2012.10.13 22:51
It should be mentioned too, since it was eluded to here, that on the average, and we were told this up front as well, the DBS patient gains 30 pounds. My spouse gained about 25 pounds after DBS.


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