[libra]

I haven't been around for along time, I was well medicated and seemed fine. I was diagnosed with pd in 2004. I was in denial that my pd would get worse. Well, my shaking (like Michael J Fox) is all day now, worse in the evening. My doc tried me on neupro, didn't work and then amantadine, didn't work. I am now considering DBS and have an appt with a neurosurgeon on monday. I have done some research on DBS but would appreciate any feedback from someone who has had this procedure done.

Thank you

[Jim091866]

Hi, I'm Jim. I'm 46 y/o and I've had PD for 16 yrs. I had DBS in 2007. Since then I've had 2 surgeries for replacing the battery generators which are implanted at the upper chest/front of the shoulder. People with a tremor such as yourself respond remarkably to DBS. I would recommend that you have it done at a center for excellence in PD hospital if possible. I have had great improvement with my symptoms, rigidity, slowness in moving. I still however have to take sinemet (generic). Good luck.

[libra]

Wow, you really had early onset pd, I am so sorry. I don't really have tremors in hands, but more of dyskinesia type shaking and jerking like MJF. I am glad to hear the DBS helped you. I am hoping this will help me too. I am 64, almost 65 and never in a million years would have thought I would be considering DBS. I live in Spokane Washington, and was referred to a neuro surgeon by my neurologist, Dr. William Britt. The neurosurgeon's name is Dr. Jonathan Carlson and is supposed to be very good.

[vlhperry]

Hi Libra,

I was diagnosed with PD in 1990, and had DBS in 2007. I feel I have responded well to the DBS because my intent was to decrease my dose of Sinemet and I was able to decrease it by 2/3rds of what I took prior to DBS. If you saw me at by best you would not know I have PD.

Two drawbacks to DBS. You will not be a participant in many research studies. Secondly, there are few studies pointing out long term effects of the therapy. One long term study has shown that over time the metal stmulators have moved or settled a little into the brain. This is important as if it settles a tiny bit it could cause loss of control in the Limbic system (causing damage to your ability to regulate your moods or other parts of the brain.

Young Onset patients who have the procedure earlier rather than later have a more beneficial outcome.

Jim, I have never had my batteries replaced.

Dianna

[bigguyclyde]

I had DBS STN surgery 2 years ago. The results have been very good. I have gone from taking 5 pd meds to 2. I used to take 750 mg of levodopa total, and now I take 200 mg LD daily.

My diskynesia is gone, the tone or stiffness in my limbs is gone, and my overall appearance is 5 to 10 years younger. I still work, drive, walk without a cane, travel and hope to see some of you at the World Congress in October.

As with any surgery, there are risks. 3 patients have died out of 100,000 surgeries done. Infections are more common and you must follow the surgeon's instructions to avoid them. The trend is to perform the surgery on younger patients as they tend to have better outcomes due to less co-morbidities ( better health generally).

I am a 61 year old male, diagnosed in 2004. When I did research before taking the plunge my conclusion was that there are four areas of concern to patients: access to programming, speech difficulties, gait difficulties, and personality changes.

You have to undergo some psychological testing before you have the surgery. Sometimes they have found that a person with a cognitive issue can be made worse through the surgery.

Would I do it again? In a heartbeat.

Clyde

[ParkiWife]

Originally Posted by bigguyclyde

I had DBS STN surgery 2 years ago. The results have been very good. I have gone from taking 5 pd meds to 2. I used to take 750 mg of levodopa total, and now I take 200 mg LD daily.

My diskynesia is gone, the tone or stiffness in my limbs is gone, and my overall appearance is 5 to 10 years younger. I still work, drive, walk without a cane, travel and hope to see some of you at the World Congress in October.

As with any surgery, there are risks. 3 patients have died out of 100,000 surgeries done. Infections are more common and you must follow the surgeon's instructions to avoid them. The trend is to perform the surgery on younger patients as they tend to have better outcomes due to less co-morbidities ( better health generally).

I am a 61 year old male, diagnosed in 2004. When I did research before taking the plunge my conclusion was that there are four areas of concern to patients: access to programming, speech difficulties, gait difficulties, and personality changes.

You have to undergo some psychological testing before you have the surgery. Sometimes they have found that a person with a cognitive issue can be made worse through the surgery.

Would I do it again? In a heartbeat.

Clyde

Our friend has had two DBS's. Can't recall why they did it twice. The issue, aside from potential infection, is that in order to remedy the PD symptoms, they must pass thru areas of the brain that control other things. My friend's issue is speech. Even with exceptional programming, he still has difficulty getting the words out, and when he can, he can't get the volume to a level that most people can hear.

Keep in mind that patients who exhibit signs of dementia, or who have hallucinations or other psychotic attributes, are not likely to get DBS. My husband falls into that category. No one will touch him with his history of hallucinations, paranoia, and dementia.

I guess the bottom line is there is no "one size fits all" for PD treatment.

[libra]

I apprpeciate all the comments. I am having such bad dyskinesia now, it lasts almost all day. It is hell that is for sure.

I saw the neurosurgeon and he said I was an excellent candidate for DBS as I was also an early onset pd. I told him I wasn't so early, I am almost 65. But he said I got it when I was 55, that is early onset. Anyway, at this clinic, they do about 2-3 dbs's a month. So I am going to try to schedule one in October.

I am so glad I am a good candidate, but am still somewhat scared to have this surgery. I have had so many surgeries in my life, all orthopedic, that I wonder if my body can take any more.

I guess I will do it, what else can I do?

[NorCalGal]

Im 52 and was dx'ed in 2009. I still work 6 1/2 hours a day and drive but dont cook. Most days I have very little dykenesia (except for right NOW) and dystonia is a mostly every day occurance. I passed all the tests with flying colors and am just waiting for a surgery date. My surgeon will be Conrad Pappas. Do they use a robot or is this a "hands on" procedure?

UPDATE Just gota call. Looking at possible surgery date in late Nov-early Dec. Meds still haven't kicked in yet today so it can't come soon enough!

[Fowki]

I was diagnosed in October of 2006, after eight years of misdiagnosis.

I am 50 y/o and had DBS June 22, 2010. I wish I could have talked the doctors into doing it much sooner! I had a great deal of apprehension and fear preceding the procedure. However, I got over that after considering my ability to enjoy watching my six grandkids grow up....for them, I would do anything.

The worst part of the procedure is being awake in the OR, but then you feel the miracle happening to your body and every bit of discomfort goes by the wayside!

It is a miracle and I would be happy to talk to you more about my experiences, if you would like....fowki@cox.net.

[Evon]

I was diagnosed with P.D in Sept. 2003 at 49 years old. I have been offered DBS surgery and turned it down twice in the past four years. My anxiety about the post surgery side effects such as speech, balance, depression, personality changes make me wonder if it is worth the risk. Also, the Dr's don't seem to be able to give any indications whether it will help to relieve the dystonia. If any of you who are dealing with dystonia have had DBS surgery I would like to hear from you. I need to make a decision soon before I deteriorate further. I am presently taking 8 sinemet 100/25 x day, 8 mgs requip x a day. These meds are spread out almost hourly to maintain a level that will prevent fluctuations. It has become very unpredictable, dystonia attacks are frequent and very debilitating. Running out of time, is DBS the right thing to do?