[2snowbells]

DBS (Deep Brain Stimulation) may not be for everyone?

I was PD diagnosed 4 years ago; however I began noticing a change in my handwriting 11 years ago. Initially, I have tried more than 6 PD medications but with each one, the side effects were worse than the resting tremors, inability to hold a spoon or the extreme tiredness I was encountering. So, some 16 months ago after evaluations by a leading neurologist and subsequent neurosurgeon, the neurosurgeon performed the DBS procedure on me. Prior to that, it should be noted that the resting tremor was very prominent in my right hand and slight in my left, but was in control of my balance, walking, and had strength that I no longer have. One week after the implant of two wires, I had the stimulator placed. Three days after this first step, the implant, my right eyelid drooped, but then corrected itself.

Two weeks after the insertion of the neurostimulator in my chest, constant dizziness set in and is still with me to this day. Additionally, both upper eyelids look equally droopy, and other signs of Parkinson’s manifested itself, including my formerly normal walk now is that of one who has been dealing with PD for years. In short, I wonder whether the surgery had accelerated my PD within this short a time span. I had conversations with my neurologist who suggested that I am one of two DBS patients who have noted the same complaint and it seems that DBS may not be the answer for everyone. I am beginning to have swallowing difficulties as well. Frankly, in hindsight, I wish that I had not had the implant, but the numerical testing criteria scale showed that I was a candidate for the procedure. The procedure is supposed to be reversible, but I wonder whether or not it may be too late to undo the progression caused by the DBS--if that were the case. Has anyone here on this forum had DBS and can relate to the described problems?

Jerry

[Conductor71]

I won't even begin to guess what is going on but just want to say sorry you should have to experience any of this. Did you have any sort of PET or SPECT scan before the surgery? It's not definitive for PD but the closest we have to any real measure of the dopamine levels in our brain.

What were your less bothersome symptoms besides tremor? I presented with a tremor that was atypical of PD and was under a neurologist's care for five years before doctors noted slowness and rigidity as my lesser symptoms. If I am not mistaken there are four cardinal signs and we are supposed to show two before a diagnosis of PD. Don't mean to alarm you - I think we all tend to ignore our lesser symptoms.

This disease has a mind of its own. Like you, I had a prominent tremor and some slowness...basically looked 100% normal on meds. After six months of acute stress at work, I woke up and had freezing of gait...out of the blue.

Anyway, there is a very active DBS Group on Yahoo. Over a 1000 members; surely someone will know what is up. Frankly, here you could be waiting days for a response...at Yahoo you'll connect much faster.

http://health.groups.yahoo.com/group/DBSsurgery/

Please check back in with us when you learn anything. Our DBS candidates will want to hear an explanation...

Best wishes!

Laura

[made it up]

Originally Posted by 2snowbells

DBS (Deep Brain Stimulation) may not be for everyone?

I was PD diagnosed 4 years ago; however I began noticing a change in my handwriting 11 years ago. Initially, I have tried more than 6 PD medications but with each one, the side effects were worse than the resting tremors, inability to hold a spoon or the extreme tiredness I was encountering. So, some 16 months ago after evaluations by a leading neurologist and subsequent neurosurgeon, the neurosurgeon performed the DBS procedure on me. Prior to that, it should be noted that the resting tremor was very prominent in my right hand and slight in my left, but was in control of my balance, walking, and had strength that I no longer have. One week after the implant of two wires, I had the stimulator placed. Three days after this first step, the implant, my right eyelid drooped, but then corrected itself.

Two weeks after the insertion of the neurostimulator in my chest, constant dizziness set in and is still with me to this day. Additionally, both upper eyelids look equally droopy, and other signs of Parkinson’s manifested itself, including my formerly normal walk now is that of one who has been dealing with PD for years. In short, I wonder whether the surgery had accelerated my PD within this short a time span. I had conversations with my neurologist who suggested that I am one of two DBS patients who have noted the same complaint and it seems that DBS may not be the answer for everyone. I am beginning to have swallowing difficulties as well. Frankly, in hindsight, I wish that I had not had the implant, but the numerical testing criteria scale showed that I was a candidate for the procedure. The procedure is supposed to be reversible, but I wonder whether or not it may be too late to undo the progression caused by the DBS--if that were the case. Has anyone here on this forum had DBS and can relate to the described problems?

Jerry

Hi Jerry,
Try turning your stimulators off with the programming device they gave you.
When you're switched off it should be just like before DBS.
Laura gave good advice regarding joining the yahoo DBS group.

[2snowbells]

Dear Laura;

Thank you for your reply, and yes, I had various brain scans done prior to the implant of the leads. Afterward, at the onset of the new developments, the neurologist ordered another scan to double check the placement of the leads and the neurosurgeon confirmed that they were located properly. As another member on this board suggested, I turned the neurostimulator completely off, and the neurologist even tried out different settings and along different paths on the leads to no avail. There were no changes at all. I hate to think that the leads caused the havoc. I should mention that I am one of those individuals that cannot tolerate Parkinson’s medications, of which I had tried seven (including various dosages) to date. About my “less bothersome symptoms besides tremor” prior to the DBS surgery? I should say it was constant tiredness, lack of concentration and energy.

Within a month’s time after the DBS, however, I developed other symptoms such as dry mouth, drooping eyelids, shuffling gait, dizziness, stiffness of the leg muscles, and extreme anxiety. Swallowing, too, has become somewhat difficult. Just to reiterate, the disease seems to have bypassed the benefits of DBS and progressed quickly. And, yes, Parkinson’s does have a mind of its own; every morning seems to bring a new surprise.

I am sorry to hear of your own condition; let’s hope that medical science will find a cure in our lifetime. Thanks again for your input and the attached link; much appreciated.
Best wishes,

Jerry

[2snowbells]

Hi, "made it up" (sorry I didn't get your name);
thanks for your kind reply. Well, mine seems to be a permanent problem. I had switched off the stimulator programming device over night but this morning I found that it had made no difference to my condition. As I mentioned to Laura, I think those implanted leads might be setting off some interferences, and the neurologist seems to agree with my assessment; I am one of two of her patients who had had the surgery and now complains of identical symptoms. I suppose that I will have to obtain another medical evaluation asap. Thanks for you kind reply. My best to you,
Jerry

Originally Posted by made it up

Hi Jerry,
Try turning your stimulators off with the programming device they gave you.
When you're switched off it should be just like before DBS.
Laura gave good advice regarding joining the yahoo DBS group.

[Bob Dawson]

e mail kate kelsall
http://katekelsall.typepad.com/

at her site

[stevem53]

Originally Posted by 2snowbells

Dear Laura;

Thank you for your reply, and yes, I had various brain scans done prior to the implant of the leads. Afterward, at the onset of the new developments, the neurologist ordered another scan to double check the placement of the leads and the neurosurgeon confirmed that they were located properly. As another member on this board suggested, I turned the neurostimulator completely off, and the neurologist even tried out different settings and along different paths on the leads to no avail. There were no changes at all. I hate to think that the leads caused the havoc. I should mention that I am one of those individuals that cannot tolerate Parkinson’s medications, of which I had tried seven (including various dosages) to date. About my “less bothersome symptoms besides tremor” prior to the DBS surgery? I should say it was constant tiredness, lack of concentration and energy.

Within a month’s time after the DBS, however, I developed other symptoms such as dry mouth, drooping eyelids, shuffling gait, dizziness, stiffness of the leg muscles, and extreme anxiety. Swallowing, too, has become somewhat difficult. Just to reiterate, the disease seems to have bypassed the benefits of DBS and progressed quickly. And, yes, Parkinson’s does have a mind of its own; every morning seems to bring a new surprise.

I am sorry to hear of your own condition; let’s hope that medical science will find a cure in our lifetime. Thanks again for your input and the attached link; much appreciated.
Best wishes,

Jerry

Thank You for your post..And Im sorry to hear that you had such a terrible experience with DBS

I had been bouncing the idea of having it done, because I have a low tolerance for the many quirks of this illness..ie; dyskenisia, dystonia, off time, freezing, stuttering, urine retention during dyskinesia..The only drug that works for me is Stalevo 200 mgs, and I cant tolerate more than 3 doses per day, because the 4th dose is nothing but 1 - 3 hours of dyskinesia, and nothing else I do seems to help..It's like there is an imaginary barrier that I cant cross, and if I happen to find something/anything/suppliments etc, that helps, it seems like this disease goes on a seek and destroy mission, and within a few days, it eliminates any benefits I reap from whatever the substance/suppliment I was taking was providing

I have seen some miracles from DBS, and Ive seen trainwrecks too..There is a woman in my support group who, like yourself was sensitive to meds, and she had DBS done 4 years post dx, and the surgery failed..They claimed the leads were in the wrong place, so she had it re-done by another surgeon, and now she is worse than when she started, and still has to take meds that she cant tolerate

I witnessed Harley, who is a member of this group, get..( for lack of a better word ).. "electricuted" during programing..Not once, but twice during the same session..That was one of the most horrible things Ive ever seen happen to someone

Most of the people in my area have had complications of one sort or another after DBS surgery during the past couple of years

I decided to table the idea of getting the surgery for the time being, and even more so after reading your posts

[2snowbells]

Thanks, Steve;
to have DBS done or not is a difficult decision. The exact placement of those leads is done with the aid of a computer and most patients seem to do quite well, but who can predict a successful outcome in each case? About your own condition, Steve: DBS will improve tremors and possibly other involuntary movements—that’s according to my neurologist—but I’m not so sure that it can reverse or slow down the progression of those other symptoms you described, but I’m certain that you would welcome any relief in whatever area.

Without a doubt, if you want to chance the DBS surgery I would suggest that your select the best neurosurgeon and even that is no absolute guaranty for success, but who knows, you may luck out. It seems to be a crap shoot. In my own case, it seems that DBS only served to tick off the disease, lol. About Harley’s experience: there is no excuse on part of the neurologist who had done the programming. Wow! you are describing the worst scenario I can imagine.

You take care of yourself, Steve. Thanks for your input. My best to you,
Jerry

Originally Posted by stevem53

Thank You for your post..And Im sorry to hear that you had such a terrible experience with DBS

I had been bouncing the idea of having it done, because I have a low tolerance for the many quirks of this illness..ie; dyskenisia, dystonia, off time, freezing, stuttering, urine retention during dyskinesia..The only drug that works for me is Stalevo 200 mgs, and I cant tolerate more than 3 doses per day, because the 4th dose is nothing but 1 - 3 hours of dyskinesia, and nothing else I do seems to help..It's like there is an imaginary barrier that I cant cross, and if I happen to find something/anything/suppliments etc, that helps, it seems like this disease goes on a seek and destroy mission, and within a few days, it eliminates any benefits I reap from whatever the substance/suppliment I was taking was providing

I have seen some miracles from DBS, and Ive seen trainwrecks too..There is a woman in my support group who, like yourself was sensitive to meds, and she had DBS done 4 years post dx, and the surgery failed..They claimed the leads were in the wrong place, so she had it re-done by another surgeon, and now she is worse than when she started, and still has to take meds that she cant tolerate

I witnessed Harley, who is a member of this group, get..( for lack of a better word ).. "electricuted" during programing..Not once, but twice during the same session..That was one of the most horrible things Ive ever seen happen to someone

Most of the people in my area have had complications of one sort or another after DBS surgery during the past couple of years

I decided to table the idea of getting the surgery for the time being, and even more so after reading your posts