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Parkinson's dbs

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Parkinson's Disease
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Posted 10/29/2008 8:22 PM (GMT 0)
I had my first surgery in Decembed  2 years ago. I had to have one side redone because my bones grew fast and caused the leads to Migrate  according to my docter. Now the leads on the other side have moved or broken and I'm to have surgery again

next month. Has any one else had these problems? I'm certainly not looking forward to another surgery!

Posted 10/30/2008 1:36 AM (GMT 0)
Welcome to HealingWell.I hope you hear from members that have had dbs.I hope your surgery goes well,and it gives you some relief from this nasty disease.I wish you the best.Stay in touch,and let us know how you make out with your dbs surgery.Ed
Posted 11/7/2008 2:57 AM (GMT 0)
This is fo Ocean Woman who is considering a DBS. I have had  Parki for 14 yrs. and in 2007 had the DBS procedure, after much research. It was an astounding success, reducing my symptoms to almost nothing and reduced my med intake by  60%. I'm not endorsing the procedure,but it is well worth asking your treating physician about it. I have much much more to say, but I'm new here, and don't want to be a bore. One more thing, most of us encounter times of stress in dealing with this terrible disease, and suffer from lonliness . This poem is for all of us:

                                                             

BROTHERS AND SISTERS

Among the strangers

Weaving thru traffic

Weaving thru life

Brothers and sisters.

We’ve never met

Haven’t heard your voice

Nor touched your hand

Your laugh is beyond me.

But I know you.

Can’t see your tears

Or delight in your smile

Never felt your embrace

Your fragrance, a mystery.

But I know you.

Stricken by a terrible malady

Your suffering is my suffering

My fears are your fears

Together, we struggle.

My brothers and Sisters.

 
Posted 11/7/2008 3:00 PM (GMT 0)
Kalalauhi,Thankyou for responding,and sharing your poem with us.Welcome to Healing well.Glad to hear that your DBS is working for you.We need to hear positive out comes in the fight against pd.Stay well and in touch.Ed
Posted 11/7/2008 3:06 PM (GMT 0)
yekkimo-Thank you.
Posted Today 3:17 AM (GMT 0)
I would like to know more about how your DBS is working for you. I had the surgery May 29th of this year. Since that time I have lost most of my sense of taste and smell.As a result I have lost a lot of weight which I really didn't need to lose. I have become very depressed and still shake a lot. After the initial surgery I was very calm and I thought it was wonderful.I have since had had about 4 adjustments and each has been a disappointment. I take re-quip . I am only 56 yrs old and can't imagine going through the rest of my life like this. Iwas very active and loved water sking,had my own Harley,painted, and sewed,etc.Now I don't like to go out much even with closest friends because I feel like they are constantly starring at me to see just how bad I've gotten.

 

Posted Today 3:18 PM (GMT 0)
 This is in response to "Woman". First, I'm very sorry to hear about your problems, it must be very scary for you, and, of course, disappointing as well.

 I would be glad to tell you, in detail, about my DBS experience; but it would be a lot easier, if you don't mind, for you to mail me directly at [email protected]. It simply is quicker for me. However, if your preference is using this format, i will do that also. Please let me know...

Posted 1/19/2009 12:13 AM (GMT 0)
First of all I must apologize for being missing in action for a very long time.  No reason except procrastination (can we start a chat line for that?).  Second, for the person on requip, do not stop taking it immediately, but talk to your doctor about tapering off and get on another med.  They can sue me if they like, but no one should ever take this drug.  We'll revisit this another time.  Third, I leave for Shands at the University of Florida tomorrow for DBS on Wednesday.  The schedule is one side on Wednesday, two weeks and then the other side, and two weeks and then the chest implants.  I will then go back about once a month for "tuning".  I will request an oldies station for mine.  I am glad that there seem to be some positive results for some of you and if I can make these fingers behave I will keep you informed.  Glad to be back- the Riviera guy. 
Posted 1/19/2009 1:13 AM (GMT 0)
gtm,welcome back.Good to see you again.Wish you the best with your DBS.Let us know how it goes,and don't be a stranger.Ed
Posted 1/19/2009 1:35 AM (GMT 0)
Rivera guy- I read about your upcoming DBS. I had the same procedure in Jan/07. I submitted my experience to this website. I'm willing  to share more details if you want to know more about my experience; My email address is [email protected]. Good luck ! Jerry 
Posted 1/25/2009 1:03 AM (GMT 0)
I can now tell you more than you want to know about DBS.  Not to scare anyone, but puting on the halo is painfull.  It's heavy and has sharp screws.  No local was given and after the halo was put in place they do give shots which I think go all the way through the skull from the way that they feel.  They told me that this would be the worst part and that is true.  I was awake through the entire procedure except once when I dozed off.  It's very strange because you can feel everything that they do, but it doesn't hurt.  After using the power saw to cut a hole they file down the edges which feels strange.  about a hundred times they had me read something or touch their finger and my nose.  I got a laugh from everyone in the or when I told the Pakistani tech that I couldn't repeat what he said because I couldn't understand any of it.  It took 4 and a half hours and I am taking lortab which is probably why I am making so many typos.  I could actually feel the wire being placed in the brain, but like I said there is no pain.  I had two mri's before the procedure, one ct scan before the procedure and two ct scans after the procedure.  There was an amazing number of people in the or and they were fantastic in keeping me involved in the process and as relaxed as possible under thr circumstances.  I have no pain now and I tend to move slowly and sleep a lot.  I can feel the wire coiled up under the scalp and I return in about 10 days to hav e the staples removed.   It may not be necessary to do part two (left side of brain) but that will be in six months if needed.  Post any questions and I will do my best to answer them.
Posted 1/25/2009 7:06 AM (GMT 0)
gtmriviera-Thank you for sharing your DBS experience. It seems only logical that we all have a different experience as we are all individuals and so are our Drs. For instance, I suffered no pain, because the local was injected into my skull before the halo was put on and there was no pain at all. In fact my wife was present until the halo was mounted, and was with me until they moved me to the the operating room. My experience was amazing during the procedure, all the medical pesonnel were a team. I remember when the neurosurgeon announced he had found the "sweetspot" (his characterization) ,he queried each Dr. nurse, techncian, if they agreed and when there was complete agreement, I heard more than a few whoops, and I will never forget the feeling ..
I had my DBS in 2/07 and other than one "tune up" right after the surgery, i have had no problems, and have reduced my meds by 6o%. All my motor problems, gait, walking, balance have almost totally disappeared. But, as I said, we are all individuals, and depending on our individual strenghts and weaknesses, each of respond differently...
Posted 1/28/2009 12:46 AM (GMT 0)

Hello, I understand that this may be a little late in reponse to your original posting date, however it is important for me to share with you my experiences with DBS.  I have had the procedure done twice.  That's right, twice.  The first time it didn't work worth a toot.  The second time it worked (s) great.  I had an excellent neurosurgeon the second go around - he wasn't practicing like the first guy was.

If you want to know if I recommend it I sure do - just make sure you have a good neurosurgeon.  I give everybody that asks me the name of my guy - Dr. Fred Junn, he's with the Oakwood Neuroscience Center in Dearborn, MI.  He's wonderful.

Posted 1/28/2009 1:07 PM (GMT 0)
wcdgrmi,Welcome to HealingWell.Thankyou foryour input,and I'm glad to hear of your success with DBS.Many of us are facing that operation.Wish you the best Ed
Posted 2/4/2009 6:18 PM (GMT 0)
DBS is a journey, not a destination. I had a bilateral placement at OHSU in Dec 2004. It was a disaster from beginning to end! I had one lead correctly repositioned in June of 2005 at Northwest Hospital in Seattle. and the other corrected in Aug of 2007 at Deasoness in Spokane. While the placement is important, I cannot tyell you how critcal the programming is!!! I found Sierra Farris at Booth Gardner Parkinson's Care Center in Kirkland, WA. She has made ALL THE DIFFERENCE. I should say that I live in Alaska, so my experience has been somewhat complicated by distance.
If anyone has sp[ecific questions, I can be reached at [email protected] .
Posted 8/26/2010 9:10 PM (GMT 0)
DBS for me is wonderful. Before DBS my then Neuro DR would just pour the meds into me. What really scared me most was when he told me I should start considering retirement. I was then 52 years young now 56. Then I heard about DBS, went to a siminar and by the time of its ending asked the DR's if I would be able to surf again. They said "kowabunga dude, why not". I was convinced I would go through with it. After all said and done, I still work and surf, no trimors (unless I turn off the stimulators) and I cut my med intake to almost '0' and no side effects. I turly understand that everyone could be affected differently. But for me it is a great proceedure. As for the surgery, it was pretty much as described by others. Wearing the halo was the most painful but not that bad. My Neuro surgeon was great. I hope this helps others who are making the tough decision of DBS.
Posted 9/2/2010 2:49 AM (GMT 0)
I'm just starting the eval procedure to see if I'm a candidate for DBS. MRI is Tuesday.
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