DBS

[chidainer]

I'm 45, diagnosed @ 42. Thinking about DBS, how common and how successful are these operations?

[98Rob]

I was diagnosed in 1997 at age 33. The symptoms go back to when I was 31. I had bilateral surgery in Jan. of '07. It was the best thing I ever did. If you have a good health plan then go for it. I would consult your doctor, since you've only had PD 3 yrs. It may not be time yet. Please check with your doctor. It is a very expensive operation. That's why it's mandatory to have a good health plan. The operation itself is not that big of a deal IMHO. Good luck with whatever you decide.

[goose63058]

I had it done in2010 . I havge deteriorated so much since then. So far the only thing it helped me with so far is dyskinasia . In return I can't walk with out help

[camper]

I'm 69 and hoping to go for DBS before I'm too old. I'm like you gathering infomation about DBS. So I'll be interested on the comments you get.

[Kadie57]

I just had DBS at age 55 0n 4 -10-12, it gave me bakc my life!! Try not to over think it, or you will never go ahead with it , while the road is bummpy just keep your eyes on the prize at the end. Good Luck.

[Jash in reply to Kadie57]

After following your bumps in the road, I'm glad to hear that you are well on your way to the prize...I've just gotten started with programming after DBS surgery in June and like you, I've now experienced falls I didn't have before, but I'm still optimistic and think about your experience

[BILLYRAY]

I go today to see if i am a canidate or not..what pisses me off is that they have had my results from the brain scan fo over a month...dr wenton vacation or sog thrrew the me shit...really psit been goinin threw the same bull yes it is no it is not..what the fk......put me on the table operate if idie i am ready better to be in glory than to be fall all the timee...go for i\\t

[liz15king]

Hi guys, my first time on any blog. I am a carer whose husband had DBS some 7 years ago. It changed his life from not being able to move to holding down a fulltime job. Always remember that it is different for each person and that it is not a cure, just an aide. We have just been reset and battling a bit with the balance between stimulation and meds but with persistance that seems to be coming right. To all of you who want to give it a go - remember that there are even more lessons in patience to follow - like you really need more of that!!!!. good luck.

[Thumbpick]

Im 66; had my DBS in 2010. My tremors were so embarrassing to me that I pretty much became a recluse, rarely going out except when I absolutely had to, like Drs. appts or grocery store.

I also had a few other symptoms... difficulty swallowing and occasional freezing when walking, or rather, starting to walk. I guess I needn't really say it, but I was also severely depressed. I wasn't suicidal, but I really didn't care whether I lived or died. And the meds were doing nothing. I tried Artane and is made me sick and gave me hallucinations.

So, I got evaluated for DBS. I had bi-lateral DBS surgery in 9/10 and emerged virtually tremor free!!! Also, my though it's not supposed to help the other symptoms, my swallowing has been almost 100% cured, and I don't freeze when walking at all. AND, although I am a self-diagnosed pain wimp, it was virtually painless! I was very, very fortunate to have a brilliant surgeon.

I have or admit, though, that being awake ( or, really, semi-awake) during the procedure was king of weird... but not upsetting. Just before they took me into the OR, the Dr. came by and asked if I had any questions. I said, "Yeah... I'm lying here wondering what made me think that elective brain surgery was a good idea?" Besides, I thought, "What if they open my skull and find nothing inside"?

But it was a good idea. I got my life back. Not w/o some problems, but still a good idea. Primarily, it left me w/some slurred speech and almost indecipherable handwriting (have great difficulty even reading my own writing). But, I've had several "rounds" of speech therapy, the latest (and by far most effective) being the LSVT method. It really has been very helpful. Most days I'm pretty intelligible, others not so much. John Denver did a song years ago that applies: "Some Day Are Diamonds, Somme Days Are Stones". The tremors on my right side (which was always the worst) have come back a little, but zero on the left. And, I'm due for another "adjustment" of the controller/battery pack soon. Meds seems to have little effect on anything. Although I have some tremors, I can eat and drink like an (almost) normal person. I also used to have pretty good skills on the computer keyboard, but now I type a word and often there will be 5 or 10 characters repeated which I did not type (at least not intentionally)... a string of S's of A's, or O's, etc.

So, that's pretty much my PD/DBS saga. Would I do it again? ABSOLUTELY!! If you have questions, please let me know.

[moonswife in reply to Thumbpick]

I could almost copy the first two paragraphs of this posting and attribute them to my husband. He had lost 100 lbs shaking 24-7. Now he works with power tools again, is no longer embarrassed to dine in restaurants, performs all ADL without help. (Buttoning buttons were impossible for him before DBS). Does he have dystonia? Sure, but I expect he would have had it without DBS as he was diagnosed in the middle 90's.

Would he do it again. ABSOLUTELY. Downside. A lot of stores in the greater Los Angeles area have beefed up security scans to avoid shoplifting to the extent they shut his equipment down. Wife and remote to the rescue, store gets crossed of list.

[etterus]

I also am in the process getting it approved by a medicare complete program... a daunting process. The insurance schemes and scams are how the CEO's make all the $$$$'s. My neuro said it should be done this month but as of yet I haven't had approval for the neuro-psych testing...... the 1st phase.

[grammieof3]

I just read an article how fsr dbs has come i had mine in 06 and 08. Can't imagine life without it have a small tremor in my right hand so i carry my purse over there. I never thought about store security turning me off. I couldn't figure out what was doing it. I just have so much trouble walking wish i knew something for it.

[Hidden]

Hi I am being considered for this in the Uk. at Hope hospital .If there is any one out there who has had this done at Hope I would be greatful if you would discuss it with me and solve one or two of my concerns. I wait in anticipation.