Gonna Do DBS in September (I think)

With a lot of encouragement and offers of care and assistance from my soon-to-be ex-wife, my sisters, my brothers, and more than a few doctors, I've decided to undergo DBS surgery in September. And as I sit here in my hot, dirty little apartment, hungry and bored kittens swatting my ankles as I shuffle by, and waiting for my 9 AM meds to kick in (my 6 AM meds never really did), it seems like a pretty good idea to me too. We'll see how I feel after the meds do finally kick in, the cats are fed, and the apartment is cleaned up at least enough to keep the cleaning lady from quitting tomorrow upon arrival.

The first step, a sort of off-meds/on-meds assessment, takes place next Thursday morning at RUSH hospital near here in Chicago. I've always believed that major medical procedures should always be done at major medical centers, and I'm glad to be living near several. Still I feel some trepidation. I've never had major surgery before and the doctor made it clear that there are risks involved.

... Oh well, one step at a time, right? I can still back out if I change my mind.

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  • I highly recommend having it done. I've had PD since 1995. I had bilateral surgery in Jan, 2007. It was the best thing I ever did. I'm still able to drive and workout. I walk pretty normally and get around with no problem. The neurostimulator relieved a ton of stiffness in my body.The operation itself was pretty cool. Mine was done in 2 parts. The first part was the electrode implants in the brain, which they keep you awake for the whole operation. They drill 2 holes into your skull. It's not as bad as it sounds. They numb your scalp before they drill.That operation takes the longest because they have to place each set of electrodes. Then they hook an external battery up to them to make sure the electrodes are placed properly on each side of the brain. The second part of the operation was a couple of weeks later in which they installed the battery under the skin in my upper right chest. They waited about 2 weeks after the operation to turn the neurostimulator on. Good luck with your decision.

  • Oy! Tell me more! How much help did you need while recovering? Any side effects, positive or negative? What about your hair?

  • Can't see it happening in the UK on the NHS.

    only in exceptional circumstances perhaps.

  • You can get this done on the NHS .You need to speak to your doctor,PDNS.Ask to see if you are suitable as there is a process to go through to see if you can be put forward for it.DBS is not suitable for everyone but if you do have it offered weigh up the pros and cons and make up your own mind.

  • Are you in a program for exercise etc for PD? Great getting to know other Parkies and some have had DBS. Good to have a reason to get out and exercise lifts the spirits. Good luck with the procedure. Keep us posted.

  • I had the DBS implants both sides of the brain and was awake April 10 2012, IT IS THE BEST THING I EVER DECIDED TO DO! I have had ups and downs and you will also, due to med adjustments, and implant settings, I had the rechargable battery put in and I like this but I m a gadget person so I have no problem recharging once a week. Keeep you eye and thoughts of the gift at the end of the adventure. Like a pinabll machine LOL To not shake after 9 yrs was so amazing ( I m 55 and have had pd 10 yrs) and it was immediate on the operating table. The surgery was hard just a few month later they have started doing surgery with person asleep . I choose to be awake for the recovery time due to not using anestheia. Some to tell, write back with your questions I will answer if I can, KADIE

  • Where did you have this done?

  • My primary problem was tremors... so severe that I could no longer hold a glass or cup of coffee w/o sloshing it all over the place.

    Nor could I eat, at least not properly. I could not control the utensils. Even tried weighted utensils w/o success. If I tried to eat a "hand" food -- a sandwich ot pizza for example -- it would flap so hard that whatever was on the pizza or in the sandwich would wind up all over me, the table, or the floor. My lowest and perhaps most humiliating point was going to dinner with a friend and shaking so much that she had to feed me!! So, I stopped going to restaurants and and most other places.

    One think that was not affected was driving, As long as the car was in motion, I was virtually w/o tremors. When I stopped for a red light or whatever, the tremors resumed, albeit less than at home or when the car was moving.

    Even though I could drive, the 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 have to 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 years of speech therapy, the latest (and most effective) being the LSVT method, and it's 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 work and often there will be 5 or 10 characters repeated which I did not type (at least not Internationally)... 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.

  • Ditto the comments on DBS. .... Both positive and negative . But I now have another chance to live my life more normally. I am naturally an extreme extrovert..... But had almost become a recluse ...l. Primarily because I could not rely on being able to function if I went out. I do recommend the procedure but it is tough .... Takes so long to get thru all of the tests and the series of procedures. And in my case having my shoulder length hair cut to a buzz cut. actually that wasn't too bad except that it come back in white... I was hoping it would be brown.... No reason it should.... Have had white hair for years but hope is what keeps us hoping and trying

    Trust all will go well

  • I had DBS surgery on May 15 and the impulse generator put in my chest on June 5. Both were done in Albuquerque NM. I spent 8 days in June @ a Rehabilitation Hospital. I am also following an outpatient therapy program since I live 225 miles south of Albuquerque. You need a good exercise program to follow. I've found I have rigidity all over my body. The DBS surgery has given me more on time. I have more mobility and feel better. I still have off time but it is not as long or as intense as before the surgery.

  • My husband had DBS in May 2004 in the UK ,the effects were immediate.No more dyskenesias and amount of meds cut by almost 3/4 .He had it all done in one day,now you can be asleep to have it done but at the time he had it done you had to be awake.First the head cage was fitted ,then he had an MRI then it was into surgery.He remembers the surgeons chatting about golf and family stuff.He said that when the electrodes were fitted he saw and felt the change immediately.They put him to sleep to fit the wires and box and when he was in recovery they called me to say I could go in.All together it took 5hrs from start to finish,they switched it on immediately and over the next few weeks we went back a few times so he could have it altered to get the best results.

    There are downsides for him,his speech and balance were affected but it doesn't happen to everyone.

    He was part of a nine year study and to be even considered for the DBS he had to answer medical questions ,go through a physchological tests this was in itself very tiring for him as it went on all day .

    He will tell you it is worth having it done if you are lucky enough to be offered it weigh up the pros and cons talk to people who have had it done then make up your own mind.

  • Thank you all. Very helpful.

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