Ive had it with dealing with the symptoms of this disease and I’m looking for some relief and maybe some normalcy at least for awhile, so I’ve decided to explore DBS. I have a consultation on 1/26 at Brigham and Women’s Hospital in Boston to evaluate if I’m a candidate or not.
I’ve heard from many on this site about success stories of DBS my question to the group is weather I should do the awake or Asleep method during surgery. I’ve read all the pros and cons of both just curious with what the group thinks.
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Sleeplessparki
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Both of my surgeries I was awake for much of the surgery. The first was all positive. The second, 2 1/2 years later was very difficult. The reason is I was totally "turned off" DBS on the first side, and off all meds. During the surgery, I experienced a lot of discomfort, dystonia. I had a hard time holding still and was actually afraid I was going to mess up the surgery. Ended up coming out of surgery in excellent shape. When I had my first surgery there were no symptoms on the second side...but from the experience I had I'm thinking it may have better to go ahead and have both sides done at the same time.
Hello! I am wondering how you are doing one year after DBS. Have you gotten any side effects? Are you glad you had it asleep, any regrets? Where did you have it done? What device did you use Medtronics? Boston Scientific? or Abbott?
How many times did you have programming adjustments the first year? I can't get in to have DBS done for 6 months at Mayo. Lots of time to worry!!! I have dystonia pain in my leg, along with tremor and dyskinesia. Hope you are doing well.
Hello all, yes it’s been almost a year since my procedure at Brigham and women’s hospital in Boston. I had it done asleep and would recommend to anyone contemplating doing this having it done this way. The DBS was in my case nothing short of a miracle... I feel great with no complaints thus far. I reduced my medication intake from 24 pills per day to 6 now... a big win!!! I went with the st Jude infinity model in fact I was the first patient that had this device installed. They were using Medtronic exclusively and as of today they have 6 people with the infinity. This device has directional leads and a compact patient controller that is easy to use it is basically an iPhone.
Good morning Connie, the biggest benefits I have experienced are virtually no more tremors and I was tremor dominant... what a relief this has been. Also I have not had any dyskinesia or dystonia in my legs and feet. Some of my small motor skills have returned as well for example I can again tie those produce bags in a knot and roll over in bed. My hand writing has not however improved at all! The only downside I am experiencing and it is nothing in the scheme of things is that I have weird feelings and intense itching where they did the incision in my head.
I had both sides done, 1 week apart. I was awake for both. No issues for me in regards of being awake. I thought that it was an interesting experience.
Hello, Are you glad you had your DBS while asleep? Any side effects? Where did you have it done? Did you choose Medtronics, Boston Scientific? or Abbott device? How is the programming going? What improvements have you experienced? Would you do it again? Sorry for all the questions . . . I have to wait for 6 mo. to get in for my DBS. Lots of time to worry
Yes, I was glad to have it done asleep. No significant side effects. I had it done at the University of California at San Francisco (UCSF). Only one minor complication was that one of the contact point failed, but this was not likely caused by me being asleep during the surgery. When I did my surgery back in May, 2014, there was only one choice available. That choice was Medtronics. Program adjustment will continue since it is a progressive disease. I go in to see my MDS every 3 to 4 months for possible adjustments. The only complaint I had with the Medtronics device was that the rechargeable unit was a little hard to recharge it. (But I have heard that the newer model have improve so that is now relatively easier to recharge.) Symptoms improvements I had experience include almost no tremors or extra involuntary movements, better balance, better walking (gate), less freezes, and better typing skills. Some of my overall driving skills have returned too. DBS also reduced the amount of drugs I have been taking. Yes, I would do it again. I think it is important to know that DBS will likely not help in non physical symptoms like depression, anxiety, sleeping patterns, and side affects caused by the medication and drug interactions. Hope this helps.
Thank you for your responses. I’m leaning toward the asleep option mainly because I’m a baby lol. If I can get both sides done at the same time I it think would reduce potential complications of going in twice.
The actual surgery is painless...we have no pain endings in our brain. My problem was dystonia/discomfort in my body as a whole due to PD (second surgery, early 2014).
Just curios, do not have they to drill the skull? Also battery is stored in the chest underneath the skin and probably needs an incision. I taught that would be painful.
Yes, they drill holes through the skull, but I was asleep during that. Was also asleep during the followup surgery to implant stimulators in the chest (one week following the installation of the electrodes in my head.) Of course, there was pain following both surgeries, which requires some pain medication for a period of time. Actually, I'd say I had more pain from the chest implant for a week or so that from the electrode implant due to them having to cut into some muscle.
I've had both sides done and they did not give me a choice... I was awake during both surgeries. It was strange experience but not painful. The only painful part was getting the halo screwed into my head, but the pain doesn't last. They did put me asleep for the battery placement. It hurts for a little while because they just cut you open and stuffed a battery into your body! But I am so glad I got it done, both surgeries made such a difference!
My husband had dbs both sides on 21/9/2018 he was awake for most of the time only asleep for the battery insertion in the chest total of nine and a half hours from start to finish. I am very proud of him he's doing well. He did say he felt like his head had been kicked round a football pitch for an hour the day after but he's coped with just paracetamol. We are waiting for the appointment for his switch on hopefully next week and fingers crossed its worked and things will improve for him.
Hi sleeplessi had PD for 15 years now and had a DBS surgery 7 years ago.it was tough procedure, lasted 9 hr. But it seas worth it. It gave me my life back. I move better,my ovf time is shorter owed al I feel grate.I hawe to admit There we are complications. I had a planty of complycatios. Infections mostly. Staff at first the Pseudomonnas and Chen MRSA[Vanco resistend Staphylococus Aureus]. I had a total of9rgeries.Granted they did not lasted as long as the fits one,but just as serious.Because this took the first one out,put pick line in and antybiotics 3x a day for a month IV . And paying for it our selfs, because I did not can’t to stay in rehab. Go figufe..Staying in rehab ,which cost more money wedid it at home over selfs which save them thousands we had to pay. It does not make sense. Anyway, I spend enough time in the rehab thrat year. The infections crept coming back and the treatment increase ,to every 6 hr.Whhich my husband could not do,because of the timing. The IVs went for 3 hr.He would not be getting enough sleep. So I had to cnsented to rehab. It was not a pleasant experience. Belying retired nurse I was competing the services. The day shift was not a problem and the RNs on bough shifts were great but the tech [ we’d called them aids in my time . Some of them were triple. One told me o night shift., that my butt is to big for the bad;an, that I should stop beying lazy and get up and go on a toilet and that was after it took her owner 1 hr to answer my call,where Iva’s about to pee my pans for houlding it so long. MYnd you I ] dig everighhing my self when my meds kicked in.
Sorry for the long wondtet story. We were tacking about with or with out anesthesia; they tell you there is no pain because no nerve endings in the brain. Well thy ly , not about the brain but about the tissue around,that hurts. You feel it. While is not sharp lt”s burning and very uncomfortable
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