I am a 82 year old male and was diagnosed with Parkinson’s 10 years ago. My neurologist is recommending that I have a DBS surgery to deal with my symptoms. He indicated that overtime medication is less effective and this is my best option.
I’m hopeful that some who have had it will share their experience. For example, how long did the surgery take? Was hospitalization required? Are you pleased with the results?
I look forward to some responses to teach me about it. My surgery will be at the University of Washington in Seattle.
Thanks, Al Harness
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Lulover
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I am a 71 year old female who had DBS surgery in January 2023. My surgeon was Dr Gwinn at Evergreen. There are quite a few YouTube videos about this procedure. It takes about 4 hours. You are not conscious during the procedure. Your recovery is at the hospital initially but only overnight. Then after a few weeks you do a second surgery to place the battery. The recovery is weeks long but the results are life changing! I was able to drive for the first time in 5 years. Strength and steadiness greatly increased. Medication reduced!
Good luck in your decision making. One thing that is rarely discussed is having MRI scans with DBS implants. Most modern DBS devices provide a setting to be used during MRI imaging; you should be sure that yours has this feature. Even with the DBS MRI setting, it’s a bit of a hassle, but by no means a dealbreaker. Of course, you may never need an MRI.
Even with the MRI feature you'll need to be careful as exposure to the MRI magnets during scans is time limited--30 minutes of continuous exposure. Most MRI facilities are knowledgeable about using MRI on DBS patients but many are not. You will find yourself being an educator.
One more thing to consider is that any future surgeries you may need that might require electrocautery will require discussion with the surgeon/anesthesiologist as your therapy will likely need to be turned off during surgery and switched back on after. Many surgeons are not aware of this--again, you are the teacher.
I’m writing this but my wife is the actual person with Parkinson’s who has the DBS.
Also, the battery life is not as advertised. Her neurologist says that her program uses a lot of battery—her most recent battery/neurostimulator is messaging her that it has barely a 2.5 year life expectancy. When that craps out (actually it gets replaced before it runs out of juice) it’s just another outpatient surgery, but you should be aware and ask questions
These things are not usually discussed during the DBS "sales" pitch. They are not insurmountable but will require your attention.
You also might want to look into noninvasive treatments.
I recall that the surgery was about 4+ hours and she stayed in the hospital overnight. She was awake for part of the surgery. That’s just for the brain part of the two-part surgery. Two weeks after the brain surgery she had the neurostimulator implanted and connected—that was an outpatient procedure. Then another 10 days or so before they fired everything up and started the programming.
All that said, her DBS has really helped her. In conjunction with her C/L meds, it has significantly reduced her symptoms. She’s had the DBS for about 5 years; she’s 76 and was diagnosed about 12 years ago. She’d tell you that she’s glad she did it. She actually said that a couple of days ago. Good luck.
I had DBS surgery in June 2022. I had painful dystonia in my feet. I have not had any cramping to that extent! I am taking less meds and am glad I had the surgery. That being said, my short term memory was mildly affected. (It could be PD since I was dx in 2014 at age 53. Not for certain.) I tell all who are considering DBS, do your homework. Then make your decision. Do let us know what you decide.
DBS bi in March 2023...Boston scientific rechargeable battery. PS started approx. 7 years ago. Gait issues and dystonia in right foot. Today I have been able to walk with a rollator. Taking Rytary 145s 3 times a day with amantadine.
Surgery lasted about 6 hours and I was out, which supposedly is the current preferred way. Not sure about that as I have not done the surgery twice...lol.
Would I do it again...not sure if I would. I am not any different than before the surgery. At16 months...we will see. Many report it can take years to see improvements.
This was written up a while go by myself and my sister. It describes the process of making a decision to go ahead with dbs for her husband, Steve.
Dear Family and Friends,
We spent much of this week at Cedars Sinai hospital consulting with the neurology staff. It was not clear to us whether DBS ( Deep Brain Stimulation) would help Steve's Parkinson's symptoms, despite all of our research, and the months we have spent wrestling with this tough decision. This message is to let all of you know what we learned, and how we will go forward.
DBS is done by a team consisting of the local neurologist, the Cedars movement disorder specialist, the Cedars neurosurgeon, and the Cedars neuropsychiatrist. We were favorably impressed with the Docs. Steve had a grueling 3 hour on/off test, in which the doc observed him when his meds were, and when they were not, working-- measuring the differences in his gait, balance, muscle rigidity in each state. One of the things that DBS does very well, we were informed, is to smooth out motor fluctuations. Now they had our interest! At present, Steve endures huge motor fluctuations, going from fairly mobile to frozen in mere minutes... and that a number of times in the course of a day.
We had a number of questions for the movement disorder guy. Were the 3 major PD symptoms -rigidity, slowness, and tremor - ALL targeted in DBS? We learned that the main target is usually 1 of the 3, but that the others can be influenced positively by the same procedure. What about the long-term effects (benefits?) of DBS? The answer was complicated, but our sense is that because most patients are able to take less medicine after DBS, the side effects are lessened, and the progression of the disease is somewhat slowed. What is considered a "successful" procedure? The doc was quite emphatic that expectations of outcomes are a major component in the whole process. Rather than reversal or elimination of symptoms, the best candidates for the procedure are those hoping for some improvement, including a reduction in the kinds and amounts of pills. He complimented Steve on his measured, realistic take on the likely outcome.
The neurosurgeon addressed our questions, too. This particular doc has done about 1000 DBS surgeries over a 15 year period. He, too, spoke of how effectively motor fluctuations can be smoothed, and said it was reasonable to expect that Steve will routinely enjoy 6 hour periods of feeling good, because the meds will give him such increased bang after surgery. Wow! That sounds sheerly wonderful to us.
He also walked us through the mechanics of the operation , which is actually 3 separate surgeries. Will Steve be awake or asleep? Both:
1. A frame is put on his head (asleep).
2. He gets a CAT scan (awake)
3. An incision is made (asleep)
4. He is awakened so surgeon can see and discuss what happens when leads are placed variously (tremor disappears)
Two leads will be placed in 2 separate surgeries. He will have the first placed, wait one week, and then go back for the second to be placed/ same drill. One week after that, the battery will be implanted. Too weeks later, the battery will be turned on.
We have completed all of the preliminaries except for the neuropsychiatric evaluation, which is scheduled for Nov. 7. We expect to begin the surgeries in December, and to finish in time to ring in the new year.
To be sure, to go ahead with the surgery is a decision we have not taken lightly. In fact, we originally approached this whole question with a great degree of skepticism. However, weighing all of the information- in particular the fact that Steve's overall quality of life has deteriorated to a point where getting through a day is sheerly difficult- some fairly radical decision had to be made. The DBS procedure is the best we have; at the present time, there appear to be no reasonable alternatives.
My husband 61 had dbs at ucsf medical center in california with an outstanding surgeon named dr starr. He had mainly ongoing tremor, stiffness, and slowness. 95% of his symptoms are all gone. Very positive experience. His surgery was 5 hours and part of his surgery he opted to be awake. he had a choice and choose this route so that the Dr. can test placement and amount of stimulation right away while the brain is open.
We went with the medtronic non rechargable so he'll need a new batter implant in a few years.
Recovery wasn't bad for him...about 2 weeks of resting and downtime and he was back at work in 2 months time. but my husband is very in shape physically so he really sailed through it easily.
he has reduced his meds as well
The programming can be difficult to get the sweet spot depending on your symptoms. We had luck at the very first programming, but sometimes it takes a while to find the right settings for people so know that
thank you for your response. Reading responses from a number of people has provided a lot of information which is very helpful. It also helps with the anxiety one tends to feel. I will look forward to hearing more about your husband’s progress, and I will certainly share mine.
Why go to all that expense when, you can overcome your PD symptoms by simply walking, as fast as you can, for one hour, every second day.
At the beginning, you will not be able to do it for one hour, but, slowly, it will build up to one hour. The PD symptoms will disappear within six or more months. I have been PD symptom-free since 1996.
I am now almost 90 years old. I turn 90 in October!
Dear Lulover, My husband has had PD for 10 years too, and this past year the dyskensia has gotten awful and lasts about 3 hours. Plus medications had to increased to try to help with it. DBS was finally presented to him in a way he agreed to it. He's had the 1st stage and next week will have the neurotranspponder implanted.
The surgery went well and his Neurosurgeon and his "team" were amazing Plans were made for him to go to ICU for 24 hours then "step down" to a room for 24 hours before assessing and discharging However, my husband's overnight recovery from anesthesia, being on his meds on time, and his ability to walk and stand with good balance----allowed him to be discharged after 24 hours......I stayed with him in the hospital to make sure his meds were given at the right times and consistant. He had a CT scan which showed no brain bleed.
He's had no pain in his head, and only minor pain behind his left ear (where the lead was placed before attaching it to the transponder)
Surgery took about 4 hours, but that also included the "Q&A" from the Dr to check his speech and movements for confirmation of the lead placement. My husband has such a dry mouth that hiis answers weren't clear but the PA was there and confimed his answers to the questions.
If you have an Aware in Care kit or the updated one Hospital care kit---and if you will make a spreadhsheet with all your meds and times and dossage...and make sure ALL the nurses, pharmacist and your Dr have a copy to start meds as soon as possible...that's a big help.
thank you very much for such an informative and helpful response. I have done the pre-testing and expect to get a date for surgery sometime before Christmas and the surgery to follow in January or February. I have also watched a number of videos, so I Feel comfortable with the procedure.
I will look forward to your update After the completion of your husband’s procedure, and how it seems to be working for him. I will also be happy to share my experience . The more information one has the more comfortable one feels. Wishing the best of luck for him and you.
I will pray for a successful outcome for you and may your neurosurgeon be compassionate as well as caring. I look forward to your hosted to your updates
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DBS SURGERY
