Deep Brain Stimulation Patient Views

In April 2022, I underwent DBS at UT Southwestern. Age is 75. Year diagnosed, 2013. To qualify for the surgery, a number of tests are given by UT psychiatrists. They were testing my cognitive, logic, and problem solving abilities. They were looking for signs of dementia as well. Thankfully, these tests I passed in flying colors. The results of my DBS surgery were immediate, but I admit to causing some recovery difficulties by not acknowledging (to myself) that I had just undergone delicate brain surgery, as well as a general anesthesia to connect the electrodes to the battery pack. There was no pain associated with the surgeries. When I overdid my body’s ability to continue, extreme fatigue would require immediate deep sleep. Generally, sleep would revive me. This is an example of how easy it is to sabotage your self! Although I have some breakthrough dyskinesia and tremors, I am beginning to understand why this happens and having fewer and shorter breakthroughs. My Rytary has been adjusted once, and l hope that as I progress, we will be able to adjust it again. Yes, I am glad I had DBS. Yes, I would do it again if necessary. IT Southwestern neurosurgeon is Dr Pouratian

DBS has given the patient their life back. They had about 90 minutes of on time before the surgery. They had bilateral GPI placement with a Medtronic precept rechargeable battery. They were fortunate to live near a neurosurgeon who specializes in asleep DBS and does it in one surgery instead of multiple. This was the only option they would have considered because of anxiety and claustrophobia. The amount they paid was based on their insurance deductible recovery time for them was a full six weeks. They went back to work at week 7. They’re so thankful to be able to enjoy their family and friends again.

I was very scared initially about having DBS surgery performed; however, I spoke to everyone I knew (and many I did not know) about having the surgery to allay my fear of going through it. The thing that I feared the most was having screws placed in my skull to help guide them to the right place to insert the electrode. As I talked about it more and more, the fear dissipated and I soon after had the surgery. For all who are deemed candidates by a team of doctors, I believe they should seriously consider having the surgery done. I had the surgery about 6 years ago and am glad I did.

I’ve had Parkinson’s for 10 or 11 years, that I know of. Probably even had it longer. Had DBS a few months ago. First procedure was the last day of October, second week later, they turned it on two weeks after that. My only real symptoms Was a tremor in my right hand. My only medication was carbidopa levodopa. I now take no medication. I have not been back to the doctor for a tuneup since initial, follow up two weeks after was turned on. It has been life-changing. I can now write, and do other things I have not been able to do for years. True miracle. My child took a video of me in the morning before they turned it on and then inthe doctors office afterwards. Show the videos to everyone. Universally they’re amazed. I had absolutely no pain except for the local anesthesia before they put the halo on. If you were seriously considering DBS, I say go for it.

I am a 72-year-old female who completed DBS surgery on 1/18/23. The DBS was turned on on 2/3/23. DBS gave this patient back at least 8 years of their life! They can now do all the little things we take for granted again! They can turn over in bed, brush their teeth, comb their hair, put their hair up in a ponytail, get dressed in a few minutes without fighting with their clothes for 30 minutes, button their shirt, fold the laundry and wash dishes quickly, go up and down stairs, get up from a chair without help, walk erect with no shuffling or slumping, and they are still discovering everyday the little things they can do again.
For them, the most difficult part of the surgeries was giving up control to the doctor and his team, not overthinking it, and trusting them to all do their best. They picked the best neurosurgeon who has done almost 1000 DBS surgeries. They were number 930 (they asked). They were given conscious sedation for the lead placement, but don’t remember anything except when they were awakened for a short time to check lead placement.
DBS was the best decision they ever made.

My father had Deep Brain Stimulation in the Fall of 2019. While it took some time to see the impacts of the surgery, we soon realized that it positively impacted his dyskinesia. And he seems to think that he takes less medication than he did before the surgery. Have you undergone Deep Brain Stimulation? If so, what kinds of changes did you see? If not, are you interested in getting the procedure done?

My spouse underwent DBS surgery last November. Sadly, they made up the 1% that results in a brain bleed. It took hospitalization, step down facilities, and at home P.T., O.T., Speech, home health, etc.. In April, they were ready to receive the second part of the surgery. Two weeks later, their DBS was turned on. It is nothing short of a miracle! It took away their dyskinesia (most haunting symptom, ruined several prs. of shoes over the yrs, due to rolling over their ankle, and yes, we tried botox, but it did not work)! It also took away their tremor, their bradykinesia, their soft speech, etc. They have had it for at least 15 yrs.. They also fully gained their abilities to raising out of bed (on their own), out of a chair or couch, fully able to dress, button, zip themselves, including the one arm of a coat. Their fine motor skills for typing improved. And most surprisingly, they lost their urgency to urinate; and were able to function normally without any accidents or no longer need a urinal to supplement. The brain bleed had advanced their Parkinson’s 10 years ahead. Not only did the DBS get them back to baseline, but it also set back their symptoms by an additional 5-10 years; as what we had originally hoped. DBS is miraculous and wonderful, despite the early setback. Praise God!

tl;dr: (summary) It is brain surgery; all brain surgery carries risk.

Deep Brain Stimulation (DBS) surgery was performed in 2016. The surgery went well; recovery took about two months before I resumed boxing classes.

The first six months involved major tweaking of DBS settings, and the next six were minor. So, it took about a year.

After DBS, I finally learned to run in 2017 and did my first 5K. I told my spouse I wanted to compete in a Sprint Triathlon. My spouse reminded me I didn't know how to swim, so I had an adult swim lesson in 2018 and a triathlon in 2019.

Some swimmers have a difficult time after DBS, but I never learned freestroke until after, so it wasn't an issue. If he is an open-water swimmer, he needs a buddy first few outings (a companion paddled alongside me in a kayak).

Here in Austin, TX, my Neurosurgeon has done over 1000 DBS implants. Well-versed, he has a protocol to reduce the risk of infection: shaved head, bed sheet washed in hot water/tumbled hot dryer, Hebiclens body wash. The industry average is a 2% infection rate; he is at 0.3%.

I have had first-hand conversations with over 100 people who have had DBS. About a dozen are on this list, many in our boxing program and others in the local Parkinson's Groups.

The healthier the person is, the lower the risk. It's a shock to the body, it is brain surgery.

A companion who worked out with me in boxing did have a stroke post-op. Thankfully his partner got him into an excellent rehab facility (speech, occupational, physical therapy).

For myself, the best improvement came from having more "on time" so I could increase my exercise level. Hiking, Biking, Running, Swimming, and Rowing are all great exercises. They have improved my quality of life. DBS allowed me to ramp up the exercise. I can not put a price on two weeks of camping and hiking with my grown children. It's well worth it.

Out of 100 people, 95 will be fine and have an improvement in life. 4 will not see an improvement. 1 will be much worse off.

That 95% odds of improvement was well worth the risk.

I did my dbs last year its totally a gamechanger. I have successfully reduced my medication by an impressive 80%, and as a result, I find myself enjoying much more restful sleep on most nights. Additionally, my mood has significantly improved, contributing to an overall sense of well-being.

My father was able to undergo Deep Brain Stimulation last Fall. Since the surgery, he has seen weight gain (which was a positive effect), fewer issues with dyskinesia, and a resolution with urination frequency. Have you undergone Deep Brain Stimulation? If so, what changes have you seen? If not, why not?