I’ve been approved by Kaiser for a DBS (Deep Brain Stimulation) operation for my MS/essential tremors. Would like to talk to someone who’s had the same operation. I need to know:
About your experience during the operation,
Post operation pain & discomfort
The after care involved
The after care length of time & cost
The time required for your feeling of normalcy to return
Thank you
I can't help you, I'm sorry. Yes, surgery on the brain does sound scary. But at least there is something that can help! Perhaps the doctor/surgeon knows of a patient who has had this done who would be willing to talk to you. Good luck and let us know how you do. Praying.
I also have MS/ET and have had the DBS surgery. I had the original surgery on both sides of my brain in 2015. It was only partially successful so they redid my left side in 2022. The adjustment didn't help my hand tremor further but did help with swallowing and speech.
During the operation the most memorable thing is when they drilled the holes. I didn't feel anything, it just sounded loud. But that part only took 30 seconds per side, so not bad. When they adjusted the electrodes I couldn't feel anything, I could only hear the machine working as they moved them. They would have me try saying certain sentences or doing certain movements so they could compare. No pain during the procedure.
Post op I had a terrible headache for several days. The incisions didn't hurt much but I did have to keep bacitracin on them. That and headache medicine were the only real after care I had to do. The headaches started to get better after 4-5 days.
I had to go back a few days later to get the battery put into my chest. I was worried my bra would irritate the incision but it didn't. I actually felt better when wearing my bra because I didn't have weight pulling down on my incision.
As for feeling recovered from the surgery, I don't remember how long that took, so that probably points to not being exceptionally long or memorable. My neurologist at home didn't turn my device on for around 3 weeks to give me time to heal. After it was turned on we went out to lunch to celebrate because I could hold the silverware without shaking the food everywhere!
I will be excited to hear from you because I have never spoken with anyone else who has had the DBS surgery before. I will be excited to hear what you think and how you do. My very best wishes to you. Feel free to contact me any time.
Thank you bavery207 for answering my question. I have never been on a website such as this one nor have I ever been on social media. Because of medical privacy issues, I’ve not been able to find someone who’s had the surgery. This is a huge step for me.
I’ve been told by my Health Care Provider that I will need to stay with someone during the aftercare & that I won’t be able to drive for some time. Problem is my whole family still works and I’m separated from my husband and live alone and have no children. My husband’s retirement pays for my healthcare. I’m a 73 year old female. It would not be a good fit for me to have my husband’s help.
That’s why I’m concerned about the aftercare and especially how soon will I be independent again and without the need for anybody’s assistance. Thank you, Potatoskins
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