Well..... this has been a tough 2 months. First month and a half was waiting for the DBS surgery to heal and only half of the second was turning it on and learning how to manage it. That is still being learned now. I think it is going to be a lo-o-o-o-ng process. Leo is a very impatient man and that makes it harder. i don't blame him, this has been a hard 9 years to deal with.
I have been reading more and more posts and have seen how doctors treat patients with DBS implants very differently. For instance, Leo, my husband; had only his left side affected by PD. His doctor believes both sides needed to be implanted because PD always progresses to the other side. It will cost less to do both sides at one time. We agreed.
Leo has been able to cut down on his Requip. He is taking half the dose now. He took 4 pills a day and now only two. I hope he can lower it to one a day. We don't think he can stop it completely due to the Restless Legs problem.
keeping the DBS programmed a very frustrating thing. Every day is different. We did not know it would be this way. I want others to know this before they go into this. It is a very frustrating thing to deal with. One day it is great and then the next is like nothing was even done! The setting then has to be raised or lowered. Not only every day but sometimes throughout the same day. Leo carries his remote controller with him when we go out.
The doctor has told us this problem is due to the brain getting used to having this DBS controlling it. The brain is actually not wanting to let this happen! It will take a few months for the brain to let this happen! That is why it takes such a different amount of time for people who have had this done.
Leo tells me the battery pack; the controller, that is implanted in his chest is itchy. It drives him nuts at times. It was also painful the fist month. When he hit it or just touched it. When his shirt rubbed on it. That has passed now just the itching is still there. He takes the implant and holds his hand over it and shakes it gently. This stops the itch.
There are days Leo still gets angry and frustrated with the whole thing. He is now on an antidepressant. This has all been hard on him and me. DBS is different for all PD sufferers. .IT IS A VERY LONG SLOW PROCESS. If you are thinking of doing DBS remember this before you can say, "I have my life back! " like some of these very blessed people we read about on their posts about DBS.
I hope this helps others who are thinking about DBS. I just want to help. God Bless you all.
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Written by
lmbanni
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Sorry I have not been in touch. Sorry that things are taking longer than you hoped. It must be very frustrating for you both. I wonder if everyone experiences similar problems. I hope things get better for you both soon.
I had the DBS surgery over a year and a half ago and am very satisfied. I have been given the ability to change my voltage level on my settings. I also got to get trained in the use of the programmer. I have been a "spokesman" for Medtronic and also serve on my local hospital's steering committee for their foundations board. The purpose of this board is to raise the funds to build a Parkinson's Research and movements disorder treatment center here in Savannah Georgia. I would be willing to talk to both of you about the settings and their significance. Email me your phone number and I will call you at your convenience.
Glad to hear about your experience-- programming is everything. I'm going to keep your contact info handy. My experience has been positive, although I've picked up a balance problem I didn't have before. I'm convinced that the correct programming will manage this too.
If Leo wants to have the best success possible he will need patience. Small changes at a time -took about 9 months to get here but I have had very little change since. Also I think that every one has been told they may have balance problems afterwards. Some of that is due to doing so much you could not due before, some muscles that are weak. What was your goal before surgery? My goal was not to go into a nursing home. That goal has been blown away, I think but how much my life has changed in the last 2 years as I drive past the nursing home. Did you catch that "as I drive past the nursing home".
I had my DBS in June. In the past 6 months, Dr. Jill had adjusted the settings monthly for first 3 months. My next appt is on the 14th. I still encounter PD symptoms but not as bad as before. I have also spoken at 2 Medtronic functions and at the El Paso New York Life Office to tell my story. My quality of life has improved, I still drive, and am active in PD support group and also active in supporting sports at New Mexico State sports. Stay
Active my friend and dance the Parkie Shuffle when you need to.
My husband had deep brain surgery in March, 2012. At first things went just fine. He was programmed and able to drive again, and started to feel better. But one incision did not heal, and even though I kept telling the doctors, it went untreated until the last of Sept. End result was that it came open, exposing the electrode in the right temple area. He had immediate surgery and 3/4 of that electrode removed. It tested positive for bacterial infection. Had a PICC line put in, and just this Friday morning, completed 56 straight days of 2 times days, 7 days a week, IV infusions of the antibiotic as an outpatient at the hospital. They took the connection that is still in the brain and moved it over a ways , new incision, and it appears to have healed up. He feels very weak, as this was a very powerful antibiotic, known for causing weakness. Thank goodness this was the side least affected by the Parkinsons. His left side is still programmed, but he has dystonia frequently. The DBS surgery stopped the constant movement of his feet when he was at rest, the up and down movement of his head, and opening and closing his mouth. At first, his meds were cut down too quickly, and he was under medicated. The neurologist got him back on his meds, taking half the dose he did before. Now it's a waiting game, to see if they can implant a new electrode connection, and program it. If not, he will have to have the rest of it removed, as well as the neurostimulator in his chest. Will have weekly blood panels done, see the infectious disease specialist in 2 weeks, and go from there. They think if things are okay, it will be at least 3-4 months before even considering surgery. It's a good thing I retired this year from 44 years of teaching, and can be home to care for him. He's trying to be optimistic, was a real trooper through all those daily treatments, and get back strength enough to have something close to a good day. The surgery is good, but it takes time for the programming to be refined, and especially-one mustn't get an infection in an incision!!
I went through a solid year and 5 surgeries in/out in/out in,,,,, due to post surgical infections. PICC lines twice.... all from my neurosurgeon who boasted a less than 3% infection rate. My surgeries were not done in the back of an old dodge van down by the river, it was a major player in the medical world. It can happen anywhere.
All things considered, all the surgeries and problems I would do it all over again. I am much more useful and most days feel energetic and like "I can make a difference" or "prove myself useful" to myself or someone. The secret I am finding is the controller/programmer. My wish for the future is to gain ability to fix those little changes the PD throws at you myself without running to a programmer.
Wow, I have read so many differing experiences with DBS. When I was first diagnosed I thought it was the "great hope", now I am not so sure.
By the time I was diagnosed, I was already bilateral, but most days respond well to the Azilect that was prescribed for me in the beginning. I do deal with muscle spasms, fatigue, insomnia and cognitive issues, but I am thankful that I have not progressed as quickly as some.
Thanks to all who have shared their experiences with DBS.
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