DBS Surgery: I am considering the DBS... - Parkinson's Movement

Parkinson's Movement

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DBS Surgery

annmariebaird
annmariebaird

I am considering the DBS surgery, as I am now taking 8 (25/100) Sinemet and 1 (50/200) Extended Release Sinemet each day. I live alone and wonder if that would be a problem. Would love to hear from folks that have had this surgery. Thanks!

33 Replies
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I have had it for 3 years. Love it! Wish I had done it sooner. I am 65.

Were you able to stop taking all medications, or just some? I live alone, do you think that would be a problem? Did it take a while to get it adjusted? Did your energy increase? I really appreciate your time to answer my questions.

No meds, I live with my husband, living alone should be no problem. The process is even easier now than it was 3 years ago. Good Luck! ask your doctor to be sure.

Wow! Happy Life to you!!

My Wife was diagnosed September 2016 but had symptoms 3 years previously, she has a tremor in her right leg which is being controlled with 3x125 madapar daily, her biggest problem is her speech which is getting very slurred, do you think DBS would help get her speech back?

The parameters for selection for DBS are many, but I would encourage anyone who has Parkinsons to approach their neurologist to begin their journey toward that end. My speech was beginning to weaken, and now it is just fine. Your wife is lucky in that she has you to advocate for her. Be strong - you can do this! If I can answer further questions, let me know! Annie

Thanks Annie for your quick reply, my Wife Vicky said what does DBS involve and if you are in the UK can it be done on the NHS ? If not what are the costs. Many thanks, Andrew

Do it! I had it in August. I am not off meds, nut taking half the amount that I used to. My main improvement is my walking and balance. I no longer need my crutch!

horsplay

Where did you have it done?

That is wonderful!

I had it done at August's University Hospital in Augusta Georgia. They have a very good program there.

Hi there I had DBS surgery Mar 2014.I am very glad I did. It came with some complications. the Surgeon encountered a blood vessel and i suffer a stroke. I was 56 at the time. I have not any dykonedhsa(?) we called them the jerky jerkies at home, since my surgery. it is really important to get a good night's sleep leading up to the surgery. I am very thankful I had the surgery and i am sure you will be too. Let me know if can be of more help.

sunshine on a cloudy day.

Stroke is my number one concern. Are you fully recovered from the stroke? Where did you have the surgery?

I am so tired of trying to manage my meds - too many too often. And - I have had to go vegan, as animal protein interferes with my meds. That was the last straw... no bacon or fried chicken!

On a side note, I call my dyskinesia the rattles.

Thank you for your input!

Annie

I still have some difficulties. But I have always said. It could have been worse and if your are going to have a stroke where is the best place to be but in the hands of a neurosurgeon in an operating room. I thank him every day for saving my life. I have NOT had a single day with any dyskineisa. i also had a similar experience with Sinemet. I lost 60 pound over a period of about 4 month. following the surge they said i had dropped to under 100 pounds.I still have to take it but i don't have the time conflicts I had before. and i don't take as much of it.

have no regrets about having the surgery

Janice

Thank you so much for your story! Take good care. Annie

I'm currently 30 months since my DBS which was done at OHSU in Portland OR by DR Burchiel.... one of the best on the planet. I was fully asleep and recovered very quickly. I have my electrodes placed in the globus pallidus internus which usually does not eliminate the number of Meds as much as the subthalamic nucleus, the more common site.

It's very important that you have a good team and that you are evaluated for appropriate success. Not everyone is going to benefit plus not every team is aware of this.

I think it's wise to have some assistants for at least the first week or two. You might not need any but if you do it's available... and you can always terminate its if you're not in need. Good luck and I hope you're as happy as I am with mine!

Thank you! Annie

I had DBS in Sep15, it appears that the right side electrode has been inserted in the incorrect location of my brain, therefore it is totally dependent on medication. The left side electrode has been inserted correctly. The result of this is that I have to take more medication than I should have to because the right side electrode is ineffective. This causes dyskinesia on my left hand side as more medication than needed is being taken than required, and balance problems because the left and right sides are not synchronised. I cannot have an MRI scan to determine the correct location of the right side electrode in my brain, because of the metal already installed in the DBS operation. Therefore my neurologist and surgeon will have to examine previous scans to determine what, if anything, can be done. This results in the following scenarios;

a) Surgery will be needed to relocate the right side electrode to the correct location, so that it will work properly. This will be the best case scenario, as less medication will be needed. Dyskinesia will be greatly reduced, and my balance will be improved.

b) The right side electrode has been inserted in the correct position, and the brain is or responding to the electrode.

c) The correct location of the right side electrode cannot be identified from previous scans, therefore nothing can be done.

Obviously, I am not keen on having a second brain operation, however this is my best choice, as the operation will have been a waste of time otherwise. My neurologist has said I will have to “muddle along” until they decide the next step. Meanwhile he has adjusted the controller to give me maximum control of my left side, to improve my mobility during my off-time, and overnight “freezing” when I am fully depleted of medication. This has helped a little.

In what city did you have the surgery?

So sorry for your troubles - ack!

Addenbrookes, Cambridge, UK. A top team, it isn't always easy to get the electrodes in the correct position. The brain is not like any other organ, it can be difficult to pinpoint the right place sometimes. I just hope they can put it right, the alternative will be a real downer.

You are very brave!

Thank you, you too.

toomuch
toomuch in reply to andrewij

Just read your reply here and wondering where you're at now. I had DBS in Nov 2016 and I'm beginning to suspect the same thing, that the one electrode in not installed in the right place. How certain is your surgeon that he/she will get it right the second time around?My surgery was 13.5 hrs, and since then my good friend went it and "attempted" DBS, I say that because it was not completed, she had a very bad stroke and 2.5 months later is still I'm hospital, paralyzed on her left side. I am on my own, and honestly don't know if I could do it again...

I live alone also, I tke 9x25/100 Sinemet plus per day, and 1mg Rasagaline. If the right-side electrode can be located to the correct position this will be reduced to 4 Sinemet per day. My advice is to go for it.

Not to worry...... I had DBS 6 years ago this month. It ended up as 5 brain surgeries due to post surgery infections and took a total of a year to finally complete. I just completed ny first battery replacement a few months ago without a hitch. I have had PD for 11 plus years now and can't imagine life without the DBS. I am reminded of what it would see like when I visit for programming for sure!

Given the whole year and everything I went through installing the DBS, I wouldn't hesitate to do it all again! It's a game changer!!!!!!

annmariebaird
annmariebaird in reply to Pelley

Thank you - you are very brave! I sometimes think that Parkinsons makes heroes! Annie

Hi Annmarie I was going to also have the DBS but one week before admission I tried Azilect. It was amazing o felt the provememt with in hours I know it doesn't have that effect on everyone but it's. Very much worth a try I've been on it for 2 years now and it's still working

Keep positive

Sunnysky

Interesting. Were you on Sinemet before and was it not working for you? How long have you been diagnosed and what are your symptoms?

Hi Annmarie

I was dX 12 years ago have been on Madapar 125with Comtan for most of that time before Azilect my off times were getting very frequent I don't suffer from tremor but dyskinesia and think they call it bradydyskenesia severe slowness of movement but Azilect has fixed that I'm on 2/half hourly meds starting at 6am and I certainly know when I've not taken my Azilect in the morning hope you have some good results from whatever you choose to do

Keep positive

Sunnysky

Love mine. As far as being alone you could prepare in such a way.....

I've decided after rethinking it. Go ahead, PD will get worse.

I am so happy for you!!! You will not regret it! Keep me posted!!

Annie

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