Deep brain stimulation surgery

[Kachimom]

my doctor said that I would be a good candidate for Deep Brain Stimulation surgery. I am very hesitant to do this. Hoping I could hear from some of yo who has actually had the procedure. Or maybe some one you know very close to you that has had it. Hope you can help me. Deanna ( [e-mail]) or Headlthunlocked.

[Sunnysky]

Hi Deanna I hope. You get some responses to your question I haven't had DBS but came very close to it booked into hospital and filled out all the necessary paper work but tried a new tablet to me Azilect and it gave me an incredible return to almost normal condition I realise it may not work for every one like it worked for me but it's worth trying I've been able to cope now for 18mnths I still have some yuk days but otherwise lead a normal life I do re commend the exercise fast walking as spoken about by John Pepper check his posts also check under DBS topics in past posts wishing you all the best in your journey to conquer the beast

Keep positive Sunnysky

[alcv]

What symptoms are bothering you the most ? DBS doesn't help everything. I've had it done & it changed my life totally. I don't ( & never did) have a tremor. I was so dyskinesia. I didn't sleep at all, couldn't sit still (my friend I was staying with had leather furniture & I couldn't stay on it but anyways, the DBS changed all that.

I am not one of the lucky ones that doesn't have to take meds any more or even cut back. I take Sinemet 25/100 every one and half hours.

The DBS doesn't help if you have balance issues. Works great for tremor & dyskinesia.

I do it again in a heartbeat.

Good luck !

[alcv in reply to alcv]

Me again. My surgeon told me that the goal of this surgery is not to decrease medication. Just to improve the quality of your life. I still deal with dyskinesia but I am now able to do most anything I want.

[Amazin]

I had dbs in March. I had bad tremor and dyskensia and was taking 26 pills a day. Now I can sleep most nights, I don't shake and I take 40 % o fthe medication that I used to.... but my balance and speech were effected. Now I am on a low dose of anti depressants. My advise... sit yourself down and define for yourself what is quality of life. Only you know... and then specifically ask how those aspects might be affected - both positve and negative. If you have the option film yourself some days and weeks before the operation so you have a point of reference.

[movinngroovin]

I am a DBS advocate -it changed my life. I am in the gym daily. If you trust your d0cs and they advise it--go for it -- I only wish I had done it 6 years ago when my neurologist suggested it to me!

Best of luck--as for me-it changed my lige!

[Belfort]

I don't write this to put anyone off DBS but to warn you and your partner to be alert. My husband was very fit and active, ran big businesses and his diagnosis at 57 was a shock, We had only been married 10 years and were wonderful soul mates. He had rigidity, not tremor and had DBS 5 yeRs after being diagnosed. Initially it was terrific. Off meds walking great etc. but within a few months he slipped back worse than before the op. The Neuro did some adjusting to no avail. But what worried me much more was the change in my husbands personality and behaviour. He became an aggressive, cold, unapproachable stranger. He rejected me completely. His behaviour was bizarre and I couldn't reason with him. He refused to let me come to his Neuro appointments so I could never talk to the dr who used the privacy act to refuse to answer my questions. He told me it was ' the relationship' that was the problem and that infuriated me. He refused to take any of my concerns seriously - eg dangerous driving, buying cars at auctions, Washing clothes by throwing them over a rope between the house and a tree and using the hose....etc. my husband also neglected his businesses to great financial cost. I didn't know how badly things were going till hus manager asked to see me. Till then my husband had never involved me in the business so it was a huge learning curve to have to take over with 60 staff etc. meanwhile I then discovered that my husband had had a 6 month secret sexual relationship with our cleaner. I was devastated beyond words on all fronts. Till then I had done everything possible to keep our marriage together but I could not accept that. I was a physical and emotional wreck after 14 months of living hell. I moved out and my husband really didn't care, I think that is what he wanted. Then just 4 months later, he suddenly became 'himself' again and begged me to come back. I was totally tormented by my decision. I could accept rationally that his actions had been brought about by DBS settings but emotionally my love for him had been drained away over those traumatic 18 months. Still I knew I couldn't live with myself if I didn't go back to care for him but our relationship has never recovered. If only I had been prepared for this change by the Neuro but he reused to acknowledge anything was wrong. I could also have protected our finances. The Neuro by the way faced the coroner's court earlier this year as a patient committed suicide post op, and, as in our instance, the dr paid no attention to the family's desperate concerns. He is also up before the health body as there have been many more complaints. The point I want to make is to arm yourself with info from the net and ask your Neuro to list all likely effects, both psychological as well as physical. Make sure you do lots of asking around to ensure you get the best Neuro, not just the one with the highest media profile. Our wonderful relationship is ruined and yet I have a duty of care to stick by the man I once loved deeply

[Hidden in reply to Belfort]

So sorry to hear your story , prayers to u both

[ErinE in reply to Belfort]

This happened to my dad and he hasn’t had DBS. He is scheduled to have it mid April.

[sunshineonacloudyday]

i had deep brain stimulation surgery Mar. 20th 2014. How can i help you.([e-mail])

[Kachimom in reply to sunshineonacloudyday]

I just really want to know what your thoughts are. Was it worth it ? How old are you? How long had you had PD? What were you like before and after, etc;. Thanks for you response. It means a lot to me,

[98Rob]

I had DBS surgery in 2007. It was the best thing I ever did. I've had PT since 1995. Remember it's not a cure. But it's meant to help with stiffness tremor and dyskinesia. It helps me with my balance somewhat. I am on much less medication than I was before. I'm still able to drive and live a normal life. I'm assuming you live in the USA? You must have good health insurance cuz it's very expensive operation. At least it was when I did it. And make sure you got an excellent surgeon and DBS programmer. Good luck.

[moonswife]

It changed my Parkinson's wracked life immeasurably. January will mark my 6th anniversary of the surgery. I shook so much in 2009 that I lost 100 lbs. Within the week after my surgery I had all my small motor skills back. You can see my little trailer in my picture. I went back to my power tools and continue to work at least a few hours a day on the trailers. Has the PD progressed? Of course. I am more tired, freeze occasionally, am less stable walking. Still, I take far less Rx than before, and have more "on time" than "wearing off" episodes. Best of luck.

[etterus]

I had mine done 11 months ago and still undergoing programming to refine it. I take less meds and sleep much better. Although it isn't approved for urinary retention this was and is still my biggest improvement. My dyskinesias and dystonias are the next in line which is a great relief. I ride a recumbent trike and workout at the gym 2-3x weekly. My weight has increased from 130 to 160.

It is very important to educate yourself to the fullest about the procedure and your DBS team. There are 2 different target sites that have different risks and rewards. The most common is the subthalamic nucleas and the other is the Globus pallidus internus. Make sure you discuss these options with your DR. There is also a full anesthesia approach that is faster and less traumatic to the surrounding tissues of the brain. Good luck.

[sunshineonacloudyday]

Hello,

I am a 58 years old. I was diagnosed with pd in 2004 when i was just 47. My neurologist suggested the surgery to me because he told me I was an ideal candidate due the fact that i responded to medication so well I take simemet (every 2.5 hrs) and mirapex (3x/day). in 2013 my pd was progressing to the point here I would have dykenishias about every three days. they would last most of the day and it was exhausting. from June of 2013 to March of 2014 I lost just over 65 pounds without trying. i always felt like I had been hit by a truck the day after.I am one the those people who can't consume any protein around the time i am scheduled to take the sinemet. I would have freezing periods as well. Mainly during the night when i would have to get up to go to the bathroom, imagine being unable to move when you have to go the the bathroom , its only intensifies the need and the panic whether I was; going to make it . I met with the neurosurgeon and he agree i would be a good candidate (this was in August of 2013) in January of 2014

I callee to start the ball rolling because had decided a few things.1. my condition wasn't improving any an d 2. I had come to the realization that could not be afraid to improve my quality of life for the rest of my life. Do on Mar. 19 i was admitted to the hospital. spent a restless night ( some of it nerves some of it anticipation. I really like the neurosurgeon. I live in Canada where the operation, appointments and MRI are all paid for by the health care system. I don't remember very many details about the surgery. the surgeon hit a blood vessel an that caused a stroke.

car system. The doctor came to see me every day I was in hospital and his finding was he expected me o make a full recovery. I have no regrets!!!! I would do it all again. I have not had a singe episode of dyskenshias since Mar. 20/14 and no freezing either. So look at this as an opportunity to improve the quality of life for the rest of your life . my is case id an extreme case and it could have been worse it could always be worse.

Be low is a link op an very good web site

dbsprogramming.com/category...

stay in touch I hope this has helped

[Pete-1]

Hello Kachimom,

Do you know what makes you a suitable canddate for a DBS implant ?

[Kachimom in reply to Pete-1]

I asked her about DBS and what her feelings were on it. It was during one of my regular check ups. She didn't elaborate on why she thought I would be a good candidate. I'm going to be talking with another Neuro/Parkinson's specialist also.

[llwwd]

You say you are very hesitant to do DBS. I would say not to do the surgery until you know for sure that's what you want. I had it done in Aug. I feel like it has given me my life back. I was very depressed. I knew it was never going to improve, only get worse. I feel like DBS was my last chance. I am sooo glad I did it. I had pretty bad tremors, rigidity, dystonia, dizzyness, insomnia and constipation. I still don't sleep very well, but everything else has improved tremendously. I am very grateful.

We have booked a cruise in Feb. It can be kind of scary. I understand I can get bad again, but I am going to enjoy this while it lasts. Oh, I was able to cut out some medications, I am 60 years old, was dx in 2010 and I am very lucky because I was able to retire about a year after the first time I went to the Dr and he told me "you are just going to be one of those little old lady's that shake". Of course things just got worse & I asked for a refferral to the University hospital.

I hope everything goes the way you want it to. Please let us know if you decide to have the surgery. I'm sure you will have plenty of support & best wishes from all of us Parkes.

Best of luck, Sherry

[NYC_Ray]

Well, I WAS going to get it done, MRI was good, and physiological testing went well, but when the next appointment he asked what I wanted from this surgery and I told him that I wanted to walk (When my meds wear off, I am a virtual cripple) and I also told him I wanted off the drugs,but I don't think that the doctor did a good enough job of telling us how it might go for me if I were to be in the bottom 2% and walk away unscathed. He told us (my wife and I) that I might become a vegetable, I might have mood changes, I was likely to turn into a real "bad guy". My wife turned on the water works and cried and begged me not to do it.

I'm gonna buy a stationary bicycle with a built in speedometer and try to spin quickly at 80 to 90 rpm. I heard that it works miracles.

I don't know how to advise for you. But if you decide, to go through it, I hope and pray for the surgery works and for you to come through (recover) quickly.

[Gridless]

I had DBS surgery about 16 months ago. It is not a cure. I still need to take my meds, but with a 40 percent reduction. The surgery helped in all areass, but I still get freezing, but not as often as before. What got worse was apathy and depression. I now need to take ati-depression meds with my PD meds. Weighing in the good and the bad, I would say that it was worth it for me. The surgery was almost pain free the recovery time was much faster than what I had expected. Hope this helps.

[Baileytwo]

I had DBS on August 4 ( my birthday). I would do it again in a minute. My life is back I have so many friends and family that comment almost daily on the difference. My problems were rigidity and tremor. My toes used to curl so bad. No more, and I have my smile back.