Has anyone had the Deep Brain Stimulation (DBS) op? I have just had the op and am keen to share experiences. I have had PD for 17 years.

[compucure]

I would also be keen to know if anyone with PD goes to a gym. I go 2-3 times per week and again would be keen to share experiences. Thanks. Tony

[mazpar]

hi ive had deep brain stimulation 4 years ago i have had parkinsons 13 years

was diagnosed at the age of 40.i am currently reasonsably well i would say its improved my life 80% but balance a bit off and speech gets worse as day goes on. although i am doing a voluntary day at phoenix radio as i lovw northern soulmusic and somehow still manage to dance so that keeps me fit ,if there is anything you need to know please reply to message.

[compucure in reply to mazpar]

Thanks for this. Did it take some time before the benefits of the op were noticeable?

What are the main improvements since you had the op?

[dottie in reply to compucure]

Yes. No tremor. And it does take time.The STN takes less time than the GPi which can take up to 6 months. Patience. That's why they call us patients.

[dottie in reply to mazpar]

I also am available for info that I picked up along the way. The first is DBS is not a cure—though those first few days feel like it is. Secondly find a stellar programmer, it's worth it. I get on a plane once a year to see her. If anyone needs the name of my programmer, let me know here and we'll talk on the phone or do a private email. She is a genius!

[Gwennie1 in reply to dottie]

Can you please tell me what is a stellar programmer?

[Sandralaw]

I loved my gym time when I didnt hhave Parkinsons but I have never tried it Im going to my local leisure centre to try the pool and the gym if it helps and makes me feel better in mind and body Im up for it.

[compucure in reply to Sandralaw]

I wish you well - do let me know how you get on. I have not been for a while since I recently had the DBS op for PD and it is taking tie to recover from it!!

[mazpar]

it was instant for me has i had gone as far as i could on the medication and basicvally was boucing off the wall before the op but then went down and since ive been on amantadine been ok. where abouts did you have the op?

[compucure in reply to mazpar]

I had the op in the Jon Radcliffe in Oxford.

Are you taking any L-Dopa medication or just the amantadine?

[mazpar in reply to compucure]

no i.m on co-beneldopa, 22mg[1aday] ropinirole,. 3sinemet + 3 amantadine, 1 donperidone

[dottie]

Hello all,

I have had DBS twice: The first was 2005 and the electrodes were put in the STN for my Parkinson's. I also had pronounced Dystonia that was getting worse so in May 2110 I had DBS with the electrodes inserted into the globus pallidus which helped a lot.

BUT the most important part is the programming. You MUST have a good programmer. I ofund mine, and though I take a plane ride, it's worth it

I was diagnosed October 11th 2001.

[mazpar in reply to dottie]

hi dottie, and every 1 i travel to newcastle fom huddersfield about 2hrs + half butworth it still on 1st battery 4 years down the line. but very interested im what u have to say.

[dottie in reply to mazpar]

Hi Mazpar, I have posted a lot on DBS, because I went through holy hell at one of the most prestigious hospitals in the country. It sounds like you are stable. That's great!

[LauraL in reply to dottie]

Since having my first DBS 3 years ago, I am starting to contemplate the second surgery for the tremor etc...that is starting to affect by left side. I had my first surgery in Kansas and have since moved to NC. I totally agree with you, a neurosurgeon you have faith in and an excellent programmer do make the decision to do it again IN KANSAS an easy decision.

[dottie in reply to LauraL]

Underscore "an excellent programmer".I had a rookie who didn't know what she was doing and after 1.5 years of ridiculous attempts at programming I went out on my own and found one of the best programmers in the country. She took a look at what had been done and commented that it was "completely haphazard". Medtronics should provide better training for programmers, and programmers in training should be licensed through the FDA. I have had 2 surgeries and am told that my setup is one of only 50 on the planet. I'm glad Laurai that you have a good team. Good luck with the 2nd one!

Dottie

[LauraT]

My brother had DBS done a few years ago. It seems that the best he was, was right after the surgery (maybe due to the brain swelling?). But a few days after, all that goodness was gone. I can't say that I find that the DBS did him any good. He is 49, and was diagnosed about 8 years ago. I just moved back to the area he is living in after being thousands of miles away. It's destressing as a "little sister" to not know what to do next for him. He also just finished going through a divorce and that took quite the toll on him. I don't know where to turn for resources or additional help for him.

[LauraL in reply to LauraT]

I would have the surgery again. He is too young to give up on something that can give him so much relief. I had surgery 3 years ago and at that point I could not even hold a book to read to my students. The final straw for me was I had two new grandchildren and I could not feed them because I was either shaking them as they rested on my arm or if I held them the other direction the nipple on their bottle was shaking in and out of their mouth because of my tremor in the hand holding the bottle. It didn't help with my stamina, my crazy night hours, or my randomness (which I must say I have always had), but life is good again.

[dottie in reply to LauraT]

It takes awhile, and it's all in the programming and the surgeon hitting the target. Plus stress affects it in a BIG way. If I were he, I would get a second opinion. Have a conversation with a good programmer and get any and all MRIs or catscans for he or she to look at. Sounds like they might have missed the tafget. If you need to talk, let me know through this forum.

[artist]

I am 43 years old. I was diagnosed 2/04. I had DBS last April...got bad infection and had to have everything removed in early May...Had DBS again in august, 2010...programmed in early September and have been doing wonderfully ever since...I am an artist and was limited on my artwork...till after DBS...now I am able to produce my artwork and at an even better quality than before. Having DBS has been the second best thing I've ever done...1st being marrying my greatest blessing, Lisa October 23.

[dottie in reply to artist]

Hi, I am a graphic designer and an artist, too. I have just the right number of clients. For awhile before the first surgery my teacher had me drawing with my left hand. That did more for me than a thousand mg. of any drug: to know I still have it! (the ability)

[Jash]

Does anyone who has had DBS wish they hadn't?

[cepd in reply to Jash]

Had DBS 2/2012 - used to walk better and take fewer drugs. I had managed well with alternatives - now the medical establishement owns me and they add drug upon drug instead of owning up to the fact of misplaced lead....stay as far away from docs as possible and live life on your terms.

Undertook it to reduce meds - more than ever - thresholds very low on my leads.

[dottie in reply to cepd]

Find a better team and hospital. There's no reason to suffer. It does sound like they did a lousy job. So sorry. It can be corrected. Your choice.

[cepd in reply to dottie]

found a better team and had operation done again in 12/13 - my meds reduced by half...much better results.

[jazzfan53]

I was diagnosed in 2003 & had DBS surgery done in 2010. It took one year of programming before I finally noticed a good difference. I had no complications or side effects, it just took a long time to find the right programming setting. I feel lucky about it and don't regret it at all. But results can vary! I had to get it because I had gone through all the meds and it felt like I was going downhill fast.

[compucure]

I am finding that it is taking a long time to get the programming sorted. It is one thing at a time - have managed the tremors and diskynsias being more or less eliminated - next hurdle is to get my walking sorted - I travel hopefully!!

[jeffjennings]

I was diagnosed with pd in '96 @ 35 years old...my biggest problem seems to be my walk and my balance...I had dbs surgery approx 1 year ago and all went well but I havent seemed to get my walking under control. I tend to shuffle more than I would like.

[billyboy11 in reply to jeffjennings]

I was introduced to the Alexander Technique (AT) in June and on my first visit I stopped shuffling for about 3 weeks until lost it when I was very stressed. It's more of an education than therapy and they put a lot of emhasis on the position of the head in movement and body poise and thinking your way through your intended movement. That's all a bit vague I know but there's a lot more to it for PWPs (people with pd). There's a lot on youtube. It's worth a look.

[goose63058]

Yes I've had it done. Two years ago. In Oct 2010 I could not walk at all. My neurologist turned off my batteries, and I could walk again. My batteries are still off. I walk like a drunk, my balance is awful. I get dizzy just standing on the scale, not because of the numbers but because of the height. My voice is giving out on me. Very hard to hear me. Swallowing has recently become an issue.Most food seems too dry to go down. I have to wear nylon night gowns so I can turn in bed.

When I turn my batteries on, my fingers tingle, then the room spins. in a few minutes that stops and I feel ok, I don't dance around in my chair, but I can't walk with them on.So, maybe one day it'll be helpful to me, but for now, it's just a discomfort.

[Jinty8]

I am hoping to have DBS - I've had PD for 14 years and am getting quite fed up with it. Can anyone tell me what the 'qualifying' criteria are for the procedure and how long does it take on the NHS? I have an appointment to see the appropriate neurologist (in Edinburgh) and that's over 4 months since I saw my local neurologist and 6 since I mentioned it to PD Nurse. I've also been advised that it could take a further 3-4 months after seeing the Edinburgh neurologist for funding to be approved before I go on a 'list' - any light seems to be at the end of a very long tunnel. Can anyone clarify?

[Dawn229 in reply to Jinty8]

They have to do exstensive testing before you are accepted for consideration. Takes months possibly. Thats here in Cleveland,Ohio.

[LauraL in reply to Dawn229]

I wanted to have the procedure done at the Cleveland Clinic but insurance coverage was a factor. The surgeon that did my procedure in Kansas turned out to be a pioneer in the surgery from the Cleveland Clinic which immediately gained my respect and confidence. I don't understand this long testing period that I keep hearing about. I didn't have these tests.

[dottie in reply to Dawn229]

Cleveland Clinic is one of the best in the country.

[concernedspouse in reply to dottie]

My husband has had early-onset PD for 20 years and is seriously considering DBS, and I'm wondering how to help him find the best surgical team if he does go ahead with it. We live in Boston, and they do it at several hospitals in this area. Dottie, you mentioned having a Boston doctor and also mentioned flying out of town for your second DBS surgery. Did you fly TO Boston or AWAY from Boston for your second surgery?? If AWAY, then where to? If TO, then which hospital? Thanks for any advice you can offer us!

[sailing1 in reply to Jinty8]

i had dbs in Bristol in 2008. I live in N. ireland and was put forward for consideration in Nov 2007, was approved for funding in Jan 2008 and went to Bristol for assessment in February. The assessment alone was an enlightening experience, i had not met such a team of PD experts before! Was approved for surgery which I had in April and haven't looked back since. Am still on my first battery! Only problem is having to go to Bristol for programming, i think this should be fine tuned twice a year and not have to travel so far. Would be great if we had a programme clinic in Ireland...

[Joealt]

I should count my blessings.

[LauraL]

I had the procedure in Kansas and it certainly didn't take that long. I made the decision, I was sent to see the surgeon and the surgery was 6 weeks later but that was because I wanted to wait till the Christmas holiday was over.

[dottie]

I also have had DBS twice. I have alot of dystonia so my doctor recommended a separate implant to the globus pallidus (Gpi) all by itself. (AFTER having the dbs.stn.) I am one of 50 on the planet who has this setup. The globus pallidus is the seat of dystonia. My terrific doctor at a Boston hospital wrote an official diagnosis "a nasty mix of Dystonia and Parkinsonism——Medically intractable"

I would agree with the 80% better (entry below) It's been a long road for me. I will gladly help you but bear in mind I have a strange case and have to take a plane ride to see my programmer. So fire away, it will be interesting.

[rons]

Where is good in the north of England?

[Cyrano in reply to rons]

I visited a consultant at Salford Royal hospital near Manchester UK this week. I need to go through several assessments for DBS and am told the whole process could take about 12 mths

[Jash]

I had mine under general anesthesia 2-1/2 years ago. I go to the gym 4-5 times per week. I find I have more balance issues now than I did pre-DBS a which has dampened my jogging as well as the distance I can walk. Nonetheless, on Thursday, I will have my first battery replacement. Would I do it again, yes I would. I'd we have to have this diagnosis and it doesn't get better, DBS is at least a non-medicinal option to live our best life. I would not go out in public anymore except in rare circumstances; I ate soup with a straw and couldn't hold an ice cream cone. While I definitely fall more now, I have no tremor and no concerns about going out to dinner. I take no other Parkinson's meds. Best to you. Don't give up during the first year of programming. It can be challenging and you mat have doubts, hang in there

[Jash]

I had mine under general anesthesia 2-1/2 years ago. I go to the gym 4-5 times per week. I find I have more balance issues now than I did pre-DBS a which has dampened my jogging as well as the distance I can walk. Nonetheless, on Thursday, I will have my first battery replacement. Would I do it again, yes I would. I'd we have to have this diagnosis and it doesn't get better, DBS is at least a non-medicinal option to live our best life. I would not go out in public anymore except in rare circumstances; I ate soup with a straw and couldn't hold an ice cream cone. While I definitely fall more now, I have no tremor and no concerns about going out to dinner. I take no other Parkinson's meds. Best to you. Don't give up during the first year of programming. It can be challenging and you mat have doubts, hang in there

[kdeepak4u]

My uncle is in Bangalore city in India, He wants to go for DBS but not sure fully, can anyone who has got DBS operated please let me know on [e-mail], It is very urgent, Please help, Thanks.