Does Deep brain stimulation even work for Dystonia

[Josh_l]

Hi all my name is Joshua,

I have got some questions and concerned about the opt I’ve had over a year ago called deep brain stimulating (DBS), my doctor told me that it would approximately take a year before I can see any changes but it has been now over a year and I haven’t seen anything happening I am still the same way as I used to be, since the surgery I have only been up to the hospital twice for a Check up and for a the brain stimulating, I am impatiently , praying and hoping that it might work but haven’t seen any changes whatsoever on my health , I am starting to give up now and loose all the hope and fight I have had in my.

Is anyone out there who has had similar experience and health condition like me and have and surgery how long did it take for BDS to fully work on you ? Please I need some reassurance now, because I am literally loosing my mind and highly considerating of getting it remove soon as possible as it is not working at all on me.

Thank you for taking the time to read through it

[MBAnderson]

I have not had DBS and so have no firsthand experience, but my understanding is that the benefit is immediate --- as in shortly after you come out anesthesia or shortly after they have the batteries properly adjusted. That your Dr. said it might take a year to feel a benefit would concern me, i.e., it is suspicious and I think it's suspicious that there has been no affect of any kind after a year. Even your number follow-up visits is suspicious to me.

Where do you live and where did you have it done?

[Josh_l in reply to MBAnderson]

Aw thanks will go see them in few weeks and have a chat

[Hikoi]

You should be regularly monitored and having your meds and stimulator adjusted until it is working well for you. I would be most perturbed if i had had only 2 follow up visits!! That is bad care.

It can take up to a year to get things adjusted just right but it certainly doesnt take a year to work. It took 3-4 months for me.

[Josh_l in reply to Hikoi]

I use to take med but I had to stop with the meds because of the side effect of it and didn’t, however I am going back there months for another check up and to see if the can stimulate it again

[Josh_l in reply to Hikoi]

Also I am glad and happy to hear that yours worked well

[Hidden]

Josh, there have been quite a few posts about DBS on this forum and many have been quite positive. Here is a link that will show you some of those posts so you can browse through them to see if any are helpful for your particular situation!

healthunlocked.com/search/p...

Here is a link to another thread that you may or may not find useful.

healthunlocked.com/parkinso...

Art

[Josh_l in reply to Hidden]

Thank you will do

[Pelley]

I had DBS over 6 years ago at a very prestigious world renowned medical facility. At the time it was cutting edge technology. My concerns at the time were post DBS follow up nd programming to my needs. It took a (learning curve) to train programmers and a few Medtronic reps to get everyone up to speed. I remember asking one of the Medtronic reps at one of the programming (tweeks) how it works. His reply didn't surprise me but solidified my take on the system....... He looked at me and literally said......."We really don't know".

That said, and 7years and a battery replacement done, I am very pleased with the extension on my life it has added. The adjustments to the settings make huge changes immediately. IT TAKES A GOOD PROGRAMMER to understand and be able to pick away at the progressions of PD that change like the seasons of the year!

JOSH.....Find a programmer!

[Josh_l in reply to Pelley]

Thanks for the reply it did really help me a lot

[Hitch2020]

Yes, I had it done a few months ago. For me it has helped with off dystonia a lot. I can finally walk fairly normally again. I am sure results vary though.

[Josh_l in reply to Hitch2020]

I am pleased and happy to hear that yours worked and that you are okay now

[Sandmanliz]

I know Dr. Tierney in Florida who is been doing the Neuravive Ultrasound treatments for essential tremor was talking to me on the phone about being excited that it might help people with Dystonia. That was over a year ago. Maybe there some developments?

[ktbate]

Josh, wow, you should have seen improvements during your first programming session and then should have had as many sessions during the first 6 mo. as needed to change your life around. Something is not right. If your insurance allows I would try for a second opinion at one of the 3 Mayo clinics either in Rochester MN., AZ. or FL. I went to Rochester for a 2nd opinion and will have my DBS done there soon. DBS is supposed to help with tremors, dyskinesia, and dytstonia, and Essential tremor.

Do you have any Parkinson's symptoms like tremor, stiffness, bradykinesia (slowness) or dyskinesia or is it just dystonia? I would not get it removed until you have the device properly programmed with a new/better programmer.

Where do you live?

[Josh_l in reply to ktbate]

Ah thanks I know, I’ve had the opt done over a year ago and I had to for 3 weeks to get it programming which I was so excited about as I have so much on it and seen how it has changed people life around. After I have had it my hands seemed to be easer at first, they decided that I should get a check up every 3 months to increase the intensity of the electricity and I do live in the uk

[Josh_l in reply to ktbate]

I do only have Dystonia although some time I do have some tremor and stiffness

[ktbate]

Have they ruled out PD? I am wondering if they targeted the globus pallidus when they did your DBS. Can you get your devise reprogrammed soon by a different doctor?

[Josh_l in reply to ktbate]

What does PD stand for also I am not sure will have to ask them about it when I see them in few weeks, alternative I would ask them to increase it to a high level at once and see what happened...

[ktbate]

It stands for Parkinson's. Some people like me also have dystonia along with Parkinson's. I hope you don't. Don't worry they are two different diseases. It takes 1-2 hours to adjust or change levels on your device. They have to keep adjusting it until you get the right amount of electricity and your symptoms improve. If you have Medtronics brand there are 4 contacts, Boston Scientific has 8, so does Abbott. Good luck. Have them keep adjusting until you feel much better.

[Josh_l in reply to ktbate]

Aw okay I see thanks... hope that you are okay my symptoms aren’t clear enough as they wasn’t even sure at first if it was what to start with ... hope that you are okay now and everything are going well with you.... I will make sure that they do that also would love to keep in touch with you to know how you are doing in a daily basic if that is alright with you

[ktbate]

OK Josh. My name is Karen. Lets keep in touch. I live in Wisconsin.

[Josh_l in reply to ktbate]

Cool Nice to meet you, I am Josh I live in the uk how would I keep in touch with you on here

[Josh_l in reply to Josh_l]

Can I dm you on here if that is alright with you

[ktbate]

I'm not really sure

[robdolman1]

My DBS is two years old now. For the first six months there was no change - until they realised that they had mislabelled the wiring and that they'd spent all that time trying to fix my good side! When my specialist nurse swapped over the leads on her laptop everything was great - the tremors controlled and have no regrets. I'd recommend the procedure to any who are deemed suitable by the specialists.

[ion_ion in reply to robdolman1]

No other side effects?