I appreciate you sharing your experience. I’ve personally been trying to recover using brain retraining and psychedelics for about 9 months and think I’m now starting to surpass the results I could have gotten from DBS. My spine is undoubtedly a mess from dropped head syndrome but I am bothered by dystonia symptoms very little. I just did 2 solo backpacking trips and realized there’s absolutely nothing I can’t do physically even if it’s new and challenging at first. Some things I am doing better than before my accident like playing guitar. I’ve also hit new personal records on both squats and deadlifts despite my spine issues. They are little reminders that the healing is real and very, very deep. Seems like everything is coming back. At one time I thought getting this surgery was the only way to get my life back so I want to share some hope with everyone else. Glad to hear how much the surgery did for you. With the amount of success I’ve had recovering my body, I really do believe we will learn to treat dystonia without invasive procedures like this. I’m looking forward to a brighter future for us all! 😃
Excellent video, Jordan C Hanson! I will share my experience by tagging on to this. I am 17 months post-DBS surgery. I agree with your pain assessment; the worst part was where the wires connected, but I do not have the headaches, luckily. My DBS was for Cervical Dystonia and has improved my tremors 100% and my tilt about 99%. I am still playing with my programming settings a bit. My body seems want to go back to the pre-surgery posture and that causes some pain. My hand writing has tanked which was an immediate side effect. My insurance covered 100% of the surgery. My experience has been so very positive.
Thank you for sharing this part of your life publicly. There are so many people looking for real information that you present here. We are scheduled to meet with a neurosurgeon at the Children's Hopspital of Philadelphia soon for my 9 year old son. His issues are a little different, he has a genetic epilepsy that has been resistant to all meds. He has on average 100 seizures a day....however...is normal in every other way amazingly. Again...I am grateful for you and sharing this.
Thanks for the great video Jordan! I’m meeting with my neurologist this Friday and am going to pursue DBS for my Parkinson’s disease. Best wishes for your continued improvement!
I have Cervical Dystonia also. I had DBS surgery January 25 and 27 two years ago. If I had it to do over again. I would. It has helped me 95%. Everybody that knows me said they can see a big difference. Now I can live a normal life. I use to call myself....Linda Blair. The one that played the exorcist. I no longer call myself that. :):):) I was in and out of the hospital on two days.
Thank you! I am extremely happy for you. This cideo however has made it clear to me that I am steadfast in my desire to avoid DBS. Also ypu description of spatial awareness or lack there of was spot on and I deal witht hat everyday. I will use this info to be less annoyed at myself when I drop things or cut myself. Thank you so much. This explained so much to me. I will be better able to explain to my doctors why I deny having DBS now that I understand the pros and cons
My name is David a Olsen. I’ve had Parkinson’s since 2017. I get tremors and I get lately. I’ve been rocking back-and-forth when standing in the mirror shaving and brushing my teeth in the morning especially when I’m resting medicine helps but a lot of times I forget or I’m getting side effects from the medicine Movement disorder neurologist suggesting DBS I’m bringing my children my kids to my next appointment so the doctor can explain it all to them. My question is yes it’ll help with the kid with the problems I have now, but will it prevent them from all new problems from getting worse, thank you for your video. It was very informative. Thank you and stay strong and don’t let the Parkinson’s control you control the Parkinson’s thanks again. Stay strong.
I will never try this again I tried it one time and after the second or third Zapp on my skull within about two minutes I got out of that building of got in my car and left it was the most painful experience I've ever had in my life and it did nothing for me but give me headache
Maybe I'm lucky. I had my programming done a month after my surgery, had no problem with wires in my neck, and have full mobility in my neck. My essential tremors were severe...couldn't do anything like using utensils, writing, drinking, etc. I would shake I too death or not be able to hold most anything for any length of time. I had both sides done. I had my right side done first. After a month, they did the programming. A Boston Scientific representative and a neurologist did the programming together. It only took 2 appointments. I am very steady with this right side pouring from a pitcher, eating,brushing my teeth, etc. It has been life changing for me. I am to go for the programming of the left side in a few weeks. I am in my early 70's. I was out of it except when they woke me and checked leg, hand, and arm movements. Mine was done at Emory, in Atlanta, and they were wonderful. The surgeon was great and a good bedside manner. The neurologist and Boston Scientific people were very competent, and really knew how to fine tune things to get the desired results. Everyone during the whole process was very professional and kind.
Is the dbs still working for you? My kid has cp and dystonia. Seems like a treatment will work for a while but then not respond. She has a baclofen pump that worked at first now symptoms have returned,. Im very hesitant now to allow dbs.
My DBS is still working. In my case, I have had to get my stimulation adjusted a few times. Initially to target the dystonic symptoms. This was a slow progression with neurologist appointments every few months. Just like your daughter, the initial treatment was working well. However, I was pushing myself very hard with studying at university, working in a laboratory, and heavy weight training for around one year. Then I relapsed; my symptoms came back worse than before. I have improved a lot since then. Working with my neurologist to get me back to a new baseline with stimulation, and finding a new balance of those activities, some scaling back. Nothing is perfect. The DBS has helped me, and is still helping me. That being said, it is a decision that isn't easy to answer. I would ask that you to talk with her neurologist about what they think are the best options.
@@dystoniame thanks for the reply. Her neurologist is telling us she is a good candidate for the dbs. We need to get a second opinion. Have you been able to reduce the amount of muscle relaxers and meds you take?
I just found your video, and I want to say I found it very helpful. I went through the surgery this past November, and I am still getting past some of the hurdles. The pain in my neck was the hardest, I would have to say. One question I have, though, is I have been having some major cognitive issues with my speech, where my brain knows what I want to say, but it doesn't come out. Did that happen to you? Any advice would be greatly appreciated.
Hi Shawn, Thank you for sharing your experience with DBS. I have had a speech impediment caused by the Generalized Dystonia, and my DBS has helped somewhat. It sounds like you are experiencing Aphasia. I would recommend talking to your neurologist about this during your next programming follow up appointment. I'm not licensed to practice medicine, but I would guess that your settings are not quite right.
That's what I was thinking as well. My neurologist is not the best if you get my drift. But the person who has been helping with the programming has been wonderful. I'm going to start seeing a new neurologist at the VA here in town on April 7th and that was one of the items I was was going to bring up, the aphasia. Hopefully they see it where the other one refused to see it.
Hi TC, I'm glad to hear that you are scheduled for surgery in April. I wish you the best. I still have headaches occasionally, but getting Botox injections every few months has helped a lot.
I appreciate you sharing your experience. I’ve personally been trying to recover using brain retraining and psychedelics for about 9 months and think I’m now starting to surpass the results I could have gotten from DBS.
My spine is undoubtedly a mess from dropped head syndrome but I am bothered by dystonia symptoms very little. I just did 2 solo backpacking trips and realized there’s absolutely nothing I can’t do physically even if it’s new and challenging at first.
Some things I am doing better than before my accident like playing guitar. I’ve also hit new personal records on both squats and deadlifts despite my spine issues. They are little reminders that the healing is real and very, very deep.
Seems like everything is coming back. At one time I thought getting this surgery was the only way to get my life back so I want to share some hope with everyone else. Glad to hear how much the surgery did for you. With the amount of success I’ve had recovering my body, I really do believe we will learn to treat dystonia without invasive procedures like this. I’m looking forward to a brighter future for us all! 😃
Can you tell more about your journey with the psychedelics? How bad were your symptoms and how are you now?
Excellent video, Jordan C Hanson! I will share my experience by tagging on to this. I am 17 months post-DBS surgery. I agree with your pain assessment; the worst part was where the wires connected, but I do not have the headaches, luckily. My DBS was for Cervical Dystonia and has improved my tremors 100% and my tilt about 99%. I am still playing with my programming settings a bit. My body seems want to go back to the pre-surgery posture and that causes some pain. My hand writing has tanked which was an immediate side effect. My insurance covered 100% of the surgery. My experience has been so very positive.
I so happy for you Cathy! I'm glad that you had a lot of success. I agree, my tremors are still there but it takes time. Hang in there!
Thanks I am getting DBS next month . I appreciate you doing this .
Thank you for sharing this part of your life publicly. There are so many people looking for real information that you present here. We are scheduled to meet with a neurosurgeon at the Children's Hopspital of Philadelphia soon for my 9 year old son. His issues are a little different, he has a genetic epilepsy that has been resistant to all meds. He has on average 100 seizures a day....however...is normal in every other way amazingly. Again...I am grateful for you and sharing this.
Thanks for the great video Jordan! I’m meeting with my neurologist this Friday and am going to pursue DBS for my Parkinson’s disease. Best wishes for your continued improvement!
How is it?
Thank you, very informative. I have Cervical Dystonia and have been told to consider DBS. I will closely follow awaiting your next video.
Thank you for watching! If you decide to go for it, I wish you well.
I have Cervical Dystonia also. I had DBS surgery January 25 and 27 two years ago. If I had it to do over again. I would. It has helped me 95%. Everybody that knows me said they can see a big difference. Now I can live a normal life. I use to call myself....Linda Blair. The one that played the exorcist. I no longer call myself that. :):):) I was in and out of the hospital on two days.
Thank you! I am extremely happy for you. This cideo however has made it clear to me that I am steadfast in my desire to avoid DBS. Also ypu description of spatial awareness or lack there of was spot on and I deal witht hat everyday. I will use this info to be less annoyed at myself when I drop things or cut myself. Thank you so much. This explained so much to me. I will be better able to explain to my doctors why I deny having DBS now that I understand the pros and cons
I'm glad that the information was helpful. DBS isn't for everyone and I respect your choice to not get it.
My name is David a Olsen. I’ve had Parkinson’s since 2017. I get tremors and I get lately. I’ve been rocking back-and-forth when standing in the mirror shaving and brushing my teeth in the morning especially when I’m resting medicine helps but a lot of times I forget or I’m getting side effects from the medicine Movement disorder neurologist suggesting DBS I’m bringing my children my kids to my next appointment so the doctor can explain it all to them. My question is yes it’ll help with the kid with the problems I have now, but will it prevent them from all new problems from getting worse, thank you for your video. It was very informative. Thank you and stay strong and don’t let the Parkinson’s control you control the Parkinson’s thanks again. Stay strong.
I will never try this again I tried it one time and after the second or third Zapp on my skull within about two minutes I got out of that building of got in my car and left it was the most painful experience I've ever had in my life and it did nothing for me but give me headache
Maybe I'm lucky. I had my programming done a month after my surgery, had no problem with wires in my neck, and have full mobility in my neck. My essential tremors were severe...couldn't do anything like using utensils, writing, drinking, etc. I would shake I too death or not be able to hold most anything for any length of time. I had both sides done. I had my right side done first. After a month, they did the programming. A
Boston Scientific representative and a neurologist did the programming together. It only took 2 appointments. I am very steady with this right side pouring from a pitcher, eating,brushing my teeth, etc. It has been life changing for me. I am to go for the programming of the left side in a few weeks. I am in my early 70's. I was out of it except when they woke me and checked leg, hand, and arm movements. Mine was done at Emory, in Atlanta, and they were wonderful. The surgeon was great and a good bedside manner. The neurologist and Boston Scientific people were very competent, and really knew how to fine tune things to get the desired results. Everyone during the whole process was very professional and kind.
Is the dbs still working for you? My kid has cp and dystonia. Seems like a treatment will work for a while but then not respond. She has a baclofen pump that worked at first now symptoms have returned,. Im very hesitant now to allow dbs.
My DBS is still working. In my case, I have had to get my stimulation adjusted a few times. Initially to target the dystonic symptoms. This was a slow progression with neurologist appointments every few months. Just like your daughter, the initial treatment was working well. However, I was pushing myself very hard with studying at university, working in a laboratory, and heavy weight training for around one year. Then I relapsed; my symptoms came back worse than before.
I have improved a lot since then. Working with my neurologist to get me back to a new baseline with stimulation, and finding a new balance of those activities, some scaling back.
Nothing is perfect. The DBS has helped me, and is still helping me. That being said, it is a decision that isn't easy to answer. I would ask that you to talk with her neurologist about what they think are the best options.
@@dystoniame thanks for the reply. Her neurologist is telling us she is a good candidate for the dbs. We need to get a second opinion.
Have you been able to reduce the amount of muscle relaxers and meds you take?
I just found your video, and I want to say I found it very helpful. I went through the surgery this past November, and I am still getting past some of the hurdles. The pain in my neck was the hardest, I would have to say. One question I have, though, is I have been having some major cognitive issues with my speech, where my brain knows what I want to say, but it doesn't come out. Did that happen to you? Any advice would be greatly appreciated.
Hi Shawn, Thank you for sharing your experience with DBS. I have had a speech impediment caused by the Generalized Dystonia, and my DBS has helped somewhat. It sounds like you are experiencing Aphasia. I would recommend talking to your neurologist about this during your next programming follow up appointment. I'm not licensed to practice medicine, but I would guess that your settings are not quite right.
That's what I was thinking as well. My neurologist is not the best if you get my drift. But the person who has been helping with the programming has been wonderful. I'm going to start seeing a new neurologist at the VA here in town on April 7th and that was one of the items I was was going to bring up, the aphasia. Hopefully they see it where the other one refused to see it.
@shawmdonegan1940 Bro have you got relief from speech difficulty through Dbs
I am scheduled for my DBS in April this year. Is the headaches every day and have they gone away.thank you.
Hi TC, I'm glad to hear that you are scheduled for surgery in April. I wish you the best. I still have headaches occasionally, but getting Botox injections every few months has helped a lot.
I prefer ultrasound treatment dbs doesnt work for everyone im from united kingdom..
Im so young for disease
Hi,do have PD? I do
Hello, I was only diagnosed with Generalized Dystonia.