I know how you feel having tremor and it is horrible. I'm going to have this done but I first need to have a port that is on my chest removed (the port was for Chemotherapy) once that is done and healed I will hopefully be able to have the dbs surgery. I am so looking forward to being able to write again it has been about 11 years of hand tremor and has started also in my right hand, I have had head and neck tremors for approximately 30 years. I wish you all the best.
I went through the exact same procedure. Everything you did, I went through from beginning to end, with the exception of a person to talk to about possible genetic traits. My DBS surgery also didn't take 9 hours for each electrode. I had the exact same two placement of leads and all three scars as well. Although it was 3 years ago when I had my surgery, I think the entire procedure was 8 hours or so. Don't know why yours took so much longer for pretty much the exact same DBS surgery. My DBS devices were made by the company Boston Scientific. My symptoms sounds like they were a lot more severe than yours. But, like you however, I did exhaust all other avenues before recommending to my neurologist, that I was interested in this procedure. My neurologist had pretty much already written me off as being able to do anything else for me. I guess he assumed I was an average "Joe", with no medical background and no means of probably paying for such expensive procedure, which is probably why he never considered mentioning this particular option for me. It wasn't until I asked him about this procedure, was when he realized my IQ was very much above the norm and the outstanding research I had done on this particular procedure. He became very intrigued, especially after learning about my medical and educational background. I think he initially noticed I was somewhat intelligent. But, he didn't foresaw the level of intelligence until our conversations got a lot more indebt and taking a second look at my my few initial recorded interviews. My symptoms diminished by 60 percent and with the help of prescribed medication, it added another 20 percent. I was getting better and better until I do no more improvement after about 9 months (I had plateaued). I do have some pretty bad days; especially after doing a strenuous activity. Can you please let me know are you doing any type of exercises to help with your condition? If so, what are they and do find them to be helpful?
Hello, Thank you for sharing your experience with me. My procedure took a bit longer than normal due to my neurosurgeon’s demanding of near perfection. I received my DBS through the university affiliated hospital and as such, my neurology team was composed of clinician/professors who are very meticulous. I’m glad to hear that your neurologist was willing to listen. This isn’t always the case. In regards to your question: I have a scalable exercise routine that I built with a physical therapist a few years ago. I will be uploading a few videos about this routine soon. Any small amount of movement/ exercises is better than nothing. That being said, you’ll want to target areas most affected. In my case, I work on balance exercises so that I can generally have less issues with my foot inversion. Also, I strength train with dumbbells, walk, and ride an exercise bike when I’m able. I typically try to strength train 3 days a week and do the other activities on the off days.
I survived a pretty bad tbi as a child and have had brain damage since because brain matter doesn't regenerate. I'm curious about the dbs because I definitely have been docile most of my life and have other problems with feeling understimulated.
Hi Andrew, I'm sorry to hear about your childhood TBI and subsequent brain damage. I haven't read any current literature on the efficacy of DBS on patients with a history of brain injury. I know that I was not excluded as a candidate, even though I had two concussions. I would check with your primary physician and neurologist to see what would be the best treatment.
Hello, I do not have any post op head sensations. I think you should reach out to your neurologist about this if you haven't already. If so, you could have them reach out/ refer you if they think this sensation is not implant related. It would also depend on how far post op you are. I did experience quite a bit of pain for a few months after both surgeries.
I know how you feel having tremor and it is horrible. I'm going to have this done but I first need to have a port that is on my chest removed (the port was for Chemotherapy) once that is done and healed I will hopefully be able to have the dbs surgery. I am so looking forward to being able to write again it has been about 11 years of hand tremor and has started also in my right hand, I have had head and neck tremors for approximately 30 years. I wish you all the best.
I went through the exact same procedure. Everything you did, I went through from beginning to end, with the exception of a person to talk to about possible genetic traits. My DBS surgery also didn't take 9 hours for each electrode. I had the exact same two placement of leads and all three scars as well. Although it was 3 years ago when I had my surgery, I think the entire procedure was 8 hours or so. Don't know why yours took so much longer for pretty much the exact same DBS surgery. My DBS devices were made by the company Boston Scientific. My symptoms sounds like they were a lot more severe than yours. But, like you however, I did exhaust all other avenues before recommending to my neurologist, that I was interested in this procedure. My neurologist had pretty much already written me off as being able to do anything else for me. I guess he assumed I was an average "Joe", with no medical background and no means of probably paying for such expensive procedure, which is probably why he never considered mentioning this particular option for me. It wasn't until I asked him about this procedure, was when he realized my IQ was very much above the norm and the outstanding research I had done on this particular procedure. He became very intrigued, especially after learning about my medical and educational background. I think he initially noticed I was somewhat intelligent. But, he didn't foresaw the level of intelligence until our conversations got a lot more indebt and taking a second look at my my few initial recorded interviews.
My symptoms diminished by 60 percent and with the help of prescribed medication, it added another 20 percent. I was getting better and better until I do no more improvement after about 9 months (I had plateaued). I do have some pretty bad days; especially after doing a strenuous activity.
Can you please let me know are you doing any type of exercises to help with your condition? If so, what are they and do find them to be helpful?
Hello,
Thank you for sharing your experience with me. My procedure took a bit longer than normal due to my neurosurgeon’s demanding of near perfection. I received my DBS through the university affiliated hospital and as such, my neurology team was composed of clinician/professors who are very meticulous.
I’m glad to hear that your neurologist was willing to listen. This isn’t always the case.
In regards to your question: I have a scalable exercise routine that I built with a physical therapist a few years ago. I will be uploading a few videos about this routine soon. Any small amount of movement/ exercises is better than nothing. That being said, you’ll want to target areas most affected. In my case, I work on balance exercises so that I can generally have less issues with my foot inversion. Also, I strength train with dumbbells, walk, and ride an exercise bike when I’m able. I typically try to strength train 3 days a week and do the other activities on the off days.
I survived a pretty bad tbi as a child and have had brain damage since because brain matter doesn't regenerate. I'm curious about the dbs because I definitely have been docile most of my life and have other problems with feeling understimulated.
Hi Andrew, I'm sorry to hear about your childhood TBI and subsequent brain damage. I haven't read any current literature on the efficacy of DBS on patients with a history of brain injury. I know that I was not excluded as a candidate, even though I had two concussions. I would check with your primary physician and neurologist to see what would be the best treatment.
Did you feel any post op head sensation? I Have GPI taget and I have this head sensation does not go away.
Hello, I do not have any post op head sensations. I think you should reach out to your neurologist about this if you haven't already. If so, you could have them reach out/ refer you if they think this sensation is not implant related. It would also depend on how far post op you are. I did experience quite a bit of pain for a few months after both surgeries.