I had DBS Surgery performed 5 1/2 years ago. Both of my hands and my head would shake from Essential Tremors. I was "Let Go" from three companies because my hands would shake so violently. I was taking 1500mg of Primidone a day to "try" to control the shaking. My wife had to feed me. I felt absolutely useless as a human being. I was informed of various side affects and frankly I really didn't care what they were. I wanted my life back. After my surgery I didn't shake at all. I would say the DBS got rid of 99% of my shaking. It took about 3 years before I noticed a slur in my speech and my balance is not as good as it was prior. BUT, I could care less. I would have the surgery again, in a heart beat. I had my battery/stimulator replaced about 4 months ago. Good for another 5 years or so.
I had DBS surgery in Sep 2017 and been having significant negative side effects including severe pain from dystonia and cognitive difficulties that I've not had before. Your video is the first video (or paper or website) where I've found an open discussion of DBS negatives. I'm sure there must be others, but there seems to be an unwillingness to talk about negative complications of DBS among its proponents other than the one's we do routinely receive from surgery staff, such as danger of infection, etc. So I very much appreciate the transparency found here. Thank you. I now know I'm not the only one who has suffered.
Why can't a doctor be as frank as this patient? Does he work for a living? He is very functional mentally and has a lot more common sense than a physician.
Being a TH-camr who mostly watches game play videos, interesting news, and other forms of entertainment, finding this video and many of your other ones was extremely informative. I am a young man, 20 this September, but I think that using TH-cam to help promote the spread of information that might not be readily available even from the doctors is wonderful, and the way you do it a very friendly yet educational way is beautiful, and I am happy to support it. :)
Yes! I am having this procedure done very soon. I have gone through the screening process and tried so many different medications. Your video, TH-cam videos from various hospitals, and blogs from people who kept a journal have been tremendously helpful. Paired with this new knowledge and my great team from the hospital, I am somewhat nervous, but definitely looking forward to the procedure and the improvements I will see.
Thank you so much for putting this on video; I have spent most of the day and night trying to gather information about DBS surgery, and just now stumbled upon a few videos from people who have had the surgery. You mentioned a person who commented that it 'allowed them to live life instead of watching it pass them by'; right now I feel as if it is passing me by, and I very much want to improve that situation. I have been on several different medications over the past eight years, and the tremor has become progressively worse. In the past year, it has gotten significantly worse, to the point that I don't want to eat in front of anyone, and that I am finding myself becoming dehydrated more often because it's a real difficulty getting a cup to my mouth without wearing most of the contents. Knowing what people's reactions to the surgery are, even the negative reactions, together with what I've been reading over the last 24 hours, has given me hope, and the courage to talk to my neurologist so that I can start having a life again. I can't thank you enough.
Husband is 1 week out of DBS surgery. Video very informative...many things not mentioned by our surgeon or team about postop issues. Thanks for sharing!! this was very helpful going forward!
Thanks Ian. I am 36 hours away from having DBS surgery myself and your video has given me an interesting different (but still very positive) insight into DBS from the patients perspective.
Thank you so much for this video. With this sort of feedback from numerous recipients of DBS it will help my Husband to really make an informed decision about his possible DBS surgery. I have really enjoyed watching all of your videos. Keep them coming
Ian, thanks so much for posting your video - it's helping me a lot while my husband is going through recovery from dbs surgery. He had the device activated three days ago and is now having balance and gait issues. We're waiting for our appointment with the neurosurgeon to see if there's any therapy that will help. Again, thanks for the video - I've watched it several times. You have an honest and straightforward manner that's very easy to watch!
I have had many and still have debilitating health problems and I KNOW what physical pain is for most of my life, now 68 yrs. old. I KNOW that QUALITY of life is what is important to me, MUCH, MUCH more important than how long I live. So Mr. Frizell, even knowing about the side effects ahead of time, I still would have done what you did and taken the surgery. Just ENJOY life now for as long as you can and God Bless you!
He has a muscle distonia. We have been with a lot of doctors and it is the first time we have heard about this. I appreciate you posted this information. It is very important for us.!
I have heard that it is very effective for dystonia - it certainly helps mine. If it were me, I would go for it - the surgery was not too gruelling, but I think awake surgery would be more demanding.
Liked and loved your video and my deep thanks to you for making a video which describes the side effects post DBS Surgery.Thanks a ton.My dad 60 year old man is undergoing DBS surgery in India.I hope you continue to give best suggestions.
My DBS for essential tremor (not Parkinson's Disease) has been completed and I've had the device turned on for about three weeks now. I'm just in the preliminary programming stage at this point (mostly working on tolerating the stimulation, not yet expecting much tremor relief), but the results are astonishing. I too would do it again in a heartbeat. Although not exactly on point for my situation, you Vlog has been incredibly helpful to me. You are generous to have dedicated so much time and energy to educating others about this technology. Thank you! You do a great job of presenting the facts while keeping bias out of your reporting. In watching videos about the surgery itself I notice that many of the patients are intubated for parts of the procedure. I was awake for the entire surgery (until the tunneling of the wires and the implantation of the generator--about four hours into the second surgery). This was a profound existential experience for me. To have someone in my brain, while I watched a video of my brain being invaded, not to mention expected to respond to instructions, report on my sensations, perform frustrating tasks (some deliberately frustrating to cause my tremor to manifest at its most severe), made me question the very nature of consciousness and thought itself. My surgical team was terrific, caring and compassionate, but I don't think they expected me to remember as much as I did. The drilling, the smoke, the pain of having the frame screwed to my skull (there's no pain or even sensation to having the leads threaded through the brain matter itself), was overwhelming and somewhat strangely euphoric. I did suffer an unexpected complication at the end of the second surgery. As they were closing up my head and preparing to start the tunneling of the wires and placement of the generator, I had a tonic/clonic seizure--a grande mal epilectic seizure. I remember them tying me down as I tried to tear the frame from my head. Then I mercifully lost consciousness and awoke in the recovery room. I don't appear to have suffered any adverse complications from the seizure and my recovery was speedy and unremarkable. I am still on antiseizure medication, however, and cannot drive until I am weaned off of those meds--a few more weeks. I was very lucky with the timing of this seizure; my brain had been closed, but I think the seizure was from the stress of being conscious during so much of the procedure. And maybe the psychological impact of the entire event. They needed me to be as alert as possible and not sedated out of my tremor. I must say again here: I would do it again in a heartbeat. I love my neurosurgeon and his team and Kaiser Permanente where I had the surgery for about $15.00. The tremor had so thoroughly decimated my confidence that I'm only now beginning to comprehend the magnitude of my disability. Thanks again for your Vlog.
There was a nightmarish quality to aspects of the second surgery, but the anesthesia (they called it "light sedation") worked by giving me distance from what was actually happening. Oddly enough, it's scarier to read about my experiences than it was to actually experience it. As time goes on, my memory recedes. I'm only now beginning to realize how much of my life was lost due to the tremor. I was too self-conscious to eat with people so I didn't go to restaurants. I had always gotten a lot of satisfaction from performing well at work, but all that was lost in recent years. I work as a legal secretary and as I felt my confidence and credibility disappearing, I felt shame and began to think I was going to have to quit working. I loved my job but it was killing me to see people begin to pity me and treat me like an invalid. When you appear to be trembling, people think of you as a nervous wreck. I had to keep reassuring coworkers that I wasn't really nervous! The more defensive I became, the more pathetic I looked. All resolved in an instant. I still have a tremor (still working with the neurologist on fine tuning the electrics), but it's nothing like it used to be. I was blown away the other day when I had to fill out some forms and saw my old handwriting reappear on the page. I had given up on writing because no one, not even me, could read it. The list of benefits goes on and on. it's no wonder I'm no longer troubled by a difficult surgical experience.
I was lucky in that my surgery was performed under general anaesthetic,, so I never had to contend with the thought of being awake. It is an amazing feeling to have your life back, isn't it?
Thankyou for that. I'm going to Kaiser Permanente L.A. to see Dr. Hickey on the 4th of April 2019, I wonder if he was the surgeon that took care of you. I'm nervous and trying to do my homework before I see him. I'm glad all worked out for you.
Thank you for posting this video. I am a 47 year old man and essential tremors seem to run in my family. I sometimes have to hold a drink with two hands to be able to drink it, sometimes I think the anxiety of hot drinks or ones which are very near the brim make my tremors worse. I've had many incidents in my life where this has been an embarrassment to me. One time when out for a buffet with a group of coworkers many years ago I felt my tremors were acting up. I had to drink with two hands. One of my especially mean coworkers called out to the table "Look at him, he has to drink with two hands like a little kid". I'm paraphrasing, but not by much. I recall times growing up when my tremors were horrible, much worse than they are now that I'm 47. I think I'm improved from my youth, but I'm not like people who don't have essential tremors. A couple months ago I started working in a fast food shawarma restaurant, usually people buy drinks from the fridge, but once in a while they ask for a cup of tap water. This has been my bane for a long time. As a 47 year old man though I've had lots of embarrassing experiences in my life, so just try to do my best in fetching a cup of water or several for someone. I try to relax and be calm. A week or so ago I got a couple cups of tap water for a customer. He asked about my shaking and I explained that it was Essential Tremors (I think, I'm self diagnosed). What I didn't know is that my customer is a brain surgeon who does the surgery for deep brain stimulation. He explained that the surgery is covered here in Canada. He gave me the name of a neurological reference, etc and briefly explained the procedure. I feel that I'm on the edge of whether I need it or not though. When I was younger I'd had said "heck yes", but not I'm on the fence. Some days are worse than others still. I have problems at work that make me feel that some of my coworkers look at me like I'm a spaz. I still fear over gripping things like paper cups. Maybe I've developed coping mechanisms that make it less severe? I still feel ashamed when I have to fight to be in control of my hands. Drilling holes into my skull and putting wires into me seems kind of severe though. Hearing that it could give me balance problems and potentially other problems is worrisome to me. I haven't yet looked into this, but typing Deep Brain Stimulation into Google shows that it's used for depression as well. As someone who has had a lifelong battle with depression I wonder if the two are connected? Maybe no, but our brains are the seat of our consciousness as well as controlling our body. I'm debating on whether to call my family doctor and get a neurological referral. A part of me says that "it's a waste of time" and the other part of me is hopeful that it could lead to an improved quality of life. Maybe someone else has a similar experience?
Hi Jonathon DBS sounds a little scary, I agree, but it can also be life changing. I know all about feeling self conscious over having a tremor, believe me! Stress definitely makes it significantly worse. Before they will give you DBS you have to pass through a number of tests to ensure that you are a suitable candidate for the surgery, so go ahead and get the referral - if you are offered DBS you can still decline it, but at least you will know that you have the option. The chap who runs the Yahoo group "DBSsurgery" (Roger Morris) had DBS for ET so it could be worth your while having a chat to him. Cheers, Ian
I had DBS surgery 2.5 years ago for Dystonia which had affected my neck, left arm and voice. The result has been miraculous with only a very small tremor discernible in my left hand. After 50 years a fantastic relief!!
I am currently in the process of having DBS for essential tremor (not Parkinson's). I had the first surgery on 5/30/17 and will have the second surgery on 6/13/17. I'm looking forward to the results. I have to say, the experience of the surgery itself was pretty intense, but it will all be worth it if it only fixes part of my tremor. Wish me luck!
Thank you for sharing your thoughts and knowledge about Dbs. I have had one electrode implemented and will be getting the second in two weeks and then the controller 4 weeks later. Really looking forward to a better life. So far only one side effects is a headache just about every day when I wake up.
I had DBS for cluster headaches and after 2.5 yrs of ongoing programming I didnt get any relief from pain. So we shut it off. I was one who had an infection and had to have the surgery to remove it and re install it. I have had numerous side effects, many of which you mention and still deal with these side effects despite the fact its off. thanks for the video.
Good to see you Ian, glad you are living a good life after your surgery and informing others that may need help and advice is very caring :) Say hello to your wife for me and tell her to keep up the good work looking after you. It is a full time occupation having a husband..lol but well worth it. God bless you two
thanks for that....as i live in australia i have to travel to adelaide from where i live in nsw which is a bit over 500km away....been on the waiting list for nearly 3 years now.....the hospital where im having it gets funding for 6 dbs surgerys each calender year....be glad once its over and done with so i can concentrate on getting back to doing everyday things that we do
I think I would have gone mad if I'd been waiting for 3 years. Mine was about 12 months from first referral to having the operation. The surgery is a breeze, recovery is rapid, getting the programming right takes time! You will have your life back soon!
im hoping things will be better after having it done...makes it tricky at times chasing after my 5 year old son lol the waiting time here i cant help at all.....the programming part may take a few weeks ive been told so i wont be coming home for a month or so
I has a DBS surgery a month ago, And i feel great, btw I didn't have nothing that you say, but I believe that this elders could have that you Said, because I have 20 years old, but this surgery changed my life
I had end a yr ago on both side. And I do experience things you have mentioned. Memory loss. Forgetfulness. Blurry vision at times. Loss of my balance and pain in my chest where generator is major depression and I am not able to work the job I used to do. So many side effects but I do not regret surgery because I barely shake and it feels good not to be embarrassed in public
Hello Ian, Again thank for your videos. They are most helpful. I do have some questions for you though. What manufacture of DBS did you go with. May be on the NHS you don’t have options. Also I think you had a bilateral op done. As apposed to just one side. I have read that there are less speech and balance issues when only one probe ( side ) is performed. Cheers,
Hi Brian I didn't really have a choice - I asked which kit they used and they told me it was medtronic. It is probable that there would be less speech and balance issues if only one side had been done, but my symptoms were becoming more and more bi-lateral so they made the decision to do both sides at once. Cheers, Ian
Thank you for the informations! My mother did the surgery 15 days ago and we are watching her to see if she manifests some side effects. Some of the effects you mentioned were not informed by the doctor.
nicely done Ian.. best of luck...I'm curious how many responded to your query? I just had first part of DBS, electrodes placed in the brain... side affect which surprised me is sciatic left side nerve occurred 2 days post op.... numbness from butt to toes on left leg when trying to sit for more than 30 seconds... Although the day after op, i was / am walking 3-4miles (apprx. 4.7 - 5km) per day. Cheers!!
I guess a neurosurgical procedure like DBS can essentially affect any cognitive, psychological and physiological domain, depending on which neural networks will be affected. Clinicians and surgeons should admit and address this clearly and openly.
I had DBS 17 months ago at Vanderbilt University Hospital, Nashville, Tennessee. Side effects that I have encountered are Speech impediment, difficulty writing with a pen/pencil, anxiety, depression, some balance problems, apathy, some thoughts of suicide. HOWEVER, with the help of God, I am better and am improving daily. I ride a bicycle 40+ mile a week....would i do it again? I don't know....
I had my DBS implants in 2005..i was 35yrs old and had severe Myoclonic Dystonia, its given me my life back and i haven't been this good since before i was 16/17yrs old when this condition started to affect me. The only question i have is how high can the frequency go from the stimulator to the electrodes in the brain...as my stimulator is turned up to a high voltage already (and steadily increasing each year) as my condition steadily deteriorates (although not visible)..i shouldn't worry as my life is great at this time but its always in the back of my mind...any reply I'd be deeply grateful and many thanks
Hi Stefan I'm afraid that I don't know the answer to your question - it's one that I keep asking myself, too. My settings are just under 3v each side at the moment, and I know they can go a lot higher, but not sure how long it will be before that is necessary. Depends upon speed of progression, I guess. Maybe also an individual thing as well - what works for me may not work for you, and vice versa... Cheers, Ian
Thankyou very much for your reply Ian Technology is improving all the time anyway my friend...so hopefully when the time comes...they'll have resolved our query 😁 i feel the luckiest guy around having the opportunity to have had these implants and all the staff and doctors at the National Hospital at Queens Square London have been nothing but absolutely magnificent in all the years I've been attending.. Once again Ian thankyou and you take care my friend 😎😁
Hi Stefan, you condition intrigues me, I also have Myoclonus, I was diagnosed with it about 2 years ago, and I recently turned 35, and over the last 2 years my condition has progressively gotten worse, for example a few nights ago I was playing cards with my family, during the card game my hands suddenly started jerking, I had to put my cards down and hold on to the table, even then I was unable to stop the jerking of my hands, and I also lost the ability to talk, this lasted for about 10 minutes... I thought nothing of it until I came across a post on imgur that had a video link about DBS, and what the man described in the video was exactly what I had experienced... except he had Parkinsons, not Myoclonus, and it raised the question... did I have Parkinsons? After searching up videos on people who have Myoclonus, every single video I watched had brief jerkings of the hand that lasted no more than 10 seconds, and sometimes it was just a single jerk of the hand, nothing akin to what I experience. I say this not to belittle the people who have Myoclonus that made these videos, but to raise the question... did my Neurologist misdiagnose me with Myoclonus when in actual fact I might have Parkinsons? Now I am asking you this because I want to know what your experience is with severe Myoclonus Dystonia? Did you experience anything like what I have described? Do you know any Myoclonus patients that have anything like me? I thank you for taking the time to read this and look forward to hearing from you.
My husband had DBS surgery 6 weeks ago. His side effects have been like a living nightmare. He’s experienced cognitive impairment, paranoia, combative and violent behavior, speech and swallowing difficulties, urinary incontinence followed by urinary retention. He developed aspiration pneumonia. He had to be in restraints for weeks. Now he’s still psychotic, on a feeding tube and catheter, and is being sent to a skilled nursing facility. I don’t know if he’ll ever recover.
Thank you for this video. I have multiple sclerosis , But my neurologist thinks that I may have Parkinson's as well. I have terrible tremors in every limb, Mostly in my left arm and right leg. Funny to think how I was left-handed My Neurologist mentioned that DBS might be another option since so far none of the MS medications or a baclofen have worked I'm only 29, but I figure that the benefits of such an invasive surgery, might out weigh the risks
Hi Jimmy DBS has been a miracle for me, as has cannabis/CBD. If you haven't tried cannabis or CBD it might be an option for you. None of the regular prescription drugs were an option for me! Cheers, Ian
Ian Frizell yeah I'm going to be starting my fourth med in less than three years, of which 9 months were spent "pleading my case " to insurance on"Why" I need them. I'm in the middle of trying CBD, but as far as the alcohol drops sub lingually, I have not been consistent in my smoking to be having judgment. But so far since the beginning of January it has not worked out for me as far as the drops winch I have been consistent with
You need to be sure that you have got a good CBD product. If you see my CBD reviews you will see that sometimes the most expensive and best known product isn't as good as a cheaper one!
I have most or all of those side effects of DBS w/o ever needing DBS. I've had gait trouble since I was a kid. I have no tremor but have trouble signing my name at times. I'm not even a hypochondriac. Don't have any addictions but I am freaking weird.
Best wishes for him. Sometimes it takes several months after the batteries are connected to find positive results. I called Medtronic many times, disappointed with the lack of results They said some people get immediate positive results and some take the better part of a year to get maximized results. Everything is a compromise when it comes to settings. Best settings for walking might compromise speech. 5 years later, I still think it compares to having artificial legs. Nothing is perfect, it takes getting accustomed to, and the net result is you are reasonably mobile but still have to put up with irritating conditions. DBS buys years of better quality of life but it is far from perfect.
uh, what if you have to get on an airplane to go get the DBs adjusted and you are suicidal? Confused and driving a car? Manic and in work in healthcare? Can you just adjust it over the phone with the neurologist? Uh, what if you lose your balance and break your hip? I guess you have to decide about risk vs benefits...but if the doctor glosses over the risks how are you supposed to do that?
Thank you for your time and your efforts to educate others about your condition, i find it very interesting and informative. To what extent did you recover your mobility after the medical procedures? Do you require help sometimes or are you able to live well independently?
I'm much more mobile since my operation. There are plenty of things that I struggle with, but the only thing that I actually cannot do for myself is to scrub my back - thankfully I have a wonderful wife who does that for me!
I'm glad to hear that even though you are having issues with certain movements you can still perform most of your everyday tasks, it must have been a relief to regain that mobility back. Thanks for awnsering! and cheers to your wife for helping you through this!
Hi my son has this opportunity to have this surgery. But he is 11 years old. And I would like to know your opinión . I am from México city. Thank You .
Your son has a lot of life ahead of him. This surgery was life changing for me, but everyone has to make their own decisions. What is wrong with your son, and how certain are the neurologists that DBS will be effective for him?
Not exactly a survey, but I asked the question of around 4,000 DBS patients - "were there any effects or side effects that you hadn't been told about or which surprised you".
@@ianfrizell hi sir,am from india.my father is in at Parkinson's plus stage and also have diabetic since 30yrs,ITB since 1yr and most importantly 76yrs old.so please suggest me,shall I go for DBS. Thanks in advance
My dad has Parkinson's and I have bipolar. I smoke cannabis to help with anxiety and it works well. What I want to know Ian is I see you vape, do you eat the CBD product or only vape? .
Very clear And exaustive. I 've gotPD since2003 . I Was 54 And it Was a shock.i' ve got a freezing form, not many tremors And my doctor Has propose d DBS to me ...l' M vey doubtful And afra id. I dont know what to do since my form Is A light one.thank you for The video
Thank you so much. I’m so afraid. All the side effects seem so large to me. I do suffer from depression. My seizures are under control the last time. I had a seizure was 20 years ago by the medication I take. I pray that I can still go to my grandson‘s graduation, which is in May of 27. But I’ll be leaving on the 20th. My surgery date is on 9 April. I figured the halo. I seen the needle in the syringe and a grown man crying. It worries me that on the first step seems like a pig mountain to climb over. I know this is an old video but I pray that someone out there can help with the fear I take on the halo. Thank you and God bless.
I had DBS surgery this year on both the left & right side of my brain for ET. I have problems with slurred speech as well as balance & gait control. these conditions get better or worst depending on the control settings. getting maximum control over my tremors increases the negative symptoms. having said that I would do the surgery over again in a heartbeat. before I really wished my life were over & now I feel alive again.
My brother has it. It is really getting to him. He called me today we dont speak much and live far away from one another. He wants the DBS. He cried on the phone. Tearing me apart. He visits the doctor tomm again and he will decide if he can get that operation. I fear if he says no my brother I am not sure what he will do.
He lives in New York I am in Arizona hard to visit him. He said it is completely up to the doctor for him to get it. DBS, Is this true? If the Doctor says no can he go elsewhere ??
only about 10% of Parkinson's patients are considered suitable. You have to pass through a number of tests here before you will be considered for it. If it's a No, then it is doubtful that another doctor would say Yes...
In February 2018, I had DBS surgery to treat Intentional Essential Tremors in Rochester New York at University of Rochester - Strong Memorial Hospital by Dr. A. Wensel. Excellent results! I have no hesitation to recommend having it done. But, the neuro team determines whether the patient's condition will respond well to the treatment and if physically as well as mentally the patient is up to the operation. I can imagine the emotional letdown if you're not able to get the go ahead but second opinions are acceptable and encouraged. If you're turned down, get all of the reasons documented. BTW, hopefully I'll have the operation again this summer for my left hand. I can hardly wait!
CowboyArizona i had it in December. Find a really good doctor with lots of experience . I found it made a substantial positive difference in my Parkinson's.
I had this done. Side effects? I have a slight speech issue but who cares. wish I could go back and curse the people who ridiculed me, but then again I am a stronger person. Would I do it again? Definitely.
I hope mine don't come back, although I appreciate that there will be a point at which Parkinson's progression will exceed the ability of DBS to suppress symptoms...
I have had my DBS implant for approximately 3 years and although I would do it again today, I wish I had been told I would have difficulty walking and swallowing. I fell three months after my surgery and broke my arm; I fell again and broke it again a few months later. Although I am profoundly grateful for the life-restoring benefits of DBS, patients need to be more informed about these severe side-effects to enable them to look out for and cope with the walking and swallowing issues. Thanks again for your informative videos.
My brother is not able to walk because of tremors, doctor suggested this DBS operations and he is saying 50/50 chance.. in India.. can any one help to get good information please
we have opted for a DBS surgery for my friend of 42 years old Male yesterday at Nimhans Hospital, Bangalore. He was infected with Parkinson's disease for last 8 years; life supported with medicine on every 2 hrs. was not able to speak / walk. After the surgery the result surprised us. Today when we visited at his recovery room, he is a non stop talkative !! and able to walk. further device tuning process will be there in next week. hope that process will give more accurate responses from/to his body. Expense INR10L+
Sad to see how mainstream medicine got you. I love you and the reason for your desease is not genetics nor your dna. It has to do with heavy metals and other stuff as well deficiencies (stuff our cells need) within your body but those people are not interested in cures (atleast not the larger industry they work for) I hope you find your way, much love The lord loves you
I had DBS Surgery performed 5 1/2 years ago. Both of my hands and my head would shake from Essential Tremors. I was "Let Go" from three companies because my hands would shake so violently. I was taking 1500mg of Primidone a day to "try" to control the shaking. My wife had to feed me. I felt absolutely useless as a human being. I was informed of various side affects and frankly I really didn't care what they were. I wanted my life back. After my surgery I didn't shake at all. I would say the DBS got rid of 99% of my shaking. It took about 3 years before I noticed a slur in my speech and my balance is not as good as it was prior. BUT, I could care less. I would have the surgery again, in a heart beat. I had my battery/stimulator replaced about 4 months ago. Good for another 5 years or so.
I had DBS surgery in Sep 2017 and been having significant negative side effects including severe pain from dystonia and cognitive difficulties that I've not had before. Your video is the first video (or paper or website) where I've found an open discussion of DBS negatives. I'm sure there must be others, but there seems to be an unwillingness to talk about negative complications of DBS among its proponents other than the one's we do routinely receive from surgery staff, such as danger of infection, etc. So I very much appreciate the transparency found here. Thank you. I now know I'm not the only one who has suffered.
Why can't a doctor be as frank as this patient? Does he work for a living? He is very functional mentally and has a lot more common sense than a physician.
Being a TH-camr who mostly watches game play videos, interesting news, and other forms of entertainment, finding this video and many of your other ones was extremely informative. I am a young man, 20 this September, but I think that using TH-cam to help promote the spread of information that might not be readily available even from the doctors is wonderful, and the way you do it a very friendly yet educational way is beautiful, and I am happy to support it. :)
Thanks for your comment, and your support!
Cheers,
Ian
Yes! I am having this procedure done very soon. I have gone through the screening process and tried so many different medications. Your video, TH-cam videos from various hospitals, and blogs from people who kept a journal have been tremendously helpful. Paired with this new knowledge and my great team from the hospital, I am somewhat nervous, but definitely looking forward to the procedure and the improvements I will see.
Thank you for posting this Ian. It is so good to hear truth before making the decision. Greatly appreciated.
I never comment on videos but just wanted to congratulate you on such a balanced informative video on DBS.
Thank you so much for putting this on video; I have spent most of the day and night trying to gather information about DBS surgery, and just now stumbled upon a few videos from people who have had the surgery. You mentioned a person who commented that it 'allowed them to live life instead of watching it pass them by'; right now I feel as if it is passing me by, and I very much want to improve that situation. I have been on several different medications over the past eight years, and the tremor has become progressively worse. In the past year, it has gotten significantly worse, to the point that I don't want to eat in front of anyone, and that I am finding myself becoming dehydrated more often because it's a real difficulty getting a cup to my mouth without wearing most of the contents. Knowing what people's reactions to the surgery are, even the negative reactions, together with what I've been reading over the last 24 hours, has given me hope, and the courage to talk to my neurologist so that I can start having a life again. I can't thank you enough.
For all the downsides to this surgery, the upsides make it all worthwhile! I wish you well.
Cheers,
Ian
Liked and loved your video! Keep up the good work 😊
You are a such an inspiration and a landmark in this vast and inhospitable subject.
Husband is 1 week out of DBS surgery. Video very informative...many things not mentioned by our surgeon or team about postop issues. Thanks for sharing!! this was very helpful going forward!
Excellent video. Honest, clear, direct. Doctors should look at it too.
Excellent video. Thank you, Ian. This is a wonderful, informative presentation.
Thanks Ian. I am 36 hours away from having DBS surgery myself and your video has given me an interesting different (but still very positive) insight into DBS from the patients perspective.
Hi David
Wishing you the very best possible outcome. It has changed my life.
Cheers,
Ian
Thanks Ian. I am contemplating DBS for ET and your video has given me more food for thought. The side effects are worrying.
Great honest and instructive information. Thanks
Thank you for your continued and inspiring efforts. Bless and much love to you
Thank you so much for this video. With this sort of feedback from numerous recipients of DBS it will help my Husband to really make an informed decision about his possible DBS surgery. I have really enjoyed watching all of your videos. Keep them coming
Thank you!
Ian, thanks so much for posting your video - it's helping me a lot while my husband is going through recovery from dbs surgery. He had the device activated three days ago and is now having balance and gait issues. We're waiting for our appointment with the neurosurgeon to see if there's any therapy that will help. Again, thanks for the video - I've watched it several times. You have an honest and straightforward manner that's very easy to watch!
Hi Jeanne
I'm so glad it is helping you. You may also find some value in my DBS recovery blog - dbsacompletenobrainer.co.uk.
Cheers,
Ian
Thank you so much for sharing all those informations with us!
I have had many and still have debilitating health problems and I KNOW what physical pain is for most of my life, now 68 yrs. old. I KNOW that QUALITY of life is what is important to me, MUCH, MUCH more important than how long I live. So Mr. Frizell, even knowing about the side effects ahead of time, I still would have done what you did and taken the surgery. Just ENJOY life now for as long as you can and God Bless you!
Excellent review from a patients perspective, helps me to advise patients and refer them to this video
Thank you!
Thank you,sir,for sharing this instructive video with us!
He has a muscle distonia. We have been with a lot of doctors and it is the first time we have heard about this.
I appreciate you posted this information. It is very important for us.!
I have heard that it is very effective for dystonia - it certainly helps mine. If it were me, I would go for it - the surgery was not too gruelling, but I think awake surgery would be more demanding.
Very valuable information. Thanks for sharing!
Liked and loved your video and my deep thanks to you for making a video which describes the side effects post DBS Surgery.Thanks a ton.My dad 60 year old man is undergoing DBS surgery in India.I hope you continue to give best suggestions.
Thank you for your comment - I hope your dad's surgery is a great success!
Cheers,
Ian
My DBS for essential tremor (not Parkinson's Disease) has been completed and I've had the device turned on for about three weeks now. I'm just in the preliminary programming stage at this point (mostly working on tolerating the stimulation, not yet expecting much tremor relief), but the results are astonishing. I too would do it again in a heartbeat. Although not exactly on point for my situation, you Vlog has been incredibly helpful to me. You are generous to have dedicated so much time and energy to educating others about this technology. Thank you! You do a great job of presenting the facts while keeping bias out of your reporting.
In watching videos about the surgery itself I notice that many of the patients are intubated for parts of the procedure. I was awake for the entire surgery (until the tunneling of the wires and the implantation of the generator--about four hours into the second surgery). This was a profound existential experience for me. To have someone in my brain, while I watched a video of my brain being invaded, not to mention expected to respond to instructions, report on my sensations, perform frustrating tasks (some deliberately frustrating to cause my tremor to manifest at its most severe), made me question the very nature of consciousness and thought itself. My surgical team was terrific, caring and compassionate, but I don't think they expected me to remember as much as I did. The drilling, the smoke, the pain of having the frame screwed to my skull (there's no pain or even sensation to having the leads threaded through the brain matter itself), was overwhelming and somewhat strangely euphoric. I did suffer an unexpected complication at the end of the second surgery. As they were closing up my head and preparing to start the tunneling of the wires and placement of the generator, I had a tonic/clonic seizure--a grande mal epilectic seizure. I remember them tying me down as I tried to tear the frame from my head. Then I mercifully lost consciousness and awoke in the recovery room. I don't appear to have suffered any adverse complications from the seizure and my recovery was speedy and unremarkable. I am still on antiseizure medication, however, and cannot drive until I am weaned off of those meds--a few more weeks. I was very lucky with the timing of this seizure; my brain had been closed, but I think the seizure was from the stress of being conscious during so much of the procedure. And maybe the psychological impact of the entire event. They needed me to be as alert as possible and not sedated out of my tremor.
I must say again here: I would do it again in a heartbeat. I love my neurosurgeon and his team and Kaiser Permanente where I had the surgery for about $15.00. The tremor had so thoroughly decimated my confidence that I'm only now beginning to comprehend the magnitude of my disability.
Thanks again for your Vlog.
Hi Greg
Thanks for your kind comments. Sounds like you went through the mill - so pleased that it is worth it all at the end of the day.
Cheers,
Ian
There was a nightmarish quality to aspects of the second surgery, but the anesthesia (they called it "light sedation") worked by giving me distance from what was actually happening. Oddly enough, it's scarier to read about my experiences than it was to actually experience it. As time goes on, my memory recedes. I'm only now beginning to realize how much of my life was lost due to the tremor. I was too self-conscious to eat with people so I didn't go to restaurants. I had always gotten a lot of satisfaction from performing well at work, but all that was lost in recent years. I work as a legal secretary and as I felt my confidence and credibility disappearing, I felt shame and began to think I was going to have to quit working. I loved my job but it was killing me to see people begin to pity me and treat me like an invalid. When you appear to be trembling, people think of you as a nervous wreck. I had to keep reassuring coworkers that I wasn't really nervous! The more defensive I became, the more pathetic I looked. All resolved in an instant. I still have a tremor (still working with the neurologist on fine tuning the electrics), but it's nothing like it used to be. I was blown away the other day when I had to fill out some forms and saw my old handwriting reappear on the page. I had given up on writing because no one, not even me, could read it. The list of benefits goes on and on. it's no wonder I'm no longer troubled by a difficult surgical experience.
I was lucky in that my surgery was performed under general anaesthetic,, so I never had to contend with the thought of being awake. It is an amazing feeling to have your life back, isn't it?
Thankyou for that. I'm going to Kaiser Permanente L.A. to see Dr. Hickey on the 4th of April 2019, I wonder if he was the surgeon that took care of you. I'm nervous and trying to do my homework before I see him. I'm glad all worked out for you.
Thank you for posting this video. I am a 47 year old man and essential tremors seem to run in my family. I sometimes have to hold a drink with two hands to be able to drink it, sometimes I think the anxiety of hot drinks or ones which are very near the brim make my tremors worse.
I've had many incidents in my life where this has been an embarrassment to me. One time when out for a buffet with a group of coworkers many years ago I felt my tremors were acting up. I had to drink with two hands. One of my especially mean coworkers called out to the table "Look at him, he has to drink with two hands like a little kid". I'm paraphrasing, but not by much.
I recall times growing up when my tremors were horrible, much worse than they are now that I'm 47. I think I'm improved from my youth, but I'm not like people who don't have essential tremors. A couple months ago I started working in a fast food shawarma restaurant, usually people buy drinks from the fridge, but once in a while they ask for a cup of tap water. This has been my bane for a long time. As a 47 year old man though I've had lots of embarrassing experiences in my life, so just try to do my best in fetching a cup of water or several for someone. I try to relax and be calm.
A week or so ago I got a couple cups of tap water for a customer. He asked about my shaking and I explained that it was Essential Tremors (I think, I'm self diagnosed). What I didn't know is that my customer is a brain surgeon who does the surgery for deep brain stimulation. He explained that the surgery is covered here in Canada. He gave me the name of a neurological reference, etc and briefly explained the procedure.
I feel that I'm on the edge of whether I need it or not though. When I was younger I'd had said "heck yes", but not I'm on the fence.
Some days are worse than others still. I have problems at work that make me feel that some of my coworkers look at me like I'm a spaz. I still fear over gripping things like paper cups. Maybe I've developed coping mechanisms that make it less severe? I still feel ashamed when I have to fight to be in control of my hands.
Drilling holes into my skull and putting wires into me seems kind of severe though. Hearing that it could give me balance problems and potentially other problems is worrisome to me.
I haven't yet looked into this, but typing Deep Brain Stimulation into Google shows that it's used for depression as well. As someone who has had a lifelong battle with depression I wonder if the two are connected? Maybe no, but our brains are the seat of our consciousness as well as controlling our body.
I'm debating on whether to call my family doctor and get a neurological referral. A part of me says that "it's a waste of time" and the other part of me is hopeful that it could lead to an improved quality of life. Maybe someone else has a similar experience?
Hi Jonathon
DBS sounds a little scary, I agree, but it can also be life changing. I know all about feeling self conscious over having a tremor, believe me! Stress definitely makes it significantly worse. Before they will give you DBS you have to pass through a number of tests to ensure that you are a suitable candidate for the surgery, so go ahead and get the referral - if you are offered DBS you can still decline it, but at least you will know that you have the option. The chap who runs the Yahoo group "DBSsurgery" (Roger Morris) had DBS for ET so it could be worth your while having a chat to him.
Cheers,
Ian
thanks for sharing your experience. i just started the process at Rush in Chicago.
I had DBS surgery 2.5 years ago for Dystonia which had affected my neck, left arm and voice. The result has been miraculous with only a very small tremor discernible in my left hand. After 50 years a fantastic relief!!
Thank you for sharing the truth!
Thankyou this was so informative for me .
I am currently in the process of having DBS for essential tremor (not Parkinson's). I had the first surgery on 5/30/17 and will have the second surgery on 6/13/17. I'm looking forward to the results. I have to say, the experience of the surgery itself was pretty intense, but it will all be worth it if it only fixes part of my tremor. Wish me luck!
I wish you all the luck in the world!
Thank you. Tomorrow's the day.
Thank you for informing us .
Yes, the surgeons tend to "gloss" over the side effects. So typical.
Thank you for sharing your thoughts and knowledge about Dbs. I have had one electrode implemented and will be getting the second in two weeks and then the controller 4 weeks later. Really looking forward to a better life. So far only one side effects is a headache just about every day when I wake up.
Hi Guy
Best wishes for your other surgeries, and I hope your headaches are only temporary!
Cheers,
Ian
I had DBS for cluster headaches and after 2.5 yrs of ongoing programming I didnt get any relief from pain. So we shut it off. I was one who had an infection and had to have the surgery to remove it and re install it. I have had numerous side effects, many of which you mention and still deal with these side effects despite the fact its off. thanks for the video.
So sorry to hear that it didn't work out for you....
StrnFn9099 allergic
good job, ian! :)
Good to see you Ian, glad you are living a good life after your surgery and informing others that may need help and advice is very caring :) Say hello to your wife for me and tell her to keep up the good work looking after you. It is a full time occupation having a husband..lol but well worth it. God bless you two
Hello 👋
i have found your videos very useful as im having dbs in 2 weeks now and hopefully all goes well and all the best for you
Good luck with your surgery - where are you having it?
thanks for that....as i live in australia i have to travel to adelaide from where i live in nsw which is a bit over 500km away....been on the waiting list for nearly 3 years now.....the hospital where im having it gets funding for 6 dbs surgerys each calender year....be glad once its over and done with so i can concentrate on getting back to doing everyday things that we do
I think I would have gone mad if I'd been waiting for 3 years. Mine was about 12 months from first referral to having the operation. The surgery is a breeze, recovery is rapid, getting the programming right takes time! You will have your life back soon!
im hoping things will be better after having it done...makes it tricky at times chasing after my 5 year old son lol the waiting time here i cant help at all.....the programming part may take a few weeks ive been told so i wont be coming home for a month or so
Have you read my DBS recovery blog? www.dbsacompletenobrainer.co.uk
Well done Ian. Well done. Yeah, I like it.
Thank you for a very informative video
Thank you Ian Frizell
I has a DBS surgery a month ago, And i feel great, btw I didn't have nothing that you say, but I believe that this elders could have that you Said, because I have 20 years old, but this surgery changed my life
I had end a yr ago on both side. And I do experience things you have mentioned. Memory loss. Forgetfulness. Blurry vision at times. Loss of my balance and pain in my chest where generator is major depression and I am not able to work the job I used to do. So many side effects but I do not regret surgery because I barely shake and it feels good not to be embarrassed in public
In spite of all the negatives, it's worthwhile!
Let's get this man some cash money for cbds baby! I watcha da commercials.
Hello Ian,
Again thank for your videos.
They are most helpful.
I do have some questions for you though.
What manufacture of DBS did you go with.
May be on the NHS you don’t have options.
Also I think you had a bilateral op done. As
apposed to just one side. I have read that there
are less speech and balance issues when only
one probe ( side ) is performed.
Cheers,
Hi Brian
I didn't really have a choice - I asked which kit they used and they told me it was medtronic. It is probable that there would be less speech and balance issues if only one side had been done, but my symptoms were becoming more and more bi-lateral so they made the decision to do both sides at once.
Cheers,
Ian
Thanks , hope you're doing well
Thanks for sharing the information. I'm having the surgery in 03/2022.
Good luck and best wishes for a successful outcome!
Thank you for the informations! My mother did the surgery 15 days ago and we are watching her to see if she manifests some side effects. Some of the effects you mentioned were not informed by the doctor.
nicely done Ian.. best of luck...I'm curious how many responded to your query?
I just had first part of DBS, electrodes placed in the brain... side affect which surprised me is sciatic left side nerve occurred 2 days post op.... numbness from butt to toes on left leg when trying to sit for more than 30 seconds... Although the day after op, i was / am walking 3-4miles (apprx. 4.7 - 5km) per day. Cheers!!
I had around 50 responses.
I have sciatic pain as well, but that started many years prior to my DBS. I wish I had the energy to walk that far!
Thank you for this video. How many people were surveyed?
I can't locate my notes for this video at the moment, but I think there were about 30 responses...
Fascinating!
I guess a neurosurgical procedure like DBS can essentially affect any cognitive, psychological and physiological domain, depending on which neural networks will be affected. Clinicians and surgeons should admit and address this clearly and openly.
I had DBS 17 months ago at Vanderbilt University Hospital, Nashville, Tennessee. Side effects that I have encountered are Speech impediment, difficulty writing with a pen/pencil, anxiety, depression, some balance problems, apathy, some thoughts of suicide. HOWEVER, with the help of God, I am better and am improving daily. I ride a bicycle 40+ mile a week....would i do it again? I don't know....
great video . I will stay natural no matter how bad my pd gets. too many things can go wrong from dbs.
Hi Glen
I used to say the same. Believe me, there comes a point when you beg for brain surgery. As operations go, it is surprisingly safe.
Cheers,
Ian
I had my DBS implants in 2005..i was 35yrs old and had severe Myoclonic Dystonia, its given me my life back and i haven't been this good since before i was 16/17yrs old when this condition started to affect me.
The only question i have is how high can the frequency go from the stimulator to the electrodes in the brain...as my stimulator is turned up to a high voltage already (and steadily increasing each year) as my condition steadily deteriorates (although not visible)..i shouldn't worry as my life is great at this time but its always in the back of my mind...any reply I'd be deeply grateful and many thanks
Hi Stefan
I'm afraid that I don't know the answer to your question - it's one that I keep asking myself, too. My settings are just under 3v each side at the moment, and I know they can go a lot higher, but not sure how long it will be before that is necessary. Depends upon speed of progression, I guess. Maybe also an individual thing as well - what works for me may not work for you, and vice versa...
Cheers,
Ian
Thankyou very much for your reply Ian
Technology is improving all the time anyway my friend...so hopefully when the time comes...they'll have resolved our query 😁 i feel the luckiest guy around having the opportunity to have had these implants and all the staff and doctors at the National Hospital at Queens Square London have been nothing but absolutely magnificent in all the years I've been attending..
Once again Ian thankyou and you take care my friend 😎😁
Hi Stefan, you condition intrigues me, I also have Myoclonus, I was diagnosed with it about 2 years ago, and I recently turned 35, and over the last 2 years my condition has progressively gotten worse, for example a few nights ago I was playing cards with my family, during the card game my hands suddenly started jerking, I had to put my cards down and hold on to the table, even then I was unable to stop the jerking of my hands, and I also lost the ability to talk, this lasted for about 10 minutes... I thought nothing of it until I came across a post on imgur that had a video link about DBS, and what the man described in the video was exactly what I had experienced... except he had Parkinsons, not Myoclonus, and it raised the question... did I have Parkinsons? After searching up videos on people who have Myoclonus, every single video I watched had brief jerkings of the hand that lasted no more than 10 seconds, and sometimes it was just a single jerk of the hand, nothing akin to what I experience. I say this not to belittle the people who have Myoclonus that made these videos, but to raise the question... did my Neurologist misdiagnose me with Myoclonus when in actual fact I might have Parkinsons? Now I am asking you this because I want to know what your experience is with severe Myoclonus Dystonia? Did you experience anything like what I have described? Do you know any Myoclonus patients that have anything like me? I thank you for taking the time to read this and look forward to hearing from you.
Hi sir
Stefan can u please give Ur contact details and let me know about DBS treatment
My husband had DBS surgery 6 weeks ago. His side effects have been like a living nightmare. He’s experienced cognitive impairment, paranoia, combative and violent behavior, speech and swallowing difficulties, urinary incontinence followed by urinary retention. He developed aspiration pneumonia. He had to be in restraints for weeks. Now he’s still psychotic, on a feeding tube and catheter, and is being sent to a skilled nursing facility. I don’t know if he’ll ever recover.
Hi Deborah
How terrible for you (and him). I do hope that he makes a recovery. Has his DBS been switched on and programmed?
Ian
Yes, the pulse generator was turned on and programmed but has not benefited his delirium.
Thank you for this video. I have multiple sclerosis , But my neurologist thinks that I may have Parkinson's as well. I have terrible tremors in every limb, Mostly in my left arm and right leg. Funny to think how I was left-handed
My Neurologist mentioned that DBS might be another option since so far none of the MS medications or a baclofen have worked
I'm only 29, but I figure that the benefits of such an invasive surgery, might out weigh the risks
Hi Jimmy
DBS has been a miracle for me, as has cannabis/CBD. If you haven't tried cannabis or CBD it might be an option for you. None of the regular prescription drugs were an option for me!
Cheers,
Ian
Ian Frizell yeah I'm going to be starting my fourth med in less than three years, of which 9 months were spent "pleading my case " to insurance on"Why" I need them.
I'm in the middle of trying CBD, but as far as the alcohol drops sub lingually, I have not been consistent in my smoking to be having judgment. But so far since the beginning of January it has not worked out for me as far as the drops winch I have been consistent with
You need to be sure that you have got a good CBD product. If you see my CBD reviews you will see that sometimes the most expensive and best known product isn't as good as a cheaper one!
I have most or all of those side effects of DBS w/o ever needing DBS. I've had gait trouble since I was a kid. I have no tremor but have trouble signing my name at times. I'm not even a hypochondriac. Don't have any addictions but I am freaking weird.
My dad is having this surgery as I write this
Best wishes for the best possible outcome!
Evan Moore I hope the surgery went well ;)
Best wishes for him. Sometimes it takes several months after the batteries are connected to find positive results. I called Medtronic many times, disappointed with the lack of results They said some people get immediate positive results and some take the better part of a year to get maximized results.
Everything is a compromise when it comes to settings. Best settings for walking might compromise speech. 5 years later, I still think it compares to having artificial legs. Nothing is perfect, it takes getting accustomed to, and the net result is you are reasonably mobile but still have to put up with irritating conditions. DBS buys years of better quality of life but it is far from perfect.
Evan Moore Is everything ok now? My Best wishes
My dad is going to have it in a week. Im so scared :(
The most deep moment i have had ever heard
uh, what if you have to get on an airplane to go get the DBs adjusted and you are suicidal? Confused and driving a car? Manic and in work in healthcare? Can you just adjust it over the phone with the neurologist? Uh, what if you lose your balance and break your hip? I guess you have to decide about risk vs benefits...but if the doctor glosses over the risks how are you supposed to do that?
Thank you for your time and your efforts to educate others about your condition, i find it very interesting and informative. To what extent did you recover your mobility after the medical procedures? Do you require help sometimes or are you able to live well independently?
I'm much more mobile since my operation. There are plenty of things that I struggle with, but the only thing that I actually cannot do for myself is to scrub my back - thankfully I have a wonderful wife who does that for me!
I'm glad to hear that even though you are having issues with certain movements you can still perform most of your everyday tasks, it must have been a relief to regain that mobility back. Thanks for awnsering! and cheers to your wife for helping you through this!
Hi my son has this opportunity to have this surgery. But he is 11 years old. And I would like to know your opinión . I am from México city.
Thank You .
Your son has a lot of life ahead of him. This surgery was life changing for me, but everyone has to make their own decisions. What is wrong with your son, and how certain are the neurologists that DBS will be effective for him?
Not sure if i missed it, but how many people participated in your survey?
Not exactly a survey, but I asked the question of around 4,000 DBS patients - "were there any effects or side effects that you hadn't been told about or which surprised you".
Hi Ian, may I ask-your voice was affected by PD or by DBS side effects? Thank you
I believe it to be a little of both, although it is acknowledged that it is a side effect of DBS.
@@ianfrizell hi sir,am from india.my father is in at Parkinson's plus stage and also have diabetic since 30yrs,ITB since 1yr and most importantly 76yrs old.so please suggest me,shall I go for DBS.
Thanks in advance
Hi Ramesh
You would have to take the advice of a neurologist, who will be able to assess the likely benefits of DBS...
Cheers,
Ian
My dad has Parkinson's and I have bipolar. I smoke cannabis to help with anxiety and it works well. What I want to know Ian is I see you vape, do you eat the CBD product or only vape? .
Hi Myles
I generally vape bud, but sometimes make some hash brownies which also work very well!
Cheers,
Ian
@@ianfrizell thank you .
Very clear And exaustive. I 've gotPD since2003 . I Was 54 And it Was a shock.i' ve got a freezing form, not many tremors And my doctor Has propose d DBS to me ...l' M vey doubtful And afra id. I dont know what to do since my form Is A light one.thank you for The video
If your doctor feels that DBS would help your freezing, then I'd go for it - surgery is a breeze, and it is life changing!
Ian Frizell thank you for The encouraging words
You're very welcome!
my surgery done yesterday. I hope it helps me.
Hi Alex
I hope so, too!! I have my fingers crossed for you!
Cheers,
Ian
Great video! Thenk You! :)
great info!! :)
erikalst
Thank you so much. I’m so afraid. All the side effects seem so large to me. I do suffer from depression. My seizures are under control the last time. I had a seizure was 20 years ago by the medication I take. I pray that I can still go to my grandson‘s graduation, which is in May of 27. But I’ll be leaving on the 20th. My surgery date is on 9 April. I figured the halo. I seen the needle in the syringe and a grown man crying. It worries me that on the first step seems like a pig mountain to climb over. I know this is an old video but I pray that someone out there can help with the fear I take on the halo. Thank you and God bless.
I hope you managed to overcome your fear, and that your operation went well and gave you the outcome you wanted!
10/10 tick! ⚡️ ❣️
I had DBS surgery this year on both the left & right side of my brain for ET. I have problems with slurred speech as well as balance & gait control. these conditions get better or worst depending on the control settings. getting maximum control over my tremors increases the negative symptoms. having said that I would do the surgery over again in a heartbeat. before I really wished my life were over & now I feel alive again.
My brother has it. It is really getting to him. He called me today we dont speak much and live far away from one another. He wants the DBS. He cried on the phone. Tearing me apart. He visits the doctor tomm again and he will decide if he can get that operation. I fear if he says no my brother I am not sure what he will do.
I hope that your brother can get DBS - it's life changing!
He lives in New York I am in Arizona hard to visit him. He said it is completely up to the doctor for him to get it. DBS, Is this true? If the Doctor says no can he go elsewhere ??
only about 10% of Parkinson's patients are considered suitable. You have to pass through a number of tests here before you will be considered for it. If it's a No, then it is doubtful that another doctor would say Yes...
In February 2018, I had DBS surgery to treat Intentional Essential Tremors in Rochester New York at University of Rochester - Strong Memorial Hospital by Dr. A. Wensel. Excellent results! I have no hesitation to recommend having it done. But, the neuro team determines whether the patient's condition will respond well to the treatment and if physically as well as mentally the patient is up to the operation. I can imagine the emotional letdown if you're not able to get the go ahead but second opinions are acceptable and encouraged. If you're turned down, get all of the reasons documented.
BTW, hopefully I'll have the operation again this summer for my left hand. I can hardly wait!
CowboyArizona i had it in December. Find a really good doctor with lots of experience . I found it made a substantial positive difference in my Parkinson's.
So if I go off on my manager I can blame my DBS on it?
I had this done. Side effects? I have a slight speech issue but who cares. wish I could go back and curse the people who ridiculed me, but then again I am a stronger person. Would I do it again? Definitely.
azthundercloud those who ridiculed you will also get this disease to understand your pain.
I've had the surgery and 15 yrs later my tremors came back!
I hope mine don't come back, although I appreciate that there will be a point at which Parkinson's progression will exceed the ability of DBS to suppress symptoms...
Did you have this done for parkingsons
Yes.
I have had my DBS implant for approximately 3 years and although I would do it again today, I wish I had been told I would have difficulty walking and swallowing. I fell three months after my surgery and broke my arm; I fell again and broke it again a few months later. Although I am profoundly grateful for the life-restoring benefits of DBS, patients need to be more informed about these severe side-effects to enable them to look out for and cope with the walking and swallowing issues. Thanks again for your informative videos.
With mine I noticed at times vertigo
My brother is not able to walk because of tremors, doctor suggested this DBS operations and he is saying 50/50 chance.. in India.. can any one help to get good information please
we have opted for a DBS surgery for my friend of 42 years old Male yesterday at Nimhans Hospital, Bangalore. He was infected with Parkinson's disease for last 8 years; life supported with medicine on every 2 hrs. was not able to speak / walk. After the surgery the result surprised us. Today when we visited at his recovery room, he is a non stop talkative !! and able to walk. further device tuning process will be there in next week. hope that process will give more accurate responses from/to his body. Expense INR10L+
very thks
Can internal temor/ vibration cure with dbs
I don't know - that's a question for your neurologist. I still get some tremor and internal tremor despite DBS.
Thnk u
Who do you represent and which targeted conditions are you referring to?
I represent myself, and make my videos on behalf of all those with Parkinson's Disease.
The worst thing I ever did. Sure I can use my hands but can barely walk and breathe. Life is miserable
now!
Voyeurism?
yep!
Sad to see how mainstream medicine got you. I love you and the reason for your desease is not genetics nor your dna. It has to do with heavy metals and other stuff as well deficiencies (stuff our cells need) within your body but those people are not interested in cures (atleast not the larger industry they work for) I hope you find your way, much love
The lord loves you
😳😳😳
Visit Amsterdam if you can sir for marijuana pleasure.
voyeurism?
Yes, probably coming under the umbrella of hypersexuality, which can be a symptom of impulsive/compulsive behaviour.
You had a bad surgeon.