DBS...feeling pressured & can't decide!

How does one weigh out the risks & make the right decision as to having the DBS surgery? It's been 14+ years since my diagnosis at age 45. I am currently on Rytary 23.75/95 MG, taking 3 cap. 4-5 x day. With the first dose of the day I also take 1 tab. Ropinirole 0.5 MG. The 1st dose usually lasts about 3 hrs, the 2nd about 3-4 hrs and the 3rd & 4th dose can last from 3-5 hours. I delay taking the next dose until I feel symptoms coming on as meds seem to build up if taken every 3 hrs causing increased movements. I retired from my job 4 years ago, which was 2 years after my Neurologist suggested. During my last apt., I was very surprised when my Neurologist highly suggested the DBS surgery. In 2 wks I go for my brain scan & interview with Surgeon & Psychologist, but not sure I'm ready for this or if I want it. My husband retires in 4 months and we'll lose his health ins., so it may be now or never, as I don't know if I will qualify or if Medicare would even approve it at a later date. Also, although I am on SS disability & get Medicare A & B, they tell me that I cannot get part D, prescription coverage until age 65, which means my Rytary would cost approx. $1,000 a month. There are just so many risks and what if's and what about the things they don't tell you??? I worry, about the weight of the battery pack, as I am rather small build....about the wires in my head & neck, will I feel them...will I feel the electrodes in my head...will my balance or memory worsen...what about the issues with speech or possibility of stroke (I have very low blood pressure)....I could go on and on with questions and fears! Yet, I also hear of those who are doing so much better following surgery. My Neurologist says that if you wait until you think your symptoms are bad enough, you may no longer be a candidate. Though how does one accept the risks of brain surgery unless you're out of options? Any suggestions, advice or sharing of your experiences would be greatly appreciated. Thank you

22 Replies

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  • I was diagnosed almost 14 yrs ago. I've been going ro Rock Steady Boxing(RSB) for over 10 yrs (diagnosed 14 yrs ago at ago 46). Have you tried a program like it? I would try something like that first, religiously for 6 to 12 months, & see if it helps. And if you don't see much improvement, then check out DBS. I think you still have some time before ypu would not be eligible for DBS, but I'm not sure how bad your tremors are? I know about 7 people that have had DBS & 4 were very successful. There tremors & dyskensia were pretty bad. I can ask those people some of your questions & see what they think. It may take a week or two? I have not considered DBS yet because I don't feel my symptoms are bad enough yet.

  • I live in a rural area, so no programs in my area, but just ordered a DVD on improving balance & flexibility with Ti Chi. I realize that I am progressing, but thought that I was still doing pretty good. I still do all the housework, including up & down stairs with laundry. I prepare our meals, grocery shop, take care of finances and still enjoy some hobbies. I do have a tremor on my left side, but bothered most by slowness, stiffness & more recently balance issues. Over the last 5 years I have lost quite a bit of weight and muscle. I am more bothered by wiggly movements, (I guess that's dyskensia) though the odd thing is that it's not so much at home, but when I go out.

  • I heard Tai Chi is very good. Just keep moving & keep fighting!

  • hi sedona well i dont know a lot about it. but i was reading about michael j fox who i think had it done, but did not really work for him..so he said until he knew it would work for him he would stay with what he was doing.might be a good idea to check it out..me im 70 i exercise every day..but over here most people take madopar i take 3 a day 250/50 plus 1 azilect.i have had it for 5 or 6 years.im coping .good luck on what ever you do..john.

  • He had a palliloddomy done so now he can't have DBS-same sight points.

  • Hi Sedona, my husband is 63 and was diagnosed 12 years ago.

    His neuro suggested DBS last year. We are in the UK so would not have to pay as we have the NHS.

    We went to the hospital in Oxford for all the tests to see if he would be a good candidate. The risks were explained, and to us they seemed very high, eg all the things you mention above such as stroke, speech, balance, memory (all of which are presently good) + we felt the risk of infection stats were very high also. We concluded that the only thing DBS would really help is the tremor (which has recently become a bit worse). However the main symptom he wanted to alleviate was what he calls 'walking like a monkey' where his legs just don't seem to be able to support his body weight when standing and walking - but the Neuro surgeon said DBS would do nothing to help that.

    Consequently, after careful consideration, my husband decided not to go ahead with the surgery at this present time. We don't know if this decision was the right one or not.

    He presently takes Sinemet 1 x100/25 three times a day plus 1 x Sinemet CR at night together with a whole host of supplements. Unfortunately due to his 'collapsing' legs and arthritis he is no longer able to go for his daily 1km stroll but he has just started going to the gym twice a week and manages to do Qigong at home twice a week.....this is a start but he needs to do more!

    I hope the above helps you to make this very difficult decision......good luck with whatever you decide. 😊

  • Love mine! Done 3 years ago at about the same age.

    Target symptoms - tremor, rigidity, bradykinesia

  • Hello, I am sorry you are suffering. My husband's case was quite similar to yours (young onset and long progression) and although he initiated the interest in DBS, he wasn't convinced in the end and we both felt, like you, that there are things that the doctor didn't tell us. He did have the surgery, it did improve his tremor, his ability to walk and the length of his on time. However, he began falling immediately after his surgery, even before the device was turned on, and his voice became slurred and soft and it was difficult to understand him. He was very angry about the outcome, partly because I don't think he remembered how bad his tremor and freezing were before the surgery, partly because he felt he was pressured to go through with the procedure, but mostly because of the falls which became worse as time went on. Most doctors will not perform the surgery if you have doubts about it.

    The battery wasn't a problem, although he requested to put it on top instead of underneath the muscles - this made it stick out a little more - the idea was to cause less disruption of his muscle tissue, it might have been better underneath. The wires were visible but I don't think they really bothered him. The surgery left two little bumps on his head where the electrodes went in and we were surprised by the extent of the cut across the top of his head, although the scar healed beautifully. There is now a rechargeable battery so that they don't need to change out the battery by additional surgeries.

    Although the doctors warn that DBS is not a cure and helps only with some of the symptoms, many people benefit from it. The doctors and hospitals also benefit from performing surgery and it seems that they push it a bit due to that financial benefit. My husband died 5 years after the surgery, he was 63.

    One thing we didn't know about Parkinson's is that any intervention can make the symptoms much worse. When my husband had abdominal surgery later, his symptoms became uncontrolled despite medication and it took about 6 months to get back to where he had been before the surgery.

    The insurance problem is difficult and does make your decision urgent. We were fortunate that my insurance paid for his health care. I am hoping to give you as much information as I have, not to convince you either way, since as we know, each case is unique.

  • Anneks,

    Good point about the financial benefit to doctors and hospitals doing DBS.

    I have not had the surgery but I do know that DBS does not eliminate the need for medications, so the cost of Rytary may be a factor regardless. Many pharmaceutical companies have programs that drastically reduce the costs but only for those not on ant government program such as Medicare, VA, etc. There are other discount programs that cover all meds.

    I am hoping to stay out of hospitals for the reasons you mentioned, and because medication for PD often does not get to the patient on time. Gives me plenty of motivation to exercise and live as stress free, healthy lifestyle as is possible!

  • So sorry that you lost your husband at such a young age. I appreciate your response.

  • I'm sorry to hear of your husband's death. Was it connected to symptoms of PD? You mentioned surgery made his symptoms worse. What do you think causes that, the anesthesia, the stress on the body, not taking meds properly, change in activities, all the above or ? I'm getting ready to have surgery to remove a lump in July & have tried to put it off as long as possible. They think it's benign but due to it growing & my history with breast cancer (dbl mastectomy) 8 yrs ago, they want to take it out even though I told them surgeries usually make PD worse. BTW, I've had PD 14 yrs & will be 60 this year.

  • It sounds like your surgery isn't too invasive and pretty necessary, so good luck with it. I couldn't say what it is that causes the symptoms to go haywire following surgery - best guess is that the whole body is disrupted and managing PD symptoms is a balancing act so that the physical and emotional stresses and even the healing process may just interfere with normal functioning. Of course, every patient responds differently, you may not go through the difficulties he did.

    My husband had part of his intestine removed due to blockage - a pretty severe surgery. He died due to another intestinal blockage. He had severe constipation for many years and the doctors said that had caused his intestine to function poorly. Constipation is a PD symptom and a side effect of the meds as well, so yes, I would say his death was due to Parkinson's.

  • Thanks for the words of encouragement. My surgeon said it wouldn't be anything like the other surgery. Take care!

  • I am very sorry that you lost your husband and that he suffered so much with PD complications. Thank you for sharing his story to help others here.

  • Remember , do what you feel comfortable with.

  • I had mine done after 13 years of increasing dystonia and dyskinesia.... I never had tremor. I also had terrible urinary urgency that had me up all night crawling to and fro to the bathroom. I couldn't walk. I'm currently stil 75% better but 3months after the programming I was a solid 90. I would do it again. The only downside is my speech, but I am not sure what I would be like today without the DBS.

  • My husband is in much the same position. He's done the required evaluations and was approved for DBS, but he feels that his symptoms aren't bad enough yet. He takes carb/lev 5x/day and amantadine 3x/day. Diagnosed 7 years ago at age 42. He's still working, so there's that to consider as well, since if he starts having balance/falling issues he'll be unable to do his job. Difficult decision to say the least.

  • Hi Sedona,

    Had DBS surgery in April of this year. Piece of cake! I'm on SS disability and Medicare part B picked up the bill. It's a 5-6 hr operation seemed like a half hr. Overnight in the hospital

    a couple of Tylenol for the pain and they sent me home. A week later I had the battery put in don't even know it's there. Go with the St. Jude DBS System. Feel 75% better and cut my med s more than half. I would do it again in a heart beat!

    Glenn

  • Sedona, you brought up two issues I'd like to respond to. First, you said, "Also, although I am on SS disability & get Medicare A & B, they tell me that I cannot get part D, prescription coverage until age 65." Please double check that. I am 64 years old and on SS disability. I've had Medicare A, B and part D coverage for about 3 years. (The first two years, I had conventional Medicare coverage for A and B and so had to purchase part D coverage as an extra. This past year, I've gone with a Medicare Advantage plan that includes my part D coverage at no additional cost.)

    Second, during my last appointment with my neurologist, he suddenly suggested that I would be an "excellent candidate for DBS." He and I had never had a discussion about DBS until that time. I was a little shocked by his suggestion, as it seemed to come out of nowhere. I told him no thank you. I'm still a little mystified by that conversation.

  • I will check into that, thank you. I often feel like the doctors are not listening or misinterpreting me. I realize that I am not a good, obedient patient and maybe they're just frustrated with me, thereby suggesting DBS. Maybe because I am coming up on 15 years and they feel it's time, as I'll be going down hill from here. I ask questions (more than my time allows) and often experiment with my meds in-between appointments. Hence when I return in 4-6 months I am not always on the same meds or dosages as they had prescribed. They insist that I need to take them on a very regular basis, i.e. every 3 hours. However, I am usually up at 4 am and may not feel I need any meds until 6am, so I wait to take them at 6, when I feel symptoms coming on. I would likely take the next dose at 9am when symptoms are beginning. However, depending on what I'm doing, I may not feel symptoms coming on for 3, 4 or 5 hours. So why take them at 3 hours if I don't need them until 5 hours? So lets say I take that dose at 1pm and the next at 5:30, I wouldn't likely take any more before bed, which is usually about 8-9 pm. So, my way I am taking 4 doses on that day, instead of their suggested 6, plus by not taking them when my body does not need them, I have much less dyskinesia. There are some days that I do require 5 and sometimes even 6 doses, if I am working on a hot day in the garden for example. However, if I am doing light housework, crosswords, reading or weaving, I don't need as much. For some reason, I rarely have symptoms or ones that I cannot tolerate at night. I am of the belief that taking the least amount of meds as possible is best.

  • Sedona, I don't think blind obedience to our doctors (as much as many of them would like it) is necessarily a healthy thing. Cooperating with them, yes; blindly obeying them, no. We live with our body 24/7 and know its reactions to things; they don't.

    Please don't assume you'll be going down hill from here, at least not at a fast rate. I'm encouraged by some of the things I've read on this forum lately: how qigong, fast walking, cycling, boxing, mucuna pruriens, fava beans, and a couple of other things seem to have helped several people.

    That's wonderful that you do both weaving and gardening.

    Ask and keep on asking.

  • Update: I just wanted to let you all know that I told my doctors that I had decided against the DBS surgery at this time. I just don't think brain surgery is something that I should be feeling pressured about. I also don't feel that my condition is such as to make it worth the risks. Thank you for all your replies, you were very helpful in my decision making.

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