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DBS surgery forum
People who had the DBS surgery will share their experience
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31 Replies
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I am 72 yrs and am considering DBS surgery. I have had PD for 14 yrs, but was diagnosed 4 years ago. It would help to hear from as many people as possible the pros and cons of the surgery as it relates to themselves. My husband and I have only been married for 7 years in April, so in some ways it is like a new marriage. He is vacillating on a decision because of the fear of losing me! I am not afraid of death, but hate to put the roll of PD caregiver on him at our age. I often joke that I would not have married if I had known I had PD. (He is a blessing!). Advice?
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I am in the midst of doing the DBS! This Thursday is the 3rd Surgery and the last one! To let you know that the 1st surgery they drill into your head where the leads will go! Then they cap them. Each surgery is a week apart. During the 2nd procedure they put the leads in and test them! This is the most grueling one because it could take 4 – 8 hours. Mine was 5 hours! I won’t sugar coat it! They wake you up in the middle of the surgery to see if the tremors respond to the battery! Mine responded immediately! When they turned on the battery the tremors stopped! They were so amazed at the outcome! However, being awake with your head laying flat and not being able to move for 5 hours was can I say more then I could take! However, I came through it! The 3rd surgery is placing the battery in the upper chest under your clavicle! 2 weeks after that, they program the battery to your needs! I’m 65 and have had PD for 7 years! I get very sick on the Parkinson’s meds. They put me on the Time Release Rytary which helped the getting sick, but did nothing for the Tremors! I chose to do this now before I got any older! If you have any questions feel free to ask!
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I also recently received DBS surgery. My leads were implanted on March 22 and my generator was placed 5 days later on March 27. My surgery was done using an MRI guided ClearPoint system that allowed for the entire procedure to be completed while I was under anesthetic (9 hours …rough).
I am 54 years old and was diagnosed with PD approximately 10 years ago.
The surgeon said it was a textbook case and that placement of the leads was “perfect” (GPI placement).
I experienced a brief (approximately 1-week) and mild honeymoon period during which I found it easier to control my tremors through biofeedback than normal. This allowed me my first good nights sleep in YEARS. Because I was a bit concerned about the mildness of the honeymoon period, I asked my surgeon if the degree to which I experienced a honeymoon was any indication of the degree of the overall effectiveness of the DBS. He said the honeymoon period (if the patient even has one) means nothing significant – it’s just a bonus to those who experience it.
I will have my device activated on April 24 & 25. My fingers are crossed.
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Paul, thank you for your detailed response. I wish you success for the 24 and 25th. I have thought about using the anesthesia method, but due to my age I may not have a choice. I have been told the older you get, the harder it is to to overcome the effects of anesthesia. You mentioned a rough 9 hours..is anesthesia required for MRI guided ClearPoint system, or was that a personal choice? Would you use the same method again? Thank you.
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Hi, Linda. If I had it to do over again, I wouldn’t change a thing.
My tremors were very severe. For the first couple hours of programming the device, my doctor grew a little concerned because my body was resistant to the levels of stimulation. My treatment team eventually consulted with the device’s representative, who double checked the placement of the leads via the company’s “brain lab.” As it turns out, sometimes if the placement site is the GPI, it sometimes takes a little time for the patient to respond. So if this is the case for you, be patient.
Ultimately, I am experiencing an approximately 80%-90% improvement in my symptoms while off my meds. Because of the very high doses of meds I took, even after roughly halving my med intake, I experience “rebound” symptoms in the mornings (approximately 12hrs since my last dose). My doctor suggested that as the rebound effect diminishes over the next couple of months, in addition to reducing my medication dosage, he may be able to dial back my stimulation levels as well.
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LIFE CHANGING! I got my life back.
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Totally agree…It (DBS) was life changing and I’d not change anything! Had mine in 2021 (WVU and Dr. Ali Razai) and never felt better! I feel the key was collaboration with all my providers!
My only question is Rock Steady Boxing- I had to stop as my wires were very compromised to my battery and required surgery and a new wire.
Anyone have any restrictions on exercise?
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Hi Paul, you would be all turned on now from what You have said, so I hope it was a great success. i replied below to Norma Jean, so you can probably read there, but on the honeymoon period you mention, my husband also had a period like that also. He didn’t have tremor, but he had a few weeks where he felt ‘extremely normal’ with feeling like he had never had PD.
He was awake for part of the surgery when he had it in 2012, and he also like one of the other ladies on here, thought it was not a great feeling to be awake, just weird, not painful at all, but it was necessary to get the best location of the implants. All the best.
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Teresa, Thank you for your informative response. You mentioned the implantation of the device in chest, I have wondered about that process…Do you get used to it being there? I am concerned it may be hard to adapt to such! Thoughts? I hope the DBS will give you some relief from the side effect of the meds. Thank you again!
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Hi Linda, My husband is very skinny and tall and he said the implant, he can’t even feel it there, you just get used to it. You can see it on him because of his slimness, but its’ been no problem at all. He opted some years back to go for a rechargeable battery as well as he did not want to keep having anaesthesia to change it…. It’s worked out well.
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Hi Linda, with all surgeries done and the battery in my chest, it does take some getting used to! I’m a very petite person! So you can see the battery very clearly! I don’t do the sun but it easily is hidden! If you are one that wears clothes that are revealing, it may be visible! I will say that after the DBS that my tremors were reduced if not just about gone! We are still adjusting to get the right setting for me! So for me it was worth it! I was getting very nauseous on the meds! When the had me try the time release meds called Rytary, it didn’t make me sick but it really didn’t help much at all for the tremors!
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Hello Teresa,
It seems that I am considering DBS for the same reasons you did. The C/L whether it be Sinemet or Rytary gives me severe vertigo (dizzy, nauseous, etc.) and all I can do is lay down, i.e., no kind of life. I am willing to go through DBS, but then I read that DBS itself can cause vertigo. One source indicates that the device can just be turned off to stop the symptom caused by it and another source suggests that the disturbance of brain matter and insertion of the leads themselves may be the source of the problem and did not indicate that there is a solution if this happens.
Would you be so kind as to share what your MD’s told you about the chances of success in eliminating your nausea, etc. and if they indicated that though not frequently DBS itself can cause vertigo/dizziness /nausea? Now that all surgeries are completed for you, has your nausea been eliminated?
BTW, my worse PD symptom is painful dystonia in my left toes, foot and leg, so I don’t know if the leads will be placed in the same area as yours or a different area.
All the best for a continued terrific recovery and thanks in advance for whatever information you are able to provide.
Regards,
L Sparky
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Linda, I had the totally asleep MRI guided DBS just 1 year ago at age 66. It went easier dared to hope for. At this point I get by w/o any meds. You asked about the placement of the generator; you’ll be sore for a few weeks but soon get around w/o knowing it’s there. Your only limitation is no skydiving.
My recommendation is if the Dr’s say it will work for you, consider it because it great!
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I haven’t had the surgery myself (yet!) but I’ve known several people who have, and ALL of them have improved an impressive amount and are glad they did it (though one friend told me the procedure is pretty scary, because you are awake) (And no I guess you don’t HAVE to be, but I’ve also heard you WANT to be, for the best results.)
So I know that’s not a very specific answer but maybe it helps?
Also, if this helps: my husband, who is an anesthesiologist, says this: Of course there is risk with any surgery, and there is risk of dying…everybody knows that. But to put it in perspective? Your risk of dying is much higher driving TO the hospital than with anything that is going to happen INSIDE the hospital. Tell your husband to wear his seatbelt :o)
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Amy, thanks for putting things in perspective – thanks to your husband, too!
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This excellent paper will give you the full detailed picture about DBS surgery:
https://www.frontiersin.org/articles/10.3389/fnhum.2021.708481/full
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Thanks for the reference on the DBS review, Elie! Great read.
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Thank you Amy for your words of encouragement!
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Thank you Eli for the link to various research articles…will be very helpful
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This is a great article!
https://www.cbc.ca/news/canada/new-brunswick/first-person-harry-forestell-parkinsons-dbs-1.6752210
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best DBS FAQ available ..join it
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This is a great news article!
https://www.cbc.ca/news/canada/new-brunswick/first-person-harry-forestell-parkinsons-dbs-1.6752210
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My husband had DBS surgery in 2007 and 2009, for each side of his brain. Each time it was done in one surgery at Jackson Memorial Hospital in Miami. He was awake for the first part and then they put him asleep when they moved the leads into his chest for the battery placement. He went home the next day each time. Each time the battery was turned on/activated one month following the surgery.
He never responded to medication to reduce his tremor. He was always in pain in his legs and his shoulders due to the tremoring. He never had on time. Never. All of that went away after each surgery. Without DBS I believe that he may have ended his life since nothing helped him and he was in a terrible, terrible state, not being able to, hold a book, eat easily, or do any of his hobbies. His life was restored to him. After the second surgery he had the bonus of Joy in a way that he has not ever experienced due to how the surgery affected his brain and mood. It lasted for a while.
He is now 70 years old and still benefiting from DBS. He has had the batteries replaced three times. PD slowly marches on and his balance and cognition have been affected. However, he still walks without need of a walker or a cane. He plays pool. He goes to rock steady boxing. We travel.
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Thanks for starting this topic, Elie!
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ally, I made a response and it has not posted. Lost?
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Hi Marjorie, I apologise – I did not see your comment until now. Were you able to recover your post?
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Hi Marjorie, I apologise – I did not see your comment until now. Were you able to recover your post?
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Hi Marjorie, I apologise – I did not see your comment until now. Were you able to recover your post?
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Let me tell you about my Parkinson’s. I have been diagnosed 22 years ago. Up until now my meds have been working pretty good. I take 2 Rytary 5 times per day along with Gocovri and some other PD meds. I am considering DBS surgery but wondering if improvement will warrant the surgery. Has anyone out there been diagnosed 20 plus years. What has your experience and results been with DBS.
Thanks
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Hi Norma Jean,
My husband has had Parkinsons 25 years plus now, dx at 38 yrs old, now 61 yrs. He had DBS in 2012, both sides, battery pack in chest, but changed it to a rechargeable 6 years ago. He had the implants into GPI like Paul above. My husband never had tremor, but it instantly stopped Dyskinesia which he was suffering quite badly due to length of time on the Sinemet. Going into GPI was from what I remember supposed to lessen the need for meds, but his med intake is up to more than it was before the DBS surgery unfortunately. He is tolerating it to a point, but Dyskinesias are slowly creeping back in. If he had to do it again, he would, but he thinks he would do it to the STN area, not GPI. Overall the DBS has been incredible. It has not helped his continual falls, or his worsening quiet speech unfortunately. He thinks the worst thing for him at this age is he isn’t eligible for barely any trials because of the DBS implant. He can’t remember he was told that before he had the surgery, as it may have changed his mind. Best health to all. x
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Linda M Update
Thank all of you for responding. This may give you a smile…as hubby and I were waiting in the waiting room to meet with our DBS consultant an older spunky DBS patient with very short silver hair returned for an adjustment. She could be heard extolling the benefits of the surgery, and the difference it made in her life, and how glad she was to have decided to have the surgery. She then quickly pattered off to the elevator and was gone. My spouse looked at me in surprise, and asked me “where were her wires?” I explained “the wires were placed internally, and were not exposed.” A good friend had just had cochlear implant with external wires, and he assumed the wires would be obvious (he is a little squeamish about such). LOL. Our DBS consult went well and we were able to make an informed decision in favor of surgery. Thank you again!
NEXT THINGS: Ally, We live in the southeast, and the number of surgeons providing the surgery is limited. It appears, we must travel out of area to find a provider. I would appreciate hearing what facilities were chosen and why. Ally, I am a nubie to the forum process, and not sure this is allowed, but if it is possible to reach out to others and ask about providers, it would be helpful. If not allowed, can they contact me privately my mail to discuss further? If so how does that work? Thank you, again.
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Hi Linda, we can’t recommend doctors here since this is a public forum, but you’re welcome to direct message other members. Thanks!
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Linda since you are in the southeast message me. I am in Florida.
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I am a 72-year-old female who completed DBS surgery on 1/18/23. The DBS was turned on on 2/3/23. DBS gave me back at least 8 years of my life! I can now do all the little things we take for granted again! I can turn over in bed, brush my teeth, comb my hair, put my hair up in a ponytail, get dressed in a few minutes without fighting with my clothes for 30 minutes, button my shirt, fold the laundry and wash dishes quickly, go up and down stairs, get up from a chair without help, walk erect with no shuffling or slumping, and I am still discovering everyday the little things I can do again.
For me, the most difficult part of the surgeries was giving up control to the doctor and his team, not overthinking it, and trusting them to all do their best. I picked the best neurosurgeon who has done almost 1000 DBS surgeries. I was number 930 (I asked). I was given conscious sedation for the lead placement, but don’t remember anything except when I was awakened for a short time to check lead placement.
DBS was the best decision I ever made. -
hi guys ,
I was diagnosed with juvenile onset parkinsonism on my 7th birthday in 1975 and I had DBS surgery in 2006 . Its really has been super helpful for me and I am now on my third battery which, thankfully, is rechargeable.
One piece of advice that I would like to share that Ive learnt over the years is that switching your stim on and off or constantly changing it using the controller isn’t particularly helpful. It takes about three months for my brain to get back to normal after Ive had it switched off . The effect of course is instant but be prepared your brain is an extremely complex organ . -
Hi
I am a 56 yr old female and I have had PD for 5 1/2 yrs. I am seriously considering DBS because I can’t get regulated on the Levodopa. I unpredictably fluctuate between deep “off” periods and “on” but with dyskinesia that I find almost as debilitating as when I am off. I have the Inbrijia inhaled levodopa but it doesn’t always help and it is rather unpleasant to inhale a powder.My questions are: 1- I am told by my doctors that DBS will help stabilize me so I am not always on this roller coaster but it will only get you to a point where you are when you’re “on ” from the medicine. I am wondering if any of you actually felt better after DBS than you did during “on” times before. It is hard for me to tell how well the Levodopa is working because of how the dyskinesia makes me feel. My symptoms are mainly stiffness and a total disconnect between my brain and my body. I think of it as my brain speaking English but my body speaking a tribal click language and so my legs and arms are just not doing what my mind is telling them to do. I dont have severe tremors which I know is specifically helped by DBS.
My doctor performs the surgery in 3 parts. First the left side implant of the leads. Then approx 1 month later the right side is done. Then two weeks later, the battery is implanted. (Luckily the two brain surgeries are done with you asleep for all but 10 mins when they wake you to test the placement of the leads and then they put you back under.) I live alone but I have family that can stay with me or I could go to for the recovery but will I need assistance to recover from the surgery? Did any of you recover just fine alone with maybe a friend or two nearby to check in on you? And if you needed assistance, what type of things could you not do? Could you dress yourself? Bathe? Go to the bathroom? I am trying to decide if my dad should stay with me to make me meals or do I want someone that I am more comfortable with helping me dress, etc. I know about the bandage changes and cleaning the surgery site, but I know two nurses that could help me with that.
Sorry so long but thank you for your thoughts and for sharing your experiences.
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Hi
I have been scheduled for two separate DBS surgeries at Kaiser NorCal Hospital @ Redwood CA: the first on June 6th, which will address the left side of my body, and the second on June 20th, involving the right side along with the implantation of an IPG. I will be receiving the Boston Scientific rechargeable Vercise R16 system, which is recognized as the smallest device in the industry.
At the age of 72, I was diagnosed with my condition in 2015, and it wasn’t until 2020 that I began taking Sinemet. The medication has been mostly effective in managing my symptoms, with my primary issues being tremors and rigidity in my left arm, as well as an internal tremor in my left leg. Currently, I am taking 4x200mg of Levodopa, which generally works well; however, my greatest challenge has been dealing with insomnia, resulting in only 3 to 5 hours of sleep each night.
To ensure the success of my upcoming DBS surgery, there are two critical factors that need to be considered. Firstly, the accurate placement of the electrode (lead) in the Subthalamic Nucleus (STN) is vital. I have full confidence in my neurosurgeon, who has successfully performed this procedure on more than 600 occasions. Secondly, the programming and settings of the system will need to be carefully adjusted to achieve the optimal setting levels, allowing for a reduction or elimination of Levodopa usage. In this regard
I will keep you updated
Elie
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Dear Jordana,
You will do fine after surgery with very little supervision. No high impact sports, no mud wrestling, of course. Each doctor’s post op instructions are a little different, but there usually are no dressing changes – you might need someone to help take the dressing off your head but then it stays off. You can do all of your own personal care – bathing, dressing, etc. It is nice to have someone around to make the coffee and make sure you eat on time!
I am 74 and was diagnosed with PD in 2013. I have never had tremors at all. However, despite low doses of Levo/carbidopa, I was developing dyskinesia that was becoming irritating and noticeable. GOCOVRI didn’t help, and gave me terrible insomnia. This January and February I had DBS. Because my problem was dyskinesia, the target was the GPi. My surgeon does the procedure in 2 parts, with the battery being placed with the first procedure. In fact, I chose to have the second procedure completely under local anesthesia, with no sedation. It was fascinating! (OK, so I AM a physician myself and all sorts of strange things fascinate me!) I could hear the sounds of my brain waves as the lead was being placed! And the best part is that I have had NO DYSKINESIA since my second surgery!
That is not to say I didn’t have any “bumps” in my recovery – instead of a “honeymoon” period right after surgery, when your symptoms improve temporarily without stimulation, I felt worse for about 10 days – I was drooling, having trouble walking, forgetting where things were, couldn’t use my computer. It was a little scary! I had decided to have DBS because it would make me more independant and functional and less a burden to my family, but here I was getting worse! By my 2 week post op check, things had normalized and I was ready to get “turned on”. We are still trying to balance the amount of stim with my medication dosage, but, with no dyskinspesia, anything else I gain is pure gravy! I am back working at the clinic again and loving it!
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