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Deep brain stimulation -- anyone have experience?

Discussion in 'Hangout' started by TooPatient, Feb 3, 2018.

  1. TooPatient
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    by TooPatient » Feb 3, 2018
    I just found out today that my grandmother's doctor is offering Deep Brain Stimulation as an option to help with her Parkinson's Disease symptoms. I had never heard about DBS until today. I have done some looking but am curious if anyone here has any experience.

    My grandparents are not good at asking questions and have had some health issues because of that. Now, my aunt or mother go with to appointments to get more information and ask questions.
     
    


    


  2. CJ2008
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    by CJ2008 » Feb 4, 2018
    Sorry TP I never heard of this. Just wanted to say that it's so common that older people don't like to ask questions. Hope you're able to get some answers and that it turns out to something good for her to do.
     
  3. KristinTech
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    by KristinTech » Feb 4, 2018
    My cousin-worker’s husband has had this done twice (one hemisphere at a time, I believe). It was life changing for him! The neurosurgeon wanted him out of the hospital ASAP in order to limit issues with possible infection. I do believe the home care immediately after discharge is pretty intimidating to non-medical folks.
     
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  4. AprilBaby
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    by AprilBaby » Feb 4, 2018
    I would try it. My dad died of Parkinson’s complications in 2000 and we would have tried anything to help.
     
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  5. TooPatient
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    by TooPatient » Feb 4, 2018
    Thanks! She would be having this done in Seattle so the surgeon would be one of the best around. I hope they would also send her home soon!

    My grandfather has medical training as he was military and then a volunteer firefighter for some decades. My aunt and Mom are both trained in home health care. (You would think they would be better at asking questions!) One or more of them would be with her at all times.
     
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  6. TooPatient
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    by TooPatient » Feb 4, 2018
    I'm sorry you lost your dad that way. Seeing her this way is very hard. My initial response (internally as I didn't want to cause worry when I knew nothing about this procedure) was horror at messing with her brain. As the shock wore off, I would be so happy to see something help her. I know there is risk but if it is likely to help....
     
  7. cmd2014
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    by cmd2014 » Feb 4, 2018
    It’s a common treatment that has been around for at least a decade. It’s life changing for some, and is less effective for others (as it primarily targets only certain types of motor symptoms). It’s not considered new or at all controversial at this point. There is also typically an extensive presurgical assessment done to determine whether someone is a good candidate (typically involving collaboration between neurology, neurosurgery, and neuropsychology). There’s good information about the procedure on these sites:

    https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?deep-brain-stimulation

    https://www.mayfieldclinic.com/PE-DBS.htm

    I know it sounds scary, but it really is a standard treatment offered to people who have poorly controlled symptoms of tremor and dyskinesia despite medication management, and whose quality of life is being hindered because of this.
     
  8. TooPatient
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    by TooPatient » Feb 4, 2018
    Thank you!

    I have been reading through the Michael J Fox site. It is very good. Thanks for the other link too. All the information I can get on this is a huge help.

    I'm glad to hear it has been used so long. For some reason, I was thinking it was still new.
     
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  9. jordyonbass
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    by jordyonbass » Feb 4, 2018
    I had never heard of it until I watched a documentary called Ride With Larry. I learned that, as @cmd2014 has mentioned, that it's effectiveness varies from person to person. It is also very expensive, so you would obviously need to check their policy.

    I won't go into detail about other avenues they choose for his treatment as I am in no position to recommend it at all. However it is an interesting documentary to watch, that's for sure.
     
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  10. TooPatient
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    by TooPatient » Feb 5, 2018
    I'll have to watch the documentary! Any and all information on this is super helpful right now.

    I can only imagine how expensive it must be. I am very thankful they have exceptional coverage and have never had to make medical decisions based on expense.
     
    


    


  11. jordyonbass
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    by jordyonbass » Feb 5, 2018
    The documentary isn't about Deep Brain Stimulation, rather they touch on it during the documentary. Unfortunately it didn't seem to help Larry a lot.

    I'll give you a little warning; they look into treatments that some would call 'unorthodox' and the effects are surprising. Again not recommending anything in the documentary but it's worth watching.
     
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  12. cmd2014
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    by cmd2014 » Feb 5, 2018
    I wouldn’t recommend the video. Larry doesn’t exhibit symptoms that are clinically consistent with a diagnosis of Parkinson’s Disease, and there has been some thought that the documentary was likely a hoax. It makes for compelling tv, but it's not reflective of what we see in reality. My recommendation would be to stick to reputable websites (like the Mayo Clinic, the Micheal J Fox foundation, the Mayfield Clinic) and to obtain as much information as possible from your grandmother's treatment providers. Most multidisciplinary medical teams are happy to meet with patients and their families as part of the pre-surgical assessment to answer any questions that they might have about the procedure so that they can make the most informed choice for themselves about whether or not to pursue it. It is a fairly extensive pre-surgical assessment process, so there should be lots of time to talk to at least three different professionals in related but separate fields for their opinions about your grandmother's case.
     
  13. TooPatient
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    by TooPatient » Feb 5, 2018
    Good to know!

    I am heading back to see them some more later this week. I'll try to get some more information directly from them. Grandma talks more freely with me than she does some others in the family so we usually get into serious stuff when others aren't around.

    Her symptoms do seem to be what they target in the surgery. From what I can tell, she is right down the middle of who they suggest doing surgery for.
     
  14. AprilBaby
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    by AprilBaby » Feb 7, 2018
    Best wishes!
     
  15. monarch64
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    by monarch64 » Feb 8, 2018
    TP, just wanted to say that I hope things go well for your grandma. I know this is hard. I don’t know anything about DBS but I have some experience with Parkinson’s and I think you’re smart to try it. (For your family.) Best wishes to you and yours during treatment.
     
    


    


  16. TooPatient
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    by TooPatient » Jul 9, 2019
    Update...

    My grandmother let me know she felt a scab on her head and seemed to have oozing. I talked with my mother (who lives with her) and found they had noticed it a couple of weeks ago. I insisted she call the doctor NOW and they got a call back the next day. I don't know details. They just left the Dr now and are going straight to the hospital. Surgery tomorrow to remove the system.
     
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  17. TooPatient
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    by TooPatient » Jul 10, 2019
    The wires rubbed through her skin. Since it was exposed, it is not safe to leave in her brain. They will be removing it in the morning. The infection disease doctor came in and talked with us. He has ordered samples at different levels as the remove to check for infection. He thinks.ot is likely just a surface infection since she hasn't had fevers or other symptoms of infection and, frankly, it would have left her VERY sick or dead by now (4 months she ignored this!) if it had gone into her brain. There is at least a surface infection. Very painful for her to even brush against.
     
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  18. missy
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    by missy » Jul 10, 2019

    I am so sorry your grandmother is going through this and sending her well wishes @TooPatient and hope the surgery goes smoothly.
     
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  19. cmd2014
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    by cmd2014 » Jul 10, 2019
    Oh no. I'm so sorry that happened. That sounds awful. Hoping that the removal surgery goes well and that she is on the mend soon.
     
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  20. TooPatient
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    by TooPatient » Jul 10, 2019
    Just out of surgery. Removal went well. Still waiting for word on labs to check for infection.
     
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  21. TooPatient
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    by TooPatient » Jul 11, 2019
    We heard from the hospitalist that her gram stains came back positive for staph infection. The cultures are not done yet, but a lady from neurosurgery says that the cultures WILL be positive and probably staph. So Grandma has a staph infection in her brain. They started her on IV antibiotics last night as part of a standard after surgery procedure and had a 2nd type this morning. Waiting to hear from the doctors what will happen from here as far as antibiotics and stuff. She will not be discharged at this point despite getting around well. They want her there on IV antibiotics until the specific plan of treatment is set and then follow it. I am not very familiar with this, but my recollection of what I have read on staph over the years is that it is bad and being in the brain is one of the worst cases. I am livid at my family right now for.so many things but keeping it smiling for Grandma as I sit with her at the hospital.
     
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  22. MollyMalone
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    by MollyMalone » Jul 11, 2019
    Oh what a wrenching scenario. I'm sure your grandmother is grateful for your loving presence, good company, and intelligent advocacy (every patient needs an advocate there in the hospital). Sending you both all best wishes :pray:
     
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  23. DAF
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    by DAF » Jul 11, 2019
    Hope she continues to mend, but I just wanted to postulate that it's difficult to get past the blood-brain barrier and get the meds to where they need to be. Best Wishes.
     
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  24. TooPatient
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    by TooPatient » Jul 11, 2019
    Yes. I know that but my family doesn't. Grandpa sort of does. I'm not saying anything about my worries to them since we are still waiting on word from the cultures. Going to be a rough few days here as we get more information.
     
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  25. TooPatient
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    by TooPatient » Jul 11, 2019
    That little spot on the bottom in the 2nd picture is the sore that has been open exposing the DBS unit for 4+ months. It was hidden under her hair so not visible without digging. IMG_20190711_152101364.jpg
    IMG_20190711_152124206.jpg
     
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  26. missy
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    by missy » Jul 12, 2019
    @TooPatient I am so sorry about your grandmother's diagnosis and am keeping her in my thoughts and prayers and hoping for successful treatment. Sending you hugs. Your grandmother is very fortunate to have you on her side advocating for her. (((Hugs))).
     
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  27. Slick1
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    by Slick1 » Jul 12, 2019
    @TooPatient I am sorry your grandma is suffering with these medical issues. I feel so for you all. I have been there. I am sure your presence and advocating for her is much appreciated. I just fought off a staph epidermis infection from implanted metal in my jaw. I needed a PICC line (IV line for home antibiotic infusions) for six weeks. Seems to have done the trick but as PP said the brain blood barrier may make this more difficult. But I wonder how it worked in my jaw then....
    Many prayers your way. ❤️
     
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  28. TooPatient
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    by TooPatient » Jul 12, 2019
    I hate hospitals. Waiting for results and each Dr knows different tidbits. Had several come in who didn't know the other parts of stuff so got updated from me. Maybe I am just spoiled with the place I go. I'm used to having all the test results and stuff available for me to look at through an app so it is just a Q&A when the doctor comes in instead hearing results for the first time.
     
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  29. Arcadian
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    by Arcadian » Jul 12, 2019
    :(sad So sorry to hear about your gram. Sending lots of healing dust her way. Give her lots of hugs and kisses (I woke up missing my gram this acutely morning, so this hits me hard)
     
  30. TooPatient
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    by TooPatient » Jul 12, 2019
    Thank you. I'm sorry you are missing your gram. They are special women for sure!

    Possible good news is that it sounds like it isn't MRSA. I say possible because I don't know what the nurse was basing that statement on. I haven't heard anything from results that rules anything out yet. She is probably correct and this is just one of those things we don't get to see and no one thought to tell.
     
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