DBS

I had DBS surgery in August & chose the asleep method done at UCSF. It's been slow going as my Graves Disease came to life again after being removed with radioactive iodine 10 yrs ago. We are still fine tuning & keep hoping for solutions. I take comtan & car/levo every hour & 45 minutes. The only improvement there is that I can sleep thru' the night , but still taking all other pills. Getting frustrated as the thyroid is a mystery as is PD.

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  • I had dbs and its ruined my life but nobody will help me. Im so desperate for help

  • Please contact a Parkinson's advocate who will help you find support. Parkinsons Disease Advocate Program <parkinsons_disease_advocate_program@abbvie.com>;

  • Hang in there. I too had the asleep DBS. In retrospect, I see that the first year is a mix of not knowing what to expect, being fearful when something new happens, like, in my case, freezing and falling, and getting the settings right. I tried two programmers and and I am very happy with my neuro/programmer team. Keep going back to your programmer---you are a team. It's a real (pardon the pun) dance. I just had my first "battery" replacement at 2.5 years and, while things are not perfect and my balance was way better before DBS, my dearest still looks at me in amazement when I lift I full cup of hot coffee to my lips and hold it still enough to blow the steam from it. Of all the not so perfect choices we have, this one is as good as it gets.

    Best of luck....hang in there. There are more and more of us now who have gone through this and can write to tell about it.

  • Jash, thx for the encouragement. Did think I would be back driving by now, but have had some setbacks like the Flu & Graves disease. Slow going..........

  • Wynn7: I am sorry you are feeling badly. I don't have the thyroid problems, but I had various other problems with my health. After DBS, it seems like my general health has taken a nosedive. I had my surgery in Dec. and have had 2 programming sessions. I do realize that it is still very early in the process and I am trying not to get discouraged. I have found that surgeries ( I have had 5 in the past 2.5 years) really bring my PDsymptoms back with a vengeance. I see a little improvement in the way I walk, but the "jury is still out" about whether the process was worth it. It has been good for me that I have email access to the PA that works with my surgeon to ask questions and get support. Are you able to call or email someone on your surgical team to help you through this frustrating time? Are you able to make an appointment to discuss your health problem with a medical professional? Don't suffer in silence.. call someone to help you. I hope you are feeling much better soon.

  • Hi, I am really interested in your comment about Graves' disease coming back to life. I had radioiodine ablation about 18 years ago and DBS last year. My programming on my right hemisphere has done very well but my left hemisphere has been slow going. However, to be fair, the left hemisphere was not done until October.

    How exactly has your Graves' disease come back to life? Once ablated it's pretty much dead or so I was told.

  • Hi, I had my thyroid removed with radioactive iodine about 15 yrs ago. I, too, thought eliminating the thyroid was the "cure" which it was until last yr when I had eye surgery which started the Graves' disease problems all over again. I went between an Ocular Surgeon & my internist for months with blood tests every 2 wks for the last 9 months & now waiting for appts to remove scar tissue.

    I guess it can come back as it is an auto immune disease. Very unusual as my sister is going through the same problems & lives in another state

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