Hi my name is Val and I was diagnosed with Early Onset Parkinson's 23 years ago. I am considering DBS in the fall and was wondering if someone would like to share their story, trials and tribulations with me. Any input or advice would be greatly appreciated. I am looing for candid information such as "do they shave all my hair off?"
@A MyParkinsonsTeam Member You sound like me I had terrible tremors before I had DBS and I think for the most part the tremors are under control. I still take lots of meds and my Parkinson's has definitely not been cured. I don't know how much information you have been given and I don't want to be a bringer of bad news, but I traded my tremors for broken wrists and stitches in my head as well as the bruises you get from falling. My doctor told me that when you have wires in your head, it sometimes makes people off balance. Now I have to use a walker. Before the surgery, they made it sound like it would take no time at all, not true. Plan for some convalescence and yes, I had to shave my head, but we had a party the night before surgery so my neighbor shaved my head and it was a very positive start. Brain surgery sounds so much more complicated than it is and painful, it's actually not too bad. Also they do the procedure while you are awake ( in lalaland) or asleep Choose to be asleep.I will answer any questions you have and I even have pictures I would be willing to share, but you must promise to continue your quest for answers from more people. I don't think my situation is quite the norm. Hardly! Best wishes and good luck. Every person is different!
Yes they shaved my head.whats wrong with that? Look at the tv once in a while. There are plenty of shaved heads
Sorry Vallypally I forgot! Imagine that! I had my surgery in January and that was a good thing. I got all the Christmas stuff put up and my house was fairly clean. We put a clean quilt over the couch as my dr was very concerned about clean. As you can see, my hair wasn't very long to begin with. You will probably have two separate surgerys The first is putting the wires in the proper place in your brain. It sounds scary but there isn't a lot of pain during or after this. The second connects the wires to a transmitter under the skin near your collarbone, kind of like a pacemaker. Then it needs to heal some before they program it. My tremor was pretty active so it didn't just go away, but I no longer have to sit on my hand! I will try to enclose some pictures. I'm guessing that I can't include pictures but you can send your email address to (Email address can only be seen by the question and answer creators) Best wishes and good luck ! your PD friend, Diane
To Diane and Shakey Thank you both so much for responding to my question. I thank both of you for your input. Diane any pictures or any information you can share with me the better I think I will feel, "Knowledge is Power." At this point in time I am trying the last of the "Let's see if this works medication (this one is called "RYTRAY") My doctor Is making sure all things are covered by Medicaid/Medicare and then its a "GO." They are anticipating early 2018 for the DBS surgery to be done at UCLA Medical Center. Thanks again for your input and I am looking forward to your story Diane!!