Barnes Jewish Hospital DBS

[gmabpd]

Hello all....I'm new to the forum. I'm looking for some help for my grandmother. She is considering DBS at Barnes Jewish Hospital in St. Louis Missouri. I'm looking for help regarding anyone who as been there and had this done....and also just some information from people who've had the surgery. I can get all of the general info about the surgery online and in texts, but I was hoping for some people to tell me their experiences both good and bad. I'm a nurse, but neurosurgery is not my specialty! :) I just want to help her and give her as much information as she needs to make her decision!

Thank you all so much!

[dzzy]

:) I had DBS surgery done in 1999 for Essential Tremor, not Parkinsons, but I think the surgery is basically the same...except possibly different areas of the thalmus might be targeted...but the thalmus is only the size of a walnut so it's pretty much the same area. The results are the same tho and the procedure is the same too. I had mine done in Florida, so I'm sorry that I can't help you with information on the facility that you are thinking of.
I can direct you to the company that makes the device (Medtronic) that is implanted in the brain and chest. They have a website and phone # for technical material and questions that you may have. The website is:
www.newhopeforessentialtremor.com and then click on "Activa Ambassadors". The phone # is: 1-877-438-3574.
I would be glad to talk to you by phone or personal email if you would prefer that. You could send me a personal message here with your email or phone # and then we can communicate that way, otherwise this way is ok, but it's long.
I am thrilled with the results of my surgery...actually surgeries, since I had 2 procedures. (I think they only do it once now). I hardly shake at all anymore. I do have some side effects but I will gladly take them rather than shake.......and your Grandmother probably feels that way too.
Happy easter.
Dzzy

[GENIEBRIDGE]

i will make it short to you.i ave had pd since age 11. i got to where i finally had a pychotic break. then it was downhill. couldnt walk, had to crawl to answer door couldnt drive. got to feeling pretty bad for myself. then i was sent to san antonio to a dr merrens. first he had to verify i had parkinsons and dot some other look alike. then he introduced me to dr vardeman who was the neurosurgeon. I did feel funny about the head shaving, but it grew back. they went in right away and did the surgery--all at once.

there is no real pain involved. the only thing that bothered me was the staplesfor the implant--but that was only a week.

today,i can walk and even drive . i know i am sick but i always go to my doctor for his follow up appointments. the doctors i use all shake their heads at how well i do.

i cannot write, that has been long gone. my speech was messed up with the implantation of the electrodes, but so what if i get too hard to understand
i will use my voice transmitter, which is by 4 plus, and it speaks for you.

otherwise i am basically fine. from others i have helped to take this surgery many said that the first thing they noticed was that the tremors were gone

good luck, you wont regret it!


norma-corpus christi-texas :p

[navy6470]

I had my DBS performed at University of Chicago in late August of 2008 after the tremors had left me unable to work. The procedure was performed in two stages; the first involved plotting the placement while I was awake. When the probes were activated and the settings were tested it was the best feeling anyone could experience. I elected to stay overnight but I could have gone home that afternoon. The procedure to install the controller and the wiring to the head involved my being "out". There was little if any pain only the embarrasment involving my bald head.
I gathered much information from U tube.com and the info there involved background details from a number of universities. In addition there were several sites that provided "live feeds" from the operating rooms.
Looking forward to hearing from you.