Hi,

Cleveland Clinic ... I go in for the DBS preliminary next month, probably (waiting on a phone call from the scheduler)

If the C C wasn't within driving distance (5.5 hours - one way) I wouldn't do it. Their reputation carries weight with me.

I'm 51 (6 years diagnosed - on S.S. disability) with truly awful Dyskinesia and have had 3 Neurologists tell me it's definitely time to seriously consider it, so ....

I'm scared and full of 2nd guessing ... not to mention positively dreading the umpteen 11 hour car trips.

Anyone care to hold my hand?

Mike

Dr Resai and Cleveland CLinic is the gold standard for DBS -STN's. There are a few other places that are as good, but none are better.

read up on the procedure, there is a lot of info about it.

Look at Johns Hopkins site and offcentertv's site (Ray Farkas) for info.

Charlie Black 56, DBS-STN in 2002 at UCLA

http://health.groups.yahoo.com/group/DBSsurgery/

Hi Mike

Welcome

I'm not American ,so I havent a clue about Cleveland Clinic nor your neuro / surgical team, but i have had dbs-stn in March 2005 and would be happy to try to answer your questions if I can.I'm 45 (diagnosed 1996) my "life" pre dbs was more a matter of trying to make it to the end of each day in one piece than "living" . DBS has meant for me, no dyskinesia, greatly reduced meds and no on/ offs. It has quite literally changed my life. As for the actual procedure I have to admit i had no pain except for the IPG incisions, which was remedied with an over the counter pain relief preparation.
If you have specific questions you are concerned about this is the place to ask them...the people on this forum are caring and are very generous with their knowledge and experience of PD & DBS.
Good luck with your preliminary examinations, and your decision

Cheers
Cate

You logged into the right place. Nobody is more up to date about DBS than Chasmo, so you know that you are in good hands. Isn't there some program that would put you up in a hotel for awhile while they wait to tune you up? it sounds brutal having to make people go back and forth over great distances, while this procedur is done. AS far as I'm concerned , that's what half of our research money should go, into making PWP lives easier. They "waste so much in research, yet people like you are "on their own". This gets my blood boiling . I hope it works out for you; and i would kindly ask that you keep in touch with us all the way, because there are many here in the same boat and are contemplating dbs. Good luck and may the time come and go and you be better. cs

welcome to handholders, inc. there is usually someone with a steady, movable hand at all hours here, depending on medication, what they've eaten, blah blah blah...lol.

I haven't had a DBS, but I've heard that Cleveland is one of the places to do it and know people that have gone there. You have done well so far!

Best of wishes and let us know...many of us face this decision.
Paula

The DBS programmer at the Cleveland Clinic is one of the best people on the face of the earth! I haven't had DBS, but I know Sierra from her days on staff at the PD clinic in Kirkland, WA. She is an incredible person, and is amassing quite a reputation for her skill at DBS programming - you are in excellent hands!

Carey