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

MikeTTF we can learn from you while you talk to the veterans of DBS here
Would you mind sharing how you came to the decision to have DBS at this time? How far ahead have you looked; did you feel that you were provided with all the information you needed ? I'm asking because there are going to be some major changes in how clinical trials are done and I don't know how involved you are in Parkinsons. I don't want to put you on the spot, or invade your privacy, but don't want to patronize either. Have you looked into clinical trials?

We need to be sensitive to those who have opted for this treatment. THey are getting better at it all the time and it remains the only thing FDA and Medicare approved..Results have been extremely significant.

What brought you to the point of deciding to do it? .....forgive me for directness- don't mean to be rude but every connection made, any dots connected - just spurs you to keep going. I want this to be a decision that was not sold to you by anyone with a vested interest - a business free decision - I won't hide my agenda.....I want this to be a successful and life changing experience for you of course. And I think you are going to come out of the surgery feeling great because you will be in good hands. i'm just curious about exactly how and with whom you made the decision. not names, you know what i mean i hope - family, doctors. etc.

Thank you - first day and homework already lol.

Paula

Dear Paula (and all...)

Would you mind sharing how you came to the decision to have DBS at this time?

Don’t mind at all -

1.) The worsening Dyskinesia / Dystonia.
2.) The Cleveland Clinic is within driving distance.
3.) Medicare insurance.
4.) My wife’s willingness to drive me there and back 8 to 12 times.
5.) Three Neurologists, without further Rx help to offer, suggesting it to me.
6.) It's not as "new" as when it was first suggested to me. (2002)

No doubt - one or two of these factors missing from the above list would keep me in the “maybe later” group.

At my age (51) with my overall health (pretty good) my continued response to Levodopa (good) and my level of Dyskinesia/Dystonia (BAD) ... it’s hard for me to justify NOT having a go at DBS.

How far ahead have you looked;

No farther than is necessary, I believe.

did you feel that you were provided with all the information you needed ?

Most everything I know (so far) has came from the Internet. I don’t feel under-informed.

Have you looked into clinical trials?

No, I haven’t.

What brought you to the point of deciding to do it?

The Dyskinesia/Dystonia has become a huge pain in my butt, (in more ways than one) is unacceptably debilitating and dangerous. I’ve fallen several times, a very bad one in the kitchen a month ago ... squirming around at the microwave, my feet came out from under me and I went down fast and hard on my tailbone ... with the 40 lb microwave in my lap. That hurt, I’m here to tell ya!

I’m afraid to try and walk at all the second half of the day. I crawl or “crab walk” every where my scooter won’t go. Crab walking with a sore tailbone is “interesting” ... takes me 10 minutes to go down the basement stairs on my butt and then “pull-slide” myself across the cement floor to my music room. (but, it’s better than falling)


A year or so ago I could go 4 to 6 hours before the severe Dyskinesia would set in for the day. Now it starts at the end of my first dose and quickly goes to the severe. If I sit quietly at the computer, it’s tolerable ... but trying to do something at a kitchen counter, bathroom sink or my workbench is an ordeal. My knees and ankles violently pound up against anything close and the squatting “hula-hoop” motion in my hips and legs is dramatic and intense. A chair helps sometimes, but I fall off them, too.

Trying to do something with my right (most affected side) foot is both comical and pitiful to watch. It is 100% impossible for me to place my big toe on a specific spot on the floor. Hard as I try, it will hover around in circles forever before I can touch that spot.

The later in the day Dystonia is more recent and has quickly become a major problem. My face, neck, shoulders/torso clench unbelievably hard for a couple seconds at a time in response to any intentional movement. The more I want to, the less I can. Trying to use a manual screwdriver (or the like) is folly.

I can’t play my guitar any more, can’t piddle at my workbench, can’t write worth a crap, can’t safely hold my grandchildren, can’t get comfortable in bed, can’t cough hard enough to clear my throat ... and my neck pops and cracks loudly - is stiff and very sore every evening.

Soooo ... I’ve tried Sinemet extenders, agonists, Zonegran, Baclofen, Amantadine (twice - 200 and 400mg) tried lowering my levodopa dose(s) ... and nothing has worked/helped.

Obviously, I’m not happy with this trend. The Levodopa continues to be very effective for my Bradykinesia, for which I’m very thankful. My level of stiffness /slow movement, mental fog, and shuffling is very bad.

Without levodopa, I’d be in real trouble ... despair and depression would surely overcome me. I’m a helpless blob without Levodopa ... can’t do anything - and what’s worse ... I don’t want to.

As bad as the Dyskinesia/Dystonia is, the Bradykinesia is worse ... much worse.

To wrap up ... the decision is mine, I don’t feel pressured. My doctors and wife have said they think I ought to, but I’m in full control of my faculties. If not now ... when? How bad does it get before I say yes? The longer I put it off the worse it will be.

The potential surgery problems ... stroke - infection - hemorrhage - blindness - cognitive decline - paralysis - speech difficulties - adjustment/programming hassles ... they’re all scary as heck, but The Cleveland Clinic’s expertise and rep is calming. Suffice is it to say, I’m not going to let just anyone drill holes in my skull and fish a wire down through my brain.

I’ll keep you all posted as I go along. Hope I can help someone, somehow.

Thanks to all ...

Mike

Mike,

I can certainly appreciate how long it might have taken to post that but I DO appreciate the detail. Many of us are very close to where you are, or there also, and know the clock is ticking. Dystonia and dyskinesia can drive us absolutely insane - I can kick a door and injure myself doing nothing but standing there!

Falling with the microwave ...yikes...we always have to learn it the hard way you know? I've taken a few tumbles myself.

The drive is a big factor, something that most might not think about...that's a looong drive but worth it to feel safe.

You sound like someone who will really benefit from it, and please keep us informed - this decision is going to loom big before many of us one day -maybe soon.

thanks for the openness,
Paula

Paula ...

Yeah, I've never been fond of long car trips ... and with PD (particulary while "off") it's not anything I'm looking forward to, for sure.

Of course, I've got some options (Indianapolis is much, much closer) but if things "went wrong" I'd never forgive myself. Luckily, my wife is not letting the 10 - 11 hour car trips deter her.

Dyskinesia - it seems that if there's a hard, immovable structure, my toes/feet/shin bones/knees will search them out to bang up against. At times my bruised-up legs look like they've been used for batting practice.

Mike