New here ... DBS in my future
 

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? :D

Mike

you'll be fine
 

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

Mike..
 

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:mad: . 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

Cleveland DBS programmer
 

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

stepping over that line
 

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. :eek:

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. :rolleyes:

Mike

"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. :rolleyes: "

Mike


Would that be due to the fact that our short term memories are non-existent and you didn't remember the object was there?? :cool: Sorry if that doesn't apply to you as it does to me! lol

hang in there,
paula

I have been thinking a lot about your post, and see how falling is going to become a real hazard. Just what we need, another crack in our heads. lol

I am at a point where a decision could be wise but not quite mentally there yet. Physically I'm just behind you too, but older - i can usually walk but have crawled of course when threatened with losing balance or with dystonia.

I guess it boils down to wanting it badly enough to accept the risk. How much have they talked to you about "losing yourself a little". Not to be negative, but just would like to know how they prepare you for that. Losing - meaning - perhaps depression, compulsions, or hopefully something that can be regulated. Will our personality become regulated too tho? Charlie is a success story and should probably correct any misperceptions I may have stated.

Of course we are already regulated by medicine....including big parts of our personalities.

How do the batteries hold up now that they have been doing it longer?

This is the issue that I avoid the most.

Paula

thoughts on DBS
 

battery life is good, mine still test as good and they have been in since Oct. 2002.

There are three types of people when it comes to DBS.

some people have got no idea,,and dont want to know...so be it.
others are curious but sitting on the fence, maybe yes maybe no.
others want it yesterday.
You have to ask yourself, do I have an acceptable quality of life? Or am I going between dyskinesia and freezing, taking bucketloads of emotionally altering drugs??

it's a quality of life issue.

if you go with a proven program, your chances of successful DBS are at 90% Plus now.

I decided a DBS was for me when I realized the reason my knees were hurting was because I was reduced to crawling around the house at night.

All I can tell you I'd do it all again in a heartbeat. The 5 surgeries, the infection, the explant, the PIC lines, the month in the hospital.
DBS is that good. Sure there is a 2% chance of complications. You could get hit by a bus crossing the street too.

The unknown is scary for many. When you are no longer scared of the thought, its time for a DBS.When you have NO quality of life, it no longer becomes a question of "IF" but rather a question of "WHEN".
DBS works for the vast majority of us. It has been proven to be better than meds at managing one's symptoms.

It simply is a quality of life issue.

remember though, your PD CAN get bad enough to were a DBS will not be effective.

Charlie

Charlie is a great one to give you all the details (although at times he praises his DBS more than his wife and kids!) lol

He gives good advice. Best to you.

Peg ;)

Parkinson Disease: Guide to Deep Brain Stimulation Therapy is a free booklet available from the National Parkinson Foundation. Just call them at 1-800-327-4545 or e-mail them at mailbox@parkinson.org.

They've updated Fitness Counts and Pracatical Pointers for Parkinson Disease among others available.

Thanks, Dottie!

Peg

Why have DBS?
 

This is something worth remembering to quote (or try to, I don't know how to go backwards and forwards on this site!) P.D. can worsen to a point where the surgery will give no signicant improvement. This is a point worth remembering.
Many of you are still in the early stages of P.D. and I personally wouldn't consider DBS yet nor I imagine would a Dr, but there comes a time where life sux and that was what I was basically trying to say in my post on a previous thread.
You'll recognize it yourselves, your life revolves around ons and offs. An on usually has you dyskinesic more than with a smooth on like you previously had, the pain of dystonia is excruciating and you're really not game to do much of anything for fear of yet another of those unexpected offs that you get increasingly more of.
DBS comes along and the change can be quite dramatic in fact it usually is, I personally have yet to meet a DBS pt who wasn't happy with the results.
We all know it's not a cure, nobody said it was but until they think up something better it's the next best thing and at the risk of being attacked by a "non believer" I'm going to be singing its praises.
Anyway that's my 2 cents worth.
Cheers,
Lee

Mike is a good representation of where several posters are and many more readers. He is never comfortable, he gets dyskinesia all of the time - first dose. He can't walk half the time, he can't do his other interests, he has a wife willing to do it with him including long rides with something new in your brain.

He had a very dangerous fall.

God Bless your wife. YOu have many ducks in row, Mike, and you feel like crap. You've got to try DBS for anything to get better.

A group of us are still working on Amgen to at least grant compassionate use of GDNF and continue the pump infused trials; we will run it into the ground and more.

But in the meantime we are getting to the same place you are; and we don't know how long we can continue on at this physical pace,

So you get one and buy yourself time before they get something neuro-protective. Other than GDNF, we have Neurturin...Ceregene starting phase II with many unknowns, hopefully the GDNF trials have taught them some pitfalls to avoid.

But treatment is years away. And wonderful news for Young Onset, who are just starting out with the diagnosis. Scary but very hopeful
We have to get by in the meantime. THis is what we wanted GDNF for and still hold Amgen accountable due to ineptness and miscalculated business interests

I notice how much of a recluse I've become and and relate better to my 3 yr old grandson than anyone. Too many obstacles to overcome to get anywhere.

There is spheramine, phaseII bilateral, very promising but moving at a snail's pace;

I believe that I need to make a decision about DBS if GDNF does not make a reappearance. If I were younger. I'd still be hoping for growth factors and gene therapies but who knows when.

Well thank you for letting me use you as an example, it's something we talk about but avoid and still are afraid.

Charlie, did you hear that Patti H; pwnkle's buddy in Kentucky, finally had one? Doing fine, just had it a couple weeks ago, maybe not even that long yet.

Paula

Edited to add I just read Lee, and I do agree. But I just breezed over that other thread
as I usually do - I'm not trying to avoid it this time. Your post is totally reasonable.

Is there Time ?
 

FYI

UW-Madison researcher says stem cell benefits will take timeJoe Vanden Plas . Published 10/07/06

Madison, Wis. - When scientists look back at this early period in human embryonic stem cell discovery, they might regret the hype surrounding this controversial research, but they won't be able to accuse the man who derived stem cells from embryos of contributing to it.

Outlining some of the remaining challenges for stem cell researchers, University of Wisconsin-Madison professor James Thomson took the opportunity to inject some realism into the stem cell expectations game before
UW-educated executives at a CEO Summit convened by John Morgridge, chairman and former CEO of Cisco Systems.

The hype is coming from a variety of sources, and is creating expectations of near-term cures or treatments for debilitating diseases such as Alzheimer's and Parkinson's. While Thomson remains enthusiastic about the potential of stem cell research, he cautioned that its benefits will take time to realize, and he said that perhaps the biggest bang will come in ways that don't make the front pages of newspapers.

Noting that in retrospect, expectations for gene therapy have been oversold -breakthroughs have taken longer than many predicted - Thomson suggested that the same could be said of human embryonic stem cell research.

One of the promising areas of the research lies in the possibility of stem cell based transplantation therapy, but several obstacles remain. Perhaps the most daunting is preventing the process that originally kills cells, which he said could take years if not decades.

"I don't want to sound pessimistic," Thomson said. "This is all doable. It's just not going to happen overnight."
Dynamic research
Thomson serves as the scientific director for the UW's WiCell Research Institute, and co-founder of the drug-screening company Cellular Dynamics International along with fellow UW-Madison researchers Craig January and
Timothy Kamp.

The company plans to introduce a test for drug candidates for heart toxicity, and hopes to do limited cardiac toxic testing in human cardio myocytes - beating heart cells - in the first quarter of next year.

"It's Craig January's prior work," Thomson said. "Craig offers the gold standard for this particular cardiac test, and he's well respected throughout the drug industry, and it gives us immediate access to the market we're going to need for human embryonic stem cell testing."

Thomson believes the public debate on stem cells has shifted in favor of human embryonic stem cell research. Asked about the prospects of the mid-term elections producing a veto-proof majority for House Resolution 810, a bill that would make available new federal funding for stem cell research, he took a wait-and-see approach.
"I can't say," he said. "I'll just wait until November and see what happens.

I would say that clearly this work caused a fair amount of social controversy. It was well examined by a lot of different people, and it's broadly supported by the American public now.
"Politicians in Washington realize that, and whether it's this January or three years from now, the legislation will change."

One of the elected representatives who consistently has opposed H.R. 810 is Congressman Mark Green, who is challenging Doyle, a supporter of embryonic stem cell research, in the 2006 gubernatorial race. Asked what concerns him most about Green, who has called for $25 million in state support for
stem cell research that does not result in the destruction of embryos,

Thomson deflected the question.
"I so much try to stay out of local politics, but it's hard to do because the current governor has been very supportive of us," he said. "All I would say is, as much as this is important to people, it's worthwhile looking at the track records of both individuals and voting accordingly."

Thomson also said he doesn't worry that a challenge to the Wisconsin Alumni Research Foundation's stem cell patents will result in their being overturned or altered. That, he suggested, is WARF's concern. "So Carl [Gulbrandsen, WARF's managing director], his job is to get ulcers over that," Thomson said. "My job is to do good science."