]Yup, thats what they say, I know though I was asymptomatic for years after mine. I still do not take any PD meds on a regular basis. Balance is my main issue now.

MRI vs CT Scan

A MRI is definitely the preferred imaging technique to use. The problem is one of liability. Medtronic used to say that a MRI at 1.5 Tesla power or lower was ok. NOw they recommend NO MRI's. There are facilities that still do them. HEck, Dr Starr at UCSF uses a special MRI that gives realtime images to locate is leads. There is no definable problem using a MRI at 1.5 Tesla to do a head scan. It just everyone is afraid of being sued if anything does go wrong.


The median result for a DBS-STN is a 80% increase in "on " time and a 50% reduction in meds. I personally am always on (scary thought no??) and take no meds save one 25/100 every 3 weeks or so for jaw tremor. There is nothing that helps balance although there is an experiemental DBS that targets the PN (PPN?) that seems to give good results.


Charlie

Charlie,

Wow, you have no "offs"?? what were your symptoms before the DBS? And I would like to clarify something in your post-I think that you were referring to the MRI's as they are not recommended after the DBS. Wow, I wish I could be "on" all the time. I wonder what I'd hafta trade for it?

Jim, I had an electrode repositioned which was supposedly in the correct location.
Post op like you I had a CT scan which said so however I insisted one side was not correctly positioned due to going back to my original amount of Sinemet which wasn't why I had the op in the first place!
An MRI verified my opinion and the electrode was repositioned just 2mm and it made the world of difference so hang in there!
An MRI can give a better idea of position than a CT.

You pose some interesting issues regarding lead placement. Did your dosage increase over time suggesting a possibility that the lead had migrated? Did you go back to the same surgeon/facility that did the placement? I can't imaging w/o some follow up studies that suggest some movement of the leads that the surgeon would be very agreeable to fine tuning their work- they couldn't have it in the wrong place, how dare you suggest! So how do I approach my surgeon with this subject? In my case since I do not have a tremor there was no "noise" in the nerve pathways to guide them to placement. They had to find it by my resulting motor response. They likened it to not having to find the right "house" but the right "neighborhood". Are you kidding me, I want the right room of the right house! Sounds like they may be a block over!

you need to make sure that you have exhausted your programming /med options before you consider a lead repositioning.if you email me your programming/meds history and with your surgeon/MDS history. I can forward it to some professionals who might have some ideas.'

Charlie\

chasmob@yahoo.com

[QUOTE=Jim0918;413198]You pose some interesting issues regarding lead placement. Did your dosage increase over time suggesting a possibility that the lead had migrated? Did you go back to the same surgeon/facility that did the placement? I can't imaging w/o some follow up studies that suggest some movement of the leads that the surgeon would be very agreeable to fine tuning their work- they couldn't have it in the wrong place, how dare you suggest! So how do I approach my surgeon with this subject? In my case since I do not have a tremor there was no "noise" in the nerve pathways to guide them to placement. They had to find it by my resulting motor response. They likened it to not having to find the right "house" but the right "neighborhood". Are you kidding me, I want the right room of the right house! Sounds like they may be a block over![/QUOTE

As soon as the bilateral placements were done I had sudden quite obvious gait and balance problems that weren't there before surgery so it really didn't take a lot to work out that something was wrong.
One side of my body also definitely was back to its old slow and rigid self whereas the other side of my body worked beautifully right from the start after surgery, handwriting restored even when doing a sinemet challenge test so I knew and neurosurgeon who luckily was quite a decent chap knew all was not right.
In a nutshell what I was trying to get across to you was that an MRI now would be beneficial to you.
Lee

I had an MRI pre op that they used to guide them for placement. I've had a post-op MRI to confirm the locations. I have not had one since just after the surgery to see if there's been any lead movement or changes. I was just wondering if they didn't have the optimum spot to begin with. It's understandable with this type of surgery. Thanks.

Jim, sorry had to dash out and didn't finish what I was going to say!
When you say you had a post op MRI are you sure it wasn't a CT scan?
Also was it done after everything was hooked up and in place meaning stimulators switched on though obviously switched off by medtronics rep for the MRI?
I was one of the first to have DBS with my neurosurgeon and he's not sure but seems to think that in the process of connecting the stimulators the electrode may have migrated a fraction but enough to cause the problems that it did.
I vaguely remember (correct me if I'm wrong) that you were happy initially which means it could well be a programming issue.
Either way I still think a new MRI would give you and Dr a better idea.
Lee

Jim,

As a 17 yesr PD veteran and one with DBS this is what I've learned.

You need a team approach with a great MDS (programmer) and DBS neurosurgeon. They must talk to you and to each other. My first DBS in April 2007 worked for awhile then quitl. I wasn't able to reduce meds at all. In September 2008 I had a second to put in an additional lead. It has worked beautifully. I dropped back on meds and the surgeon did the programming right in the OR. Of course he was on speaker phone to the MDS at the time. I agree with going to a major university teaching hospital. I've never felt rushed at Hopkins and they all walk on water as far as I'm concerned. Never have I had an insurance issue with them either. Several years ago I tried Comtan and had terrible side effects. Prior to the second DBS I was on three different meds 5 times per day. Now I'm on only Sinemet 3 times per day. A savings to me of over $1,700/month.

Good luck and keep trying until something works.

Mary