My walk (stumble) through PD

[MKane]

Thi s is for those of you new to PD so that you may avoid some of my errors.

I was dx;d in Sept. 1995 and spent a year in shock amd wallowing in self pity. I was 44. That year I also lst twso beloved pets, had a fiancee bolt and my enploer closed hus business. Not a good year! I stared on sinemet and tried a few other meds, but oncw I got to the correct dose sinemet was all I needed.

After a 4 month job search, I landed a great, but demanding postion with an organiztion that provided excellent health insurance and disability. During the time therei contined to board & ride my two Arabian horses. On weekends I cleaned & managed the stable. When Mirapex came out I tarted takimg it and it helped trmendously. The PD slowly progressed.

In 2003 I retired on disability. In 2004 I sold my home and bought a small farm in TN. It rejuvenated me. I shocked the neighbors with my ability to renovate both house & barn, and landscape.

While living in MD I had been treated by a neuro at Hopkins. Shortly before my move she was hurt in an accident and quit. I started to see a fine MDS at Vandy. In the winter of 2005 I started to have difficlty sleeping. In December 2005 my neuro gave me a script for Sinemet CR. it worked well until late in the Spring of 2006. I bgan to have severe burning sensations in my right hand and dyskenisa.

Mother's Day 2006 I was so bad that in the middle of the night I was taken to the local ER. There is was treated as a criminal, retrained, left lying naked, ad eventually straight jacketed and scheduled to be transported to a mental institution for the criminaly insane. A friend intervened and had me transferred to ICU. It was determined that the CR had built up and I was overdosed. The neuro who saw me in iCU became my new neuro.

Although I tried to continue on at the pace prior to the ER experience,it became more difficult. Fially in January 2007my neurotoldthaat due to the PTS of the ER expeerience the window for me to have DBS was closing.

On April 4.2007 I had Bilateral STN DBS at Hopkins. Initial programming was exactly one month later. I waslked out a new person. Three weeks later I had a major meltdown. I was unable to walk or talk, severe dyskenesia and double vision.

I flew back to Baltimore for more prgramming. Again very sucessful. Until August and then another meltdown. Flew back to Hopkins and was made right again.

On New Years eve I had the worst meltdown ever. The programmer at Hopkins was out of the country. My local neuro was on the west coast. I sat for 2 hours t a local walk in clinic to be told that I needed to goto an ER 30 miles away. Friends took me there. There ws no neuro on call, but the doctor there tried to find one at Vandy and at medtronics. No luck. I spent the next few days very uncomfortable. Finally, on 1.4 2008 I flew back to Hopkins.After working with me for 20 minutes he was able to correct the problems on my right, butsaid that the PD had progressed too far on the left. (I just received the bill for this yesterday $963.00) Afew days after arriving home I had lost all feeling on the right and speech slurrred. Friends thought I'd had a stroke. Back to the ER 30 miles away for a ct scan. They gave me some sort of anestisa and I reacted with worse dyskensia & inability to speak.
CT scan showed no stroke.

The end of January I drove to Hopkins and was reprogrammed by a different prgrammer. Again, sucessfully. It held this time for two weeks. This time tremor was so bad I could not type or dial the phone. A neighbor came over and called neuro. He told her to use the hand held and ramp the voltage down. Because I was shaking so bad the wrong button was pressed and the shok put me down on the floor unable to speak. Whe the neighbor called back she was told not to call him again.

Frineds contacted the surgeon who did the DBS,he gathered the whole group including both programmers and th medtronics rep. A MRI was done and they still can't figure out a solution.

The impact of all this is that I must now find homes for my horses, sell my farm which i have mortgaged in order to pay medical expenses and for drugs.
Did I mention that I have $1,000.00 worh of one drug that I cannot take?

The moral here is that for a very long time I thought I could beat PD. I was wrong.

[CTenaLouise]

dear McCane,
I am sorry that the PD monster has taken so much quality life from our lives,
and even so I am thankful each day for even being able to do something small
like for many -typing on the net - easy... well try that when tremors
have the mouse in thetremoring hand -clicking things you never ment to click -
or erasing entire posts -
dear M, Hope is still there, just not health of the body, yet
the health of the Spirit is clearer and we have been humbled
and soul is tired, - & we have come to certain realisations
that doctor's practice medicine and they do not heal the body the body
heals the body...
do not lose hope...
:hug:

[aftermathman]

I don't know what to say, if nothing else this proves the power of a forum like BT2 to enable real communication between peers, not just the exchanging of information, (however valuable).

Your post moved me and I can only send you best wishes, you have to continue the fight, for there is no alternative that I know of. Keep strong, keep hope and remember that you are not alone.

Good luck,
Neil.

[RLSmi]

We are still all here for you in any way we can be. I am thankful for the support and help you have received from friends. It is no secret that Parkinson's is a nightmare disease for all of us. The sense of helplessness that can descend on us in times like those you are experiencing is even more corrosive than the progressing physical symptoms.

I'm convinced that our true self, our spirit, can survive and thrive with God's help. Please, hold on to faith in whatever ultimate reality you believe in. If necessary, reach out to anyone you can whose belief you respect and lean on their faith. We are made to live in community in both good times and bad.
PM me if you wish.

Robert

[ol'cs]

I remember when you first posted on the "old" forum. You had such a strong independant attitude, like nothing could get you down. You were ecstatic about your new found freedom with your country home and your beloved horses. This much of you will always be here, in the minds of those who care about those here. It pains me to read about your present condition. It makes me realize that all my problems are but a trifle compared to those of others. Your spirit is intact, but your mind and body are crying out for help; help that you are unsure you will receive. I doubt that there is anything that any one of us could say that would help you to fix your DBS, but i believe taht there are many of us sincerely praying that somehow, somewhere there is someone who can "fix" the damage that the DBS has done to you.
Your "Case" is why I don't get a DBS. In my heart and mind , I have dire warning bells that the same thing that is happening to you , will happen to me, if I attempt to have a DBS. I would rather go on with life as it is, getting a good day out of every three or four, than be at the mercy of no guarantees.
This is from one fellow who will remember your words and you forever. You have helped me in thinking that i am making the right descision in spite of those around me telling me otherwise. Thank you for revealing what is happening to you in your post. It may be cold comfort, but you may have saved some of us from what is happening to you. I will pray that you get the help that you need. cs

[stevem53]

Mary..Im am sorry to hear of all youve been going through..You were doing so good a couple of years ago, then it seems that the rug got pulled out from under you..You have been such an inspiration to me to keep fighting, and I have been..I hope you continue to fight as well..My prayers go out to you :hug:

[paula_w]

Why the risk of DBS is downplayed has to be money. It's a huge risk. I can see it if you must do something. But they recommend them when you are young. Thanks for telling your story - you have had a real bad time of it the last couple of years. It's not easy to admit to hardships. There may be readers that can help.

Also, we need to hear these stories - you don't read about them very much anywhere else. It sucks having this disease and aging doesn't help either. You have to become another person, but I agree that faith and the human spirit can conquer a whole lot.

I hate the thought of you giving up the horses. Hoping that you will find the perfect place for them.

best wishes,
paula

[Jaye]

I can scarcely even echo what others have said with my poor words. You are loved, M, that much is obvious. Your spirit is still yours, and in my view already healing. I believe that the stronger the spirit, the less it matters what happens. I think of a guy who steers his wheelchair by blowing through a straw, or another who writes books by focusing his eyes on one letter at a time on a screen. I also think of children I have seen on the streets of South Asian cities, tiny little beings, going out in the morning with their grubby plastic bags to dig through garbage for food and salable items. While their suffering doesn't diminish yours or mine, they show us what can be done with misfortune. Thank you for your continued trust in our community. Good will come of it.

I see doctors in Baltimore. They don't understand my fear of DBS. It's their "treatment of choice." It's my life.

Jaye

[MikeTTF]

MKane painful to read your story

I've a similar one - had bilateral DBS STN in Mar 07

Excellent dr's at Cleveland Clinic but

I gave up after 7 tries at programming 11 hour car trip hotel room-gasoline expense etc.

Don't know what I'll do in future - feel kinda pitiful right now

Best to you

Mike

[gaykir]

darn!! Husband Kevin had his DBS in Feb 07 and it has been a roller coaster ride down hill ever since. Changed neuros and programming got somewhat better but like Mkane it doesn't hold more than a week or so........it was not at all what we had expected or hoped for.:(

[ol'cs]

Do WE see any rhyme nor reason out of the DBS cases that we have seen here? Are there any trends or are there any dbs contraindications that apply to a certain sub-population of PWP? I know that Chasmo had great response to DBS and a few others here will tell you the same, but were there any common factors among the successes that were missing in the poor responders? Is it ALL a matter of programming? Is it ALL a matter of the precision and experience of the neurosurgeon?
Or could it be something as simple as "tremor dominant" vs "akinetic dominant" "subtypes" of PD. I have thought about this for a long time. From what I have seen in pictures, those who had extreme shaking seemed to be helped the most by DBS. I don't know if this statement has anything to do with it, but in my admitted ignorance of the subject, it seems like the "Akinetics" have a lower "satisfaction" rate and response to DBS. Am i totally off the wall here? cs

[chasmo]

Do WE see any rhyme nor reason out of the DBS cases that we have seen here? Are there any trends or are there any dbs contraindications that apply to a certain sub-population of PWP? I know that Chasmo had great response to DBS and a few others here will tell you the same, but were there any common factors among the successes that were missing in the poor responders? Is it ALL a matter of programming? Is it ALL a matter of the precision and experience of the neurosurgeon?
Or could it be something as simple as "tremor dominant" vs "akinetic dominant" "subtypes" of PD. I have thought about this for a long time. From what I have seen in pictures, those who had extreme shaking seemed to be helped the most by DBS. I don't know if this statement has anything to do with it, but in my admitted ignorance of the subject, it seems like the "Akinetics" have a lower "satisfaction" rate and response to DBS. Am i totally off the wall here? cs


Mary's story breaks my heart.

I am totally akinetic on my right side I discovered when my left IPG ran out of juice in Oct. 07.

I do not think that being Akinetic has anything to do with it at all.
I think that surgeons are getting greedy/lazy, by only making 3 passes with the MER and taking the best of the three.
I know of patients who required 10 passes to find the effective spot.
I know that programmer INexpertise is responsible for a sizeable percentage of bad outcomes.
I know that if you feel good and fade out over a couple of days or weeks, this usually indicates a bad program.
Most surgeons/programmers do not want to fix others mistakes.

You CANNOT give up Mary!!!!
keep fighting!! thats the only option you have.

Out of the thousands of DBS'ers out there, it is a small percentage who have problems with theirs. I had a guy just post in my group who inspite of having a post-op stroke and being in a coma for six weeks, said he'd do it all over, in a heart-beat.

The odds are over-whelmingly in your favor of a good result. But like any medical procedure, there is always a chance of something going wrong.
This is why I harp on getting the BEST team you can.
Programming can take a while, and many are minimally trained. This is where most problems arise.

If you life sucks, and you are laying around in pain, why not make a change?
it was and is a worthwhile gamble for many of us.


Charlie

[MKane]

My opinion for what it is worth is that there is a problem with the generator in my chest. If the surgeon had errored I would not get a favorable response at all. I did learn that when you go for programming you should take a supplty of AA (I believe) batteries with you. If the programmer's unit's batteries are weak it will have a bad outcome. I have complete confidence in my surgeon, Dr. Lenz. He gets things done. The progammers are another matter. I don't want to give up, but there is only so much I can do when I can't type or talk. I fee lbad for Dr. Lenz. He put his heart & soul into my surgery and I believe that he wants a good outcome as badly as I do. There are so many with the same prfoblems,I'm beginning to feel that Medtronic may have a number of bad pieces of eqipment out there. My friends also receuived some erroneous info when they called Medtronic. It lead me to believe that they are anticipating a liability issue.(Obvious CYA comments)

[chasmo]

My opinion for what it is worth is that there is a problem with the generator in my chest. If the surgeon had errored I would not get a favorable response at all. I did learn that when you go for programming you should take a supplty of AA (I believe) batteries with you. If the programmer's unit's batteries are weak it will have a bad outcome. I have complete confidence in my surgeon, Dr. Lenz. He gets things done. The progammers are another matter. I don't want to give up, but there is only so much I can do when I can't type or talk. I fee lbad for Dr. Lenz. He put his heart & soul into my surgery and I believe that he wants a good outcome as badly as I do. There are so many with the same prfoblems,I'm beginning to feel that Medtronic may have a number of bad pieces of eqipment out there. My friends also receuived some erroneous info when they called Medtronic. It lead me to believe that they are anticipating a liability issue.(Obvious CYA comments)

Lenz is good, no doubt about it. He is on my recommended list.

We have a couple of DBS'ers in my group that felt their IPG's were faulty. After requesting a postmortom on their IPG's they were given the run-around and finally told that their IPG's had been trashed by the hospital, which I fiind extraordinarily hard to believe.

Unfortunately we'll probably never know the answer.................

The good news is what ever was wrong has undoubtedly been fixed by now.

Charlie

[chasmo]

Do WE see any rhyme nor reason out of the DBS cases that we have seen here? Are there any trends or are there any dbs contraindications that apply to a certain sub-population of PWP? I know that Chasmo had great response to DBS and a few others here will tell you the same, but were there any common factors among the successes that were missing in the poor responders? Is it ALL a matter of programming? Is it ALL a matter of the precision and experience of the neurosurgeon?
Or could it be something as simple as "tremor dominant" vs "akinetic dominant" "subtypes" of PD. I have thought about this for a long time. From what I have seen in pictures, those who had extreme shaking seemed to be helped the most by DBS. I don't know if this statement has anything to do with it, but in my admitted ignorance of the subject, it seems like the "Akinetics" have a lower "satisfaction" rate and response to DBS. Am i totally off the wall here? cs


never was tremor dominant.
ocassionally have some laying in bed.

I had bad dystonia and dyskinesia
Non-sinemet responsive PWP and dementia are the two "biggies" As far as PD related disqualifiers go.
Chas

[MikeTTF]

Experiencing a better day than most ... so I'll add -

Just for conversation, I really don't think in my case there is a hardware problem. I believe I scared my MDS and programming PA into extreme caution with an episode of ballistic dyskinesia / Levodopa overdose at my first programming session. (long story I think I covered here before, but I can't remember)

For the record -

My surgical team @ the Cleveland Clinic was ...

Andre Machado MD PHD (personally trained and mentored by Ali Rezai MD)

Scott Cooper MD PHD (Plotting) One of the most experienced in the world at determining placement of the electrodes.

Programming PA (Jenera Scott) was personally trained by Sierra Farris PA-C MPAS, known as one of the finest DBS programmers in the world (well over 500 DBS programs)

Weak link (if there is one) is my MDS (Ilia Itin MD) ... a Ukrainian with a bit lacking in bedside manner and clear English speaking skills.

I'm currently considering a change in neuros / programmer @ the CC or a change in hospitals to IU Med / Xabier Beristain MD in Indianapolis.

Mike

My opinion for what it is worth is that there is a problem with the generator in my chest. If the surgeon had errored I would not get a favorable response at all. I did learn that when you go for programming you should take a supplty of AA (I believe) batteries with you. If the programmer's unit's batteries are weak it will have a bad outcome. I have complete confidence in my surgeon, Dr. Lenz. He gets things done. The progammers are another matter. I don't want to give up, but there is only so much I can do when I can't type or talk. I fee lbad for Dr. Lenz. He put his heart & soul into my surgery and I believe that he wants a good outcome as badly as I do. There are so many with the same prfoblems,I'm beginning to feel that Medtronic may have a number of bad pieces of eqipment out there. My friends also receuived some erroneous info when they called Medtronic. It lead me to believe that they are anticipating a liability issue.(Obvious CYA comments)

[CTenaLouise]

hello -
almost all the women I have ever known personally seen
-including txlady's daughter -has had much more problems -
betty aka blue - had such horrible dyskensia
she had to hold her arms or she would actually hit the walls flailing them?

the medtronic equipment also is much too large for women in general,

I believe in one thing - one size does not fit all,

if you can find an expert / programer to personalize the dbs system
it will need tune ups from time to time...
bless you all,

[ol'cs]

much about DBS. I've shut my mind into a world of reading about other things. I'm especially into my old career because i dream about it every night and it follows me during the day. But like Mary and others, I don't want to all of a sudden be faced with a "MUST HAVE" DBS or else. And especially one that is not all that successful. Admittedly , it's not like taking a pill, and we've got to give both medtronic and the people that are trained to administer and maintain the procedure a lot of credit, this is certainly the best thing that's come along since the 60's.
But are we missing something obvious? I dunno, something like a "split" at the end of the DBS termination, that puts out more than one "probe", so it is bound to hit the "sweet spot". WE are not bioelectrical engineers, but are THEY thinking that we are all nearly the same, when we are intensely aware otherwise? Maybe having PD and bad depresssion don't mix and somehow interferes with the DBS process. I dunno, I'm grasping at straws here, is there anything that Medtronic has come up with in their statistical analysis of the procedures that they've done tht would point to a certain type of PWP, being statistically a non-responder or a poor responder. I'm sure taht they would like to know this information above all else to avoid possible litigation. DBS isn't exactly a "new" procedure, it's been done on many people, and "glowing success stories" are notheard 99.99% of the time. I just wish that they knew more about the procedure to be able to say "you are a good candidate and you are not a good candidate" and do it with truth and conviction, that's all.

[gaykir]

It's a little curious that 3 people in this thread with issues all had DBS done in early '07... We know another guy locally who had his second DBS done in Mar 07 and he too has had problems. I wonder who QC's these devices?

[reverett123]

If Chasmo was a typical candidate presenting with dystonia and dyskinesia - which I understand to be from medication rather than PD - is DBS simply treating sinemet side effects?


never was tremor dominant.
ocassionally have some laying in bed.

I had bad dystonia and dyskinesia
Non-sinemet responsive PWP and dementia are the two "biggies" As far as PD related disqualifiers go.
Chas

[stevem53]

All I have to contribute here is from observation via my support groups..There is one man who had DBS in Dec 06, and he is a new man..Very successful!..There is a woman who had it done this past July, who had it done because she couldnt tolerate pd meds, and has had pd about as long as me..She seems to have mixed feelings about the success and has been doing the programming tour, but at the same time hasnt complained about meds anymore..Actually most of the people I know from support groups have all told me that DBS has kept them out of the nursing home..There is one woman however who had DBS done after 24 years with pd, and she is still in an advanced state, and lost her ability to speak completely after DBS surgery..So I would say on the whole that most are satisfied with the results

As with anything I guess, there are no guarantees, and as some of you have shared, it can be a nightmare when it goes wrong, and my heart goes out to all of you who are suffering, and a high five to those like Chasmo who have gotten a new lease on life

[chasmo]

Experiencing a better day than most ... so I'll add -

Just for conversation, I really don't think in my case there is a hardware problem. I believe I scared my MDS and programming PA into extreme caution with an episode of ballistic dyskinesia / Levodopa overdose at my first programming session. (long story I think I covered here before, but I can't remember)

For the record -

My surgical team @ the Cleveland Clinic was ...

Andre Machado MD PHD (personally trained and mentored by Ali Rezai MD)

Scott Cooper MD PHD (Plotting) One of the most experienced in the world at determining placement of the electrodes.

Programming PA (Jenera Scott) was personally trained by Sierra Farris PA-C MPAS, known as one of the finest DBS programmers in the world (well over 500 DBS programs)

Weak link (if there is one) is my MDS (Ilia Itin MD) ... a Ukrainian with a bit lacking in bedside manner and clear English speaking skills.

I'm currently considering a change in neuros / programmer @ the CC or a change in hospitals to IU Med / Xabier Beristain MD in Indianapolis.

Mike

Mike, is Dr Machado still doing DBS's??


The last time I looked he no longer had that specialty linked to his name. Serria is certainly one of the best. So is Roberta Greenburg and Dr. Frysinger at UVa

Dr. Rezai is in the top 5 surgeons doing DBS in the US. THe others being, Starr, Young, DeSalles and Henderson. (strictly my opinion) there are 25 or so others who can do a great job also. I would not consider any surgeon who has not done at least 100 DBS-STN's successfully.

It does make programming "problematic" to be medicated!! This is why I like UCLA's method,,,where they put you in their "Cerebral rehab"unit for a week after your second side is in and aggressively program you while unmedicated, or lightly medicated. This way you can get a 2-3 "tweaks" per day.

IMHO programing is the weak link with DBS.

TIna, when positioning an IPG on a petite lady like you, the prefered placement is in the stomach area, where it can be hidden. Just make sure the extra long extension is utilized. Sorry I don't recall the part number at the moment.

Charlie

[chasmo]

If Chasmo was a typical candidate presenting with dystonia and dyskinesia - which I understand to be from medication rather than PD - is DBS simply treating sinemet side effects?
no, I shouldhave mentioned that I had all the typical PD symptoms save tremor.

The dyskinesia did come from the 2250 mgs of sinemet I was taking, and whichmy DBS Allowed me to quit.

Charlie

[chasmo]

All I have to contribute here is from observation via my support groups..There is one man who had DBS in Dec 06, and he is a new man..Very successful!..There is a woman who had it done this past July, who had it done because she couldnt tolerate pd meds, and has had pd about as long as me..She seems to have mixed feelings about the success and has been doing the programming tour, but at the same time hasnt complained about meds anymore..Actually most of the people I know from support groups have all told me that DBS has kept them out of the nursing home..There is one woman however who had DBS done after 24 years with pd, and she is still in an advanced state, and lost her ability to speak completely after DBS surgery..So I would say on the whole that most are satisfied with the results. THe most common thing mentioned on our website is voice problems, both volume and diction.

As with anything I guess, there are no guarantees, and as some of you have shared, it can be a nightmare when it goes wrong, and my heart goes out to all of you who are suffering, and a high five to those like Chasmo who have gotten a new lease on life

most of us are quite happy with our DBS's. Let me again say, "DBS IS NOT A CURE!!"
You will typically be exchanging your gross symptoms for a more inocuous set.

DBS-STN helps movement-related disorders. IT does NOT as as rule help balance for instance. What it does do is give you better control of your legs.
With my DBS off I can go about 10 steps using a walker. With it on I can (So far) walk a mile.

Remember also each procedure done give the surgeon more experience. If I were to have mine done now, I'd expect an even better result.

Charlie

[chasmo]

I was just talking to Rick Doppler, one of my group moderators and a Medtronic ambassador, and he knows of two DBS'ers out of 300 or so that he knows that are unhappy with their DBS.

I know about 20 out of 800-900. At least half of these are due to bad surgery, by unqualified doctors and 3-4 -are due to programming isssues. THe other six, well your guess is as good as mine.
When folks ask me about their chances of success, I tell them 85%, 12% get no improvement, 3 % get worse, 2% have complicatiions, principally infections. These numbers are dirived from talks with several noted surgeons, plus my desire not to give false hope.

Charlie

[paula_w]

hi Charlie,
I just saw lynda mckenzie {mischef] and it took her a year and a half to get it programmed right. Puff didn't get her personality back for four years. This is plenty of time in which to give up.

I think your statement at PAN could have been the best description of what is going on. You said, 'there are so many [100?] good DBS surgeons and the rest should be lined up and shot.'

I think DBS is an example of experimental treatment in use and should be viewed as such.

That doesn't mean i don't believe you - it's just the way it is. You went thru a lot tol feel better - I'm glad you were blessed with benefits.

paula

[gaykir]

Well I guess I will tell Dr Malcom Stewart (and surgeon J Michael Desaloms) that he better stay in his research lab and hope they don't line him up and shoot him. Thanks too for pointing out that Medtronics can do no wrong (apparently most problems can only be attributed to incompetant medical staffs). As for our programmer, Dr Thomas, perhaps she should should have stayed at the NIH.

Since I am pretty sure that you are not a medical doctor and do not know each individuals persons medical history, I would caution you in how you present your stats in this forum. I know some of you are very Pollyanna about DBS but do not dismiss those of us who express concerns or have an experience that is different than yours.

I will accept the fact that we are in the minority here but there is another side. I believe that those who have difficulties are not posting in this forum or any other forum. They are lucky if they can function at all.

:grouphug:

[MKane]

Lasat year whhen I met with Dr. Lenz he gave me the statistics on sucessful DBS. When he called me a few weeks later to get my permission to have ABC News follow me around and film the surgery, I asked him why he selected me. His reply was that I was young (56) free of secondary conditions, i.e., high blood pressurre, diabetes, etc. and I was reasonably attractive and that the likelihood of a good outcome was high. I don't consider this a good outcome.

[CTenaLouise]

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________________

Potential complications in deep brain stimulation

We are only beginning to understand the brain and its functions and pathways. At the same time, our understanding of the causes of complex Parkinson’s disease, tremor and dystonia is somewhat simplistic. It is not surprising therefore that despite many good outcomes that can be achieved with deep brain stimulation surgery, there are side effects that can be identified. Some of these side effects are related to placement of the electrode into the brain, some are side effects related to the hardware and it’s components, and some are due to stimulation of the brain.

Side effects related to placement of the device. These include complications from local or general anesthesia, application of the stereotactic frame (scalp infection), exposure of the skull and brain surface (bleeding of the scalp or bleeding on the surface of the brain), and stroke (bleeding within the brain itself, 1% risk of significant bleeding within the deep brain from placing the electrode. This can cause stroke or death. If life threatening, the patient would need urgent brain surgery to stop the bleeding and save the patient’s life. This is often the most serious complication of open brain surgery.
http://www.neurosurgery.pitt.edu/imageguided/movement/stimulation.html

[MikeTTF]

Couple of thoughts ...

We all have our own version of PD (MJF said this and it resonates with me)

Knowing the above and then add the literal thousands of combinations of lead location / programming parameters / Rx possibles / doctor preferrences and their limited time and interest put into your case - etc.etc. and it's not too hard to understand why putting a finger right on the source of PD-DBS difficulty might be a problem. (sarcastic understatement)

Dealing with PD and DBS 'taint easy and I wonder, at times, whether the Internet is that much of a help - or just another source of confusion and dissatisfaction. :Crowded:

Mike


Well I guess I will tell Dr Malcom Stewart (and surgeon J Michael Desaloms) that he better stay in his research lab and hope they don't line him up and shoot him. Thanks too for pointing out that Medtronics can do no wrong (apparently most problems can only be attributed to incompetant medical staffs). As for our programmer, Dr Thomas, perhaps she should should have stayed at the NIH.

Since I am pretty sure that you are not a medical doctor and do not know each individuals persons medical history, I would caution you in how you present your stats in this forum. I know some of you are very Pollyanna about DBS but do not dismiss those of us who express concerns or have an experience that is different than yours.

I will accept the fact that we are in the minority here but there is another side. I believe that those who have difficulties are not posting in this forum or any other forum. They are lucky if they can function at all.

:grouphug:

[Howardh]

thread guys.

It seems the jury is still out on DBS. I cannot see myself rushing to the DBS surgeon anytime soon. Twelve perecent failure rate is toooo high in my book.

And the unneccessary drama that MKane has gone through leaves some serious questions to be asked. What MKane had to endure is a disgrace. Like MKane I am a twelve year veteran of the disease.---dx January 1996. age 46--Fortunately (for me) my progress has not advanced to any stage that would require DBS. That could change in a nano second such is the unpredictability of our disease.

[chasmo]

Well I guess I will tell Dr Malcom Stewart (and surgeon J Michael Desaloms) that he better stay in his research lab and hope they don't line him up and shoot him. Thanks too for pointing out that Medtronics can do no wrong (apparently most problems can only be attributed to incompetant medical staffs). As for our programmer, Dr Thomas, perhaps she should should have stayed at the NIH.

Since I am pretty sure that you are not a medical doctor and do not know each individuals persons medical history, I would caution you in how you present your stats in this forum. I know some of you are very Pollyanna about DBS but do not dismiss those of us who express concerns or have an experience that is different than yours.

I will accept the fact that we are in the minority here but there is another side. I believe that those who have difficulties are not posting in this forum or any other forum. They are lucky if they can function at all.

:grouphug:

Kevin's team is a good one, I have never intimated otherwise.

ALMOST invariably DBS'ers who initially respond to programming then go south have programming issues.


NO Gayle, I am not an MD. what I am is a concerned fellow PD'er who wants to giive others the info to make an informed decision. So they can avoid as many of the many pitfalls of DBS as possible. The hour or so I spend reading abstracts and studies, plus all the doctors and patients I talk to does give me some insight that the average PWP may not have.

By the most conservative statistics, a large majority of DBS-STN's are successful. Many take over a year to get programmed. This is unneccessary, HOWEVER, having said that, programming changes should be made in tiny steps and only one parameter should be changed at a time. Most of the problems I see are from over-stimulation which, unfortunately often appears identical to under-stimulation.
If your life sucks and you don't feel like there is any hope, then its time to start considering a DBS.


Charlie

[chasmo]

hi Charlie,
I just saw lynda mckenzie {mischef] and it took her a year and a half to get it programmed right. Puff didn't get her personality back for four years. This is plenty of time in which to give up.

I think your statement at PAN could have been the best description of what is going on. You said, 'there are so many [100?] good DBS surgeons and the rest should be lined up and shot.'

I think DBS is an example of experimental treatment in use and should be viewed as such.

That doesn't mean i don't believe you - it's just the way it is. You went thru a lot tol feel better - I'm glad you were blessed with benefits.

paula



1> you can never give up, there is ALWAYS hope!


2. I don't think that DBS should be characterized as experimental. Too many have been done. I would, however say it is a highly technical surgery that requires a lot of skill, especially the STN target. being off 1 or 2 millimeters can make the difference between sucess and failure. The STN is the size of an almond. So it is a hard target to hit for some.
There are 20-30 surgeons who have the skill and experience to routinely do a good DBS-STN lead placement.(this is strickly my opinion)

Micro Electrode Recording is the method of choice for most surgeons.

I know Lynda had a fetal cell transplant, whether this made a differeince I do not know.

I talked to Puff shortly after her surgery, she was estatic over the cessation of her dyskinesia. Her result was what made me start exploring it.
Can you define her personality problem a bit more??

A year and a half to program is too long IMHO. This sounds like a scheduling problem. We as patients are often too compliant with our Drs. We need to stand up for our rights.
(Like a right to a speedy programming).

Gayle;

My statistics are from 2002 and from 2 of the best surgeons in the country.
(For whatever thats worth)

Charlie

[chasmo]

Couple of thoughts ...

We all have our own version of PD (MJF said this and it resonates with me)

Knowing the above and then add the literal thousands of combinations of lead location / programming parameters / Rx possibles / doctor preferrences and their limited time and interest put into your case - etc.etc. and it's not too hard to understand why putting a finger right on the source of PD-DBS difficulty might be a problem. (sarcastic understatement)

Dealing with PD and DBS 'taint easy and I wonder, at times, whether the Internet is that much of a help - or just another source of confusion and dissatisfaction. :Crowded:

Mike


good point Mike, we are all unique in our PD, how we deal with it, and treat it.

Let me ask you this. Are you happy with your DBS results? What were your expectations, were they realized???

The interesting thing about PAN this year was all the DBS'ers that were there. It seems more and more people are having it.

IT does seem that one cannot be in favor of something without making someone angry. I Believe in what I am doing so...........sorry if I offend anyone, but it is too important not to be discussed.


Charlie

[paula_w]

Subtract the Internet from what you know and do....what do you think? lol
type..type...you've got mail,,,,type ....type
:p
paula

Couple of thoughts ...
We all have our own version of PD (MJF said this and it resonates with me)

Knowing the above and then add the literal thousands of combinations of lead location / programming parameters / Rx possibles / doctor preferrences and their limited time and interest put into your case - etc.etc. and it's not too hard to understand why putting a finger right on the source of PD-DBS difficulty might be a problem. (sarcastic understatement)

Dealing with PD and DBS 'taint easy and I wonder, at times, whether the Internet is that much of a help - or just another source of confusion and dissatisfaction. :Crowded:

Mike

[Cate]

I had DBS in March 2005, like most people I was very happy with the initial results - programming however threw up a few glitches ( like balance, gait , and speech problems) that took about 12 -18 months to finally iron out.The road to the current outcome was long and extremely frustrating.
I agree with Mike that we all have a different version of Pd, different reactions to different meds, etc, etc. Some of us don't respond well to particular medications and need many adjustments to get the best combination. I think it is the same with DBS programming.This is not to diminish the problems people experience, but to say that if you had a good initial reaction to DBS there is hope that a good programme can reproduce that good initial reaction.
Cheers
Cate

[bluedahlia]

Well I, for one, feel good knowing that if all else fails, there is the possibility of DBS. Doesn't make the future seem so hopeless.