[lurkingforacure]

Here's the link:

http://www.forbes.com/2009/05/21/ste...y-tourism.html

[chasmo]

I;d have to be pretty darn desperate to try these "cures". The article does not say how many people did not survive these treatments or had acute problems after the procedure. I have a feeling that the number is not inconsequential. I am afraid that the use of stem cells is very far in the future. Until we can unlock the genes of these cells and get them to reliably do what we want them to, these cures will be "snake oil" and nothing more.

Charlie

[lurkingforacure]

Originally Posted by chasmo

I;d have to be pretty darn desperate to try these "cures". The article does not say how many people did not survive these treatments or had acute problems after the procedure. I have a feeling that the number is not inconsequential. I am afraid that the use of stem cells is very far in the future. Until we can unlock the genes of these cells and get them to reliably do what we want them to, these cures will be "snake oil" and nothing more.

Charlie

Maybe....but on the PBS special "My dad, my brother, and me" they featured a guy who had adult stem cells and the before and after videos were nothing short of spectacular, to us. The gentleman who had the treatment done lived another twelve years after implantation, and the special said when he died, he died of a non-PD related cause. Who knows, but he got twelve great years after his treatment, and that's impressive.

Since so few qualify for DBS under the increasingly tightening requirements, and the risks are tremendous, I can't blame those who are so miserable they will try this, including us. We are seriously considering this. I have not read anything adverse on adult stem cells yet, other than it didn't work or give as much improvement as hoped, and in that case, it's just a waste of money....kinda like what we already have, money month after month for symptomatic control only, which is often unpredictable and insufficient for a great many PDers.

[chasmo]

Originally Posted by lurkingforacure

Maybe....but on the PBS special "My dad, my brother, and me" they featured a guy who had adult stem cells and the before and after videos were nothing short of spectacular, to us. The gentleman who had the treatment done lived another twelve years after implantation, and the special said when he died, he died of a non-PD related cause. Who knows, but he got twelve great years after his treatment, and that's impressive.

Since so few qualify for DBS under the increasingly tightening requirements, and the risks are tremendous, I can't blame those who are so miserable they will try this, including us. We are seriously considering this. I have not read anything adverse on adult stem cells yet, other than it didn't work or give as much improvement as hoped, and in that case, it's just a waste of money....kinda like what we already have, money month after month for symptomatic control only, which is often unpredictable and insufficient for a great many PDers.

John;
"Since so few qualify for DBS under the increasingly tightening requirements, and the risks are tremendous"

Dr. Ronald Young, a member of my group would beg to differ. HE has yet to lose a patient after 900 procedures. Screening has gotten better but if you are a typical PWP whos meds are not working that great, You can get a DBS by a top-flite surgeon, assuming you do not have another condition that would preclude any elective surgery. The risks are NOT "tremendous". they are about 5% now with a top surgical team and consist mainly of post op infections, and to a lesser degree lead erosion, lead or connector failures. HAving had a postop infection of my IPG pocket, I can tell you it was a pain, but one can deal with it.
WOuld I go through it all again? IN A HEARTBEAT!!

Until I see a real study, NOT one success story paraded for everyone to see, I will stick with DBS as it is a proven protocol. I should say that there is a study out that says that 6 well known centers were studied and they had a complication rate of 20% again postop infections with lead erosion, lead/extension breakage, connector failure. One of mine tests out at 2000 0hms but it is not used in my settings, so I am lucky in that respect.
It is a confusing issue to be sure, but the bottom line is DBS works well for the great majority of us.

Charlie

[lurkingforacure]

Thanks Charlie, that is great to hear. But since (they now admit) 40% of PDers have or will get dementia, doesnt' that disqualify a huge number from getting DBS? I guess if you opt for DBS before you start to lose it, you can get it, but if you wait too long to take the test, no go.

Do you know if anyone has gotten DBS and later developed dementia? Now THAT would be great, if getting DBS earlier prevented the dementia-know any study either way about that?

I really appreciate your sharing your vast knowledge and experience about DBS with all of us.

[chasmo]

Originally Posted by lurkingforacure

Thanks Charlie, that is great to hear. But since (they now admit) 40% of PDers have or will get dementia, doesnt' that disqualify a huge number from getting DBS? I guess if you opt for DBS before you start to lose it, you can get it, but if you wait too long to take the test, no go.

Do you know if anyone has gotten DBS and later developed dementia? Now THAT would be great, if getting DBS earlier prevented the dementia-know any study either way about that?

I will find out if there are any studies about DBS possibly delaying or stopping the onset of dementia.

PERSonally, my feeling is that it doesn't affect it.

Dementia normally occurs later on in PD progression and a DBS would have already been performed.

Charlie

[chasmo]

Originally Posted by chasmo

I will find out if there are any studies about DBS possibly delaying or stopping the onset of dementia.

PERSonally, my feeling is that it doesn't affect it.

Dementia normally occurs later on in PD progression and a DBS would have already been performed.

Charlie

here is the definitive word on DBS and dementia.


HI Charles,
There is no evidence that DBS hastens or slows dementia in PD. The number most people use is PD patients have a 30% lifetime risk of dementia although more subtle problems occur more frequentily. All centers I know will not operate on a demented patient.