Hello;

I just found this forum today. My husband has had PD for 16 years, and is enrolled in a new trial/procedure testing called "spheramine". Basically, dopamine producing cells are implanted into the brain of the patient, and improvement in the PD sysmptoms are reported to be around 40%. Without going into a lot of details, what I would like to know is has anyone here had this surgery, or know anyone who has?

My husband is scheduled for surgery next month, and we are having second thoughts about the risks involved. We are hoping to find another of the 60+ patients who have been involved in these trials.

Any first hand info anyone has would be appreciated.

Thank you

Lyn

and will answer you shortly. She is one of the first recipients of spheramine therapy.

Charlie

Sorry - I'm just a few days late in responding.

Yes, I was one of the first group. We had the implants unilaterally (one side only) and it has been 6 years. I (nor any of us) are cured, but I shudder to think how progressed I would be based on the speed that I was going down.

Remember, this is NOT for everyone. You have to be reactive to dopamine, be in good general health, and willing to commit the rest of your life to this trial. Yes, it's risky - but so is living with PD. You could fall, choke, and have complications of a dozen or so from this dreaded disease.

The results over 4 years are posted online. you can send me a private message and I'll be glad to talk with you.

Phase II is stil recruiting but some of the 68 had surgery nearly a year ago.

talk soon
Peggy

Hi Peg

I sent you a PM

THank you

Lyn