Hi everyone!!..Today was my day to go to Boston for an MRI, to find out why the leads in my brain are treating my symptoms with the stimulator batteries off for 8 months..And I continue to feel better as time goes on..My balance took a turn for the worse a couple of months ago..I was falling all over the place..I would get up out of a chair and in two steps find myself on the floor, or I would start walking and and end up running from one end of the house into the bathrom and crashing into the wall to stop running out of control..On Monday that changed, and I seem to be recovering from from my balance problem

When I got down to radiology, one of the technicians read my paper work, and she asked me about the wires in my brain and the batteries inplanted in my chest, and asked me if neurology knew about it, and I said yes they do..They told me they had a special MRI machine for DBS hardware..And she said, "No we dont"..We talked for a few minutes, and I explained that I was not there for the MRI because there was something wrong with me..I was there because the DBS surgery team who performed my surgery are anxious to find out why my DBS has been shut off for 8 months, my wild dyskinsia is gone, and my mild dyskinesia after the surgery is also for the most part is also gone

She had some paperwork for me to sign stating that I was aware of the risks etc..I sat and thought about it for a while, and I asked her if she would have the Radiologist come out and talk to me..He came out and I expressed my concerns about having the MRI done..I asked what the risks were?..And he told me that most people have no problems with it, but he said we have had some minor problems..We have had some minor wire singes etc..So I sat and though about it some more..In one month from today I am going to be 63 years old..I have had pd for 14 years..I have suffered enough, and if this miracle could happen to me, then so could a disaster happen during the MRI..If that MRI singed or moved one of my leads an iota of an inch, I could be back to square one..I decide that I had nothing to gain, and everything to lose, if I had the MRI..Right now I am on a winning streak that the Drs told me would never happen, but it did, and the healing is continuing to materialize against all odds..I do not question the expertise of Dr Fox, and Dr Alterman..Whatever they did during that surgery, they made me like this..And the question that has left everyone baffled and curious, including myself is, how did this happen?..I told them that I wouldn't sign the paper..I said that if I had to sign a waver, stating that I was aware of the risks, then there must be risks, or why else would they be asking me to protect them if I end up a basket case..Well, I have found my purpose in life, and I continue to fulfill it, and I am at peace with my decision

stevem53 said: "They told me they had a special MRI machine for DBS hardware..And she said, 'No we don't'.."

stevem53 said: "I had nothing to gain, and everything to lose"

I would think that all of us are at peace with your decision!

stevem53, I also think you made a good -- and safe -- decision after weighing the pro's and cons of MRI. Sending positive thoughts your way, that your course will continue to follow this positive and encouraging trend. Even if the question "Why are the leads helping without a power source?" is never definitively answered, you can call it a miracle if you like and just enjoy the benefits. All the best.

There is no feeling in the world like sitting in that cold, clinical office, feeling pressured to sign a waiver that will protect everyone except yourself. It is so very hard to think clearly in those circumstances, but I think if I were you, I would have done the same thing.

The kicker for me was when you were told that they actually did NOT have a special machine for DBS patients, but that you had been told that they did. When medical professionals make a mis-statement like that, I'm done. What else might someone have "misunderstood", "miscommunicated" about, or "misinterpreted"? Undergoing DBS is a huge risk in the first place, and thank heaven your psuedo-DBS (what else to call it?) has done so well for you.

The most important thing is that you are at peace with your decision. Who cares if it's placebo, real, or a combination of the two? If you change your mind for whatever reason down the road, you can always go back and have the MRI. You can't undo having had it.

I hope your improvement continues

My motto is "why rock the boat"
If things are going well now , I wouldn't risk it..

Steve, it's clear to me that your DBS experience is "off the charts" exceptional. I also think your decision to decline the MRI or sign the release was wise.

Without doubt the neurosurgeons and the facilities there in Boston are top-notch. However it is hard to escape the conclusion, as you apparently did, that the MRI technicians, at the very least, were inadequately informed regarding the hazards or limitations of their equipment.

By contrast, I know that you are fully informed and confident regarding preparation and execution of springtime fishing forays in the bays and shoals of Rhode Island. Is Kevin still your fishing partner? Did those early tropical storms affect you?

Thank you for your thoughts Robert..I hope you are doing well..When I got down to Radiology and the tech asked me about the hardware in my body, she was very concerned..It gave me a bad feeling about the whole thing..And when the Radiologist told me about the risks that had actually happened, I decided that there was nothing in it for me but risks..So I made one the best decisions that I have made in my life..Don't do it

Yes, Kevin is still with me..He is a very good friend of mine, and has been for 35 years..We are having fun doing what we like do..Kevin was a fisherman for a long time..Then he got married, and got a job at General Dynamics in Quonset Point in North Kingstown, RI building submarines..He made good money over there, plus a pension..He turned 65 last November, and came back fishing..We made plans to be partners, and it has been great..The job is very challenging for a 65 year old guy, and a 63 year old guy with pd..But for better or worse it is an adventure that I would never regret

Just echoing the consensus, you made a great decision, don't have any second thoughts. Move on and enjoy the fishing, if things change up the road you can re-evaluate then. Be well....

Eric

Hopefully, I stay well enough, so I can tell them they can do an autopsy when Im gone..LOL