Beware of ultrasound treatment for Parkin... - Cure Parkinson's

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Beware of ultrasound treatment for Parkinson’s disease!

Pitchfixer profile image
53 Replies

I participated in a clinical trial of focused ultrasound treatment for Parkinson’s disease. I was treated at Stanford University hospital. 15 participants were given the treatment, but I was one of the five participants assigned to the placebo group. The assignment was blinded.to participants. In the aftermath of my fake treatment, I thought that I had increased muscle flexibility. But as time went by, I started to think that I has been assigned to the placebo group. This was disclosed when participants’ assignments were revealed. Instead of regarding my receipt of no treatment as a message from God that I should forego it, I elected to avail myself of the offer of getting the real procedure. I was treated two weeks after the study was unblinded. For the treatment, I was helmeted and attached to a machine that looked like an MRI scanner, and I counted 10 zaps of ultrasound before I was freed from the restraints. Each administration of the ultrasound felt like a dozen migraine headaches. I don’t recall what specific part of my brain was targeted except that it was in the right hemisphere because my primary symptom of Parkinson’s was a tremor in my left wrist. I should add that the clinical trial’s primary purpose was to determine whether the treatment could help to prevent dyskinesia. I had started experiencing very mild symptoms of such involuntary muscle twisting, and the treatment did result in the disappearance of those. However, the left wrist tremor remained unchanged.

In the months following the treatment, I returned to Stanford at increasingly spaced intervals for follow-up testing—after one week, followed by two, four (one month), three months six months, and then one and two years. At these follow-up visits, I was asked not to take any medications earlier on the day of the visit, and after a series of tests, I was administered a fast-acting dose of carbodopa-levidopa, and after an interval of about a half hour, I was asked to move various body parts once again. My fluidity, gait, and balance in walking were also observed both before and after I was given the medication. While I did not record just what instruments were administered on these return visits to the clinic, I recollect that they focused primarily on my physical condition. There were also tests of my cognitive abilities, but nothing to examine how the treatment of the brain had affected my mind in the emotional realm. Meanwhile, back in everyday life, things were falling apart. On the night following the treatment, I experienced hallucinations for the first time. These manifested themselves in two ways. First, I was looking at pillows and pieces of furniture and seeing people. That was not frightening, but it certainly was peculiar. After I returned home, one day I addressed four bales of sound insulation, imagining they were nurses. Second, I was seeing things that weren’t there that were interfering with my ability to see what was actually in front of me. Sometimes it looked as if portions of my memory had been cut loose and were floating by in my field of vision. As a classical violinist, I had spent countless hours looking at music, and some of these floating objects appeared to be sheets of music.

In the aftermath of the treatment, I drove into a mall in Sunnyvale that was adjacent to a business park and couldn’t find my way out. I had to dial 911 to get law officers to lead me out. Once I was back on my home,turf, I couldn’t find where I’d parked my vehicle in the lot of a familiar music store and had to call the proprietor to find me and take me back. I was blocks away. I even made a wrong turn on the way home on the one road available fo get to and from my house (Spoiler alert: these issues have fortunately abated). Sometimes I had trouble identifying which was the right way to go at an intersection. That confusion, and my erratic driving, got my driver’s license suspended, putting me in a compromised situation because I was living in a fairly remote area with no public transportation.

The worst outcome of the ultrasound was that it seemed to have turned off the left hemisphere of my brain, leaving me with no executive function and at the whims of my kind and compassionate but often idiotic right brain. I stopped keeping records and paying some bills, after six decades of building a spotless credit record of flawlessly paying bills on time and building up a credit rating into the 800s. Worse yet, my compromised judgment left me vulnerable to scammers, who preyed on my emotions with one hand, only to try to empty my pockets with the other. Many of the perpetrators are quite skilled at what they do; once I had wised up, I was able to avoid allowing a cartel to use my bank account to launder money, and I gave a caller most of the information on a credit card, but once I had declined to provide the security code, saying, “But that would allow you to make purchases and charge them to me,” exclaimed, “Motherfucker!”, and slammed down the phone. The storyline for that scam was that the company would consolidate my debts and reduce my monthly payments. I received a call from the same company on each of the next two days to solicit my business, and I told them that I wouldn’t do business with them unless they could show me where in their training manual it said to call prospective clients motherfuckers. But I digress. Getting wind of my self-destructive behavior, some of my friends began to become appropriately concerned. The capstone of my folly was selling just over an acre of land in a neighbor who had hounded me to do so, which I agreed to do at a small fraction of its market value. Not only did I sign a bill of sale that plainly showed that the price listed on it revealed that he was paying me less than the amount we had agreed upon, but the document also smuggled in as the description of the property I had sold him not only my entire parcel of land, more than seven acres, but also all of the buildings on it. I didn’t catch any of that until I had finally recovered from the surgery and went online to check my property deed, only to discover that it has his name on it.

.. to be continued

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Pitchfixer
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53 Replies
kaypeeoh profile image
kaypeeoh

Very scary but was this focused ultrasound?

kaypeeoh profile image
kaypeeoh in reply to kaypeeoh

Sorry I missed this on the first reading: "I participated in a clinical trial of focused ultrasound treatment for Parkinson’s disease. "

park_bear profile image
park_bear

OMG.

kaypeeoh profile image
kaypeeoh in reply to park_bear

Yeah, I'd planned to ask my neuro about FUS but now I dunno....

MBAnderson profile image
MBAnderson in reply to kaypeeoh

Where you have it done is what determines the out come

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

When I chose to participate in the clinical trial, I learned that the two sites at which It was available in California were Stanford and UCLA, but UCLA’s participation was just beginning. I chose Stanford, despite the greater distance I would have to travel and the additional cost, because they were more experienced.

Pitchfixer profile image
Pitchfixer in reply to kaypeeoh

My neurologist at Scripps in La Jolla describes the procedure’s outcomes as reductions in dyskenisia, rigidity, and bradykinesia, which I’m going to have to look up.

Pitchfixer profile image
Pitchfixer in reply to Pitchfixer

Sorry. Dyskinesia.

Pitchfixer profile image
Pitchfixer in reply to Pitchfixer

Sorry, dyskinesia

Pitchfixer profile image
Pitchfixer in reply to Pitchfixer

Bradykinesia is slowness of muscle movement, a characteristic symptom of Parkinson's disease.

Pitchfixer profile image
Pitchfixer

on balance, I regret having gotten the treatment. I had not considered how the mind is related to the brain..Check back for the story’s conclusion . I have no idea of how many other study participants faced the same challenges,

MBAnderson profile image
MBAnderson in reply to Pitchfixer

what was the doctor's name?

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

Dr. Harrison

MBAnderson profile image
MBAnderson in reply to Pitchfixer

Thank you.

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

sorry, I clumnsily sent you a. Blank. Mu procedure was on June 3, 2021. Because I had been in the placebo group initially, I surmise that the 15 participants in the experimental group had already received it. My procemdure came two weeks after the experimental trial control group’s’ assignments had been unblinded, assuming the we were all told at the same time. Com to think of it, this was disclosed to me at my last in-person follow-up in late May. So some people in the experimental group may well have been operated on after I. I can’ be sure of the sequence.

MBAnderson profile image
MBAnderson

Thank you Pitchfixer. You are doing everyone a service.

This isn't the first such disaster to come from Stanford. (It is the 4th I know of.) They are apparently unfazed by their bad outcomes as they keep doing it - wrong.

Keep in mind it is the doctors, not the procedure.

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

The procedure is described as a guided high intensity focused ultrasound ablation of the right globus palidum interna. I don’t know why this was the chosen location for the ultrasound. Has anyone looked at how the procedure’s outcomes are correlated with the locations of the targeted sections of the lbrain?

MBAnderson profile image
MBAnderson in reply to Pitchfixer

The correlation is the answer.

It seems to me the outcome is a result of where the ablation occurred. The problem arises from doctors that don't hit/ablate the (stated) target.

MBAnderson profile image
MBAnderson in reply to Pitchfixer

I've had bilateral MRg FUS PTT (pallidum-thalamic tractotomy) in Switzerland whose target is a pathway between the pallidus and the thalamus .

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

what resulted from the treatment? Is it invasive? What do all tue letters in i it’s acronym stand for?

MBAnderson profile image
MBAnderson in reply to Pitchfixer

FUS PTT stands for MRI guided focused ultrasound pallidum-thalamic tractotomy.

Same procedure as what you had.

MBAnderson profile image
MBAnderson in reply to Pitchfixer

What was the date of your procedure?

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

I went online today and accessed my Stanford medical record, I found out thst the full name of the physician involved in the study was Casey Harrison Halpern, but that the surgeon who performed the procedure was Prjman Ghanouji. Are they the ones associated with the other three failures? Is there any recourse? Are physicians protected by the releases we sign to participate in such studies? What can be done if the procedure is.generally successful and the failures result from poor execution? What be done to prevent this from happening to others?

On a more personal level, the results from an extensive battery of neuropsychiatric tests at an evaluation Stanford administered at my request confirm that I had declined in Executive Function relative to my preoperative levels the year before, in line with what I have felt and, unfortunately, demonstrated.

MBAnderson profile image
MBAnderson in reply to Pitchfixer

I'll ask doctor's names.

I doubt you have much legal recourse unless the doctor was impaired or unfit, but I don't know that.

You seem perfectly articulate. Maybe the decline is the progression?

kevowpd profile image
kevowpd in reply to MBAnderson

"Keep in mind it is the doctors, not the procedure."

I wonder what 'Parkie' would make of this comment?

MBAnderson profile image
MBAnderson in reply to kevowpd

What do you mean?

I was saying simply, as with all procedures the doctor's skill determines the outcome

kevowpd profile image
kevowpd in reply to MBAnderson

"the doctor's skill determines the outcome"

Was Parkie' s poor outcome due to the skill levels of her treating doctor?

MBAnderson profile image
MBAnderson in reply to kevowpd

It would seem so. What else would account for it considering other doctors do the same procedure and don't have bad outcomes?

kevowpd profile image
kevowpd in reply to MBAnderson

Probably an imperfect patient selection process. You can't say for sure whether someone will react poorly to a procedure like this, even if the 'target' is successfully hit.

Which doctors havent had a bad outcome?

MBAnderson profile image
MBAnderson in reply to kevowpd

I agree all doctors have bad outcomes.

What matters is the % of bad outcomes. The issue is whether some doctors have more than others.

Fighttolive profile image
Fighttolive

Im sensing this was one of the 4 Marc, just a duplicate post

MBAnderson profile image
MBAnderson in reply to Fighttolive

No, I've never read Pitchfixer's story before.

I am afraid for every person with such an outcome who is willing to tell their story, there are many who are not willing to do so. Very understandable.

Pitchfixer profile image
Pitchfixer in reply to MBAnderson

Of course, I urge people who have gotten the procedure to speak out above their experiences. The purpose of clinical trials is to find the consequences of various treatments.

seamusw profile image
seamusw in reply to MBAnderson

You said you know of four others. Are there reported anywhere? I’ve believe I know of one other.

MBAnderson profile image
MBAnderson in reply to seamusw

4 altogether, leaving 3 others, one (Mr. Pettibone) of whom posted most likely on Facebook

seamusw profile image
seamusw in reply to MBAnderson

thanks I’m assuming the other two haven’t posted

MBAnderson profile image
MBAnderson in reply to seamusw

Right

jeeves19 profile image
jeeves19

Sorry for your troubles mate, but - a bit off topic -hell you write superbly. Such accurate prose and punctuation. THAT part of your mind still works brilliantly 👍😊.

seamusw profile image
seamusw in reply to jeeves19

I was thinking the same thing;)

Pitchfixer profile image
Pitchfixer in reply to jeeves19

Thank you for your kind words. I’m expanding the post into a portion of my autobiography,

Pitchfixer profile image
Pitchfixer in reply to jeeves19

Thanks! See my response to Seamus just above or below.

Cons10s profile image
Cons10s

do you happen to know what your skull density was? That number comes from your CT scan.

Pitchfixer profile image
Pitchfixer in reply to Cons10s

I have no clue!

Cons10s profile image
Cons10s in reply to Pitchfixer

The reason I ask is that I was to be "patient #3" at Stanford, but was eliminated because of my "SDR" skull density ratio of .28. Then an interesting thing happened. I noticed on the Clinical Trials website that the study inclusion Criteria and Exclusion Criteria was changed in reference to skull density.

Here’s what was removed from the Exclusion Criteria,

20. Subjects who have an Overall Skull Density Ratio of less than 0.40 as calculated from the screening CT.

This was removed sometime between October 15, 2021 and March 24 2022.

Lower skull densities are problematic for this treatment as heating the target is more difficult.

Trixiedee profile image
Trixiedee in reply to Cons10s

This wasn’t the FUS PTT trial. It was before that and the target was the globus palidum.

Cons10s profile image
Cons10s in reply to Trixiedee

it was the FUS PTT trial

Trixiedee profile image
Trixiedee in reply to Cons10s

Pitchfixer didn’t have FUS PTT. That’s what I meant.

seamusw profile image
seamusw in reply to Cons10s

did you ever find out more about the removal of the SDR as an exclusion criteria?

Trixiedee profile image
Trixiedee

sorry to hear of your disappointing results. Was a tremor in your left hand your only symptom?

Pitchfixer profile image
Pitchfixer in reply to Trixiedee

dyskinesia and stiffness also

Trixiedee profile image
Trixiedee

when I had FUS PTT at Sonimodul it didn’t hurt at all. Glen who was treated at Stanford also complained of excruciating pain. Maybe they are doing something differently.

Pitchfixer profile image
Pitchfixer in reply to Trixiedee

where’s Sonimodul?

Trixiedee profile image
Trixiedee in reply to Pitchfixer

in Switzerland

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