"Results: The time frame between baseline UPDRS score and 1 year after the second side was 36 ± 15 months. The total UPDRS score off-medication at 1 year after the second PTT was reduced by 52% compared to that at baseline on-medication (p < 0.007). Percentage reductions of the mean scores comparing 1 year off- with baseline on-medication examinations were 91% for tremor (p = 0.006), 67% for distal rigidity (p = 0.006), and 54% for distal hypobradykinesia (p = 0.01). Gait and postural instability were globally unchanged to baseline (13% improvement of the mean, p = 0.67, and 5.3% mean reduction, p = 0.83). Speech difficulties, namely, hypophonia, tachyphemia, and initiation of speech, were increased by 58% (p = 0.06). Dyskinesias were suppressed in four over four, dystonia in four over five, and sleep disorders in three over four patients. There was 89% pain reduction. Mean L-Dopa intake was reduced from 690 ± 250 to 110 ± 190.
Conclusions: Our results suggest an efficiency of bilateral PTT in controlling tremor, distal rigidity, distal hypobradykinesia, dyskinesias, dystonia, and pain when compared to best medical treatment at baseline. Larger series are of course needed."
"Difficulties for speech were increased by 58% (mean 1.5 ± 0.7 vs. 1.0 ± 0.8) in the postoperative 1-year off-medication vs. baseline on-medication comparison (p = 0.06). 2 days after first PTT (n = 8), speech was improved in three, worsened in one, and unchanged in four patients. When checked at 2 days after the second PTT (n = 10), speech was improved in two, worsened in one, and unchanged in seven compared to baseline. At 1-year follow-up, speech was improved in one, worsened in five, and unchanged in four patients. The recorded speech difficulties were hypophonia, tachyphemia, and initiation of speech, but not dysarthria. At 1 year after the second PTT, seven patients out of 10 had speech therapy."
which certainly would not prevent me to apply for bilateral PTT - If I am admitted to Dr J's surgery.
Thank you. People who are interested need to read very carefully every anecdote (and everything else that is available ) re this procedure. As I've said before, when you have a neurosurgeon rearranging structures and functions in the center of your brain, it is after all brain surgery and should not be taken lightly.
You are brave. And your bravery is a good example for all of us especially chickens like myself who will most likely need this or an equivalent procedure someday.
Marc, I know there’s several postings on this procedure , is this the one not done in the states? And if it is considered brain surgery how does this compare to DBS? I know some people have speech issues after DBS as well. I’m gathering info, since my neuro wants me to consider DBS. Karen
No, this is the one done in Switzerland. I don't know a lot about DBS but in oversimplified terms it involves drilling a hole in your head and inserting 2 metal electrodes which emit electrical pulses. They also run wires from your head down your chest where they locate battery pack and a controller to control the frequency of the electrical pulses. FUS PTT is noninvasive, i.e., no blood. PTT is lesioning an overexcited signaling along a neuronal pathway. The sound waves heat up a tiny area and thereby destroy it blocking its ability to carry signals.
Marc, Thank you for the comparison. I have been researching DBS , webinars, classes, speaking directly with others who have had it done. I’m trying to get as much knowledge to make an informed decision for myself. One question about FUS , I know nothing is a cure but can help with symptoms, as a person progresses do they have to go back and have the FUS tweaked, ( for lack of a better word) as with DBS having your device adjusted? Karen
A trial will start in April in the US -search Marc's posts. Personally the stats are better for PTT if you fit the criteria of not having freezing or cognitive decline. He will probably answer also. I am very happy with my results and back to working, walking, not being in pain and no wires in my head. As for search issues - mine are much milder than the folks I know with DBS.
Lena, That’s wonderful for you. I have dystonia and some freezing , with a lot of pain. Diagnosed going on 9 years . Tremors are starting but minor . Anxiety has crept in this last year. After your procedure are you able to cut back on some meds? Also do you know where the trials are in the US? Karen
My first procedure I cut from 450mg to 300mg Sinemet. I am now on two pills - 200g a day with no difference between on and off and 70% of people are able to stop completely with bilateral so I may be able to stop but moving slow as I am only two months post op my second surgery. They have not announced centers yet but i believe there will be eight. Zero dyskinesia, dystonia and pain now. Anxiety is much better, sleep incredibly well!
Thank you for the information. I am so excited for you and if you don’t mind I will be coming back with more questions.? Do you reside in the US? Karen
I still think you are very brave regardless of what drove you to it. Most would cower, suffer and be house bound. You fought back no matter what it took. You are inspiring to me. You and others who have done this are very inspiring.
Somewhat of a mixed bag of results., but very disturbing if 6 out of 10 had new or increased speech problems. I wonder why? Does it imply bi-lateral ptt/fus is somehow affecting the brain's ability with cognition a la a stroke?
If so, a very serious issue.
"Gait and postural instability were globally unchanged to baseline (13% improvement of the mean, p = 0.67, and 5.3% mean reduction, p = 0.83). Speech difficulties, namely, hypophonia, tachyphemia, and initiation of speech, were increased by 58% (p = 0.06)"
They had an extremely small case study size = 10.
Didn't see much change in values for pre/post UPDRS. 36-33 is basically minimal. However, The standard deviations were quite large making their conclusion dubious.
Falsus in uno, falsus in omnibus applies making your comments dubious. It is a Latin phrase meaning "false in one thing, false in everything."
Apparently, you believe table 1 is comparing a UPDRS of 36 to 33 and conclude from that that the procedure is marginally beneficial.
You’ve mistaken a comparison of months to a comparison of the UPDRS score. The 1st line of table 1 is comparing 36 months to 33 months.
The relevant content is, “The total UPDRS score off-medication 1 year after the second PTT was 29 ± 11. It corresponded to a 52% reduction as compared to baseline on-medication examination (p < 0.007*).”
The reason I don't take your content seriously is because I’ve caught you on many occasions beings so eager to find fault, usually with what I say, that you skim material so fast that you make egregious errors.
I hereby pronounce all of your critiques to be of no value because they likely contain comparable mistakes.
So i misread a table. Should have looked at table 2. Never said I was Perfect. So, score now stands at Sharon 1,114 correct responses, MBA 2.
While Table 2 numbers are generally impressive, you still continue to ignore this problem:
"Gait and postural instability were globally unchanged to baseline (13% improvement of the mean, p = 0.67, and 5.3% mean reduction, p = 0.83). Speech difficulties, namely, hypophonia, tachyphemia, and initiation of speech, were increased by 58% (p = 0.06)" The implications are troublesome.
Another unresolved issue:
"Four patients received a retreatment of their first PTT to increase the lesion size during the second PTT session. " What went wrong in the 1st and why? Why 4 out of 10?
Finally,
MBA: "it is after all brain surgery " Wrong again. You should know by now It isn't. It is MRgFUS. Non-invasive; incision free.
“So I misread a table.” makes it sound like you used the wrong fork at dinner when it’s a pretty cavalier characterization for having drawn an erroneous conclusion from misreading a data table.
You still haven't responded to my earlier concerns about the bi-lateral study. I doubt that you will. these are additional issues.
#1 no specific UPDRS IV (motor complications) was done. Why not? A necessity.
"In this section, the rater uses historical and objective information to assess two motor complications, dyskinesias and motor fluctuations that include OFF-state dystonia. "
#2 no change is seen from baseline to BSS in UPDRS II, a nice 15-20% improvement is seen in UPDRS III (on-off), but we see striking MAJOR changes post bilateral = 33% in II and 51% in III. Assuming the participants were similar to the case study of 2017-2018, and the values would be representative of a much larger sample of 100s, it would appear major sustainable changes in terms of years require the bilateral intervention.
#3 Tying into point #2, the value for tremor 2nd op side (on or off) showed an INCREASE from baseline to BSS of about 27%. Yet remarkably it declined to almost nothing (0.5) 1 year later after the 2nd side. Very similar % reduction in total "tremor, both sides, on/off" which went from a 7.5 BSS to next to nothing (0.9). A claimed 91% reduction occurring 1 year after the 2nd side. Remarkable if it holds true over time.
#4 "MoCA mean scores (cognition-sharon) did not change from baseline (28 ± 2, range: 26–30), before the second PTT (28 ± 2, range: 25–30), and at 1 year after bilateral PTT (28 ± 3, range: 20–30). At 1 year after bilateral PTT, two patients scored higher and seven were unchanged, but one had a lower score by six points compared to baseline." Basically, the single or even the 2 side intervention has no positive impact on PwP with cognition or memory loss.
#5 "Sialorrhea (drooling - sharon) was an issue in five patients at baseline and was present in six patients (two newly developed, one normalized) at 1-year follow-up. Two patients had improved their swallowing issues present at baseline, but three others developed new mild to moderate difficulties between baseline and the last follow-up.
In conclusion, it would appear major sustainable changes (for tremor dominant PwP types, not cognition types) in terms of years require the bilateral intervention if available and approved. 1st side isn't anywhere near as effective assuming this case sample (10) is representative of a much larger population and not cherry picked.
PwP with any type of speech/cognition/memory issue should NOT expect to experience any major positive change from this intervention.
I don't mind being in a friendly banter with you. Let's trying keep it that way. If I stepped over the line in my previous comment, my apology.
The definition of surgery does not depend upon the instrument used according to the American College of Surgeons.
Lo and behold, they include ultrasound within their definition.
"To ensure that ... high standards of patient safety and quality are clearly understood in the rapidly changing medical profession, the American College of Surgeons adopted the following definition for surgery:"
"Surgery also is the diagnostic or therapeutic treatment of conditions or disease processes by any instruments causing localized alteration or transportation of live human tissue, which include lasers, ultrasound, ionizing radiation, scalpels, probes, and needles. The tissue can be cut, burned, vaporized, frozen, sutured, probed, or manipulated by closed reduction for major dislocations and fractures, or otherwise altered by any mechanical, thermal, light-based, electromagnetic, or chemical means. Injection of diagnostic or therapeutic substances into body cavities, internal organs, joints, sensory organs, and the central nervous system is also considered to be surgery..."
The issue here isn't the ACS definition of surgery which is almost irrelevant as I point out.
The issue is...
it would appear major sustainable changes (for tremor dominant PwP types, not cognition types) in terms of years require the bilateral intervention if available and approved. 1st side isn't anywhere near as effective assuming this case sample (10) is representative of a much larger population and not cherry picked.
Just doing one side seems somewhat of a waste. You need both sides if you qualify. People need to understand this.
True enough, the unilateral procedure does not completely resolve all issues and so no person should go into it expecting that it does.
However, I've had only one side done and if I were unable to have the other side done, having the experience I have had, I would still have one side done because the left side of my body is mostly free of Parkinson's. I believe being relieved of symptoms on one side of one's body will cause a person to feel the procedure was overall beneficial.
For example, I had tremor in both hands which made all things difficult. Now, having no tremor in my left hand is a blessing because I can eat and drink with my left hand, control the computer mouse and at least have one hand available to use.
I agree that if a person can have it done bilaterally, that would be best, but you characterize a unilateral procedure as a "waste," which in my experience, is quite misleading.
IMHO, She is not only “eager to find fault”, but I think her tone is often condescending and displays a genuine lack of concern for other forum members. Considering that she is not a PWP, I hope that she reads your post, looks in the mirror and become a worthy contributor to the forum as we know she can be.
very few legitimate citations exist, past or present, on GOF virology research.
WH just reversed the requirement that universities and their medical centers "disclose their funding affiliations with China's government, corporations or individuals".
It was all hidden for years until late 2020. Then supposedly they were required to disclose. It now goes back underground.
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Off Dyskinesia-anyone else have it? What's your fix?
Your 'teeth and gums' could be CAUSING your PD!
Has anybody had dyskinesia symptoms from Sinemet?
Levodopa vs Other Parkinson medicines against Fatigue
