PTT FUS in Switzerland - One month later

[Markbit]

Not so detailed as Marc, but here is my fellings. After the surgery i was like new. No tremor, no dysknesia, no dystonia, no slowness. Then one week after i had two hard days, like withdraw symptoms, witch i assume it was of cutting meds to fast, especially C/L. I had also a lack of balance on the first 15 days. Now my dystonia has came back, not so strong, but has come back, and i had recently three days with improved slowness, witch i think it was due to stoping amantadine (forgot to go to farmacy, because i was just feeling fine) and trying to decrease again C/L at the same time, i've uped again and more stable now and got amantadine back. So, my tremor now one month after the procedure is about 90% gone on treated side, is more noticeable on stress situations, zero dyscnesias, still low fine motricity (especially on fine manual works, but much better, can dress and undress normally now). Some things i have noticed after, i can turn my head now for both sides without pain, i don't need to turn my whole body when driving to see the traffic, no more on-off periods (always on, sometimes just need to stop for a couple minutes, especially at the end life of meds. Urinary urgency was gone, has come back i think a little worse then before, but now is vanishing slowly again, it is about 50% better than before. Rolling over in bed difficulties were vanish and came back a little, such as sexual drive.

46y Dx 2009, first symptoms one year before, current 3x 25/100 sinemet, 2x 100 amantadine, and some other vitamines( D3, B1 and C).

I fell like going to start house in monopoly game, the disease it's still here, but most symptoms are gone or reduced, so i can keep playing, but it stills here, still bothering, but much more alleviated. But it is not gone, this is not a cure, but my life quality is much improved, and according to doctors, will still improving during the next year. And i am here to watch. And share. Almost reached 10 kms in my last morning run, I'll try to reach it tomorrow...

[Kia17]

Many congratulations.

[chartist]

Markbit,

Congratulations on these multiple improvements! Thank you for the detailed update!

Art

[jimcaster]

Thank you very much for the update. I hope you continue to improve!

[ion_ion]

Thanks Mark! I hope you'll get even better.

[Zella23]

So pleased to hear about your improvements, many thanks for sharing with us.

[Skydome]

Thank you for the update. ‘Always ON’ is good enough for me!

[Chriscrozer]

Where did you go for surgery and would you recommend

[Markbit in reply to Chriscrozer]

See my answer below

[Raphaekg]

Only available now in Switzerland.

[Missy0202]

That sounds amazing Mark! Big congrats!!!

[Fighttolive]

Hope things keep improving..

[MBAnderson]

Thanks Marco. Good for you. You will keep improving slowly.

Please update us again in 3 months, 6 months, & 9 months.

[Markbit in reply to MBAnderson]

I will Marc. Have a nice trip 😄

[sharoncrayn in reply to MBAnderson]

46 year old vs. 74 year old. Any thoughts? Or is it simply the amount of available neurons to work with in the basal ganglia and the substantia nigra that matters in terms of qualifying for treatment?

[MBAnderson in reply to sharoncrayn]

46 vs 74?? What's the question?

[sharoncrayn in reply to MBAnderson]

specifically, how does your PD duration in years compare with his? is dr. g looking at the age of the brain irrespective of chronological age? what are the implications for those classified as YOPD long term?

ncbi.nlm.nih.gov/pmc/articl...

[MBAnderson in reply to sharoncrayn]

That paper about covers it all. Whew.

Sorry, but I don't know those answers.

From reading the age & symptom descriptions of those who have had it, my wild guess is it is the amount of neurons that are left to work with.

(This whole aging thing is a pisser. Try to avoid it.)

[Markbit in reply to sharoncrayn]

I don't see your point. I was entering a fase of fast decline, and i had to make a choice. My neuro pushed me to DBS. Acording with what i read here and talking to others in other facebook group, this seemed to me the best option. I'm talking about life quality, not cientific papers, I have seen the pros and cons, contacted the team, went there for an assessement, verified they were valuable and i could trust them, and took my decision. What else could i do? Go into DBS? Wait for a miracle or a wonder drug that does not appear?. I read the paper, and according with what i know at the moment (and is quite a bit) and according with the solutions available now, it seemed the most valuable option. Will it work for 6 months, one year, 5, 10. I dont' know. I know that, as some others here i'm much better now. One of the doctors told me that according with the data available at this time, they believe the improvements will be for life. I hope so, If they are not, every month on the actual situation is a winning month. And i'am for sure one of the youngest persons who went trough this. And i would surely do it again (probably i will in a few years). I just run 10 Kms yesterday. I was unable to run for 6 months before PTT. No dyskinesias, few tremor, no off periods. Knowing it's not a cure, could not expect much better.

[Hidden in reply to Markbit]

Thank you for sharing your experience! This gives me much needed hope.

[sharoncrayn in reply to Markbit]

"I don't see your point."

10-15 years ago, PD was seen by most as an old man's disease due to neuronal death. Aging was the primary cause or factor according to mainstream thinking.

Since starting my 2 support groups 11 years ago, I have seen a shift towards PwP now being younger than 50 and many more females (from 90-10 to 60-40).

SO IN IMO, PD IS ALL ABOUT THE AGE OF THE BRAIN, NOT CHRONOLOGICAL AGE OR GENDER.

The implications for EARLY DIAGNOSIS AND TREATMENT is significant because the earlier the better the chances of slowing the progression.

I have no agenda or preconceived ideas regarding MRgFUS Pallidothalamic Tractotomy (the correct term). Nor Dr. Gallay. The same holds true for the 160,000+ surgical DBS interventions (which were approved in the US in 1997). Nor the new Vercise Genus DBS model. But both interventions have risk factors.

We just know whole lot more about risk with DBS for obvious reasons.

Dementia and subthalamic deep brain stimulation in Parkinson disease (Bove et al, 2020) included a 10 year follow-up of 104 patients. "Male sex, higher age, hallucinations, lower frontal score at baseline, and perioperative cerebral hemorrhage were predictors of dementia (30% > 10 years)" which is understandable in any context.

Meta-analysis comparing deep brain stimulation of the globus pallidus and subthalamic nucleus to treat advanced Parkinson disease, Lie et al, 2014

"Six eligible trials containing a total of 563 patients were included in the analysis. Deep brain stimulation of the GPi or STN equally improved motor function, measured by the Unified Parkinson's Disease Rating Scale Section III (UPDRSIII) (motor section, for patients in on- and off-medication phases), within 1 year postsurgery. The change score for the on-medication phase was 0.68 (95% CI - 2.12 to 3.47, p > 0.05; 5 studies, 518 patients) and for the off-medication phase was 1.83 (95% CI - 3.12 to 6.77, p > 0.05; 5 studies, 518 patients)."

Efficacies of globus pallidus stimulation and subthalamic nucleus stimulation for advanced Parkinson's disease: a meta-analysis of randomized controlled trials, Tan, et al, 2016

Conclusion: GPi and STN DBS significantly improve advanced Parkinson's patients' symptoms, functionality, and QOL.

Both studies examined clinical trials, not case studies.

Sharon

[PalmSprings]

So very happy for you!

[AngloAmericanGothic]

Delighted with your results. My husband who has advanced PD said he was ready to go to Switzerland to get this done. How does one go about finding out if one is qualified for this procedure? We are both stuck. C/L does not work for him. Any information would be much appreciated.

[Markbit in reply to AngloAmericanGothic]

The procedure is only made at Sonimodul.ch in Switzerland, but i think there are some trials to begin in USA. But the PPT must be done by an experienced team, and i believe they are the most experienced one. They know exactly what they are doing. My procedure took about 2 hours, and they told me the first ones took about 8 hours. It's a big learning curve. For the procedure you must contact the team, and they will lead the process.

[AngloAmericanGothic in reply to Markbit]

I mentioned PTT FUS to my husband's MDS and she got cross with me - obviously because I am not the expert. She said if anything my husband may be a candidate for DBS. My understanding is that DBS sort of came in and captured the spotlight. I would really like to know if Ptt FUS is beneficial for those like my husband who are pretty advanced . I am quite disheartened. He has just started rytari as c/l has not worked for a long time in fact makes the tremors so much worse. No noticeable difference - a bit foggier and more drool if that is possible. I have been looking at Fus for some time but would like to talk to a real person. MDS also said I should not believe all the slick marketing because not everyone responds favorably. Sigh. I apologize for unloading but may I ask your level of PD and how you came to choose this treatment. My husband is a very solid '4' and is almost incapacitated.

[jimcaster in reply to AngloAmericanGothic]

I think your best bet is to contact the SoniModul Clinic directly. I have attached a link below with contact information so you can either send them a message or call them. Good luck!

sonimodul.ch/contact-us/

[Markbit in reply to AngloAmericanGothic]

Hi. I think that only the team in Switzerland can tell if your husband is suitable for the FUS intervention or not. One thing i have learned is that we have to do our own choices. Your husband has to live with PD, not his doctor. He can advise him, but you and him have the right to choice. Not decide by you. Of course when you take a decision, you take a risk. I don't know my level of PD, i know i've made a neurological examination on my assessment in October 2020 and the results were this:

Neurological examination (>15 hours without L-Dopa intake and no agonist intake since 24 hours):

UPDRS: 3/18/51.5/8 = 80.5/195

Neurological examination: (70 minutes after 150 mg L-Dopa equivalent intake):

UPDRS III: 24/104

That was before my intervenction. Anyway, if you contact them, they will ask you to send some medical reports as well as some videos, and i think that with those informations, Prof. Jeanomod can tell you if your husband will need to go to a personal assessment, or if there is an exclusion by any reason. You don't lose anything by trying. As responding favorably or not i advise you to read the papers published and judge by yourself. The links are at sonimodul site. I have seen, during my stay at Switzerland someone much older than me who also had PTT and the diference was remarkable. Do not lose your hope, and stay safe.

[Goldencbc]

Good news!

[Markbit]

10 Kms, done...

[Kwinholt in reply to Markbit]

Awesome!!!! Karen

[tropical999]

Appreciate the detailed update. I hope you continue to improve

[Kindhuman]

Can I ask how much did the procedure cost? I wonder if any insurance would help pay.

[Markbit in reply to Kindhuman]

It costs 35.000 CHF. You will have to convert, but according to Lena, was about 40.000 USD. All included, except for traveling and hotels. It is covered by swiss NHS and swiss insurance, as far as i can tell.