Good news from Switzerland : I was awake as... - Cure Parkinson's

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Good news from Switzerland

eschneid profile image
14 Replies

I was awake as usual when this came across from Dr. Marc Gallay....

Dear patients and families, news as promised. I was able to meet our investor this week. He is very motivated and I have his agreement in principle to move forward. The centre will be located in Bern (our capital) (the exact location is Ostermundigen). It's a brand new building, equipped with a state-of-the-art 3 Tesla MRI scanner. There is a clinic nearby and a nice hotel and restaurant 50 metres away. The centre is 100 metres from a railway station that connects with Berne's main railway station in 5 minutes 3-4 times every hour (from Zurich airport, 1h30 by changing train only once to our door). If you have any questions before the official opening (July-August), please contact us (Mrs Rossi and myself) at: info@sifus.ch. Of course more information will follow. Best regards. Dr. Marc Gallay

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eschneid profile image
eschneid
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14 Replies
fnedorez70 profile image
fnedorez70

if you are considering ptt fus in Switzerland I would wait a while for them to get established. The procedure by itself is not very predictable in terms of outcome and adding a new variable is only going to diminish the probability of the positive outcome.

MBAnderson profile image
MBAnderson in reply tofnedorez70

What is the new variable?

eschneid profile image
eschneid in reply toMBAnderson

Marc,

The new variable is either that no one has seen a brain as large as yours or the new variable is just the new set-up, new location, new team sans Dr. J and new doctor in charge, I'm guessing.

fnedorez70 profile image
fnedorez70 in reply toeschneid

You got it!

pdpatient profile image
pdpatient in reply toeschneid

 eschneid . Your response makes no sense. I hope you are not mocking  MBAnderson . His question was genuine. fnedorez70 's comment about a "new variable" is random. Your unnecessary response is mean and snarky!

eschneid profile image
eschneid in reply topdpatient

pdpatient,

I speak to Marc weekly. He is one of my go to people for advice. I trust him, and vice-versa. I was just having a little fun. Didn’t mean to upset you, that's not why I'm here. I hope you are feeling good and hanging in, like I wish for everyone here.

Eric

Bolt_Upright profile image
Bolt_Upright

As there is only one hotel in Ostermundigen that I can see, and it is in a new building beside a much larger new building, and both are 40 meters from the train, I am guessing this is the place, if you want to walk around: google.com/maps/@46.9566381...

Despe profile image
Despe in reply toBolt_Upright

Bolt, still using google??????????????????????

MBAnderson profile image
MBAnderson

I am hoping fnedorez70 will elaborate on his comment, "The procedure by itself is not very predictable in terms of outcome..."

fnedorez70 profile image
fnedorez70 in reply toMBAnderson

Mark, I basically describe my own experience. I saw improvement after the first procedure only to go to significant deterioration after the second. There are still some improvements : one of the most welcome is the lack of dystonia . However I see continuous deterioration of my balance, and many other PD related symptoms. This is in stark contrast to continuous improvement after the first procedure. I asked the surgeon before the second procedure if I should have it done and I was told that I could see pretty good result for the next year or two. I understand that in Switzerland they wouldn't do the second procedure for 1 year after the 1st one and only if there was a significant deterioration in PD. As part of the clinical trial I was supposed to have the second one done after 6 months which was delayed to 9 mo in my case. I can tell you more if you want to call me.

MBAnderson profile image
MBAnderson in reply tofnedorez70

I'm sorry you didn't get better results.

May I ask how is your tremor? And where did you have it done and do you know your skull density ratio?

I had the 2nd side done 13 months after the 1st side. I have serious freezing/gait problems, speech and balance issues, too, which I attribute to the progression.

Marc

fnedorez70 profile image
fnedorez70 in reply toMBAnderson

Marc,I don't have tremors and never had them I don't remember what my skull density was but I remember that it was in acceptable range

MBAnderson profile image
MBAnderson in reply tofnedorez70

Was dystonia the primary symptom which you sought to relieve with FUS?

fnedorez70 profile image
fnedorez70 in reply toMBAnderson

No, Marc it wasn't I had freezing ( i still do although somewhat improved), off periods, ni gait issues, bradykenisia , crazy sensitivity to animal proteins

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