PTT FUS - Negative Stories

[Parkinsonjisung]

Ive been reading all the positive stories about PTT FUS. But I find it's always good to get both sides of the story. Does anyone have any negative stories about the procedure where symptoms actually got worse or it had no effect? Not trying to put a downer on the procedure but I find it hard to believe that it's as wonderful 100% of the time for all patients as portrayed on this forum.

[Farooqji]

Yes offcourse exceptions are there (worsening of symptoms)

[ion_ion in reply to Farooqji]

Who had that?

[Farooqji in reply to ion_ion]

I can't tell without permission of the individual. He is in our WhatsApp group

[Hidden in reply to Farooqji]

Without revealing who he is can you share what happened?

[Farooqji in reply to Hidden]

His procedure was performed 2 weeks ago. He hasn't shared the details as of now. Only reported that he has much worsened as compared to before FUS. We are not feeling it appropriate to probe him at this moment when he is passing through the crisis

[Despe in reply to Farooqji]

Which procedure did he have, PTT or the FUS performed in the US?

[Farooqji in reply to Despe]

Switzerland by Dr. J

[Despe in reply to Farooqji]

Oh, that is unfortunate.

[Parkinsonjisung in reply to Despe]

Thanks Farooqji for sharing. I think it's important that this kind of information is shared before people go flying off to Switzerland expecting magic results. Everything has it's risks and people should be aware. Please share more if the patient decides to give more information.

[ion_ion in reply to Parkinsonjisung]

Totally agree but on the other hand we had just the statement of person without a clear description of what happened. We do not need to identify who is the person but at least some info about the procedure outcome could be very helpful.

[lenamm in reply to ion_ion]

It is totally up to that person to choose to tell their story. For most of us things go up and down the first three months. That person is the first I have heard with a negative reaction and I looked far and wide. It's important to remember this is a brain surgery and why it is not done if meds are working. This person also requested nothing be shared on HU or facebook yet about their experience.

[Trixiedee in reply to ion_ion]

ion_ion - they haven’t given a clear description of what has happened.

[Trixiedee in reply to Farooqji]

The person in question specifically asked that their situation was kept private and not shared in any forum. It’s incredibly disrespectful to betray their confidentiality.

[ion_ion in reply to Trixiedee]

I do not think someone said the name of the person so the confidentiality was respected. It was just the idea the FUS did not go well at least for the moment and that is good to know. If would me I would not keep that confidential. We need to know about both positives and negatives of FUS so we make the right decision.

[Trixiedee in reply to ion_ion]

Well this person doesn’t want us discussing it here and they are entitled to request that.

[Trixiedee in reply to Trixiedee]

Confidentiality isn’t just about revealing someone’s name.

[ion_ion in reply to Trixiedee]

I totally agree it is his/her decision to say or not to say. My point was that no confidentiality was broken here.

[Trixiedee in reply to ion_ion]

As I said before, confidentiality isn’t just about disclosing someone’s name. They asked that their information wasn’t shared publicly. This is a public group but the group it was shared in was completely private.

[Farooqji in reply to Trixiedee]

I haven't disclosed his name. Furthermore his request came just yesterday which I am bound to honour and will not further say a word about it on this forum. I can't even think of betraying anyone trust.

[MBAnderson]

I understand everyone would like more details, but those who are in contact have told us that he would prefer that his health not be discussed at this time. We need to respect that. If I were not feeling good, I would not want to read other people's speculation as to why that might be.

I hope he/she understands that everyone on the forum are totally supportive and wishing only the best.

I am confident her situation will improve, significantly, over the next couple months.

Marc

[Farooqji in reply to MBAnderson]

How I make you people believe that I have not and will not disclose her name and will not further discuss it after her request . BTW Trixiedee has removed me from the whatsapp group without giving me the opportunity to clarify myself. Is that ethical??????????

[MBAnderson in reply to Farooqji]

TRy a private message. It's not a question of ethics. If it is, she is ethically bound to honor her commitment to protect somebody's privacy.

[Farooqji in reply to MBAnderson]

BTW concealing the negatives of the experimental procedure and spreading the fairy tales about it is ethical???

[MBAnderson in reply to Farooqji]

I understand your frustration.

That's exactly the kind of comment here she doesn't want to hear and allow me to explain why -- again.

Despite what some people think, having a function and/or structure of the brain altered by a brain surgeon is brain surgery. It's a big, hard decision. Perhaps the hardest of one's life.

After someone has made the decision, spent a lot of money, endured an arduous procedure, and is struggling postop, they don't want their decision characterized as a fairytale.

How about if we leave him/her in peace and and allow them the time and space to come forward when and if they feel like it.

[Farooqji in reply to MBAnderson]

I again reiterate here that I will not say a word about her consequences of FUS on this forum

[MBAnderson in reply to Farooqji]

I believe you. Take it up with Trixie in private.

[MBAnderson in reply to Farooqji]

Let me add, after something has been done several hundred times it is hardly "experimental."

[Farooqji in reply to MBAnderson]

Agreed but you see that there are a lot of clinical trials going on wrt FUS

[MBAnderson in reply to Farooqji]

The clinical trials in the US could be called experimental. The people who are trying to get in such trials would probably prefer that word not be front and center. They're not seeking government approval in Switzerland, they already have it.

[MYPIPER11 in reply to MBAnderson]

I totally agree....I have more faith in this new technology than in having my skull drilled into and implants put into my brain. I am checking very seriously into this new way to deal with PD. And from what I have discovered so far, I am leaning toward having the FUS procedure.

[mach262 in reply to MYPIPER11]

Good luck with that MYPIPER. I'm at the same stage but my Consultant is aligned to DBS and thinks FUS is expensive (quoted £170K) and he was treating patients who had undergone FUS and were no better or worse. It's a tricky one