More "Good News/Bad News"

[Dickwin]

This seems to be a common thread here lately:

My wife is currently in the Bio-Gen study (not the similar Abbvie study). It is a double-blind study of a monoclonal antibody that is intended to attach itself to excess TAU and then flush the TAU from her system. The current drug will, it is hoped, slow the progression of the disease. So, it is not a cure, but a big step in that direction.

My wife had her half-year evaluation and 7th treatment last Wednesday. We were told by her trial doctor that he thinks the treatments may be working on her, and he thinks he has seen slower disease progression. Anecdotally, the administrator of the trial at Northwestern also thinks she is seeing slower progression. Especially compared to another one of her patients who was in about the same place as my wife when their treatments were started.

As many of you know, it is a blind study, so we have no way of knowing if she is getting the placebo, but her regular Neurologist, the Neurologist running the study, and the study administrator are all cautiously optimistic that she is receiving the medicine, and that it is working to slow the progression of the disease. So....Great News!

The bad news is, the night she received her treatment, she became violently ill. This had nothing to do with the treatment. She had a Gall Bladder attack and has gall stones. They tried treating these with antibiotics and pain medicine, and they tried removal of the stones via endoscopy. They want to avoid giving her a general anesthetic because general anesthesia frequently induces rapid progression in patients with PSP and other progressive cognitive disorders. They have exhausted all other approaches, and she will be getting the operation with a general later this month.

So...good news and bad. AKA, another day with PSP. Please keep my wife in your prayers. We are all pretty terrified going into this necessary operation. There are numerous stories on the site where people are reported to have advanced their PSP symptoms over night following the admin of a general asthetic. We are praying that is not the case with my wife.

Warm Regards,

Dick

[NannaB]

🙏🏼 XxxX

[Marie_14]

What an up and down story? Such luck to be on the trial and for things to be going in the right direction.

So sorry she now has to undergo an operation with a GA. Can't understand why they couldn't get the stones out using keyhole surgery. Did they say?

Marie x

[Dickwin in reply to Marie_14]

Marie,

they are planning a laparoscopic surgery, but it is a Gall Bladder removal, not just the stones. Unfortunately, her Gall Bladder is quite inflamed.

[Bargiepat]

Is this a possible solution..... XXX

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

[Dickwin in reply to Bargiepat]

Pat,

Thank you for the link. We did discuss using an epidural blocker. My wife is short, and the block would be so high on her spine that anesthesiologists fear it would shut down her lungs. Also, while they are planning a laparoscopic surgery, a pre-existing condition may force a standard (old school) Gall Bladder removal. So there are two mitigating factors. But it cannot hurt to run it by them one more time, with your link (thank you). I do know that multiple Doctors including General Surgeons, Anesthesiologists and Neurologists from two teaching hospitals were consulted. All they can do is say no, right.

Warm Regards,

Dick

[Marie_14 in reply to Dickwin]

Is it really any different from having your appendix removed which I know they do by keyhole surgery. I don't know the exact dimensions of the gall bladder v the appendix but if they can do one surely they can do the other?

Marie x

[Hidden]

Larry had his gall bladder out 9 or 10 years ago. His cousin mentioned how anesthesia could have been the catalysis for the PSP. Hope it goes well for you wife.

[raincitygirl]

Best wishes to you and your wife Dick.

Good news about the study results!

[Hiking13]

Thinking of you at this time

Sarahx

[AJK2001]

Thinking of you both xxx

[Hidden]

Oh my goodness, what a dilemma. You are between a rock and a hard place.

I hope all goes well.

Sue xx

[daddyt]

Keeping you both in my prayers.

Tim

[Mamapiggle]

Thinking of you both

Jeanette x xx

[Karynleitner]

My husband had two surgeries. One was an appendix removal ( keyhole) and one a knee replacement. He had no notice of PSP with the keyhole surgery , but noticed progression shortly after the knee replacement . I always wondered why .

You are fortunate to have a good team working with her who is aware and understands her condition Best of luck.

Karyn

[Kristin447]

Wishing you the best of luck, how frustrating you got put in this position when you were heading in such a positive direction! Lots of positive thoughts and prayers to you both!

[Binababoo]

She is in my prayers !!!

[Ettavb]

Your statement about ‘rapid progression with local anesthetic’ (so, to be avoided) - has that been researched? If so, it sounds to me like that is a protocol in of itself.

Regardless, I did not know that. Certainly this would/could have implications in caretaking. I know my mother has had a localized anesthetic for tooth removal‘s and for a variety of procedure she’s had: pulmonary embolism catheritization, and surgies for broken bones — all within the past year.

[Dickwin]

Not a doctor but my understanding is that local anesthetics and epidurals don't trigger the negative effects that Generals do in folks with certain neuro-degenerative diseases.

[enjoysalud]

Hi, keeping you and your wife in my prayers, and looking forward to positive news at your next posting.

Blessings....