May

[May @CheersTo____]

@julierehmeyer Much appreciated!

[May @CheersTo____]

@shuntedmdphd Tennis ball helped. Regular hot packs no, but sleeping with Hot Hands larger packs (but you can burn your skin).

[May @CheersTo____]

@ChampPR how can we help lobby for these in PHX? @MayorGallego

[Shepherds of Good Hope @sghottawa]

Thanks to the @ottawacity we have one of the fire hydrant water fountains installed in front of our shelter. People experiencing homelessness now have easy access to safe drinking water any time they need it. 💧💧💧 And it's just in time for the dog days of summer! #water #Ottawa

[May @CheersTo____]

@julia_v_1979 There was some side discussion as to how many hospitals don't have non cutting in their kits, they are harder to use bedside, and the training hasn't been there for the differences in technique. All disparities that can and need to be addressed going forward.

[May @CheersTo____]

We are now to questions before another quick break.

[May @CheersTo____]

@BrennanSpiegel While not something one go to the hospital for, I keep thinking about a study out of Ireland that showed a 40% increase in frozen shoulder.

It is taking some time to tabulate all the disease increases, but it is certainly a significant factor.

https://t.co/sLIQsqBsNj.

[May @CheersTo____]

@BrennanSpiegel While health disparities, closed institutions, etc contribute, there seems to be a new study each week showing sharp increase in disease since the start of COVID. Heart attacks up 30% in 25-44 age group in the first 2 years alone
.
https://t.co/LSdERnUtVT

[Dana M. Lewis | #OpenAPS 🤖 @danamlewis]

Is it really a "patient-reported outcome" (PRO) scale if the scale itself wasn't created in direct partnership with patients?

Meaning if the patients didn't actually input to the direct design of the scale beyond "interviews and focus groups" prior to the scale development.

[May @CheersTo____]

@CSFLeakMatters Overall. Another study later quoted a similar percentage but I missed the exact number.

[May @CheersTo____]

We are back from lunch with Dr. @PeterGKranz talking about Rebound Intracranial Hypertension Diagnosis & Natural History. #SIH2023

[May @CheersTo____]

That's a wrap on #SIH2023. Thank you to all who continue to further the work!

[May @CheersTo____]

Many questions don't have clear answers yet, from imaging, to acetazolamide dosing, to treating the patients who want their lives back and haven't been able to reach that outcome yet.

[May @CheersTo____]

Wrapping with Q&A #SIH2023

[May @CheersTo____]

The registry will be setup over the next 9+ months. It will be FDA, NIH, and HIPAA compliant. The goal is that it will be active in 2024. From there, multiple center collaboration and research can move forward.

[May @CheersTo____]

Dr. Abhay Moghekar is presenting on Advancing Science-Collaborative Research Network and Patient Registry with @spinalCSFleak at #SIH2023

[May @CheersTo____]

The launch of the spinal CSF leak patient registry will open the door to much more data to further research.

[May @CheersTo____]

No we are hearing about Quality of Life After Surgical Treatment of SIH from Dr. Beck at #SIH2023.

"It not just a headache. It's a serious disease."

[May @CheersTo____]

3/4 of the patients who responded to EBP did not come from those who fit the ICDH-3 criteria.

[May @CheersTo____]

@DrIanCarroll is presenting on Long-term Outcomes of EBP in Patients Who Fail to Meet ICDH-3 Diagnostic Criteria

[May @CheersTo____]

80% of patients in the study did not meet ICDH-3 criteria. Patients in the study were roughly 8 years into symptoms.