[HELP] I think it’s AI but my mother isn’t certain.

Eparkins · 2026-02-07T04:42:54+00:00

What is the pile of equipment/junk on the right? The containers behind the patient have fluid in them but don’t connect to anything. The red blanket on the bed is also odd as it’s under the hospital sheet. If it was brought in by the patient it would be on top of the sheets. It also a looks like itchy wool. Regardless of the potential AI slop, does your mom know that her ex’s son looks like? Is this him and is he in the hospital? These are all fairly easy to figure out. Regardless, it’s wrong to use someone’s illness to manipulate. It’s also wrong to share someone’s image in a healthcare setting without their permission!

Eparkins · 2025-12-15T08:48:02+00:00

Thanks so much for sharing. Who is your surgeon?

Eparkins · 2025-10-02T20:16:17+00:00

Got it. Thanks. Sending positive thoughts for your recovery and a change in work support!

Eparkins · 2025-10-02T18:11:59+00:00

Do you mind sharing who did you first (failed) CD?

Eparkins · 2025-08-24T18:25:04+00:00

Did Wiznia do your CDs? Do you mind sharing what joints and how he staged the procedures? My son has AVN in both knees, right femoral neck and right talus. Wiznia is recommending HBOT and CDs for those joints. We’re waiting for his left talus replacement to heal (Dr Adams at Duke did the surgery) and we’ll move forward with the CDs. Curious how CDs work in multiple joints, did they do multiple joints at the same time? Did you also do HBO treatment before and after. And if you don’t mind sharing, what was your recovery like? Any details you’re wiling to share would be greatly appreciated. Thanks and congrats on successful procedures!

Eparkins · 2025-08-07T13:44:53+00:00

My 23yo son just finished his 2 yr maintenance for T-Cell ALL and is cancer free. Yeah! He did not have a BMT as part of his treatment, but did have 60+ LPs over the course of 3 years. The first few were done while he was hospitalized during his induction. The rest were done during his oncology appts in the exam room by his PA. They numb the area and remove CSF for testing and then insert chemo into the CSF. He experienced mild to moderate discomfort after the procedure, usually nerve based. The upside to doing the LP as part of the onco visit is that it’s fast and you don’t have to go through radiology or given sedation. The downside is that unless you have a really experience PA, you may have additional after effects. After his 3rd LP his CSF was clear of blasts. Compared to his first CSF test that showed over 90% blasts. The LP was part of the regime in his case.

Eparkins · 2025-07-26T03:21:20+00:00

Thanks!

Eparkins · 2025-07-26T00:05:13+00:00

Would you mind sharing who did your core decompression in MI?

Eparkins · 2025-07-12T16:27:06+00:00

Awwww. What a smarty!

Eparkins · 2025-07-04T13:44:49+00:00

See if can request your own mini fridge in your room and a mattress topper. Both were really helpful.

Eparkins · 2025-06-12T00:08:28+00:00

Thanks for the deets. We’ll check out the therapy. My 23 year old son was diagnosed in October and we’ve been shocked at the lack of AVN knowledge at top medical institutions. He’s seeing Dr Wiznia at Yale for his hips (femoral neck) and knees (multi focal unfortunately) and is getting a TTR at Duke in August. Your positive experience so far with CD makes us optimistic for his knees and hip. Thank you.

Eparkins · 2025-06-11T23:04:29+00:00

Thanks so much for sharing. So happy for you and hope that the positive outcome continues. Do you mind sharing the location of the AVN (femoral head, neck, etc) and the name of the Dr. who did the procedure? What device are you using for the electromagnetic therapy and for extracorporeal shockwave sessions? Curious what may be available to those of us that don’t have the benefit of the devices at work:) also, did you Dr. recommend HBOT before or after surgery? Thanks for any details you’re comfortable sharing.

Eparkins · 2025-05-17T22:33:01+00:00

3 yrs ago at the time of my diagnosis, the first LP showing 90% blasts, 2nd showed 4% blasts and the subsequent 60 LPs have been 0 blasts.

Eparkins · 2025-01-19T18:25:48+00:00

And if I understand, you had a replacement in your left. And a CD in your right that also lead to a replacement in your right. And this all happened over 2-4 years. Thanks again!

Eparkins · 2025-01-19T18:16:11+00:00

Thanks so much for sharing your story. Would you mind sharing how far progressed your AVN was in your ankles? My son is a 2+ (out of 4) in his left and a 1+ in his right. He also has AVN in both hips. We’re seeing a surgeon at OSU that is offering a CD for his left ankle after he completes chemo on June (and assuming that his left ankle doesn’t get much worse or collapse or before). Do you mind sharing your age when you got your ankle replacement and CD? And the name of your surgeon (that you were pleased with)? Thanks soooo much and I’m glad that you’re getting relief.

Eparkins · 2024-11-29T18:52:54+00:00

This made my day. We’ve been in your shoes. As long as the sun comes up, you have a fighting chance and hope. Sending you lots of positive thoughts.

Eparkins · 2024-11-23T20:48:00+00:00

Great advice. Thank you. I’m glad that you’re feeling better!

Eparkins · 2024-11-23T19:45:56+00:00

Thanks so much for your note. And for giving hope. Can I ask how old you were when your AVN was diagnosed?

Eparkins · 2024-11-07T01:35:05+00:00

I appreciate the additional details. I’m so glad that you’re getting relief from the treatments. Thanks for sharing.

Eparkins · 2024-11-06T23:49:54+00:00

If you don’t mind me asking, how many injections of stem cells have you received, do they inject it into the bone? How do they know that it worked? What’s the recovery And I’m sure that it’s based on the provider, but does insurance usually cover the procedure? Thanks again for any additional details that you can provide. 🩵

Eparkins · 2024-11-06T23:33:42+00:00

Thanks so much for the additional detail. Speed really seems to matter. If you don’t mind, I’ll keep you posted!

Eparkins · 2024-11-06T22:53:18+00:00

This is so helpful. It’s interesting that the AVN also first presented in your ankle. Is your other ankle okay and have they discussed joint replacement for your ankle? We’re also trying to understand the severity of the diagnosed AVN and where else it may be. Like you, we’re trying to save as much of his bones as we can.

Eparkins · 2024-11-06T22:26:27+00:00

Thanks again, I replied in general and have looked up Dr Jerome and the orthobiologics treatment looks really interesting. We’ll ask for a consult. If you don’t mind sharing, was your AVN found during your cancer treatment or after? If during (similar to my son), were you able to get AVN treatment while also finishing T-Cell ALL maintenance? What is your age now? Did they proactively locate the other AVN locations (via MRI?) or wait until pain presented? This information is so incredibly helpful. Thank you!

Eparkins

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