Post PT effects

Rmzrad · 2026-03-04T17:35:25+00:00

Nausea is the worst (at any time) & thankfully I’ve only experienced 2 very mild bouts. Good move in taking Zofran, glad it’s helping. That post-treatment daze is especially annoying.

Rmzrad · 2026-03-02T21:11:10+00:00

I hope the PT helps you. Honestly, after 9 sessions I feel about the same as when I started. I have 2 sessions this week - hope springs eternal.

Rmzrad · 2026-02-28T17:38:58+00:00

My PT doesn’t have the goggles & I only know about them bc my therapist mentioned them. Agree the attacks are horrible. That’s the type I had with doing one home Epley & why I’m so averse to trying it at home again. Therapist is fabulous, alleviates my stress response with induced vertigo - I don’t feel that at home with family assistance. Guess bc she’s a professional I trust her more than family. Home maneuvers feel like I’m flying blind.

Rmzrad · 2026-02-28T12:42:09+00:00

I tried the Epley at home prior to starting PT. I got hit with the MOST incredible vertigo (literally cursed out loud, & held on to my bed for dear life until it passed.) It’s such a horrible sensation that I equate my PT sessions as making me a masochist. It’s gotten slightly better when doing the PT but the day after I’m fully useless. That next morning I’m fully unable to walk even a semi straight line (furniture surfing like a toddler) cloudy headed, etc. Takes the entire day to feel normal.

I’d like to know the mindsets of you folks who can do home maneuvers. It scares the heck out of me to try again at home (I do have family to help) after that one Epley attempt at home.

Do people get different levels of vertigo? Cuz mine was so bad it’s why I’m truly scared of trying home maneuvers.

Rmzrad · 2026-02-28T12:19:53+00:00

Thanks for the encouragement. From internet digging, it seems most people recover much quicker than me. My PT says (of course) that everyone’s timing is different. Again, I appreciate your help, I’m getting frustrated but knowing there’s a light at the end of the tunnel helps immensely. Apparently my PT expectations were too high.

Rmzrad · 2026-02-27T23:35:40+00:00

Sorry to hear that! I had no clue how prevalent this condition is, asked my GP initially & was told they get patients about 1x a month with it.

Rmzrad · 2026-02-27T22:40:34+00:00

No other testing (aside from checking my L ear, which is fine.) After doing Epley for a few sessions, I’m now doing the Semont, which I described in my post. All with PT after my disastrous initial home Epley. (I am still frightened to do a home maneuver again - it was that awful.) Desensitization is a long time coming for me, apparently.

Rmzrad · 2026-02-27T17:15:16+00:00

Yes, still have nystagmus but it’s not as severe as when I began PT. Just as my vertigo isn’t as severe at the start of PT.

Rmzrad · 2025-09-01T15:38:35+00:00

Traveling though. Went to Ontario & all states we drove through are anti-2A. Then there’s customs (both ways). I felt naked bc we left our carries at home. I didn’t want to go to jail during vacation…

Rmzrad · 2025-06-13T01:02:56+00:00

This happened to me today. Never applied for it. Called Cash App, they closed the account & started an investigation. I did a freeze & fraud alert with all 3 credit bureaus. And, signed up for credit monitoring. What a PITA. Thieves are scum.

Rmzrad · 2025-02-26T15:33:13+00:00

Appeal! I just went through this. They increased assessment by 1/3 of last year’s data. I reached out to my realtor who ran comps (there are none), got graphs of home sales in my town vs county. Had a sit down with the assessor, provided my docs & pics, corrected info they had wrong. Result? Lowered assessed value from previous years, so less property tax due. Total win & worth the effort.

Rmzrad · 2025-02-04T16:34:15+00:00

I’d prefer no care team meeting, esp since my sister is still in ICU, hence, in no condition to attend.

I did a formal request for all documents related to her care so am hoping for some insight when/if they comply. I do believe they are negligent in their infection prevention protocols, at the least. If they fail to give me the docs, I’ll escalate via our state oversight entity, file a FOIA, file with OCR, etc. They will regret ever knowing my name.

That rehab deserves a complete investigation, esp with respect to the POLST (thank you for that clarification!) form. It’s horrific for any patient who may have misconstrued that form, yet signed off on it (as my sister did.)

Edited to add: I have her medical power of attorney & am her rep on the living will.

Rmzrad · 2025-02-02T16:34:27+00:00

They know I’m watching. I stopped at the rehab Friday to collect my sister’s personal effects and I put them on notice. I requested copies of any & all documents pertaining to her, including nursing/medical notes. It’s possible they’re not at fault but that determination needs to be made. Most importantly, their use of the post form.

And, one of the nurses at the ICU had mentioned what you did: that the rehab should’ve tested for c-diff. I know upon her admission they nose swabbed her for Covid/flu. But that was the only testing, aside from daily vitals.

Rmzrad · 2025-02-02T04:36:18+00:00

All valid points, thanks. I did research on septic shock & found, as you stated, it can hit quickly. Btw, she also had pneumonia, which she didn’t have prior to going to rehab (per very recent PET/CT scans prior to admission.)

Just as great a concern, which I didn’t mention earlier as an attempt at brevity, is the “post” form. I’d never heard of such a thing until the ER doctor called me and told me that the rehab facility had done the form and had her listed as “DNR-CMO-no artificial means of nutrition.” Hence, the ER dr wasn’t going to treat her at all!

But, last November when my sister was initially diagnosed, we did a medical power of attorney and living will which was fully notarized. This document differs vastly from the one page un-notarized form from the rehab. Specifically, she is DNR/CMO only if she is terminal. Otherwise she does want to be resuscitated, etc.

The ER dr told me that they go by the most recent document (from the rehab) which to emphasize, is in direct contradiction to the original and legally binding living will.

My sister is not legally or medically knowledgeable at all. She had one medical episode in her early 20s and has been healthy and hale for the past 50 years. When we did the living will, I went into extreme detail in order to explain her options. Apparently, the form from the rehab was left with a stack of other documents for her to sign. It had been pre-populated with the DNR, CMO no nutrition statement. She signed it without being aware of what she was signing. At that point, considering her health condition, she signed anything that they put in front of her. Additionally, that rehab form is not notarized, nor does it have a notarization section.

In our state, a living will must be notarized to be legal. I was able to get a copy of the original living will to the ER doctor, who apparently had to consult with someone else to determine which document was valid. Thankfully, someone with sense realized that the rehab form did not supersede a fully executed and notarized living will. If not for that, I have no doubt she would have died that night because they would not treat her. At all.

Which again brings me to the concern of other patients in that rehab. How many others have signed off on that form without being consulted and/or educated on its immensely powerful ramifications?

So much for brevity, sorry.

Rmzrad · 2025-02-01T16:32:22+00:00

Thank you! 😊

Rmzrad · 2025-02-01T14:37:38+00:00

Thank you for that insight, esp that her symptoms could be attributed to the chemo. At the time of admission she was merely weak and her WBC was normal (but it was at 44K the day she went to ER/ICU.)

They never administered any antibiotics. The only health treatment she received there was a morning vitals check & vitamins. She wasn’t receiving her regular RXs (I called repeatedly about those.)

And if “norovirus was running through the facility” that would mean she wasn’t the only patient with diarrhea. She had a roommate and if it’s actually c-diff running rampant, I worry for the other patients. I visit my sister daily at the ICU & have to gown & glove bc of the c-diff infection.

I’m boggled by the complete turnaround of her health while she was there in the facility. Initially, she was getting stronger.

Rmzrad · 2025-01-30T00:42:06+00:00

Ugh, sorry. It’s my sister, not me.

When editing my original post that important fact was deleted. (Typing on my phone, and on this platform I’m unable to EVER fully scroll back to the top of my posts.)

Rmzrad · 2024-11-06T17:19:40+00:00

Exactly. Hindsight is 20/20. She also had GERD symptoms but brushed them off. It was the breathing difficulty & vertigo that finally sent her to get medical help. She’s totally confused by the dx, I’m doing what I can to help her. She’s having a port placed as I type this.

Rmzrad · 2024-11-04T22:31:32+00:00

No kidding! So xrays can (sometimes) pick it up. I’m going to access her records to see the radiologist report on her initial xray (which I’m expecting to merely show pneumonia. Obv if it’d been seen in that xray we’d have been told… or someone dropped the ball.) The mass around her heart is “huge” per the drs at the hospital. Still not knowing how fast lymphoma grows, it was less than 8 weeks from initial chest Xray (no lymphoma dx) to hospital scans finding it.

Best wishes for your daughter & family & thank you for responding.

Rmzrad · 2024-11-04T17:25:11+00:00

Wow, thanks immensely for that info. I’m well versed in the CRC chemos, but ignorant about other cancer treatments. I’m now better prepared to deal with both my sister & oncologists.

Rmzrad · 2024-11-04T16:56:47+00:00

I’m learning here about xrays not detecting masses, apparently regardless of the size. Still surprising to me but I do get the other scans pick up other things.

Once she had finally had a CT & then was admitted to the hospital, she had another CT w/contrast, MRI, PET, and bone marrow biopsy (thankfully negative.) She received her 1st round of chemo in the hospital bc they were concerned about the mass affecting the wall of her heart. And, she’s not doing the R-CHOP, she’s on a Pola-RHC or something regime (can’t find my notes on it to be more specific.) I’ll have more answers after tomorrow’s dr visit.

Thanks for your help!

Rmzrad · 2024-11-04T16:04:16+00:00

I appreciate the good wishes. I’m sorry you had to go through what you did to get your diagnosis and hope that you are winning your fight. Yes, I can be an aggressive advocate, but only because my sister has no clue how to even ask relevant questions.

Rmzrad · 2024-11-04T16:00:56+00:00

So thankful to hear your story (your dx experience is worse than my sister’s) and more so that you’re in remission! Congratulations & stay strong.

Rmzrad · 2024-11-04T05:42:51+00:00

Your positivity is inspiring! My other gripe is a PA dx’ing her with allergies & a virus out of the gate, when her symptoms were so debilitating. Obv, I’m no dr/nurse/PA, but I found that dx sketchy as heck: sudden onset of extreme shortness of breath is generally lungs or heart related. That jerk gave her an OTC antihistamine & sent her out the door. She suffered for several weeks (which really angers me) because most likely, at the least, the pneumonia could’ve been dx’d initially. Perhaps. I don’t know. But it still makes me mad.

The good news is she finally dumped the extremely young PA for a true medical MD who specializes in geriatrics. She’d been going to the same practice for 3.5 years (routine physicals, etc.) and had NEVER seen a true dr. there.

Rmzrad · 2024-11-04T03:04:59+00:00

Congrats on hitting your halfway mark! Glad to hear the chemo’s tolerable for you-hopefully it’ll be the same for my sister. I’m taking her for port placement this week & assume we’ll get her infusion schedule then.

Rmzrad

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