UPDATE: Finally, some progress with the back (only took 3 months). Now Week 6 on the bed.

[Missus835]

Ater my 11 trips to ER (in Halifax), I got Dr. Das, who at this point, is my hero. He diagnosed 2 fragility fractures at L1, L2 and disc buldges at L4, L5, S1 from a CT scan of July 6th which no one had read. After calling Rheumatolgy Nursing Line on Monday last, for the first time ever, they returned the call the next morning. Nurse was disgusted. She went immediately to Rheumy's office and I got a call aroun 4 P.M. Once again a record because Rheumy has never called me back. She knew she was negligent. Then she tried to gaslight me. Didn't take the Alendronic Acid because I do have GERD and it messed my stomach up (my pharmacist faxed her this info, as thry do for any drug ussues). Obviously was not read either. I asked her why she told me I was osteopenic in Dec. 2022 (not osteoporitic? She said she told me I had osteoporosis. "Well these are terms that are loosely thrown about". Lucky I have a memory like an elephant. Then she tried the remember when I palpated the muscles innyour back route and I said "you said oh I think it could be your muscles" and gave me Flexeril, which didn't workIn the end she has arranged for annual infusion of zolendronic acid, which PMRPro had suggested.She did not know what Vetebral Plasty was. I said "what!" End of long rant about her.

Dr. Das referred me to Radiology and on Wednesday last I got a call from Dr. Smith in Radiology to talk about the plasties and we agreed to go-ahead with them. Muscle spasms for at least last 6 weeks due to spine being unable to support itself. Muscles in back, stomach, diaphragm doing all the work.

No date yet for plasties but asap sounded good to me.

Then my original Neuro called me the next day. Talked for a long time. He wants to bring me into his clinic. He said PMR is one thing but I want to make sure your back is looked after.

So there you have it. Not one specialist but two good ones and a very lax rheumy.

Persistence pays off. Tenacity pays off. People say to sue the rhemy. I'm choosing the most important battle first...to get mobile again.

[PMRpro Ambassador]

Sounds as if she is worried ...

[Missus835 in reply to PMRpro]

I did figure out her email address and sent her two links on vertebral plasty. It didn't bounce back so presuming it's correct. I asked the surgeon if this was new and he said no it's actually old.

Another note, should I increase the Pred before this procedure? Given any risk of infection? Surgeon knows I have PMR and on Pred. I will be awake and in the twilight zone.

Pretty sure there may be some inflammation, although the cement hardens immediately. VON will be coming in to change the dressing.

[PMRpro Ambassador in reply to Missus835]

It's been around for years! First done in the mid-80sm became common in the USA in the 90s.

No - don't increase pred off your own bat, Speak to the anaesthetist and surgeon. They should provide hydrocortisone cover during the procedure I would have thought. even though it is quite short and done under local anaesthetic but you have been on high dose pred for a while.

[Missus835 in reply to PMRpro]

Well would you not have thought as I did that a Rheumatologist would have heard of it? I think she's either playing dumb or is dumb. I think she's both. Lol

[PMRpro Ambassador in reply to Missus835]

I would have thought so - but nothing surprises me any more. And she has now and potentially has a patient having it so I hope she does a bit of reading ...

[Missus835 in reply to PMRpro]

Let's hope so, but although I don't like burning bridges, my thoughts are "I no longer feel safe in her care"; not like I ever did.

[PMRpro Ambassador in reply to Missus835]

Well no - and I would be VERY reluctant to go back to her.

[Missus835 in reply to PMRpro]

🌹Thank you for all your help Pro.

[piglette]

Very sensible, think about your health and concentrate on that. I do find the people who suggest you sue someone normally have never done it themselves. You have to be prepared to have a lot of hassle, give up a lot of your time and possibly lose money.

[123-go]

A huge well done for persisting! I hope all goes well for you at last.

[SheffieldJane]

Well done you for negotiating all this so well. Your mental acuity is astounding in the face of such wilful incompetence. 💐

[Missus835 in reply to SheffieldJane]

Well I've always been a fighter...had to be. That being said SJ, I've learned to choose my battles. She needs to be worried PMRPro, but first things first. At this time, and with my Nuero on board, I'll let her stew in her own juices.

[powerwalk]

At last, hope you get sorted now. Best wishes.

[HeronNS]

Excellent. So glad and relieved you finally have some competent people in your corner. 🍀❤️

[Missus835 in reply to HeronNS]

Thank you Heron. Me too! 🌻

[Sophiestree]

I won't add the obvious as others have covered it and it sounds like you have the right team now. I am interested in who requested your original CT though that was not read. That is terrible, and clearly your Rheumy is more than aware of their failings.

I heard a similar story from a friend last week who's father had a PET CT but no follow up. Three weeks later he was having emergency surgery in the middle of the night as he had an aortic aneurysm and blood clot in his leg . The surgeon (who was woken at home) came out to say he was going to 'try' and save him. 5 hours in theatre and he survived. Turned out the PET CT was a clear case of LVV/GCA.

[Missus835 in reply to Sophiestree]

Omg that's a horror story. On my last visit into see her I told her I needed either an MRI or an up-to-date CT scan as my symptoms were so.much worse and I was now in a wheelchair. It was easier than making the distance from the carpark with my walker. She opted for the scan.She still concentrated on the computer making notes, which she can never find when she needs them. She gave me the requisition for the unread scan and Diagnosiic Imaging called me a day later. Scan done July 6, report issued July 10. Never read until my 11th ER visit and Dr. Das actually took the time to go over my file. It took him 10 mins. He diagnosed the fractures and bulging discs and got the ball rolling. 6 weeks later, but they say delays happen for a reason. Universal timing.

The other issue is when I need changes in prescriptions or such. My pharmacist sends her faxes and we never hear back. It's been an uphill battle with her as my rheumy since May 2022.

Hope this answers your question. Thanks for your reply.

[marionofnorwich]

Maybe it is worth a single letter to her, that you keep a record of, that outlines dates and occurrences just have you have described them. And the potential for accountabilility whether suing her or just calling her out with the medical profession. I am not a believer in 'revenge' but she should be aware that she is accountable and they she needs to up her game. Presumably she has employers or a medical association to oversee her work and they should be made aware for the safety of others.

[Missus835 in reply to marionofnorwich]

That's an excellent approach Marion and I'm going to draft it up today. Thank you!

[marionofnorwich]

Good to do while fresh in your mind! Everyone makes mistakes but not everyone realises that they have.

[Fireleigh]

Your specialist should summarise your appointment noting his her recommendations and what the GP should do after each interview. A copy comes to you and one to your GP. Ask for this to happen. Meanwhile you are right, get your mobility back. Good luck.

[Missus835 in reply to Fireleigh]

In a perfect world, I would have a GP but here in Nova Scotia I don't. Sadly. So she is accountable not. In future, my Neurologist will be seeing me, just to ensure that my back, at least, is looked after. Thanks for your reply.