Complex hip pain with no answers

The term Patient Advocate is corrupted, it means other things, in some States. While in OR, I went to 2 ER's with racing heart and pain all over. The second time it was GI stuff. I ended up hemorrhaging at home, in the hours just after they kicked me back out, again. I'd even come in to them in an ambulance, unable to get up off the bathroom floor. So, I'd begun asking for a Patient Advocate the 2nd out of 3 times. Turns out, there's a 24 minimum delay between asking for one, and getting one. Then, it turned out, their idea of a Patient Advocate was someone who looked out for the hospitals interests. I only went back to that ER the 3rd time because my new PCP (I'd fired my original ones) ordered me back there, when I told them I was bleeding. Sure nuff, I was admitted. Then, two nurses fussed over me, while an Aide went in the bathroom and flushed all the evidence. But they did treat me, IV antibiotics etc. and almost got away with discharging me 1 day too soon but I caught them at it, so I was allowed to stay 1 more day. Don't assume that titles mean what they appear to be in American medicine.

What an unbelievable experience you had! If I were you, I would contact an attorney and sue them. What they did is flat out illegal I know it’s really hard to fight when you don’t feel well and they depend on that but you sound like a fighter so I hope you do. As far as presuming, I don’t presume here in California we seem to have less corrupt systems than you’re facing, and there are rec courses, not to say there isn’t bad people and problems, but since I work in a variety of medical situations, I can tell you that ombudsman and patient advocates do exist some better some worse . I know Oregon is a very pretty place, but I also know the hardship that some people face their trying to get services. Good luck.

It was only about the end of some of the worst medical care I've received. It takes money to hire attorney's to sue. The risk is all ours, and the costs can be prohibitive. To me, it has only seemed like gambling. Maybe for others, it's not so. My brother had to counter sue someone once, my father hired the attorney, whom he knew, and fronted the costs, because my brother then lived still at home, so it could have come down on my Dad. My brother won, but mostly he won not getting sued himself, or my Dad. I have never been able to communicate past an Attorney's secretary, to get a free appt. The one time I was able to get past one, to sit with a Legal Aid type one, he wasn't obligated to take the case, so he didn't. Reality is a hard lesson. So, I moved. I moved out of Oregon completely. Then, got my colonoscopy (9 polyps, all not cancerous) and slowly over time, my health has improved. I am a person of faith.

Very very sorry about your difficulties.

Clearly, you ran into doctors who did not know what they were doing and pretended they did know.

US News publishes lists of the best hospitals in the US

Here's a link for their list of the best orthopedic hospitals:
https://health.usnews.com/best-hospitals/rankings/orthopedics
The very best in a field is certainly going to be a lot better than just any old orthopedist.

My personal quick guess is that other non-orthopedic problems...perhaps your cardiac condition is aggravating your "orthopedic" problems and making treatment of them more difficult.

So, there might very well be a much more complex scenario here, than just orthopedic problems.

I would certainly run your symptoms by your cardiologist and see what he/she says.

You might want to try an MD that also works with natural therapies. Maybe get some insight there from a different perspective??? And that would be Integrative Medicine MDs, Holistic MDs, Osteopaths...

And maybe they can shed some light on things.

Acupuncture might give you some pain reduction, I don't know. But the advantage is that you would not be taking in yet another drug....which your system might not agree with. Acupuncture might give you some release, while, on the other side, giving your zero risk of aggravating anything.

I would look into a better mattress...never hurts. Ask a doc...like your cardiologist if there is a mattress that he thinks would help.

If you try some natural therapy like acupuncture, you could also ask the practitioner about that.

Maybe some better sleeping positions...support your body in various ways with pillows, take the pain and pressure off. But, of course, some expert has to suggest what to do, if you make a move in the wrong direction, you are going to be misaligning your body 8 hours a night, every night.

Of course, hit all the basic keys to health. Sleep plenty, hydrate with all those 8 glasses of water daily, eat very healthy food.

You can also look into environmental factors, just in case you are getting some exposure to something: radon, a freon leak, new factory in the area spewing extra pollution, mosquito spraying by the county, mold in the house...all those things. Never hurts to eliminate potential problems as the issue.

I would also get professionally assessed for degenerative diseases like MS and on....just in case something in that arena is going on.

And since there seems to be nerve involvement, I think it wouldn't hurt to get a neurological assessment.

I have been in support groups with many seriously sick folks. What I can say from those experiences is that everyone who gets in there, does research and works hard, makes progress. Symptom reduction, better coping skills...everything across the board.

Again, sorry about the difficulties, best of luck to you.

I have POTS, fibromyalgia, central pain syndrome, and HSD/hEDS, so not too different a background from you. And I have “moderate” (which is to say still very limiting) hip pain. You’re right that it doesn’t help to have these chronic pain syndromes that are either layering more symptoms on top of something that might be a structural or unrelated nerve problem and/or magnifying the pain. I had chronic hip pain for years that was recently diagnosed as hip dysplasia.

Hip dysplasia leads to hip osteoarthritis, which can cause severe pain that’s quite similar to yours: front of hip, side, groin especially and low back. Not sure if you may have OA or hip dysplasia but it may be worth asking about because my hip dysplasia went undiagnosed for years despite it being a very common misdiagnosed congenital condition. The evidence was in the x-days but the radiologist didn’t note it, so my doctor didn’t know to mention it.

I’m so sorry you’re going through this =\. It’s a story that’s too familiar to all of us.

I know it’s hard, but if you can, I’d find another provider—and perhaps not start with an orthopedist straight off because in my experience, they tend to focus straight on structural/degenerative changes, and while that’s important, there can be more to it than that they’re not considering, plus they tend to go straight for interventions like injections. Again, that’s not a bad thing, but the harm can come if they’re not considering the whole picture, and maybe I missed it, but did you even get a diagnosis or did they go straight to the injection because of pain?

For example, my physiatrist (physical medicine doctor) and PCP cautioned me about the steroid injection my first orthopedist immediately recommended, because I have fibro and central pain. In fact, they specifically said there’s a risk it could make my pain worse because these conditions create an exaggerated response to threats. Naturally, the orthopedist did not mention that nor did he have a concern when I asked.

Have you considered a physiatrist? They tend to look at things more holistically and will tend to also be more understanding of your other underlying conditions. A good one can help you decide and probably provide a referral to a better orthopedic surgeon who will hopefully not give you the runaround! And physiatrists tend to collaborate often with PTs.

For my orthopedic surgeon (I’m considering a steroid injection now, but it’s as a last resort), I specifically was referred to a “hip preservationist.” He does hip replacements but also diagnoses and treats conditions like hip dysplasia and hip impingement that cause symptoms similar to what you’ve mentioned. But I still ran everything he said by my PCP and physiatrist and even if we do an injection, I’m going to need accommodations because of my underlying conditions.

But I also realize it’s challenging and not always possible to be seeing so many specialists all at once. I have to because of all the chronic conditions.

Eventually, whether you want to do it sooner, later or at the same time, I’ve gotten the most traction out of a good PT. But I prefer a DPT ideally not at one of the chains (though I’ve been hurt just the same by them as well)…if you can find a good private practice or medical center where you can find someone with more experience, will take more time with you and crucially (!!!) understand chronic pain and how it affects your experience with pain, I’ve found that’s where I’ve gained the most progress even before I had clarity of diagnoses. A fibro-informed PT should know that starting off really slow and progressing slowly is requirement to prevent a flare. You can always add more; it’s hard to take it back if it causes a problem. A good PT might even be able to help you figure out what’s wrong or which specialist to see. And help you feel better. But there’s a lot of uninformed PTs out there in the world, just like with anyone else =\.

A pain neuroscience approach especially because I have central sensitization and fibromyalgia has also been really important for me, such as what’s used in the all Curable. It’s not the end-all, be-all, but what I learned about how chronic pain works and the strategies for calming my nervous system from my PTs has really helped me through all the pain and frustration and honestly trauma of being harmed or dismissed within the medical system. I’m really sorry you’re experiencing that trauma now too, but wishing you all the best.

There are attorneys who work "pro bono" which means for free. A are supposed to do that as a part of their practice. But there are also attorneys who will take your case for free because they feel they will win it. Personal injury attorneys do this as the norm. One can also take their case to court themselves through small claims (I have done that several times) and you can also sue through arbitration through your medical provider, insurance company or thru the state. Good luck.

Yes, I hear, especially on old TV shows or movies how there are "pro bono" attorneys, which means free. The trouble is finding some. Because you have to kiss a lot of frogs to find a prince. In fact, in reality, one has to get past the receptionist/secretary to just get one free consultation. What it all ends up being is begging, at best. Like at one's very best, begging. And I have made it to 3 pro bono visits with attorney's over the years. One gave me good advice but told me I'd have to do it myself. The other two listened (sort of) and then said "No."

I gave up begging anyone, for anything, no matter how much I needed it, when I left the last abusive spouse I had. Besides, it's just plain outside of my value and moral system to beg anyone for anything. Only sadists make us do that. Now, asking, I don't mind doing. And asking, I've done. However, that requires one to accept "No" as an answer to our requests. There is no list of Pro Bono Attorney's. At least there are none the public gets to view, in any of the now 8 US States I've lived in over my 70 years. Just because pro Bono work is supposed to be part of their practice doesn't mean they help those who need it most. I am aware of small claims court, and a couple times I have almost taken someone into it. I do not rule out that as an option in the future. I know nothing at all about arbitration through my medical provider. It's medical providers I was referring to. How could we use them that doctor/provider us through arbitration with them? Sue by myself? Against them having high priced attorney's? I'm not interested in spending full time weeks and weeks (months) preparing and doing all the paperwork for free, just to be made a mockery of in court. There are other ways. Such as gaslighting the doctor much as they do to us via survey's, online ratings systems, through Amendment Requests via their own medical records departments, and then Statements of Dissagreement attached to our medical records when they lie horrifically. There are Grievance complaints through the health ins that's paid for us to be abused/gaslit. There are actually lots of legal options, and I prefer the ones that do not require me to grovel before some 50 attorney's receptionists, by phone, just to be treated like an idiot by the "pro bono" attorneys, themselves.