Complex hip pain with no answers

Posted by leximercedes @leximercedes, Aug 23 12:39pm

On May 20,2024 I woke up with really bad hip pain on my right side. The pain goes into my groin , my lower back, the side of my hip, and right below my butt. I could walk I just had to walk slow and use a wall to make sure it didn’t give out. But I could not sit or bend over or drive and stairs made it worse. I started at an Orthopedic Practice (we will call Place A) and that doctor didn’t even examine me and told me I had bursitis and needed physical therapy so I went to physical therapy and it made it worse to the point where it was unstable and I fell. When I called Place A and told them this and asked if I could make another appointment for that week they said the doctor was in surgery and to go to the emergency room which was just a waste of time that made it worse. When Place A did agree to see me again I asked for a MRI and he told me I didn’t need a MRI for him to know what was wrong and he gave me a cortisone shot into my hip. And sent me back to physical therapy. It did not get any better so I sought out a second opinion and ended up at the second orthopedic practice (Practice B). I originally saw a PA there and he said the cortisone shot was put it the wrong place by Practice A and he did another one. He also ordered an MRI. The shot did not help but we found from the MRI that I had a mild superior chondral laberal junction tear and a subtle interstitial partial thickness tear of the semimembranosus tendon. So the PA scheduled me an appointment with the orthopedic surgeon and he told me that there was a procedure he was considering but never explained what that was and first wanted to do a guided steroid injection into my hip joint. So I went to that appointment and he used an ultrasound marked the spot numbed it then did the steroid mixed with a numbing agent. While he was doing that it was incredibly painful and I had this pain going down my leg but I walked out of there the same as I went in. After a few hours of being home I went and laid down because I was in so much pain and shortly after that where my joint is was in excruciating pain and it got to where I couldn’t feel anything except pins and needles from my hip down on the right side and I was unable to walk. We called an ambulance and I was taking to the hospital. This was a whole new nightmare in itself because they had no idea what they were doing. They did a CT and a MRI of my lumbar spine and found that I have degenerative disc disease (which doesn’t surprise me because I have it very bad in my cervical spine and I already had an appointment set up to see a spinal surgeon about that) but I also have a herniated disc at L4 and L5. Side note I also have mild scoliosis so I do have spine issues. But they all told me that both the herniated disc and the tear were mild and wouldn’t be causing any pain. So they kept me there for two weeks because I couldn’t get walk but never sent in physical therapy until I was being discharged to evaluate me. Very long story short they sort of forced my hand for me to go to a rehabilitation facility where I was abused, neglected, threatened, screamed at, and called names. That facility also never did exercises with me (at this point any movement I had back was because I had been working on it on my own every day and all night since I couldn’t sleep due to the pain) each day they would just force my leg to go how they wanted it to and try to get me to walk and I fell many times. I had got to a point where I could move it to an extent but I could not put weight on it or lift the leg myself. Due to the mistreatment I was taken back to a different hospital where they set me up with home health care. When I went to make an appointment with Place B they were trying to avoid seeing me (it seemed as though they were worried they did something wrong with the injection and did not want to see me at all) so I made an appointment with another Orthopedic Practice (Place C). Meanwhile I am using home health care I have a bedside commode and walker and a leg lifter that I can use to get up and use the bathroom but I cannot walk at all and am in an unbearable amount of pain I have a wheelchair but sitting is so painful I can only do it for five minutes tops. The OT used a tuning fork on my leg and I could feel it vibrating all down my leg but when he put it on my hip and lower back I could not feel the vibration. The PT has made the pain increasingly worse I was crying and screaming and he still does it. When I went to see Place C she wasn’t a surgeon like I requested and she said she had no idea after just rubbing my leg. And she sent me to a pain management doctor who also works with nerves. That was a total waste of time because she didn’t examine me and just said I need to go see a neurologist. During all this I did have pain medicine at the hospital and rehabilitation facility and left the hospital with 8 pills. Which I used very sparingly but since then I haven’t had anything. While I’m he pain is not under control on the medicine it at least helps take the edge off. I’ve asked four doctors including pain management about pain medicine and they have all said no. I am also on muscle relaxers because if not the leg spasms really bad giving me even more pain. I am at a point now where I can’t sleep I can’t eat I can’t do anything because I am in so much pain. I am suffering 24/7 and I don’t know what else to do so I’m trying to find someone anyone that would take an interest in it and try to help me. Just some background about me I am 30 years old and I do have a heart condition called postural orthostatic tachycardia syndrome and when I’m in a lot of pain my heart rate goes very high so this has also been causing chest pain. I’ve had two minor heart attacks. I have fibromyalgia which I know is not helping the pain. But I think mostly what everyone is forgetting while there may be a nerve problem this all start with my hip and lower back hurting on my right side and I think that needs to go back and be something that is discussed.

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@leximercedes

I can’t wait a month because I can’t walk or sit or do pretty much anything my leg is still partially paralyzed and the pain is just to unbearable to wait that long. I have tried all of those things and the opioids did help but no doctor will give me any because they say it’s addictive which it is but I don’t really have addiction issues like that and I don’t need it for long just long enough for me to get a surgery or procedure or whatever they are going to do

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I am sorry about this. I know how humiliating it is to get opioids. I had to leave one pain management doctor because he started to have an attitude about it. There are particular buzz words to use and one of them is suffering. It is unethical to let you suffer. You were going to have to advocate for yourself if you’re out of private doctor, go to another doctor or go to a pain management clinic and explain your problem or call them for suggestions. I am in California and the laws here restrict doctor shopping. So it can become complicated if you change doctors trying to get the opioids I don’t know where you’re located , but your doctor can’t let you suffer. There’s other things like strong NSA IDs. Toradol is a great one. I get injections in my backside, but it helps epidurals and corticosteroids. They can do injections of lidocaine if it’s only one month to wait then I suggest you get some injections if you can’t get the opioids. Didn’t say what kind of doctor you’re going to are you at a private facility? Are you on Medi-Cal? Are you on Medicare? Do you have pain management clinics available near you and the best pain relief that’s non-medicinal is acupuncture. When my hips were failing and I had to wait for surgery, I drive from San Diego to Los Angeles for a three hour acupuncture treatment a couple times before my surgery and bio deep myofascial tissue release might help you. Sometimes it’s a big hopeless circle. You can go back to the emergency room if you can’t walk and ask them to check for herniated disc and you can ask your doctor to get you in on STAT appointment. With the surgeon. You can also get on a waiting list for your surgeon and you can get up every morning and call them around 9 AM to see if there’s a cancellation , good luck.

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@leximercedes

I can’t wait a month because I can’t walk or sit or do pretty much anything my leg is still partially paralyzed and the pain is just to unbearable to wait that long. I have tried all of those things and the opioids did help but no doctor will give me any because they say it’s addictive which it is but I don’t really have addiction issues like that and I don’t need it for long just long enough for me to get a surgery or procedure or whatever they are going to do

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Tramadol is not addictive call them back and tell him you got to have something even if it’s Tylenol 3 Tramadol doesn’t do a whole lot either but I take it with Tylenol and 600 mg of gabapentin . anymore it’s hard to see any specialist right away , but you could tell her to call you if they had a cancellation people cancel all the time for

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I live in Maryland and it sucks the people are the absolute worst. I’m in talks with a lawyer about the facility because I found out after they treat the people in the nursing home side the same way and I don’t want anyone to be treated like that especially a group of people that don’t have much of a voice.

I have fybro so I already see a doctor for that and because of my heart condition I’ve had a cardiologist for most my life. I’m contacting a neurologist tomorrow. I have seen a lot of doctors the last one was a nerve specialist and pain management. But it was a waste of time. It’s really not surprising coming from here. It’s actually expected for everyone here to be rude and not care at all.

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@gently

leximercedes,
I would look for an endoscopic spine surgeon. I could suggest https://drtonymork.com/. If you don't have the images from the hospital MRI and CT request them on CD with the written report. You should get multiple copies so that you can send them to many endoscopic spine surgeon. You have to find out exactly what is causing your pain.
You can usually send the CDs and have a telephone or video conference.
You aren't getting sufficient care and the delays are complicating your injury. Unfortunately, many patients don't get sufficient care. I feel certain there is help for you. Now to find it.

There is a minimally invasive procedure to repair chondral tears in the hip. https://houstonsportsortho.com/chondral-defects-hip-specialist-sugar-land-pearland-houston-tx/
You have a herniated disc in a sensitive area; it bears the weight of the entire spine. Herniated actually means that there is a tear in the annulus the outer portion of the disc. If the tear is deep enough the nucleus propulsus the center of the disc spills. It is extremenly acidic and because of its location it spills down onto a maze of nerves and is endlessly painful.
USC offers a free second opinion https://www.uscspine.com/office/online-consultation/

I'm sorry this is happening. It is so important that you find the source, sources of this pain. It can't be good for your heart.
Bless your search.

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I think @gently's suggestion is great and made me think of something else - a patient advocate. They used to be called Ombudsmen. In California there is an Ombudsman with the state. In hospitals they have them too. Insurance companies as well. @leximercedes depending on where you live/and your insurance provider try and find who is there to represent you. That is the job of the Ombudsman Office. If you are on something like Medi-cal in CA you can also ask for a hearing. I would hope they have those in every state. But I can only tell you about CA.
I don't know what your MRI says, but it is helpful to look up every single term and familiarize yourself with the words. I had a cyst once which was a fluid-filled sac. The surgeons/doctors over looked it. Going to a new pain mgt doctor he saw it. I paid for it $500 and in 5 minutes all of the pain like you explain was gone. I then took the insurance company to court and got the money back. Sometimes you have to "endure" and kiss a lot of frogs. A ton. Before the right thing happens. All I know is that you have to find some help. You are suffering. Remember that word. Also, please go back to the ER as many times as you feel necessary. You also said you had a surgeon who had an idea of what he wanted to do. He sent you for what I interpret as a "diagnostic test." Did you ever return back to him? Maybe it was just diagnostic and not for pain relief. I have had those and the doctor doesn't tell me its a diagnostic procedure - and I expected pain relief. You need to start open your mouth and getting your needs met when you have all these things. It appears to me that you stay silent and they dismiss you without your needs/questions being addressed. Sometimes we don't think of the question we have until AFTERwards. Find out a way to get your questions answered. Very important! I have been humiliated and pushed around. I push back. Too bad they are offended. It is MY life in the balance. Good luck.

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I did not go back to that doctor because they are the ones that gave the injection that a few hours paralyzed me and they basically wouldn’t see me again because they were worried they did something wrong with the injection and that was at John’s Hopkins so it’s not like I’m seeing just random people. But I’m not the kind of person to stay quiet I demand things and ask questions and I’ve argued with them but it still gets me no where. The problem at this point is it’s complicated and I can’t find someone who is willing to do complicated. Every doctor just wants some easy fix and it’s not going to be like that. I’ve been sending the films and the information to different places and they don’t wanna do it. It would also require more than one specialty and they aren’t willing to work together

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@leximercedes have you considered physician therapy? Most orthopedic docs will send you to a PT. Surgery should be your last resort.

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@jenatsky

@leximercedes have you considered physician therapy? Most orthopedic docs will send you to a PT. Surgery should be your last resort.

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I have done that yes

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Good Morning.
Your story is not unfamiliar and a few of us have been in a similar situation. We are never in the same place or shoes.
I would suggest continuing to be an advocate for yourself and learn from your providers. I had been to several doctors over DECADES. I have found some positive direction and understanding of what causes my pain, what could be repaired, and when physical therapy is less than beneficial. After three rounds of PT, three MDs, I finally had surgery, and it is solved one problem. Still have problems but it is all a work in progress.

Highly recommend Mindfulness Based Stress Reduction. You can find answers. Use those providers, they know a lot- but they don't have all the answers!

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They told you, "that both the herniated disc and the tear were mild and wouldn’t be causing any pain"? That, right there is your important clue that they had no business having whatever degrees they purportedly have. It's a rough lesson, but anytime a doctor/prescriber tells you that some part doesn't hurt, when you know it does (or you wouldn't be in that office), as politely as you can, get up and leave. Then, find one that isn't either a fraud or sadistic. More so when you have evidence that all is not as it should be. I.e. "They did a CT and a MRI of my lumbar spine and found that I have degenerative disc disease (which doesn’t surprise me because I have it very bad in my cervical spine and I already had an appointment set up to see a spinal surgeon about that) but I also have a herniated disc at L4 and L5." Someone should jerk the credentials of that place, but right now, you need proper help first. There's a reason people "doctor shop" and it is exactly this. Imagine this was a small child of yours. What would you do? Ignore them, until you get, at least, relief of pain and I don't just mean 10 days of hydrocodone. I literally moved from one State to another, and then, some more. All to get just decent medical care, not even great. But as you well know now, decent is pretty great compared to people who (as my ex used to say) "Don't have the brains God gave a chicken." A herniated disc and tear that is mild most certainly can be very painful.

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At the age of 69, I finally asked someone what "mindfulness" means. It smacked of Eastern religions to me, and mine isn't that. So, I'd never looked into it. The answer to what it is, surprised me. Vietnam vets know it as staying in today. Keeping your mind on what is in today. My religion also has one like it, which is to keep our minds on whatever is pure, is good, is right. Stuff like that. To move forward, leave yesterday and what wrongs were done you, in the past. If there are details you must not lose track of, like MRI or CT reports, keep those somewhere where you can access them easy for visits to the next specialist. And a note about ER's. I've been in more of them than I can count. They see the most horrific accidents, people coming in with axes in their skulls, stuff like that. They tend to view pain ranges (1-10) unlike most anyone else. Talking to ER providers about pain has never worked for me. They know a 10 as you just passed out from the pain. They see refugees who endured unspeakable things, and then we walk in there, so it's assumed our pain is nothing. Even if it's an 8. If no one has ever tried Toridol on you, and you have no adverse reactions to NSAIDs, see if your doctor might try you on an injection of that. There's pills too, but they are really hard on the stomach, unless you only do a few days total of it. I'd discuss it with my Dr. if you haven't yet, if I were you.

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