THR First Time Posting - Rt Hip Replaced 6/2014 - Lt 12/2014 - 7 Years of Severe Pain - Need Help

Anonamouse

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Hello to all,

Been suffering for 5 years. Had an anterior THR, and came out with a botched ITB. They ace bandaged my enormously swollen leg from the ankle to my groin. It immediately felt wrong, like my leg was twisted in to fit. Surgeon repeatedly said, give it time. Last year we parted company after he said my expectations were too high and refused any tests to diagnose where the pain is coming from.
In 1 years time I am now on Surgeon #3. They immediately go to the hip replacement to see if it's loosened. Of course they need there own x-ray, MRI, and blood work. When they see the implant is intact they dismiss me and won't address my itb. When I ask about it to go further, I've gotten eye rolls, told 'I don't know', and even had the hand go up, to stop me from talking.

I have spent thousands of dollars on copays, unnecessary injections, and new MRIs (Btw,MRI's aren't effective because of the implant). I am now at the point that I can't wear pants or panty hose, drive, or sit for long periods, because my knee turns under and takes my greater trochanter with it.
How can I find a Dr. that will look at my knee and ITB, instead of jumping to the hip implant?
I am not being taken seriously, and it is very demeaning.
 
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:wave: @Anonamouse and welcome to Bone Smart! Can I ask you to list the dates and types of surgeries as well as what hip? Well get it added to your signature so others coming to your post have an idea what you've been through and where you're in recovery.

I'm guessing ITB stands for Ilio Tibial Band? Going to leave you some information on that to look at, maybe something in the article will prove helpful. Have you tried any physical therapy or anything besides injections for this?

 
This is my first time posting in a while although I have visited to read other Posts that may compare to my issue. I reached out on Twitter to the Moderator who encouraged me to Post and to be honest, I haven't because this has been a very long journey met with frustration and anger and a lot of tears. It is incomprehensible that a human being can undergo a Total Hip Replacement and come out WORSE than before. Also sad, Doctors don't care.

When my Right hip was replaced in 6/2014, I knew something was wrong immediately. It felt like my leg had been twisted up and forced in, with my calf now going in the wrong direction. I was assured that wasn't possible, it will all settle in eventually.

I had to go to Pain Management right out of the Hospital because I was sewn so tight, (anterior approach) I didn't have a 'crease' under my butt to thigh, and couldn't bend or sit. It was one unit
Started PT, they said I now had bursitis, used stim and ace bandaged me from top of my thigh to ankle so I could stand up. Doctor again said, "Its like a House settling" "You're fine."

My Left side lumbar began hurting and causing my leg to go numb. Hip Surgeon says, we have to do your left hip immediately and that was why the Right Replacement was hurting (?!!!) I foolishly agreed and now know it wasn't critical. He just sewed the right one so tightly, my Trochanter flipped underneath me and pushed out, and I was and am still, sitting on my SI Joint, with a twisted femur and a trapped IT band.

In January of 2019, 5 years later, the pain hit a point where I could barely walk. My Surgeon took an Xray and prononunced everything perfect. I asked him to do an MRI or CT Scan to find the pain and he refused. Big personality flip, and he became very angry and said, "Your expectations were too high!" I told him he was right, and he would no longer my my Surgeon.

I'll rewind a bit. I live in the Greater New York City Area, on Long Island. Health Care is very poor for Orthopedics not only here, but as I found out in NYC as well. I"ve seen 8 Othopedic Surgeons since then. Here is the problem: MRIs shows nothing is wrong. The metal implant is present and they can't get a clear Image.

I went to a prominent well-known NYC Hospital, Prominent Hip Specialist. He was going to get to the bottom of this and help. I went for a MARS MRI, and the first statement on the Report, says the implant is present and the images aren't clear, but nothing is wrong. Doctor says, you're fine, you don't need surgery and leaves the room. I asked why I can't walk, and his answer was, "I don't know."

That's the problem. They don't know. I read all these studies about how they determine the implant was the wrong size or angle, and when I have I asked these Surgeons, they say "Oh, I dont know."

I've been to be PT, What ever it is, its too late for that to help. Psosas injection, no change; IT band injection, released the trochanter pressure but my leg still bends outward from the hip, so I can't raise my leg, or sit in a car, or walk, or stand for very long.

My Scar, Anterior, started pulling away and formed a very large wedge on top with a deep divot on the bottom. It was suggested that maybe it was closed incorrectly and the layers could be twisted.
Did a Scar revision 12/2020. Removed the wedge, straightened out the tissue. Thigh still falls over flat, trochanter pulls downward and I still sit on my SI Joint.
I am dependent on Trigger Point Injections bi-weekly, now weekly to be able to stand and put weight on my leg.
Last ditch effort, I went to a Prominent Surgeon who specializes in these things, and he said there's nothing wrong with you orthopedically. Its probably neve damage. (Yes, I did a Neuro too.)

Today, for the first time, I got a glimmer of hope. A Pain Management Doctor that I used years ago after an accident is now on my Insurance Plan. I called and he got me right in. He listened to the whole horrible mess and said he wanted to do an SI injection.

I went into the Surgical Suite, laid on my stomach, which is the only position that I don't feel pain in, and when he started the fluoroscopy, he said, "This hip is too big for you! I'm not a Hip Surgeon but I see a lot of these and it's too big. It looks like they made it fit by forcing it into the socket, and that's why your hip doesn't rotate. Its too big for you" So there it is, seven years later. The simple act of doing live imaging while I was on my stomach validated my complaint. "My leg WAS twisted up and forced in.

The four New York Surgeons I went to don't have access to imaging tools that can diagnose this. They are unfamiliar with how implant size and angle can cause severe pain and its doubtful any of them cared enough to look at the imaging itself. They diagnose by reading the Radiologist's Report, and they Radiologist says Not Loosening.

I need help. I need to find a Surgeon to remove this Hip and redo it. I would be willing to travel within the USA for surgery.
 
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@Anonamouse,
Welcome to BoneSmart! :welome:
Sorry you have been through so much, assume you were seen at HSS in NYC, it is OK to mention surgeons and hospitals.
The pain doctor you saw probably used Fluoroscopy imaging, most surgeons should have this available, it is used for imaging many other injections where you want to locate the needle accurately.

I do not have any suggestions for surgeons, others on staff on the east coast may have some suggestions.
You can use our Surgeon Locator at the top of the page to start your search for another surgeon.
 
Hi, @Anonamouse. I'm glad you found BoneSmart and we'll do what we can to help you. You've certainly been through the mill with some uncooperative doctors in trying to get to the bottom of your hip pain and I'm so sorry to hear that.

The first thing I'll need to start pointing you in the right direction for a different surgeon or surgeons to see is to know who you've seen so far. You can post that information here on your thread or send me a personal message if you prefer that. It helps to know who you've seen so that we stay away from those doctors and clinics as much as possible. I do have a couple of surgeons who might be able to help you in New York City, so that would be where I'd like to start.
 
Thank you. No I havent been to HSS because they are not in my Insrance Plan. I wasn't sure about mentioning Hospitals and Doctors so I didn't.
I have been to NYU Langone and Northwell Health. I'm hoping I can find a Surgeon to remove it.
 
@Anonamouse
You will notice I have merged your two recovery threads, it helps us advise you if we have your information in one recovery thread.
Thanks for understanding,
Chris
 
I didnt realize I actually did post! I wrote it and thought I saved it. Thank you.
I have made some progress and now know the cause. Hopefully I'll find a qualified, compentent Surgeon to remove it.
 
Hopefully you will find a competent surgeon who recognizes what has happened to your hip, and be able to do a revision, with an implant that works for you.
 
Sorry to hear about your problems and further problems with the health system. I left LI decades ago, had my first hip operations done there. What part on LI are you, I lived in Nassau County.
 
It sounds like your insurance may be a little restrictive. Is it an HMO or a PPO policy? Are you sure it covers out of state surgeons? I'd hate to recommend doctors to you that wouldn't be supported by your insurance.
 
I used Dr. Seth Jerabek at HSS 3 years ago for my first THR when I lived in Suffolk County. I am now getting ready to have my other hip done and unfortunately I am on the west coast now and cannot use him. That being said I do know HSS is part of Norhwell Health and possibly in your plan now. I would not hesitate to recommend Dr. Jerabek. Good luck I hope you get the answers and help you seek.
 
If you are on Medicare, you may want to switch to original Medicare during open enrollment in the late fall. It would allow you more choices of physicians.
 
I'm looking at AARP's United Health Care Plan F. The monthly Premium is high, but it will be more cost effective in the long run. Anyone have any experience with it? Greatly appreciated.
 
Plan F works well for me. Make a list of the pros and cons of various plans before you decide.
Keep in mind you can change during open enrollment in the fall if you are unhappy with your plan.
 
Wow I thought I had it bad. I had a thr 3 years ago. My pain never went away. The surgeon that did it said everything was fine. I had Kaiser and he was the only dr in my area. Luckily I am a disabled veteran and have medical through the va. At first the new surgeon thought the cup was loose, but after the ct scan he said it could be either an infection or soft tissue damage. So now more test to see which way to go. I am tired of being on pain meds and hope he can find and fix my problem. Good luck to you.
 

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