Bilateral THR So, what now? Three years later and so it goes on and on

[nanamac]

The clinic I just left (I didn't trust my life with them!) wanted me to see their therapist as well, and I just may go to see her to tell her what this QUACK did to me! I am very careful now of what I agree to go along with after the "nothing to it!" attitude from so many before my botched THR.

First and foremost in my mind now is that medicine is a business and the goal is for these docs is to make money. I'm beginning to think that patient care/well being is down the line somewhere after that (NOT WILL ALL BUT A LOT). I refuse to give one more red cent to any of these that don't put me & my well being at the top of their list and they have to prove themselves to me before anyone is going to use me for a guinea pig.

I believe in my heart and soul that the doctor that damaged me was too inexperienced to be operating alone and has continually lied to me to cover his behind. I thought by going to that hospital that ANY of the surgeons were the best! Boy, I sure wish I found BS before the fact because I didn't know what I didn't know! He still won't admit that he fractured my femur and missed it and he let me stay in rehab until it fractured on thru to the implant so he could say it happened there! I know in my heart that this is exactly what happened.

I am NOT blaming myself for this, I blame everyone that overs sees these kids. Yes, they have to start somewhere and I do believe he is a good surgeon BUT that should be up front with the patient and if I could go back...well, there is no going back so I am living my Hell on earth. My opinion only here for sure.

 

[Giraffe44]

I believe that the whole medical establishment is in a CYA (cover your bottom) mode. I've had some bad experiences, although nothing like yours, and got nowhere. Hang in there--maybe the next doctor will be the right one. You're in my prayers.

 

[nanamac]

Hahahaha . Thank you! I was blowing off steam as I am known for. But I did appreciate the comment. And as I said, this is NOT Every where , but it certainly does happen. My OS actually had the nerve to say to me at my last visit "why are you still coming back? you've been here five times already!". To which I said "because YOU broke me leg and I need YOU to fix it since nobody else will!

Then we got into a little volly of "no I didn't, yes you did, etc"., like I/we were in grammar school! I knew it wasn't going to go anywhere as he is really about 7 anyways so I just played the game so I could still get pain meds from him. Then when he decided I should let him take the wires out, I left, as my vascular surgeon had already said not to let him do that unless he was absolutely sure that was what was causing the pain because it would be an invasive surgery none the less cutting thru lymphs etc.

By this time I was pretty sure he wasn't operating on me again. I had visions of not making it thru the surgery for some reason or another ... I lost a LOT of blood during both the original THR and revision...

 

[Ruby Red]

Do you know if x-rays were taken during your revision? They might show a hairline fracture.

What a nightmare for you and all the others who are still in so much pain. I hope you can find some kind of resolution.

 

[nanamac]

Ruby, I had the revision because of a fracture that was missed during the original surgery, until it broke thru to the implant 2 weeks later. The OS put "7" cerclage wires around the femur during the revision and I strongly feel that is where the problem lies, that they are "holding" everything in place so nothing is showing on x-ray.

I have Dilaudid , 2mg which I am almost out of (will last until tomorrow) and that wears off fast but it does work for a few hours.

Tomorrow I go to the old/new Pain Clinic to try this doc again, to see if there is anything he can do until I can get someone to agree to do a revision...I am BEGGING at this point! I really do not want a morphine pump because that is NOT fixing the problem! I am truly afraid I may lose my leg if they don't do something soon.

If the Pain Clinic can't or won't help me tomorrow I am going directly to my newly chosen PCP to see if she will run the labs/films whatever all over again. See, these drug guys are really not being very helpful or sympathetic because NOTHING is showing to be wrong anywhere! And the OS's can't find anything wrong so they get upset with me like I have wasted their time!

I truly am stuck in a very bad place. Any suggestions anyone?

 

[lncrwley]

Nanamac, you are almost where I am. I have 6 cerclage wires. I keep complaining that it's the "twisty ties" where they wires meet is where all my pain is. I was offered gabapentin on top of oxyconting and oxycodone. He also wanted me to think about prolotherapy where they inject a sugary substance into where it hurts. ENOUGH ALREADY!!! I just want the damn wires out. The doctors think I will get used to them and that the tissue should callus over. Well, guess what? It's been a year and it still hurts like it was day 1.
Do you feel like when you move certain ways or put pressure on certain spots that the "twisty ties" where the wires meet are tearing through all the tissues inside your leg? That's what I'm feeling.

Lynne

 

[nanamac]

Have they ruled out Trochanteric Bursitis Lynne? That can be an EXTREMELY painful condition and all the meds in the world don't take the pain away. I know I have referred to that before as a cause of pain but it truly is a terribly painful condition.

Having had it before and knowing what it feels like, I am positive that is not what is causing my pain and I also know I do have it on both sides. Mine feels like my leg is on fire and it is in the very core of my leg and radiates from within outward. Off the meds it is as bad as any pain can be at it's worse. Only way to describe it, worse pain ever! Like you know there is something seriously wrong.

I would not be a bit surprised if further testing shows necrosis in my femur. I am seriously scared how bad things are in there and wish I knew what test to request to figure it out! I shouldn't be the one acting as the doctor!

 

[lncrwley]

Yes, they have ruled that out as my pain "spots" are almost consistent with where my twisty ties are and the top spot is lower than where trochanteric bursitis would be.
My doctor that put the wires in, said that they were a permanent thing. I told him that I didn't think so, anything that goes in can come back out. Then he said well, we will have to wait and sees what happens one year out. I won't be going back to him as I've lost the insurance I had and the new one that starts on the first doesn't include his practice. I'm actually glad for that fact and the fact that the original doctor I wanted to do the surgery didn't take my insurance but takes my new one.
Do you think if the wires are removed, your pain will improve? That's what I'm thinking in my case but I have to get a doctor to agree with me.

 

[DaveGM]

Dear Nanamac

you were the first to post helpful and reassuring advice to me back in May 2011 after my first hip replacement.

Little did I know then the pain an frustration you were going through, and there was I moaning about the speed of recovery after only 3 weeks!!

Since then I have appreciated that not everyone is the same and there can be frustrations after hip replacements.

I truely hope you can find the path to a solution. It must be very frustrating fr you after so long.

Unfortunately I can not offer any solutions, BUT

I am really pleased to see you back as an active member of this forum and I am sure all the members here will give you their full support.

Kind regards

David

 

[nanamac]

I remember you well my friend and have often thought about my old Hippie friends! So glad you are not a member of the pity party though. You were one of the first people I met here to have both hips done and I was in awe of you! So glad things are still good (?) or I hope they are!

Best to you!
Janet

 

[nanamac]

Well it seems that all the pain clinics around here want to implant spinal cord stimulators for us chronic pain patients instead of prescribing pain meds. Meanwhile the new/old pain clinic doctor told me today that there is only a 50% chance it will work and they only give minimal relief . Huh? And you can never have an MRI again if you need one!

Yup! Gonna sign up for one of those right away . NOT!

Back to the drawing board...

 

[Songlady]

nanamac - Janet, I just found your thread: I never "peruse" threads, just respond to places where I am tagged. So... anyway, my thoughts are with you, friend. There ought to be some way you could get to one of those places Jamie mentioned.....hmmmmmm (putting on thinking cap....)
Hang in there -

 

[nanamac]

Hiya Meg. Yes, there is no end to the amount of pain. Just when I think it can't possibly get worse, it does. Today's visit was horrible and totally unhelpful. Made me remember why I didn't go back after the first time! Needless to say, I won't go back again.

My Rheumatologist wants me to go to Mayo in MN (I need to discuss this at our next visit!) so I will be looking into that I guess as my last resort (thanks for the helpful info SL). Today's doc said if the guys I went to already said it is OK, that means it CAN'T BE FIXED! What??? Which of course has made me want to do this all the more! What a bunch of bologna! They don't WANT to touch one of their buddies mess ups and I know it!

I will also look into the NY guys Jamie, thank you too! I just don't have the energy for much in this condition and no help either. This is knockin the stuffin outa me...

 

[Poppet]

Hi Janet.. So sorry hon, I wish I could help.. But I am here to support you, you know that right?

Many hugs from down under xx

 

[luluohio]

nanamac
Like you I had a possible hair line fracture when I had my RTHR in January this year. They said it was either a false positive or it was healed after 6 to 8 weeks of 75% wb restrictions. In the beginning of May I diagnosed with Trochanter Bursitis and have not been able to walk yet without my cane since my surgery without causing pain. Any increase of activity flares it up.
I really think it is just taking extra long to get over this bursitis but I would think this resting would improve the situation, it is not. My OS is suppose to be the best in this area, so he has a lot of experience. That said, nothing is perfect just because the OS might be considered perfect. His patients are said to recover in less time and have less complications, I guess I'm just a misfit. He is too busy to fit me into his schedule before my next appt the end of July.
I've been going to a Physiatrist he was the original doctor that told me I had bursitis, he gave me a cortisone injection, it didn't help and he told me to rest. I saw him a few weeks ago and he gave me some topical cream and said I should go back to my OS because there might be something wrong with my hip replacement or it is taking me extra long to heal and recover from the bursitis.
How long did it take you to recover from the bursitis? Were you diagnosed with your bursitis before your revision? If so, how long did you wait before seeing someone for your revision? I just think another OS would see $$$ and start talking surgery before I'm fully recovered from my bursitis.
I don't know how I'm going to deal with months of this bursitis if that is truly the problem. I can't rest the rest of my life. My muscles will get awfully weak with no exercise. I can't see a good outcome to this.

 

[nanamac]

Lulu, my fracture went undetected immediately after the surgery but while in rehab a shove to my side from a not so gentle CNA broke it thru to the implant. So, the revision was done 2 weeks after the original surgery. There has been a rotation issue ever since I had the revision so my leg won't do what it is supposed to.

The TB started acting up 6 months after the surgeries and my doctor recommended the cortisone shot be given under fluroscope..mine was done while in the CT machine! They needle aspirated the fluid first and then injected the cortisone. The results were immediate. To me, that is how the procedure should be done otherwise the doctor is guessing where he is injecting. Just my opinion.

You sound like there is more going on than TB as I was never unable to walk, it just hurt to touch or lean on it a certain way.

I have an update that I have been almost afraid to breath a word of but...MY PAIN IS GONE! I was so beside myself with pain last week and for a few weeks before that I was desperate to do almost anything. I went and had a chat with my pharmacist who was so helpful. In the past I had taken Cymbalta and had great results with it, but was NEVER off the narcotic meds. I stopped the Cymbalta about a year and a half ago because I was sweating profusely on it.

Well, Gretchen suggested asking my Rheumatologist to start it again, at the lower dose and I am OFF all pain meds, on the Cymbalta 30mg twice a day and the pain is GONE BABY GONE! I am absolutely astonished! All this time I think the pain meds were working against me! What I needed was my brain to be given the signals it needed from the Cymbalta instead od narcotics!

As I said, it is too soon to get real excited but I can't help myself. What are you doing for meds Lulu?

 

[nmscienceteacher]

Nanamac, I sincerely hope the cymbalta keeps working for you and you get a respit from the constant pain. Life would be sooo much better if you get some relief. Ipads and auto correct is a right pain in the acetabulum!

 

[Poppet]

Hang in there Janet.. I feel for you so very much and think of you often

 

[luluohio]

nanamac
Thanks for that information. I am still taking oxy 5 mg 3 times a day. I did ask my primary care for something for depression so she started me on a very low dose of Celexa 10mg a day. It saved my sanity, I was about to lose it. I got down to 2 oxy a day but I've been on it since 2-3 months before my surgery, I was having a lot of bone on bone pain before my surgery. I'm hoping to cut it down and get off the oxy completely soon. It's not an easy thing to do after you have been on it for a while. I think it would make me feel a lot better too.
I've tried Cymbalta years ago but I felt like my eyes would pop out of my head, it didn't agree with me. It made me extremely hyperactive. Everyone is different. I tried several similar drugs over the years and I didn't like the zombie affect. I was ready to be a zombie, if that's what it took this time, but Celexa at 10 mg was a perfect dose to keep me from chopping everyone's heads off and helping me cope with this disability.
I think I will try just walking without my cane again. Maybe this is all because I'm out of alignment or something simple. I feel like I've been walking on egg shells to avoid pain, Oh I hope my pain clears up like yours. I'm so happy for you! That's wonderful, it almost bring tears to my eyes.
I do ultrasounds and the doctor I went to did my cortisone injection under ultrasound guidance. I did an ultrasound on myself and there was a pocket of fluid below where he did the injection. He guided the needle into the area of the bursa not the fluid below. Maybe I would have better luck if we did it in the pocket of fluid. I'll have to mention that to him. If that helped you, that might be the key. Ultrasound is becoming a very popular method of needle guided procedures and is less expensive and quicker than CT.
I hope all continues to go well with you. It makes me happy to hear your good news.

 

[nanamac]

LULU, it is not gone, I thought it was, but it is better, tolerable! But, although I am not quite zombie-ish, all I want to do is sleep! I went up to bed to lie down at 7pm last night and MADE myself get up at 10:30 this morning! After taking the 30mg capsule after I woke up this morning, I am feeling like I want to lie down again. So, if this is to continue I won't be able to stay on it, but I am well aware there is an adjustment time for all of these meds and I am hoping after a few days I will level out. The pain is just below the surface and I am hoping that is where is stays.

I also had to put on a Flector patch (diclofenac) last night as I could feel it returning some. These meds are very expensive for me and I am going to call the drug companies tomorrow to see if I can get some assistance. The Cymbalta is $199 for 60/60mg caps and the Flector is $80 for 10 patches. I am on disability and my other meds for other issues take a good chunk out of that.