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

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nanamac
I was started on a low dose (10mg) of Celexa and it agrees with me. My doctor started me on the lowest dose and would increase it, if needed. As you mentioned, it takes some time for things to level out but going through those first few days takes some patience. I hope everything levels out for you and keeps your pain away.
I have a few Flector patches from a pulled muscle 2-3 years ago. You are having some benefits from them?

I decided walking without my cane wouldn't help anything. I'll just try to walk straighter and keep my posture in better alignment. I'm hoping eventually with rest this will all clear up and I'll be normal again.

It does worry me about the cost of drugs and medical treatment. I hope to keep my job so I can continue my benefits for awhile but I guess we all have to deal with that problem eventually. I hope you can get some help from the drug companies. Medicine costs are so outrageous, it should be illegal.
 
I've actually gone back to crutches to walk with 4 legs, not hop using one leg. It takes a lot of the stress off the bad leg and it is easier to walk. I have tried to do everything possible to help myself since none of these docs seem to realize how badly my life has been affected. I am just really staying put from doctor appt. to doctor appt. and that is not living.

But, when it is too much to do more than whet is absolutely necessary that's just the way it is. I wish one of these guys could live with me for a day and see just how difficult my life is. Thanks to my FORMER surgeon who I have caught in way too many lies to cover his behind.
 
FYI Lulu, I had to remove the Flector Patch last night as I was in terrible pain again and I think that may have been causing it this time. That happened before on me but I wasn't sure it was caused by the patch...now I know. So, lets see how the Cymbalta alone works. I try acupuncture tomorrow as I will do anything suggested to me if it will bring any relief. Has anyone else done that? I did it once to quit smoking and it hurt like the devil so I stopped. I guess she didn't do it right because I've heard you are not supposed to feel anything. We shall see ...
 
Dearest Ones, I am 7 weeks out from DAA and after reading all this guess I'm doing well. I was going to start whining but after what you all are facing I'm fine. What I'm getting is an aching in the lower leg but am able to actually go to the gym and walk the treadmill and ride the bike. I am sending you all much love and healing light in prayer. May we all recover and have a (mostly) pain free life. Alohalady
 
nanamac
Hey, You mentioned you had a CT and located some pockets of fluid that caused your TB. Did it help and was the pain gone for a long time? I just found out I have a pocket of fluid only about one inch by one inch. I'm considering going in this week for a cortisone injection in this area. It might be the key to helping get rid of this pain. I'm praying, I just want to know your overall outcome from this procedure. I obviously know it might not solve all my problems but it's somewhere to start. Please let me know if it was very helpful. Thanks
I talked with a few people that said acupuncture really helped them and made a big difference. I was thinking about trying it too. I had a lymph massage and I think it helped, have you tried that?
 
Lulu, the relief was immediate as they aspirated the fluid pocket and then injected the anesthetic or cortisone. In any event, it has been almost three years and although I can feel a smidge of it returning, it has totally gone from the moment I had the procedure. I think the secret was aspirating the fluid. I would do it again that way in a heart beat, but I would be hesitant to just let the doctor inject without first draining. That's just me...

On another note, I went for my first acupuncture session today as I was in the ER again last night. The doctor x-rayed and said all is well, but feels it is hamstring/muscle/tendon issue and I agree as I remember right after getting hone from rehab three years ago the PT had me lift my leg a certain way and I felt something snap and the pain was unbearable. She actually had to drag my leg back to the bed and when I called the OS they just said to ice as it was "normal" post op pain. I think something serious let go at that time looking back now...any ideas what could have snapped anyone? And would it eventually have healed or could that still be the cause of all this pain?

I am feeling pretty good right now since the acupuncture but am on Percocet from the doctor last night so we shall see...
 
nanamac
Have you had a CT recently? I have been experiencing a lot of pain with this bursitis. I think once you have it, you may have a greater possibility that you might get it back. I would think pockets of fluid would push on nerves and tendons one time and may feel completely different another time. I don't know I just thought maybe it might be worth looking into. You mentioned how painful it is, considering I'm going through it right now, I can't think of anything more painful. I feel like a horse kicked me in the butt.
 
It never felt like that to me Lulu..it felt like a needle was sticking into me, sharp! This pain is burning, dull, achy. And it is too wide spread to be TB. This is definitely different on all counts.
 
nanamac
I guess my thoughts about TB were out of line. I thought about it later. I know there are certain pain points associated with TB for diagnosing it anyway. So I don't know what I was thinking last night when I wrote that. I guess I was just focused on the pain aspect. I hope you feel better soon. My pain is dull and achy with TB but it's on the lateral, posterior part of my thigh. I do get muscle aches in my anterior thigh and down to my knee at times.
 
Update...saw a new PCP as well as another OS and the verdict is...permanent nerve and muscle damage from the THR/fracture/revision. There is no surgical cure and going in again will not fix anything, only add to the already severe pain.

Last week I had to go to the ER twice as nobody would refill any pain meds (thus the new PCP) as they couldn't find a reason for the pain. ER did x-ray and ultrasound and assumed it was a sprain or contusion, but the pain was /is unlike any other on my pain scale. Even the shots of Dilaudid barely touched it. Thus the new PCP.

So, when I see her in a month, she will start me on Neurontin or Lyrica again. I could not take these in the past because of swelling of my hands and feet, same with Methadone, so we shall see. In the meanwhile, she was compassionate enough to prescribe 4mg Dilaudid 4 times a day to get the pain under control until I see her again. Don't know if I will be able to wait until July 24 so I may be in to see her before that...

Still waiting to hear back from Mayo since my initial calls with them. may call them again later today...
 
Janet, I'm glad to hear that you're not letting this latest diagnosis of "permanent damage" stop you from pursuing Mayo clinic or possibly one of the doctors in New York I gave you. I'm not so sure I'd buy that diagnosis and would want to hear the same from more than one source. Good for you!!!
 
I agree Jamie. Also, although this guy is a good OS (you did Google him earlier) I am sure he was not as helpful and kinda told ya so because he is the guy I cancelled the surgery with 6 years ago. I took my daughter and she felt he was totally professional however, he did remember me and I think was a tad jaded in his remarks.

I am NOT giving up! Telling me what he did just made me want to prove him wrong all the more so! I have not forgotten about NY. The pain has been so severe lately that I have not been able to do much more than deal with that for now...I will NEVER give up :wink:
 
Update. It is nerve damage for sure. I had to call back the new PCP as the pain was still unbearable even with the Dilaudid every 4 hours and she put me on Gabapentin right away and BINGO! For the first time in 4 years I am pretty much pain free! I am walking up and down the street, something I have not been able to do since my surgeries.

My leg is still very weak of course from not being used in 3 years but now knowing what is causing the pain I can start on PT again and try to get it going again. It is really atrophied. I was as low as I could go a few weeks ago but now I have HOPE back! I truly had given up!. And although my leg is crooked, I can live with that as long I am not in pain. Thank God for this new PCP. I actually left that whole health care system as they will NEVER get another penny out of me! I think I am finally on the right track.
 
[Bonesmart.org] So, what now? Three years later and so it goes on and on
nanamac, I am so happy for your that you have found what the problem was and a medication that controls it and keeps you pain free. Now you can really get back to living. Persistence and refusing to give up does pay off. I am just thrilled for you.

Take care and keep us posted. We care. [Bonesmart.org] So, what now? Three years later and so it goes on and on
 
Great news Janet.. fantastic, sounds like you are finally on the road to recovery after a long journey of discovery :)
 
Bad news, allergic to the gabapentin. Had to get off ASAP and it took a week of double fluid pills to get the feet and ankles back to normal. Still VERY sore! Now the pain is worse than before the gabapentin. Had this same reaction years ago but had to try again as nothing else has worked. Have an appointment with the new PCP next week and Monday am booking an appointment with OS #8. This one got his training at the Hospital for Special Surgeries in NY so fingers crossed...

Also, did hear back from Mayo in MN but they want all my records and the records don't show anything wrong. I'm in the process of compiling pictures and films as a picture of my crooked leg shows so much more than a film...

More to come...
 
Dear nanamac I don't know what to say, except that my heart goes out to you and I hope you find an answer to your pain. It's terrible to be in pain and not have a treatment for it when you know something is wrong.
I do hope OS#8 has some answers for you. Please keep posting so that we can support you and hear how things are going. Good luck, my thoughts and prayers are with you.
 
Well, enough is enough for me! I have said all along if I found an OS willing to re-do my RTHR that was broken during the first surgery, I would do it again to straighten out the damage! BINGO! I found him on Friday.

He didn't hesitate seeing and acknowledging everything that I have been complaining about for over three years. He feels the cup is what is throwing my leg off to the side and not a crooked stem and it makes perfect sense to me.

So, on August 13th I am having a cup revision. It is also making my leg appear longer which in fact my legs are pretty much equal in length. By re-aligning the cup it will straighten out the angle of my leg as well as give me back the 1/2 inch I lost during the first fiasco.

All I have ever wanted was to be out of pain and if there is an impingement going on, hopefully this will be rectified as well. All I can say is, as much as we fear having a major surgery, here I am going back for a fourth hip replacement and if I can do it, ANYONE can do it!
 
BTW Jamie, although I couldn't get to NY to the Hospital for Special Surgeries, this doctor did his training there so I feel like I am in good hands AND his specialty is replacement surgery. I will PM you with his name so you can let me know what you think. I have left my former Healthcare System and gone to a totally different one where I am finally being treated like a human being who is in pain, instead of someone faking it to get drugs!

It has been a terrible journey of pain and disappointment so hopefully I am headed in the right direction now...
 
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