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Revision THR Complex Revision poor outcome Ehlers Danlos

UPDATE:
So sorry I haven't updated for so long. I am getting stronger.. very slow and still on oral antibiotics. I've heard rumors of lifetime antibiotics. I see OS that did the "infection clean out" surgery next week. My C-reactive protein is mildly high.. but it's been a couple of weeks since bloodwork. My Sed rate still high at 40. I have started PT.. very gentle. Just for strengthening.

Last night had a very quick sharp pain but it went away. Hadn't had that in awhile. No dislocations!! Yay. I saw second revision doctor in Oct. said" you've been thru so much, be patient".

I have very painful revised knee.. it "catches" where my leg won't straighten. I have a bone scan scheduled the first week of Dec.

I now have a huge spine brace that was prescribed by pain specialist as I am not a spine surgical case. I wear it in the morning until it stabilizes my spine and I have several hours where my back doesn't hurt.

Constrained liner in left hip 2nd revision is doing the trick! I have ptsd now after those 4 dislocations!
 
It's so good to hear from you and know you are getting better....even if it's slow. It's possible that your knee pain is resulting from the extra pressure on that leg as you recover from your hip revision. I hope it's that and not more serious.
 
Good to hear from you! I really like to keep in touch with some of the long timers. While your issues have been vastly worse than mine, the forum helps me to not feel alone in longer time issues. It’s kind of like a group therapy forum! As much as you’ve been through I am glad that you are doing as well as you are. A very Happy Thanksgiving to you.
 
Great to see this update. I have learned with Ehlers that everything takes 10 times longer to heal, so slow and steady definitely wins the race. The balance is to try to not overdo it and to allow yourself to take those baby steps. I healed a lot quicker than most non-ehlers patients but still found myself being a lot slower in some situations. You will get there, stay positive and take your time. I know this can be hard mentally when you've been at it a while, but you sometimes have to really try to trust the process. Big hugs.
 
I just read your thread and cant believe what all you have been through. You are one tough lady!!!
I am glad you talked about Medicare not paying for IV meds in the home. It drives me nuts that they wont. I am a nurse that places PICC lines and have to tell patients they have to come back in every day for their medications. It is horrible. If you are not on Medicare and under the age of 65 with good insurance you can do it at home. Does that make ANY sense???? It seems backwards. It is very hard for some people on Medicare to come in every day to get their med. Of course the only other option is to go to a rehab center for the time. It is really a sad situation. It really needs to be changed!! You are a trouper and I wish you luck with your recovery. Take it slow even when you you think you can do more!!!
 
lanstan said:
I just read your thread and cant believe what all you have been through. You are one tough lady!!!
I am glad you talked about Medicare not paying for IV meds in the home. It drives me nuts that they wont. I am a nurse that places PICC lines and have to tell patients they have to come back in every day for their medications. It is horrible. If you are not on Medicare and under the age of 65 with good insurance you can do it at home. Does that make ANY sense???? It seems backwards. It is very hard for some people on Medicare to come in every day to get their med. Of course the only other option is to go to a rehab center for the time. It is really a sad situation. It really needs to be changed!! You are a trouper and I wish you luck with your recovery. Take it slow even when you you think you can do more!!!
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Thank you so much for your post! Before retiring, we had great insurance, so Medicare not allowing home infusions was a big shock!
They offered to send me to rehab which has a terrible reputation here in our town. I don't get it! Medicare cut off my home health care and home PT after 8 days in the hospital with the infection and clean out surgery because I declined going to rehab hospital! They said "if I could walk, I didn't need those inhome services. I had just experienced my second hip revision because first one was botched. November 21, and July 22. I was in the middle of PT
 
It seems like you should qualify for both more PT and Home Health. I just dont understand their thinking. Dont they want you to get better so you dont have to go back in for more surgeries!!! Crazy system!!!
 
@Flowerfloosey69 …. Is your policy an Advantage Medicare plan? These are sometimes a lot more strict about what is covered than regular Medicare. If this is the case, it’s open season right now and you might want to think about changing back to regular Medicare with a supplemental policy to cover the copays. it’s usually a lot better coverage than an Advantage plan.

Also, you can always argue these decisions. Usually your doctor will help with that, so I’d contact his office and see what they can do to help you. I had home heath for as long as I wanted it with my insurance. All I needed was for my doctor to order it and it was done.
 
Medicare Advantage is not available in our area. We have "A", "B", "D". Great coverage
No copays but wouldn't pay for in home infusions
 
I had home health OT, PT, after second revision. First revision the surgeon said " we don't do that anymore"
 
I’m glad to hear you’re on regular Medicare and generally happy with it. I see the problem now with the home health….it’s your surgeon who is being unreasonable. If you feel you need home health, Medicare will cover it but it must be ordered by your doctor. If your surgeon refuses, you can request that your GP order it for you. I had to do this with my hip replacement last August.
 
My second revision in July I had Home Health etc. it was the first revision last Nov that the oS said they don't do that anymore. I changed doctors in between.
 
Ahh….sorry. Now I understand. Thank you.
 
Hello! Update!
The surgeon wasn't able to find the second stitch. It has resurfaced again but isn't causing any issues so I am trying to forget it. I'm still on twice daily antibiotics. I am progressing with less hip pain but still have some. Not sure if it will ever go away.
My rt knee revision done 9 yrs ago is now squeaking! I had a bone scan at the beginning of Dec. PA is supposed to be speaking to OS about seeing me and giving me my options. In the meantime, I finally went to a woman's Christmas dinner( first real social thing in a year) and two days later had COVID. The fatigue has been overwhelming and had to stop PT. Husband got it next so
We still havent had our Christmas. Back pain very bad and nothing can be done for that! Thank you Layla for checking in on me!
 
Goodness....I'm so sorry to hear that you're still having problems with stitches AND you got COVID. I hope you and your hubby start feeling better soon. Let us know how you're doing.....
 
@Flowerfloosey69 I‘m sorry to hear about all the issues you mentioned above.

I’ve moved your newest post to your own thread to maintain all your history in one place.
 
Long overdue update:

I am now 8 mos from second revision with constrained liner due to a misaligned cup from first revision. The second revisionist place a constrained liner to prevent dislocation, as I had dislocated 4 times, post first revision. Some might remember I had an infection a month after second revision. I am on lifelong antibiotics after the clean out surgery with Antibiotic beads placed.

I underwent PT that really was nothing but encouragement talk and at the end, suggestion of recumbent bike. After doing that for a few days, the pain in my knee and hip on that same side has prevented me from continuing.

I have a severe limp, pain and a "twisted" feeling, along with knee pain, and weakness
That is debilitating. I am very discouraged as my life has drastically changed. I see the surgeons partner next week, so I am praying for answers although I don't see any solution as now I am a poor surgical risk.

I will update after my appt next week. I hope you are all recovering well and getting back to normal life!
 
Flowerfloosey69 said:
Long overdue update:

I am now 8 mos from second revision with constrained liner due to a misaligned cup from first revision. The second revisionist place a constrained liner to prevent dislocation, as I had dislocated 4 times, post first revision. Some might remember I had an infection a month after second revision. I am on lifelong antibiotics after the clean out surgery with Antibiotic beads placed.

I underwent PT that really was nothing but encouragement talk and at the end, suggestion of recumbent bike. After doing that for a few days, the pain in my knee and hip on that same side has prevented me from continuing.

I have a severe limp, pain and a "twisted" feeling, along with knee pain, and weakness
That is debilitating. I am very discouraged as my life has drastically changed. I see the surgeons partner next week, so I am praying for answers although I don't see any solution as now I am a poor surgical risk.

I will update after my appt next week. I hope you are all recovering well and getting back to normal life!
Click to expand...
BTW.. using arthritis strength Tylenol once in am sometimes combined. With Advil. I have to make sure I have something in my stomach first.
 
I can literally feel your pain and frustration in your update. Please try to stay positive. 8 months, after all that you've been through isn't a true measurement. Every procedure, dislocation and surgery was cumulative.
It is going to take longer to recover than for the average THR.
Can I ask about the recumbent bike routine? Did you try beginning with maybe 5-8 minutes to start, or even less, with very light to no pressure?
Followed by a day or so of rest?
You say you feel twisted and in pain. Have you considered getting some nice, easy massages to ease the muscle tension in your body? You could ask them to stay away from any area that would cause you concern.
They could be so helpful for your feelings of discouragement, too.

So glad you updated but am sorry that you are still struggling so.
 
It’s good to hear from you. Even though you are still facing some challenges in all this, it sounds like you are remaining mentally strong and determined to work through them. Good for you!!!

CricketHip had some wise words for you. After all that you and your hip have been through, it is most likely going to take extra time for things to settle so you can see where you really are. I hope you will be able to find some things each day to enjoy so you can keep your spirits up.

Does the Arthritis Tylenol and Advil help? It sounds like a wise approach to use them regularly like you’re doing if it does make things better.

Has anyone suggested looking into a shoe lift on your good leg to help with the limp? You might pose that question to your surgeon and therapist. The fact that you describe yourself as having a “twisted” feeling makes me wonder if possibly either a perceived or actual leg length difference might be contributing to that.

Continue to let us know how you’re doing. We’re here for you.
 
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