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Revision THR Complex Revision poor outcome Ehlers Danlos

Hi @Flowerfloosey69
Thanks for updating. It is good to hear from you! Thankfully the itching has improved. It sounds like your doing well overall at one week post op. I'm sorry that you're so worried, but its understandable after all you endured. I'm sure you're dealing with some post traumatic stress.

I wonder if you are honest with your surgeon about your anxiety and fear surrounding dislocation if he can offer you some reassurance that would allow you to be more relaxed over the next few months until all restrictions are lifted. It may be worth a try if you haven't had that discussion already. I hate to see you feel like a hostage upstairs in your bedroom. :console2: I hope you have a nice weekend!
 
I've stopped my pain meds cause I really haven't needed them as I am mostly laying on my bed. With Ehlers Danlos, the peristalsis
That moves food they my system from one end to the other "GI motility" is uncoordinated therefore I'm experiencing sharp pains in my lower abdomen. I don't seem to be dealing with constipation.. but I can't get this to stop hurting. My husband is the best. He is very kind and caring and I feel so blessed by him( 52 years)

I just keep thinking 11 more weeks of being afraid to move. I'm having anxiety attacks when I get in or out of shower because that is where I have dislocated 3 of 4 times.
 
I can’t imagine living in fear. I used to be there to. As difficult as it is, you need to find which activities allow you to stay as active as possible. For the shower, is there a way to modify how you get in and out to alleviate some of that joint stress?
 
Can you call or text your home health person and tell them you need some advice concerning your fears and how to handle the restriction? If you let them know prior to the next visit perhaps it would give them an opportunity to gather some more ideas from their colleagues.
My home health/pt guy had experience with lots of other hippies, and was a fabulous resource for work-arounds for ADLs and restrictions.
Call your OS also, and get his input.
Best wishes going forward with a optimal outcome.
 
Flowerfloosey69 said:
Pumpkin said:
@Lexus05
I have a hinged knee, it works great, my knee is stable.
During pre op the OS said he was considering a hinged knee and another type I cannot recall. I told him I would need a hinged knee. When I saw him after surgery, he said you were right.

The question I would ask with all your revisions, is "Why didn't they give you a hinged knee sooner?"

Hinged knees work as well as other knees, and will work better than the ones you have now.
Will this be for both knees?
Click to expand...
Wow. Have never heard of a hinged knee! This gives me hope! Would love to know how it is working for you these days? I also have ligament laxity due to Ehlers Danlos. Hope you were able to find the right surgeon.
Click to expand...
I was reading about your dislocation and saw this about the hinged knee replacement . I just got the hinged knee 4 weeks ago ! What a difference . No pain at all the last 2 weeks , the PA at orthopedic had me bend it as far as I could with out pain and said it was at 90% . They took out the staples (80) and ok me to stop using the leg brace . The brace was to keep the knee from bending so it could heal since it was cut open twice so close together . I too had a dislocation of my temporary knee that was put in wh they removed the infected hardware . I have no idea how it happened and was in a knee brace the whole time . It was discovered in a routine X-ray . So I had to go back to surgery that same day so they could put it back in place . It was way too soon for the replacement surgery , l was still on the picc line IV for the infection . However , the dislocation caused my knee to be very unstable so the surgeon put in the hinged knee ! The surgery notes say that he tried the regular replacement but it wasn’t stable so changed to the hinged . There is a major difference , l won’t need PT , it will bend easily and it does ! I still haven’t found out much about the hinged knee , except that fo what I have read here . When I go back for X-rays on August 17 a PT is going to meet with me to go over it . All l know is the knee feels better than it has since before l had the first TKR surgery in 2018. After that it was always stiff, sore , painful, swollen and hot . Now it’s just fine none of those symptoms !
 
I just had 2nd hip revision a week ago, but my knee is next! The knee revision is very loose! Thanks for the info on hinged knees!
 
Hello, I am now 3 1/2 weeks post 2nd revision of my left hip. The previous pain I felt for 8 mos and the 4 dislocations is gone. I have been off pain pills since day 5. I am about where I was at 4 mos stamina wise after first revision in Nov. After all my body has gone thru, (2revisions, 4 dislocations, Subluxing, 2 bouts of Diverticulitis, etc) I am hopeful that I will be able to resume at least some activities I did before.
My routine at this point is wake up, downstairs, breakfast that my husband cooks for me, sit out on my deck in the shade for 2-3 hours a day, watering the pots on my deck and light pruning of the flowers, back inside when it gets too hot, sit in family room for a few hours and eat lunch during that time. Walking as much as possible keeping my left leg in front of me at all times. Then back upstairs to ice and elevate. Resting, dinner, shower, and TV watching with my husband, still laying in bed with ice pack. Then off to sleep.

I still have PT coming in and I forgot to mention my gentle exercises a couple times a day.

I have Posterior precautions for 3 more weeks and Anterior precautions for 9 more weeks.

I have some deep soreness and some pain, I believe is in the joint capsule but it is nothing compared to pain following first revision.
 
Flowerfloosey69 said:
Hello, I am now 3 1/2 weeks post 2nd revision of my left hip. The previous pain I felt for 8 mos and the 4 dislocations is gone. I have been off pain pills since day 5. I am about where I was at 4 mos stamina wise after first revision in Nov. After all my body has gone thru, (2revisions, 4 dislocations, Subluxing, 2 bouts of Diverticulitis, etc) I am hopeful that I will be able to resume at least some activities I did before.
My routine at this point is wake up, downstairs, breakfast that my husband cooks for me, sit out on my deck in the shade for 2-3 hours a day, watering the pots on my deck and light pruning of the flowers, back inside when it gets too hot, sit in family room for a few hours and eat lunch during that time. Walking as much as possible keeping my left leg in front of me at all times. Then back upstairs to ice and elevate. Resting, dinner, shower, and TV watching with my husband, still laying in bed with ice pack. Then off to sleep.

I still have PT coming in and I forgot to mention my gentle exercises a couple times a day.

I have Posterior precautions for 3 more weeks and Anterior precautions for 9 more weeks.

I have some deep soreness and some pain, I believe is in the joint capsule but it is nothing compared to pain following first revision.
Click to expand...
I am still experiencing anxiety about getting in and out of shower, but my new OS has explained in depth how the dislocations were happening, and it has helped a lot. Changing surgeons was the very best decision that I could have made. I have my husband stay in our bedroom adjoining the bathroom where the shower is while I get in and out. I'm being careful to follow my OS advice to " keep that leg always in front of you"
 
Happy to hear how well you are doing with your new hip and your new surgeon, it is a 180 turnaround from your last surgery.
Take it slow but sure, let you hip heal, and start getting your life back.
 
Flowerfloosey69 said:
Flowerfloosey69 said:
Hello, I am now 3 1/2 weeks post 2nd revision of my left hip. The previous pain I felt for 8 mos and the 4 dislocations is gone. I have been off pain pills since day 5. I am about where I was at 4 mos stamina wise after first revision in Nov. After all my body has gone thru, (2revisions, 4 dislocations, Subluxing, 2 bouts of Diverticulitis, etc) I am hopeful that I will be able to resume at least some activities I did before.
My routine at this point is wake up, downstairs, breakfast that my husband cooks for me, sit out on my deck in the shade for 2-3 hours a day, watering the pots on my deck and light pruning of the flowers, back inside when it gets too hot, sit in family room for a few hours and eat lunch during that time. Walking as much as possible keeping my left leg in front of me at all times. Then back upstairs to ice and elevate. Resting, dinner, shower, and TV watching with my husband, still laying in bed with ice pack. Then off to sleep.

I still have PT coming in and I forgot to mention my gentle exercises a couple times a day.

I have Posterior precautions for 3 more weeks and Anterior precautions for 9 more weeks.

I have some deep soreness and some pain, I believe is in the joint capsule but it is nothing compared to pain following first revision.
Click to expand...
I am still experiencing anxiety about getting in and out of shower, but my new OS has explained in depth how the dislocations were happening, and it has helped a lot. Changing surgeons was the very best decision that I could have made. I have my husband stay in our bedroom adjoining the bathroom where the shower is while I get in and out. I'm being careful to follow my OS advice to " keep that leg always in front of you"
Click to expand...
The PT I am receiving is very very gentle and really kids unnecessary. I really like her and look forward to the company. I am never sore afterwards no do any of the exercises stretch anything or hurt.
 
Good to see you are feeling more confident and seeing improvement.
Hope this week is happy and healing.:flwrysmile::SUNsmile:
 
This is all very good news, wonderful to hear.

I haven’t been on the forum much lately so I am sorry to hear now about your anxiety around the shower, perfectly understandable. It sounds like you have a good system going now. But just to say, showers feel nice but we don’t actually need them. The house where I convalesced after my first hip had a difficult shower, and during the first few weeks I had a basin wash with a cloth- I bought a supply of cheap face washers so I had a clean cloth each day - and only showered when my hair really needed washing. And didn’t use conditioner for months because it made the floor more slippery. I didn’t lose any friends due to my lack of grooming!

I hope your recovery continues and the remaining pain eases.
 
Your confidence will continue to grow with the showers, just as it is for all else. It's good news that you trust your surgeon and are happy with your PT. I wish you only the best as you continue to heal.
Thanks for the update, please stay in touch!
@Flowerfloosey69
 
Set back!

After bragging about my schedule of recovery, I have to eat crow.

Had a terrible day and night yesterday. Not sure what I did, but was miserable all day with new pain. Last evening I ended up taking a pain pill.. icing , elevating, and am just miserable. I have a bad headache, and my hiatal hernia reared it's ugly head. Almost hyper ventilated.. I have extreme pain in my thigh and groin. I'm so worried.

I was finally able to sit up in bed to alleviate the misery from my hiatal hernia. I took a sleeping pill finally and was able to sleep a few hours. Have been awake since 4 am and just took a muscle relaxer. We'll see if this helps.

My visiting nurse said I way over did it! Gotta.listen!!
 
Sorry you officially joined the ODIC (Over Did It Club). Please listen to that hip and rest only for the next few days. I know it's hard to be patient. But you must just give that traumatised hip time to heal. Hang in there!
 
Thank you Jaycey!
Unfortunately I was admitted to the hospital this afternoon for infection in my incision. Had such a shocking downturn last night. Luckily my GP jumped on it really quick and sent me to ER!
 
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