Living without a hip

Posted by mary121658 @mary121658, Dec 5, 2018

Does anyone know how it is to be without a hip. I've had 4 surgeries in the past 6 months all due to infections in the artificial hip. The hip was removed and replaced with a spacer and that got infected within weeks. They removed the spacer and put antibiotic seeds in. I've been without a hip since June. I can't walk, have sex or even stand for a minute. I'm on antibiotics permanently which I believe after so much they no longer work. I don't even know how I got the first infection cuz I had the hip replacement for over a year when I woke up screaming one day. Any advice would be appreciated. Oh I don't have much luck with this kind of surgery cuz the other hip was done 3 years before the 2nd one and that leg is useless. The surgeon cut nerves and I woke up screaming and a neurologist did nerve conduction studies and found I had RSD. Very excruciating painful disease due to the mistakes made during surgery. I have drop foot and rotation up above the knee so I can't even count on that leg for help in walking. If anyone has experience with this I'd appreciate hearing from you

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

@babypanda

Hi John,
Thank you for your helpful reply. I feel very alone and afraid right now and am so grateful to have a place to ask questions. I have not talked to my surgeon about the origin of this infection, but I am starting to think it may be dental in origin. Since I’ve had a feeling I’d need a revision I went to my dentist two weeks ago. She found that a large filling had fallen out, but it had not progressed to needing a root canal. I admit I was overdue for a dental visit (it had been one year), but I had an ACDF neck fusion in the summer that came as as a complete shock to me. Whole different topic, but two discs had calcified and almost vanished. I’m going to get dental insurance so I can get my teeth cleaned 3 or 4 times a year after all of this. That actually raises a whole different question…how many times a year should I go to the dentist and get cleanings with hip implants? During the pandemic with no visits I developed an infection and had a root canal as soon as my dentist could see me.
Thanks!!!! Catherine

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Hi Catherine, That is a good question so I'm hoping someone will jump in with some recommendations on dental visits when you have hip implants or other joint replacements. I've had a knee replacement but I avoid the dentist like the plague but then I already have a partial.
I'll bet my friend @loribmt might have some thoughts.

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@babypanda

Hi John,
Thank you for your helpful reply. I feel very alone and afraid right now and am so grateful to have a place to ask questions. I have not talked to my surgeon about the origin of this infection, but I am starting to think it may be dental in origin. Since I’ve had a feeling I’d need a revision I went to my dentist two weeks ago. She found that a large filling had fallen out, but it had not progressed to needing a root canal. I admit I was overdue for a dental visit (it had been one year), but I had an ACDF neck fusion in the summer that came as as a complete shock to me. Whole different topic, but two discs had calcified and almost vanished. I’m going to get dental insurance so I can get my teeth cleaned 3 or 4 times a year after all of this. That actually raises a whole different question…how many times a year should I go to the dentist and get cleanings with hip implants? During the pandemic with no visits I developed an infection and had a root canal as soon as my dentist could see me.
Thanks!!!! Catherine

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Hi Catherine, my buddy, @johnbishop brought me into your conversation about dental visits and your question of the possiblity of a the infection in your hip being dentally related.
Short answer. Yes.
Infections can happen at the site of a joint replacment from a dental infection, or from having teeth cleaned. Anytime we have a joint replacment it’s recommended to have a prophylactic dose of antibiotics to preempt any bacteria that might enter the blood stream during dental treatment.
Also, having an infected tooth requiring a root canal, can go systemic, often seeking the area of a surgical implant.
Here’s a good discussion on our forum with other members whom have had joint replacements and their comments on prophylactic antibiotics before dental treatment.
https://connect.mayoclinic.org/discussion/dental-antibiotics-after-tkr/

Reading through your previous posts I see you’re going to be having IV antibiotics for several weeks to get control of the infection. From my experience I think you’ll find this is kinder to the tummy than oral antibiotics and should be highly affective in wiping out the infection. Don’t fear the antibiotics! I was on 2 concurrently for almost 3 years. They did the job and I had no side effects. Just make sure you have a good live culture yogurt daily. Maybe mix in a little teaspoon of ground flax. That seems to work well to keep the guts happy on antibiotics.

As for dental cleanings it may not be necessary to have 3 or 4 cleanings per year if your oral hygiene is good and you aren’t having any bone loss or gum infections. Twice per year is the general recommendation. If you have a great deal of calculus (tartar) built up between appointments then that may require more frequent visits. Daily use of dental floss and brushing is key to keeping that under control. Another good tool is a electric toothbrush. Oral B has a round brush that spins and does a great job of cleaning at the gumline and just below the surface to keep the calculus from buiding up.

But with each of those dental appointments, you will need to take a dose of penicillin (just for that day prior to the appointment…not a full course) or whatever med your dentist prescribes for you.

As you found out, Catherine, you’re not alone here. You have a huge new family. ☺️. I’m that old pesky auntie that sticks her nose in everyone’s business.
When do you begin your antibiotic treatments?

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@cmarsh

I am 70 years old and lost my left hip joint in Feb 2022 due to osteomyelitis. Surgeons also had to remove my Vastus Lateralis Muscle (Part of Quadricep) and my Illiotibial Band due to the infection. I use a walker and sometimes crutches for mobility and hoping to walk with 1 cane someday or nothing at all. I realize I am just 1 year post op, but very interested in how others are doing with a similar situation. I am on life long antibiotics for infection and advised never to try for another implant. Risk is too great as they almost had to amputate my leg last year. I live in Michigan....Cindy

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Hi Lori,
I am so happy to have a place to ask questions! I had no idea I’d have helpful responses so quickly. I’ll definitely get the good yogurt and flax seed. Do probiotics help, too?

My dentist told me I didn’t need antibiotics before teeth cleaning and work after 5 years of having the hips put in so I assumed he was correct. I will ask for antibiotics before every visit for the rest of my life now! I floss a lot because I’ve had enough cavities for a family of 4 at this point.

I have the 1st stage of the revision on Wednesday so I’m guessing antibiotics start then. I was pretty shocked because my new surgeon actually called me and explained the basics of the surgery. He was alarmed that the hip aspiration resulted in a big staph culture after only 5 days. He said we didn’t have time to wait. I’m just relieved to find a definitive answer after being in pain for over a year. I feel like I’ve been living from one doctor appointment to another for months on end.

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@babypanda

Hi Lori,
I am so happy to have a place to ask questions! I had no idea I’d have helpful responses so quickly. I’ll definitely get the good yogurt and flax seed. Do probiotics help, too?

My dentist told me I didn’t need antibiotics before teeth cleaning and work after 5 years of having the hips put in so I assumed he was correct. I will ask for antibiotics before every visit for the rest of my life now! I floss a lot because I’ve had enough cavities for a family of 4 at this point.

I have the 1st stage of the revision on Wednesday so I’m guessing antibiotics start then. I was pretty shocked because my new surgeon actually called me and explained the basics of the surgery. He was alarmed that the hip aspiration resulted in a big staph culture after only 5 days. He said we didn’t have time to wait. I’m just relieved to find a definitive answer after being in pain for over a year. I feel like I’ve been living from one doctor appointment to another for months on end.

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Hi Catherine, If you’re eating a good quality yogurt with live culture you shouldn’t need anymore probiotics than that. Even Activia is good beneficial, it has the right cultures to keep your system healthy…though it might have more sugar. But it’s the probiotic you want. With having IV antibiotics you won’t have to time when you eat the yogurt so that’s nice too.

Too much probiotics can actually be negative so you want a healthy balance. There came a point where I could barely gag down another spoonful of yogurt so when I had those days there was a probiotic gummy I took. I can’t find the name of it but it is one that isn’t released until it gets to your intestines so that the stomach acid doesn’t counter act the ingredients. You could ask at a health food store.

It sounds like you have a great surgeon in your corner this time! Good luck with everything. I don’t normally follow in the Joint replacement group so if you reply to me, make sure you include @loribmt in the comment so I get the notification. Keep me posted on your progress, ok? ☺️

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@babypanda

Hi Cindy. I’ve never posted on here, but today I found out my left hip has an staph infection in the replacement that was done 12 years ago. I’m now scheduled for part one of a two stage revision this Wednesday. Because my right hip has the same symptoms, the surgeon will be doing a hip aspiration on it, too. I’m wondering if anyone has had both hips infected at the same time. Could I end up with antibiotic spacers in both sockets until the infection is under control? I’m supposed to have an antibiotic IV 24/7 for several weeks. How could I get a staph infection so many years after having surgery?
Catherine

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Hi Catherine....I'm so sorry you have an infection, but glad they discovered it in time where they can put antibiotic spacer in and eventually get another new hip. That's exactly what my surgeon was planning to do to me until he opened me up and saw all the dead muscle and bone in there. He said he had never seen anything like it and was surprised I was walking and hiking my 5 miles a day up until 6 days prior to that! He said he could clean out and take out as much of the infection and dead tissue, bone as he could OR amputate my leg. Of course, I was under anesthesia, and he chose to give me a chance with my leg. I no longer have the hip joint and part of pelvis and glute is also gone, but I survived. I was on IV antibiotics for 8 weeks and now on oral antibiotics for at least 5 years through my Infectious Disease Doctor. My lab work is almost normal after 10 months. My infection was "strep" so they feel it was probably Dental related even though I always took the premed for Dental work. I'm a retired nurse and admit, I took old, expired Penicilin for several of my last dental cleanings...whether that made a difference, I don't know. I've been told even though I don't have any metal in me, I still need to take premed before Dental work and I will do so. My metal hip had been in me for 15 years. I don't have much pain now that a couple Tylenol a day takes care of it. Please keep us posted how your surgery goes and you will be in my prayers......Cindy

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@babypanda

Hi Cindy. I’ve never posted on here, but today I found out my left hip has an staph infection in the replacement that was done 12 years ago. I’m now scheduled for part one of a two stage revision this Wednesday. Because my right hip has the same symptoms, the surgeon will be doing a hip aspiration on it, too. I’m wondering if anyone has had both hips infected at the same time. Could I end up with antibiotic spacers in both sockets until the infection is under control? I’m supposed to have an antibiotic IV 24/7 for several weeks. How could I get a staph infection so many years after having surgery?
Catherine

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Catherine....I forgot to tell you that I eat Activa yogurt daily..but I've been a yogurt eater for 50 years! (I'm 70) I also take probiotic capsule once daily but have been doing that for over 20 years. I'm on Duricef 500mg twice daily and no GI issues with it at all.....sometimes vaginal yeast, but when that happens, I have Diflucan pill to take for it. When in the hospital after surgery, I did get a very sore mouth and tongue about day 5. I diagnosed that one as Oral Thrush from antibiotics and sure enough, after they prescribed the Nystatin Liquid swish and spit for me.....that cleared up. I continued on that for about 4 -5 weeks. I was in the hospital for 3 weeks after my surgery......Cindy

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@cmarsh

Hi Catherine....I'm so sorry you have an infection, but glad they discovered it in time where they can put antibiotic spacer in and eventually get another new hip. That's exactly what my surgeon was planning to do to me until he opened me up and saw all the dead muscle and bone in there. He said he had never seen anything like it and was surprised I was walking and hiking my 5 miles a day up until 6 days prior to that! He said he could clean out and take out as much of the infection and dead tissue, bone as he could OR amputate my leg. Of course, I was under anesthesia, and he chose to give me a chance with my leg. I no longer have the hip joint and part of pelvis and glute is also gone, but I survived. I was on IV antibiotics for 8 weeks and now on oral antibiotics for at least 5 years through my Infectious Disease Doctor. My lab work is almost normal after 10 months. My infection was "strep" so they feel it was probably Dental related even though I always took the premed for Dental work. I'm a retired nurse and admit, I took old, expired Penicilin for several of my last dental cleanings...whether that made a difference, I don't know. I've been told even though I don't have any metal in me, I still need to take premed before Dental work and I will do so. My metal hip had been in me for 15 years. I don't have much pain now that a couple Tylenol a day takes care of it. Please keep us posted how your surgery goes and you will be in my prayers......Cindy

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You’ve been through so much, Cindy! I’m terrified about what my surgeon will see when he opens me up, too. I love to go walking and it got to the point of dragging my left foot while using walking poles. The doctor who figured this out said I have a Trendlenberg gait because something has happened to my adductor muscles. My instant thought was of the muscle being destroyed. He sent me to my new surgeon who specializes in tough cases.

Are you able to get around with a walker? Did you have a lot of pain in your groin and butt before the surgery?

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@cmarsh

I am 70 years old and lost my left hip joint in Feb 2022 due to osteomyelitis. Surgeons also had to remove my Vastus Lateralis Muscle (Part of Quadricep) and my Illiotibial Band due to the infection. I use a walker and sometimes crutches for mobility and hoping to walk with 1 cane someday or nothing at all. I realize I am just 1 year post op, but very interested in how others are doing with a similar situation. I am on life long antibiotics for infection and advised never to try for another implant. Risk is too great as they almost had to amputate my leg last year. I live in Michigan....Cindy

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Hello @cmarsh and welcome to Mayo Clinic Connect. Sorry to learn you've lost your hip. I am glad you've joined to connect with others on their experience for support.

You will see I moved your post into an existing discussion which you can find here:
- Living without a hip: https://connect.mayoclinic.org/discussion/living-without-a-hip/

I am glad to see @ida2 @babypanda @johnbishop and @loribmt have all joined you already!

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@amandajro

Hello @cmarsh and welcome to Mayo Clinic Connect. Sorry to learn you've lost your hip. I am glad you've joined to connect with others on their experience for support.

You will see I moved your post into an existing discussion which you can find here:
- Living without a hip: https://connect.mayoclinic.org/discussion/living-without-a-hip/

I am glad to see @ida2 @babypanda @johnbishop and @loribmt have all joined you already!

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Thank you.

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@babypanda

You’ve been through so much, Cindy! I’m terrified about what my surgeon will see when he opens me up, too. I love to go walking and it got to the point of dragging my left foot while using walking poles. The doctor who figured this out said I have a Trendlenberg gait because something has happened to my adductor muscles. My instant thought was of the muscle being destroyed. He sent me to my new surgeon who specializes in tough cases.

Are you able to get around with a walker? Did you have a lot of pain in your groin and butt before the surgery?

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I didn't really have any pain until about 5 days beforehand. It took 2 trips to ER before they figured out what was going on and told me I needed to get to U of F Shands hospital ASAP. I happened to get a surgeon who studied at Mayo Clinic. I don't like pain meds, so I only took 1/2 Tramadol every 4-6 hours along with Tylenol and used lots of ice for pain. I started out in wheelchair, but able to.use walker before leaving hospital. Now I use rollator walker in the house mostly and crutches when I go out. Doesn't make me feel as old, haha!. I'm learning to use 1 crutch or cane and practice in the house every day. I ride upright bike 30 mins twice daily and started walking on treadmill a month ago. I did 1/2 mile today in 18 mins. It's hard work on treadmill and really gets my heart rate up, but I walked on treadmill daily for the past 35-40 years and I want to again! I also have about 45 mins of strengthening exercise I do daily too. Thank God I'm retired and can dedicate this much time. It's a lot of work, but it's worth it in my opinion! So whatever happens in surgery, you can get better and heal. Keep me posted. ...Cindy

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