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

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@lisalisa11

My mother has been living this nihgtmare for 6 months already. She went in for a hio replacement and everything went wrong. Had so many infections. Connected to two wound vacs. Currently doesnt have a hip bc of it becoming infected. Been home for almost 4 months still is not ambulatory, difficulty standing for longer than a minute. Working on transfers but difficult. She is in a very low place bc she feels ike her independence was taken away and will never be the same. She would love to speak to others in this position.
Please reach out

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Hello Lisa...I am new to this forum and I have been without a hip since Feb of 2022 due to severe infection. I am 70, but doing much better and using walker and crutches for mobility. I hope your Mom is improving and reach out to me if I can answer any questions. It's a hard journey back to independence, but I'm getting there slowly.

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I would love to communicate off site please let me know if that is ok as I have so many questions for you.
Lisa

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@cmarsh

Hello Lisa...I am new to this forum and I have been without a hip since Feb of 2022 due to severe infection. I am 70, but doing much better and using walker and crutches for mobility. I hope your Mom is improving and reach out to me if I can answer any questions. It's a hard journey back to independence, but I'm getting there slowly.

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I’m looking at having to have my spacer removed and nothing put back in. I have so many questions. I have rheumatoid disease from the top of my neck to my feet. My shoulders need to be replaced so walking with a walker is very difficult. I am 54 years old. Can you tell me approximately how long it took you to be able to be able to do just basic things for yourself.

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@coltura68

I’m looking at having to have my spacer removed and nothing put back in. I have so many questions. I have rheumatoid disease from the top of my neck to my feet. My shoulders need to be replaced so walking with a walker is very difficult. I am 54 years old. Can you tell me approximately how long it took you to be able to be able to do just basic things for yourself.

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Hi...I'm so sorry you are having to go through all this. I would say it was 6-8 weeks before I could get around pretty well with a standard walker and crutches to get up stairs. I could not use the 4 wheel rollator walker for about 4 months as it went too fast for me and I couldn't keep up and felt like I would fall forward. I can now use it and whiz around. I used wheelchair in the beginning. I have a real variety of aides I use now for mobility. My surgery was done on an ER basis due to infection while in FL About 10 weeks post op, we headed back to MIchigan with our 5th wheel. At that time I could hobble up the 4 steps with crutches and we just took our time going home and only driving 5-6 hours per day. About 6 weeks before my husband would let me take a shower by myself. Naturally I still use a shower chair in shower. My husband has glued additional soles from old shoes onto shoes I want to keep to add height as my leg is probably 2-3 inches shorter. That makes a big difference in trying to walk so you are more equal, less stress on other joints. Good luck and feel free to reach out if you have more questions. I can't always tell on this site when there is a new post for me. Cindy

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@lisalisa11

I would love to communicate off site please let me know if that is ok as I have so many questions for you.
Lisa

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Hi Lisa...I think I may have replied that is OK, because I honestly have a hard time with this site sometimes to check for messages. I tried to give you my email address, but it won't let me put it in message. If you are on Facebook, we can chat through Private Messenger. There is also a FB group I belong to called 'Hip Complications" .......Cindy

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@cmarsh

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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My surgery was postponed yesterday because of an ice storm here. I have to wait 6 more days to get the 1st stage of the revision done. I am much more concerned now because this gives the staph infection time to spread. The pain is horrendous and I’m worried about losing this leg or going septic. 🙁

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@babypanda

My surgery was postponed yesterday because of an ice storm here. I have to wait 6 more days to get the 1st stage of the revision done. I am much more concerned now because this gives the staph infection time to spread. The pain is horrendous and I’m worried about losing this leg or going septic. 🙁

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I’m so sorry your surgery was postponed! What an anxiety builder when you were all ready to get this over with. It might be a good idea to check in with that doctor’s office today and let them know of your concern for the staph infection and see if there is a possibility of getting the IV started beforehand. Just a thought…and certainly, if you develop an elevated temperature get in pronto! 🙂

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@cmarsh

Hi Lisa...I think I may have replied that is OK, because I honestly have a hard time with this site sometimes to check for messages. I tried to give you my email address, but it won't let me put it in message. If you are on Facebook, we can chat through Private Messenger. There is also a FB group I belong to called 'Hip Complications" .......Cindy

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Hi Cindy & @lisalisa11 - If you want to talk privately or share things like email or phone numbers, you may use a Private Message.
To send a Private Message do the following:
Click on the @[Name] of the person to bring up their Profile
Next to their profile picture, click "Send Private Message" with an envelope icon
Write your private message and write your message. Be sure to press "Send Message" when you finish.

To retrieve a Private Message, click on the Envelope at the top of the Connect Page (there will be a number near it if you have private message(s)

Sue

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@babypanda

My surgery was postponed yesterday because of an ice storm here. I have to wait 6 more days to get the 1st stage of the revision done. I am much more concerned now because this gives the staph infection time to spread. The pain is horrendous and I’m worried about losing this leg or going septic. 🙁

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So sorry to hear your surgery was postponed. I hope all goes well for you and you'll soon be on road to recovery!!.......Cindy

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I turn 80 in three months and failed to get hip replacement for the 4th time always for a simple reason and this time on the off chance that one of my 8o year old teeth might cause an infection and affect the new hip. In the meantime my hip moves up a little more causing some interesting things to happen. As a result I began doing research on alternatives and it is amazing to see the advances in Robotic Orthosis combined with advances in medical alternatives. My main concern is not to get any worse and the possibility of ending in surgery because of a fall. I will be contacting groups that are creating these wonderful attachments to discus ways to adapt skeletal units to not only relieve the need for replacement but to help individuals that have lost the hip regain mobility and a normal life of mobility. Would like very much to work on this with anyone interested and sharing what I find. Marty

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