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THR Hip Replacement in my future

ANP63

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Hello everyone,

I am so glad that I have found this forum, and am looking forward to reading more.

I am 56 today, and will be having my 4th surgery for Avascular Necrosis since 2017. I was diagnosed with AVN in my left shoulder in 2016 and had it replaced in March 2017. Diagnosed with it in my right shoulder in Sept 2017 and had in replaced in Jan 2018. Was diagnosed with AVN in my hips in 2018 and had a Bilateral Core Decompression in Jan 2019. This was a way more painful procedure than my TSR's, and I was very unprepared for that.

About a month or so ago, my left hip started giving me some issues. My surgeon had said that I could be in pain for 3 -6 months after the Core Decompression. Went back to my surgeon on Tuesday and the x-rays showed that my left hip has started to collapse. She told me that they can give me a shot to help with the pain so that I can put off the surgery a little bit. I have been having to use my cane again for the last 2 weeks because the pain is so bad and it feels like it is just going to give out on me.

I have asthma/COPD, and over the last 8 years I have had to take a lot of prednisone to treat my flare ups, and they believe that is what caused my AVN. My doctors have been shocked that so many of my joints have been affected because they say it is very rare to have that happen. My OS said the other day that I will never be done with surgeries because of the AVN. Needless to say that blew me away. I was so hoping that I was done having surgeries.

We have a seasonal site that we go camping at every weekend, but I really haven't felt like doing that either. We have a cruise scheduled Dec 8th - 13th, and tentatively have my surgery scheduled for Dec 16th, but that worries me also. I really need this getaway, but I'm worried about how much pain I am going to be in and whether I will be able to enjoy it.

Looking forward to any advice than y'all can give.
 

Jamie

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Welcome to BoneSmart! I'm truly glad you found our community and decided to join. It does sound like it's time to get that hip replaced. We'll be here to help you with any questions or concerns you may have.

Avascular Necrosis can be misunderstood by a lot of people, including many in the medical field. The more you educate yourself on AVN and what steps you can take to reduce the risk of getting it in other areas of your body, the better.

Although AVN is a relatively rare disease, there are certain factors that can increase the risk of getting it. Your doctor has correctly identified one of those causes - the frequent or long-term use of Prednisone. But here are some other possibilities:

Risk factors for developing avascular necrosis include:

  • Trauma. Injuries, such as hip dislocation or fracture, can damage nearby blood vessels and reduce blood flow to bones.
  • Steroid use. Use of high-dose corticosteroids, such as prednisone, is a common cause of avascular necrosis. The reason is unknown, but one hypothesis is that corticosteroids can increase lipid levels in your blood, reducing blood flow.


If your hip
  • Excessive alcohol use. Consuming several alcoholic drinks a day for several years also can cause fatty deposits to form in your blood vessels.
  • Bisphosphonate use. Long-term use of medications to increase bone density might contribute to developing osteonecrosis of the jaw. This rare complication has occurred in some people treated with high doses of these medications for cancers, such as multiple myeloma and metastatic breast cancer.
  • Certain medical treatments. Radiation therapy for cancer can weaken bone. Organ transplantation, especially kidney transplant, also is associated with avascular necrosis.
  • Medical conditions. Some medical conditions can also contribute to the likelihood of AVN such as:
    • Pancreatitis
    • Diabetes
    • Gaucher's disease
    • HIV/AIDS
    • Systemic lupus erythematosus
    • Sickle cell anemia
Here are some things that you can do to reduce your risk for further problems with Avascular Necrosis and improve your overall health:

  • Limit alcohol. Heavy drinking is one of the top risk factors for developing avascular necrosis.
  • Keep cholesterol levels low. Tiny bits of fat are the most common substance blocking blood supply to bones.
  • Monitor steroid use. Make sure your doctor knows about your past or present use of high-dose steroids. Steroid-related bone damage appears to worsen with repeated courses of high-dose steroids.
  • Don't smoke. Smoking increases the risk.
If you haven't explored a support group specifically for AVN, I suggest you take a look at Deborah Andio's Facebook support group for osteonecrosis called Avascular Necrosis/Osteonecrosis Support Int’l. It's a closed group, but you can tell her that you learned of her group from me. While BoneSmart can help you with your joint replacement challenges, it might be helpful to also talk with people who can relate to what you're going through with AVN.

There are some things you can do to make a trip like you're planning in December more comfortable. Be sure and do lots of pre-planning. You'll want to take advantage of every opportunity to use assistance to get around. Arrange for wheelchair assist at the airports. Consider taking a portable wheelchair on the cruise as there can be a lot of walking from one place to another on a big ship. See what accommodations the cruise line can make for you on shore excursions and while onboard ship. If you haven't purchased trip insurance, I suggest you get a policy that will allow you to get a full refund should you need to cancel for any reason. Depending on how bad your hip is, there is a possibility you may not be in a position to go on the cruise and you certainly wouldn't want to lose that money.

If your hip is starting to collapse, I'm wondering why your surgeon didn't schedule your hip replacement sooner than December. I can tell you, you definitely don't want a collapsed hip. I am sorry you're in this position. But the sooner you can get your hip replaced, the better you're going to feel.
 
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ANP63

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Thank you Jamie for the information. I have requested to be able to join Debbie's page. My cruise consultant gave me the name of a company that will deliver a scooter to my cabin and pick it up at the end of the cruise. We have trip insurance but I really hope we don't have to use it. I really need this break... I could probably schedule it for some time in November, but I don't think I would be up for the cruise in time. I guess I am being selfish to wanting to go on the cruise, but my hubby has been under a lot of stress because of health issues with his parents, that I want him to have this too.
 

Jamie

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I hope it works for you. I'm glad you have trip insurance just in case, though. And the scooter on board will be perfect for you.
 

GrannyC

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I’m sorry you have to deal with all these surgeries but the hip surgery will certainly take care of that terrible pain. I think you might consider moving the cruise to Nov as you mentioned that would be an option. It seems like you might be in less pain going sooner but that is something only you can decide. No matter when you decide to go, I think you need to pull up all your strength and do you very best to think POSITIVE! You need to tell yourself you can do this and talk yourself right into looking forward to the trip. With the scooter and a cane available, you should really limit your pain. If you worry you will hurt, you will definitely hurt. If you look at the trip with excitement and that positive outlook, you will limit your pain and have a wonderful time.

One more point, I’m not sure where the cruise is going but have you asked your OS office about taking the cruise? They are always asking if you’ve been out of the country so I’d recommend you run that question by them before you take the trip. Whatever you decide to do, I want to wish you all the best!!
 
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ANP63

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Thank you GrannyC. Knowing that I will not have the AVN pain after surgery is what keeps me going. I came through like a champ for both of my shoulders, and even did pretty good on the bilateral core decompression, so I know that I will do great with the replacement. They have been told about the cruise when we were setting up tentative dates, but will go over it again once we get the MRI results. I may not have a choice but to do it sooner. We'll see. :)
 
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ANP63

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So I got the results of me MRI..... Along with the mild collapse, I have build up of fluid in my bone marrow, damage to the cartilage & tissue in the hip socket and joint inflammation. Should hear something from the OS on Tuesday. This was a very bad weekend as far as the pain goes. It's definitely getting to the point where I really do not enjoy doing anything. Hoping that surgery is scheduled sooner rather than later. I just want the pain to be over with...
 

Mojo333

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I'm sorry that hip pain has gotten so bad.
I truly sympathize...as it surely takes over our lives.
Try to distract yourself all you can and I will be praying they get you a date soon.
 

Jaycey

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@ANP63 So sorry you are suffering with AVN. I too had AVN in both hips and one did collapse. NOT FUN! Can you push your surgeon for THR versus injections? The injections often do not work and you will not be able to have surgery for several months after having them. Getting that hip replaced is really the only "cure" for this pain.

Please keep us updated.
 

Layla

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I'm very sorry you're in so much pain. I hope when you hear from the OS on Tuesday you get the go ahead to schedule your surgery. The sooner the better so you can lose the pain and get your life back.
Sending a hug and wishing you comfort.
@ANP63
 
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ANP63

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I have a pre op appointment set up for 10/22 to discuss with the OS. The nurse has me penciled in for 12/16 to have the THR. Taking Tramadol and alternating with Tylenol in order to get the pain under control. So far it is working. WOOOOHOOOO!!!!

Thank you everyone!!
 
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ANP63

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Hi CricketHip,

Won't know for sure until after my appointment on the 22nd whether we will be able to do it on the 16th of December or not. It will be my left hip.

Left TSR in March 2017
Right TSR in April 2018
Bi-lateral Core Decompression on Hips January 2019

Thank you for the information!!!
 

CricketHip

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@ANP63 Thanks! I thought you already received that info earlier and deleted the post , I'll add it back so you can read it at your leasure.. I don't want you thinking that you have to speed read the info. :heehee:

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:
Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?

And if you want to picture what your life might be like with a replaced hip, take a look at the posts and threads from other BoneSmarties provided in this link:
Stories of amazing hip recoveries
 
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ANP63

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Looking forward to my appointment tomorrow with the OS. While the Tramadol/Tylenol routine worked for a little bit, it's sure not working as well anymore.

I have started to have pain at the top of my thigh in front. This is different that the pain in my groin and hip area. Something else I will need to talk to the OS about.
 
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ANP63

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So I got the surgery date set for the 16th of December. However I have to lose some weight first. I've done it before without starving myself, just have to get myself in the mindset that it will help me in the long run and help me heal faster and be safer during surgery. Also get to go on our cruise!! It's a sad day when a person says that they are excited about having surgery.. Because I am :yes!: because I know that I will be so much better & happier once it is done!!
 

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@ANP63 I decided to join Weight Watchers when they had a special offer, and because it’s very close to my house. I just wanted some new ideas, because I had lost weight on my own in the past. It was a Weight Watcher member who told me about Bonesmart. It turns out there are quite a few “hippies” online and at my meeting.
What helps motivate me, is knowing I can have a smaller incision, if all goes well, and hopefully a little easier recovery. Having some low calorie snacking vegetables sitting in the refrigerator helped me. Also having some boiled eggs in the fridge, to snack on, ( Who knew eggs could be a snack food?) helped to get me through the first few weeks.
I keep a chart In my bathroom to help me track my progress.
Sorry you are in so much pain.
 

leejaa

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I can relate to being excited about upcoming surgery. Mine is finally close Nov. 13 and I am ecstatic that soon I can get to recovery and regain my life. The limitations and constant pain are so wearing. Glad to see you have a date and a cruise to look forward to.

I started weight watchers not because my OS said I needed to and in fact was lighter than my previous hip already but because I wanted to for me. I am doing it on line only and it really helped me. I have lost almost 37# since mid May. It is possible even without being able to do any exercising or a lot of activities. Good luck whichever way you decide to lose.
 
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ANP63

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@leejaa & VSlowLife,

I had joined WW almost a year and a half ago because I wanted to lose weight for myself. Thought I had finally got to the place in my life where it was going to work. Well, I lost weight and never felt deprived or anything, and then fell off the wagon. I know I can do it, and I know that it will make it a lot easier on me and better for me, so back on WW I go. :)

Thank you for the encouragement!!
 

VSlowLife

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@ANP63 one thing I learned in the vegan WW group was Nice Cream. So easy. Pop two bananas in the blender with 2Tablespoons of peanut butter or almond butter. Add a dash of vanilla extract. I use a few 1/40th of a teaspoon of organic stevia for a tiny bit of sweetness. Add a splash of Almond milk or low fat milk. Blend. Pour into two glass custard cups and freeze. For variety, I will pop in a few strawberries, or blackberries, or blueberries.
it has really helped me avoid sweets and lose weight for hip surgery. Oh and the medium bananas, not the long ones. Sometimes I make enough for seven days.
I bought a digital scale, so I can see a .2 lb weight loss, which helps encourage me along the way. I got that from Target.
Good luck!!
 

Mojo333

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Hi @ANP63
Belated :merry-xmas-smiley-emoticon:and:happy-new-years-toast-smiley-emoticon:

Wondering if you were able to meet your goal so that your surgery was done on Dec. 16 or if you have delayed it.
Hope you are hanging in there....:yes:
 

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