Avascular Necrosis….that’s a scary diagnosis

It’s official, I have Avascular Necrosis (or Osteonecrosis) in my left hip.  What is this?  Let’s look at the word Osteonecrosis, Osteo – bone  necrosis – death.  You have to remember that your bones are living things.  They have a blood supply.  When this blood supply is lost, or disrupted, the bone begins to die.  That is what is going one with my hip.  Particularly, the head of the femur.

click on photo to find out more about osteonecrosis

click on photo to find out more about osteonecrosis

I’ll tell you more about this condition after I see the doctor on Monday.

Right now….I can tell you I have it.

I had my CT scan on the 13th.  I’ve been dealing with a lot of waiting with this whole thing and I’ve been handling it well, but I decided I’d check in with my doctor via email yesterday, just to see if he could look at my CT scan and let me know what he saw.  I was getting a bit anxious.  My pain has been intensifying, and my balance has been even worse (not just from my ears), I thought, “Hey, the worst he can do is say he can only tell me these kind of things in person.”

Within 2 hours the nurse called Stuart and told him that my doctor was out of the office, however, she got another doctor to look at my CT scan and yes I have Avascular Necrosis.  She also moved my appointment date up from March 24th, to March 2nd.

At this point I don’t know what stage I’m in, but I do know it hurts, a lot…..more than I care to admit.   There are treatments that they do try when you are in the earlier stages but, it is a very small chance that you won’t end up having to have a hip replacement.  The earlier treatments are kind of like a stop-gap.  They help for a while, but most of the time it comes back.  It sounds to me like end up doing a hip replacement most of the time.  The amount of pain I’m in tells me I may be a little bit further along than we thought, so I may not have to even worry about thinking about all of that.  My doctor didn’t sound like he was very keen on putting people though unnecessary surgeries, just to end up having a hip replacement anyway.  So, I’m looking at a hip replacement.  I know it will make me feel better, and I’m very relieved about that.  I look forward to discussing everything with my doctor on Monday and making a plan.

I won’t lie, I’m very nervous about all of this.

Oh heck, I’m TERRIFIED.

I’m afraid of having a hip replacement.  I’m afraid of Stuart having no help.  I’m afraid of getting this place ready for me to be able to get around in during recovery. I’m afraid that I will get this necrosis in other joints.  (since they think my Avascular Necrosis is because of corticosteroid use, it could show up in a different joint, normally the other hip.) I’m afraid of the pain after surgery, I don’t deal with pain medication well, it makes me itch.  I’m just scared, OK?

I’m trying very hard not to think about the future…succeeding very well aren’t I??  I’ll be seeing the doctor on MONDAY.  We will make a plan then.  I will have more answers at that time.  Me getting all worried and fretting is doing no one any good, especially ME.  So what am I going to do for the next few days until I see the doctor?

  1. I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
  2. I’m not going to talk about it….well not much.
  3. I’m going to meditate.
  4. I’m going to do relaxing things….maybe watch a movie, read some of the book I just got from the library on my Kindle…..ect.
  5. Spend some quality time with my husband, something we haven’t done enough of lately.
  6. try my best to enjoy myself….laugh!
  7. eat good and healthy food.  I made up a new recipe, I hope Stuart’s up to trying it out.
  8. Take care of ME!

If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!

No matter what, I know I can handle this.

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14 thoughts on “Avascular Necrosis….that’s a scary diagnosis

  1. Hi Wendy – a friend of mine had her 1st hip replacement at the age of 15, she is now 65 – she has had several replacement, they just wear out. The last one she had was Jan, 2014, in the hospital for one night then she went hope with no help from anyone. She lives in San Francisco and walks up and down all the hills. You can do it – you just need to be strong.
    Zia Dot

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    • Zia Dot,
      that is an inspiring story! I think I’m a pretty strong woman. I get overwhelmed sometimes, but I always come out swinging.
      I know this will be a challenge, with vertigo rearing it’s ugly head lately, the constant disequilibrium and me not being able to take pain medication like most people, this is going to be a challenge, but one I will face head on.

      With some help, I’ll get through it. I won’t be able to do it alone like your friend. I’m not able to live alone now, so that won’t be different. Makes me concerned about Stuart, but I’m always concerned about Stuart. That’s my job.

      love to you.

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  2. My dad had a hip replacement at 90. Had to find a doctor who was even willing to do it on someone that old–if he signed his life away–LOL! Stubborn Swede. He didn’t want to spend the rest of his life in a wheelchair and a scooter. He’s 94 now and still on his feet. He had a longer recovery than a younger person would have, but everyone I know of went to a rehab facility for a while and they don’t send you home until they know you can get around with a walker or a cane, at least, and know all your exercises to do, etc. You have to be on the mend enough, you know. Could be a day or a week or whatever. My dad was walking on his own without cane or walker within a month, I think it was, and he was 90. So far he hasn’t had to have the other one replaced, but if he is planning to walk for a longer period of time (long shopping trip, etc) he will bring a walker now. I remember him saying how once he healed up from the initial surgery how wonderful it was not to have that horrible pain. And so far his other hip has not been as painful as the first one was.

    You’d be crazy not to be nervous before surgery–everybody is. But you’ll be fine! Be so wonderful not to have that pain anymore. Hey–another reason not to take steroids, eh? Let us know what you find out. 🙂

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  3. Wendy, my dear friend, you surely have had the run of things… I don’t have to tell you that I have you in my thoughts and prayers. You know that. I do need to tell you that your plan is perfect! Take care of you and yours and the rest of the story will come when it is time. Keep in the moment as best as you can. And forgive yourself if you catch yourself thinking about this. Lord knows, I would. So, kudos to you for getting that sorted out in your sweet mind. I am glad you have Stuart and Kiki and Max to help you. How much more love could one need? Well. you have me. Just wish I were closer. xo

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  4. Take some time off — you’ve had so many health issues to deal with. I’m sure this one can wait until Monday. I know it’s hard to put things like that out of your mind, but if you can for the weekend, your dr. visit will be better for it. Use your mindfulness to it’s full capacity.
    The thought of that level of pain without pain meds is scary. I remember what my pain was like before Lyrica.
    Good luck with this. Posting about it is a good idea; you’re sharing your pain and fear. Some one might find your blog with a similar problem.
    Hang in there

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  5. Girl, I’m convinced you have an auto-immune disorder. My Meniere’s is auto-immune related so I take immune modulating medication and it has helped immensely. It’s very obvious that your body is attacking all your healthy cells, hence the necrosis in your bones. I know you have a lot to deal with, but please look into LDN. It’s been a miracle for me and several others with auto-immune diseases. Take care!

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    • Oh Nancy you are so sweet. I had a autoantibody blood test that said I do not have an auto immune disease..but it can be faulty. At my physical in April I will ask my new doctor about the possibility and everything. I can’t get the drug if a doctor won’t write it, and if they don’t think it’s auto immune related….well. After this gets all straightened out, I may take off and go to John Hopkins. Might get my gene markers done and see if it shows anything. It may show I have auto immune stuff that doesn’t show in my blood test yet.

      The necrosis on my bones is caused by steroid use, but as my doctor said, many people could have had the same amount of steroids and never gotten this. It can just be a predisposition.
      Soooo…….shrug

      I think my body hates me for sure. 🙂

      Do you have any other auto-immune stuff going on? How did they determine your Meniere’s was auto-immune related? What made them give you this drug?
      thank you so much for caring, and any answers you can give me.
      I’ll be sure to ask my doctor some of these things after all of this.

      best to you.
      wendy

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  6. So, what did the doctor say?

    If you go to John’s Hopkins, you want to make several appointments. One of them is the auto-immune department, the other would be a specialist in rare diseases. I agree with Nancy, you have got something going on and I have a feeling they are all connected somehow.

    I hope the schedule you for surgery quickly if you are going that route. You deserve some to be pain free or as pain free as possible.

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  7. Your story is a inspiration, but it is also scary. I’m 16 years old and just got diagnosed with a odc leasion and necrosis in my right foot. I’m scared as to what is going to happen and the pain seems to be unbearable. Then on top of it all I have strep throat. Hopefully all turns out well for the both of us

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    • Regina, your diagnosis sounds harsh. I don’t know how they treat AVN in the foot. I tried to read up on it but it appears to be pretty rare. Is it in the metatarsals? I looked up ODC lesion and that would seem to make it more complicated…but I don’t know. I couldn’t find much about this really. I know it’s very painful. I was told it is as painful as bone cancer…I do understand. The only time I felt relief was in the pool, having the gravity release was simply joy.
      I am happy to say my hip is doing great. I do need to keep up strengthening it more, my other illnesses keep me from exercising as much as I would like. I have more range of motion than the doctor thought I would. He says that siting in the Lotus position is not recommended, but I’ve always sat like that, it’s so comfortable. I’m just working at atrengthening the muscles in that area and put a pillow under my knee so it doesn’t go all the way down. I just can’t not do it, ya know? That was my biggest goal too, to be able to do that again, even if it was just once…ha.
      Keep me in mind for your inspiration if you would like.
      Immediately after surgery the pain from the AVN was gone.
      Yes the hip replacement pain was there, but really, it wasn’t as bad.

      Note….I have a reaction to pain medication. It was intense to say the least.

      Good luck
      I’d like to know how you are doing.
      w

      Like

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