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
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?
I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
I’m not going to talk about it….well not much.
I’m going to meditate.
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.
Spend some quality time with my husband, something we haven’t done enough of lately.
try my best to enjoy myself….laugh!
eat good and healthy food. I made up a new recipe, I hope Stuart’s up to trying it out.
Take care of ME!
If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!
Last Wednesday I saw the spine doctor, and good news, the herniated disc is doing great. So, why am I in so much pain? My physical therapist and spine doctor think it is my hip. So do I.
(If you are ever in Charlotte, NC and need a recommendation for a spine doctor, give me a shout out.)
The spine doctor I see is a really good doctor. He has a great bed side manner. I never feel rushed when I’m in there, he makes sure to always look at me when he talks, he explains everything very well, and he is very thorough. He examined me and decided I needed to see the hip doctor again. I told him how I did not have any respect for the last hip doctor I saw, and why. I’m not sure if I mentioned it here, and if I did, it probably bears repeating. The last hip doctor breezed in, did not examine me, and told me that all my problems were from my back. I asked him why then did I have hip problems before I hurt my back? He simply ignored me, and said nothing showed on the CT scan, so good news, I had nothing wrong with my hip, good bye. The spine doctor decided I should see a different hip doctor. One he said he was sure would treat me with much more respect. thank you very much. I will not go to a doctor who does not respect me.
Today I had an appointment with the new hip doctor. First I had an x-ray of my back. After all the stuff going on with my back too, he wanted to get a view of it, and looked like no problems there. Yay. Then the doctor’s assistant came in and got a good history and did a good exam. He told me what he suspected and that he wanted to go over everything with the doctor and he would come in soon. I then had to have another hip x-ray to compare to the one I had in September. They suspect I may have necrosis of the hip bone, caused by steroid use. I have been given steroids a lot over the years of my life. Doctors seem to hand them out like candy, they don’t think about the long term effects of what they can do to you. Not once when I have been prescribed steroids have I ever been asked how often I have been prescibed then in the past. Well, they can kill your bones. The bones that have blood in them, it can kill the blood tissue, then the bone will collapse on itself. Pretty gnarly huh?
Image taken from the Journal of the American Academy of Orthopaedic Surgeons linked from http://osteonecrosis.me
The x-ray that was taken in September had a very round ball socket, the one taken today looked a little bit flatter on the top. It could have been just the angle of the x-ray, or it could be the beginning of Stage II.
If you are interested you can read more about the different stages here: Osteonecrosis. Right now it looks like I’d be around Stage II, just starting to show outward signs….maybe.
My doctor wants me to send in my information about my cochlear implants to the MRI people there to make sure I can’t have an MRI under any circumstances. They said sometimes they can do something and they can do them. So I’m sending in my information. I’m very wary about this, and think I might just refuse it even if they say it’s alright. If they try this and (even if it doesn’t rip them out of my head) if it damages them, I don’t think it would be covered under my warranty, and I don’t want to have to have unnecessary surgery to replace them. So unless they’ve done this many, many times before, I just don’t think the risks are worth the benefits. I think he will understand that.
If I can’t/won’t get the MRI he said I will get another CT (Computerized tomography) scan. CT scans are cross sectional. Normally they are done at a certain width apart, I forgot how wide he said, he will order my new one to be done much closer together to try not to miss anything.
If you were reading my blog before when I went to the hip doctor and had the hip injection and it didn’t help at all (another reason the original hip doctor said there was nothing wrong with my hip) this doctor said the hip injections often don’t help with this issue.
I was very impressed with this doctor and his assistant. He was very behind in his schedule, but I could understand why, and I didn’t mind. He did not make me feel rushed when he was with me, he was very careful to make sure I understood everything. He was great. Also, before he came in to actually see me, I was seen by his assistant, and I had 2 sets of x-rays. I wasn’t just sitting there twiddling my thumbs. I was also impressed that when I got there he had already reviewed my chart and had questions waiting for me and orders for the back x-ray. He walked in and knew all about me before he started talking to me. I love it when a doctor does that!
This is a scary diagnosis. However, if this is what it is, it is a diagnosis! It can also be fixed pretty easily…I’ll have a hip replacement. There are a lot of things that a lot of doctors do to work on this that don’t replace the hip, but there’s a lot of risk and most treatments don’t work very well. shhh, don’t tell anyone I said that. I don’t want to worry people who are having those treatments done. Just my opinion from what I have read…today…and from talking to my doctor. Looks like most people have to have their hip replaced anyway, after many more years in pain. I’m thinking I’d rather just get my hip replaced now. I know I’m a bit young to have it done, but really not all that young, and with the new technology I hope the new hip will last as long as I do. That is…if I have to have it done. I can’t predict the future. Just preparing my mind for it in case that is a possibility. Heck, my father has had both hips replaced, and I think one he has had done twice, or they are talking about redoing one of them? He’s hard to keep up with. All his artificial joints….shoulders, knees….ect….He’s bionic! He has all the body parts, I have the ears. Now if I get a new hip, I’ll be working on body parts too! hahaha
I will be going back to PT, working out in the pool. The doctor wants me as strong as I can be in case I have to have any kind of surgery. Also he doesn’t want that leg to get too weak, and I can work it out in the pool because it is non-weight bearing. Maybe I will hurry up and take this weight I gained from the steroids off and continue to lose more weight! According to the scales at the doctor’s office I’ve lost about 8 of he steroid pounds. (I gained almost 16 – that was depressing! I’ve worked hard to take this weight off…and I want to keep taking it off! Go weight….get off my body! Not that my body isn’t fantastic just like it is, but I want to make it easier on my hip…less weight to carry around….less pain! I do not think beauty is determined by size!!)
drawing by w. holcombe copywrite – 2015 quote – unknown
Now for some awfully sweet news.
When I walked in this office I was met by 2 of the nurses there that just grabbed me and hugged me. They we so happy to see me and to see me in less pain than I was in the last time I was there. I also had a small vertigo attack last time I was there. I’ve only been there 3 times, and I haven’t been there since October, but these girls remembered me and were so thrilled to see me. I was amazed. I told them I couldn’t believe they remembered me like that. They said, they don’t remember everyone like that, nor do they treat everyone like that…only the nice people. They kept saying how wonderful my spirit is. How nice I was even though I was in so much pain. I just cried. My nurse couldn’t believe I was crying. Just think, I am home alone most of the time, and on the rare occasion when I go out it is usually to the doctor’s office, I’m amazed I could touch a person’s life like that, in the little amount of time I see people. We never know just how we may touch another person’s life. So watch what you say, and always try to be the best person you can be. On a day when you feel scared and a bit down, you just might run into a couple of people who grab you and hug you and tell you how special you are because you are who you are, and you just make them feel special because of that. It was an amazing feeling!
Picnic with Ants 