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?
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!!)
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 
A new hip! Well, are you special! 😀 I have heard that they can make all the difference in the world! I also have to get ready for a new knee. Let’s see who is ready first. Winner, winner chicken dinner! hee hee I am soooo happy that you had a great doc visit!
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Wendy, this sounds VERY ENCOURAGING – and your thinking sounds right on track to me, for whatever that’s worth.
Your new hip doctor sounds like a jewel – that last one is so difficult NOT to judge and difficult TO forgive! I know they are under insurance company pressure to bill at a certain level – yada, yada, yada – but I simply cannot STAND to hear about supposed professionals who give out perfunctory advice without DOING THEIR JOBS! (I swear, the older I get, the less willing I am to pull my punches!)
Now about those nurses – why WOULDN’T they remember you? You are amazing! I don’t think you realize how your special mix of honesty, vulnerability and kindness comes across – it is so rare, and so memorable.
Here’s your new RULE (says she, autocratically) – if anybody does NOT treat you like that, take that as STRIKE ONE. Something’s wrong. And they only get two strikes in this game! (Ask your amazing hubbie – I’ll bet he’ll agree with me on this one!)
BOY do I know what it feels like to be stuck at home most of the time – like house arrest! I feel like the world’s biggest babbler when I DO get out in the world anymore, simply because it is so rare these days, and I am so grateful to have someone human to talk to. My puppy’s vocabulary is growing by leaps and bounds, because I talk to HIM constantly! (I’m half waiting for him to learn to talk BACK ::grin::)
Sometimes it feels as if others are simply being kind when I engage them in conversation, because I must come across as lonely as I AM these days – but a few comments have let me hold out hope that I have not become boring, and laughter is always a good sign that I can still be a half-decent conversationalist. I never doubted my “talent to amuse” before – but spending way too much time in solitary makes one lose track of a lot of things. I can certainly relate to your amazement at the behavior of the nurses – but STILL . . .
I’m sure you will keep us in the loop. I’m still holding white light and powerful thoughts that THIS IS YOUR YEAR!
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to transform a world!”
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Madelyn,
This does sound encouraging, and a bit scary. The thought that my bone is dying? Geez, how gory is that? And all because doctors gave me medication without responsibility. Am I getting jaded about the medical community or what? I think about all the medications I’m on and it scares me so.
About how the nurses treated me….well you guys get to hear and see a lot more of me than the little bits that a nurse does. And yes, as I told Stuart the other day, I feel like I have become an old lady…I dress weird, wear shoes only because they are good for my feet, and engage people in stories about things that I’m sure they could care less about. Hahaha. (really, my shoes are cool too. I refuse to have ugly shoes! LOL even though I have to have shoes that are special…which means I wear pretty much the same pair of shoes all the time now….see a story that you could care less about! hahaha) And my dressing weird is kind of cool….maybe. spit laughing
Yes, being a kind of “shut in” can cause you to be an odd duck. I think my pets are going to start talking too, if to do nothing else but to tell me to shut up. Or to tell me to turn the TV off of the cooking channels. I don’t watch a lot of TV, but it’s usually on. Helps my brain learn to hear. You know, with my Cochlear Implants. If I didn’t have the TV to listen to, I would never learn to hear with them. I’d only know one voice….Stuart’s. That would be strange.
And yes, it can be like house arrest. As I once said, it’s a cage…a nice cage, but still a cage. I really understand the phrase “a bird in a gilded cage” now. Doesn’t matter how nice it is if it is you can’t leave, it is still a cage. After a while though you start to get a little afraid to leave. Or I have. For a number of reasons.
as always, thank you for caring about me.
xoxo.
w
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Except for the stretch following my gang-mugging, I’m not sure I actually experience “fear” of leaving the house, but my experience amounts to the same thing. I seem to have lost the HABIT So now it seems like some kind of a BIG DEAL to leave the house.
That’s always been true to a degree – most ADDers take a few trips in and out of the door before they’re finally on their way – but now it seems like it won’t be worth the effort or something (even though, intellectually, I know it will be more than worth it and, in some instances is actually necessary — and it’s really NOT that big a deal!) Getting my puppy out on his walks will help rebuild it (I hope!), but that’s still not something I do without thinking – its a conscious decision I must pay attention to.
Same with taking a bath (after they broke my hand, when I had to be so careful and was actually afraid I’d slip and have to have surgery). I LOVE baths. For decades, baths have served as a sort-of poor mans’ hot tub for me. But I’m STILL – almost a year later – having to “make” myself take one (especially after the move – I’ve always found “strange” tubs a bit difficult to embrace, for some odd reason).
I used to simply start the tub and climb in before I went to bed — by habit. It was part of my drill that helped me get to sleep – just a HABIT. Oddly, it is proving to be a difficult habit to put back in place. There’s no autopilot to it anymore.
I wonder if that’s what happens with dementias – when the poor sufferers stop all attempts at self-care or grooming – they lose the habit-formation parts of their brains? (hmmm, maybe it’s time to revisit my Habit Series?)
We are SO alike, Wendy, in our proclivity to try to figure out the reasons behind behaviors – and to share our thinking. Cognitive science has always been compelling to me – but I don’t know how I’d track the information if I didn’t do my “one rat studies” and follow those of others. I have always found “the examined life” fascinating, in any case. I find the conversations of people who don’t self-examine (or simply accept what they’ve been told without running it through their own filters) a bit boring to me, to tell the truth. How can one NOT have an interest in one’s own inner workings?
I loved your reminder of how our brains learn to hear. You are so smart to leave your TV on at all times. Do the docs know to tell you to do that, or is that something you figured out for yourself? That would be a topic worth blogging about, IMHO – a first-person about learning to hear as an adult. I’d read it eagerly, in any case!
xx,
mgh
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PS. Self advocacy is NOT “jaded” – 50% of all doctors graduated at the bottom of their class, remember – and not ALL the brilliant ones have the best patient-care skills, focusing on the “specimen” before them, brains matching training with symptom.
It is wise – and totally necessary – to question the authority of anyone who will not have to live with the consequences!!! Sorry it took a bit of bone damage to get you more on board with that – but don’t you dare question yourself about it. You simply MUST.
By the way, current understanding seems to be that, once the dying bone is removed (and in the absence of infection), bone heals. It doesn’t always regenerate, however – thus the implants. You caught it early – thanks to your pain sensitivity (one silver lining I’m sure you’d be happy to lose most of the time lol) – but mostly because you kept insisting that something was wrong until somebody took the time to find out what it was!
xx,
mgh
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Hi! I’m sorry you deal with so much pain and troubles. Have you explored jaw problems? I am like you but not as bad:( and just discovered my jaw is out of place and compressed against my ear causing hearing loss, ringing, dizziness and for some others menieres attacks. Just wanted to mention it because I was unaware of this for over 5 years.
Best of luck!
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Jarafeinblatt…I don’t have troubles with my jaw. I have had special massages that include the TMJ, and I don’t have no problems at all. My dentist has checked it out too, my ear doc too. They all know there can be contributing factors there.
I would hate for someone to be diagnosed with Meniere’s when it is a jaw problem, there are other symptoms that shouldn’t fit with that. But many people are diagnosed with Meniere’s who don’t have it because doctors just give up on trying to figure out what is wrong with people.
thank you for your concern
I’m glad you found help.
w
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Your two doctors, and their staff, sound fantastic. It’s a shame more aren’t like them. I had an ENT tell me, after I had asked a question, that he had been doing his job for 25 years and he knew what he was talking about. Well, bleeping good for you, you old fart.
First and last appointment with him. We deserve to be treated with respect and listened to, without being interrupted a lot. Read recently that a doctor will interrupt the patient, on average, after 18 seconds and the patient may not get all the information said that the doctor needs to hear.
Wish bedside/office manner would be something that’s given serious consideration when they are in school.
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Sunshine,
It has been shown that doctors who don’t think they are the best perform higher than those with that narcissistic attitude. I’ll take the humble doctor any day.
My PT said she found most Orthopedist are narcissist. Great.
The office Orthopedist group I go to…well the whole hospital group…sends out a survey every time you go to see them, you get to comment on your visit. They also have these cards where you fill them out and get to say when someone gives you excellent service. It’s a big deal. It isn’t just glanced over there either. I know because Stuart works for that hospital system. So I try to remember names and put them in the surveys.
The one time I got that doctor who treated me so poorly…oh that was a survey I was happy to fill out.
Well I’m happy to fill out the good ones too. It makes me feel good to fill out those cards saying how great these people treat me.
I rarely run into people who don’t seem to genuinely enjoy their job!
They are trained. If you are having a bad day, leave it at the door. When you are in the hospital, you are there for the patient.
They are given compassion training. This hospital is serious about customer service. But it becomes more than that. You can feel that people really love what they do.
Everyone. Even the people cleaning the floors.
and it rubs off on the patients. I have had patients jump up and open doors for us when I was in a wheelchair.
It is amazing.
One of the big reasons Stuart loves his job. He says it’s a different culture there. They care about their employees and who they serve. One day his whole department took the day off and went and worked at Habitat for Humanity. Not just his immediate department, but his bosses boss was there too. He as telling me how they were joking and making up nick-names. It was so nice. And they care about me. How I’m doing. How he is doing taking care of me.
I’m rambling, but to say I’m impressed by this company is an understatement, so far. There has been only one doctor I felt was a dick. LOL.
Unfortunately, the Meniere’s doctor wasn’t in this hospital system. Now there is a narcissist!
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My Dad has had so many steroid shots due to his arthritis it’s unreal. He’s bones are shot. He has already had a hip replacement. I wish we had know the long term effects..
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