I cried today.

[livendive]

Totally sympathize and just want to let you know that it does get better. I lived with pain in both of my hips and in my neck for several years, but in 2014, just as I was finishing grad school, everything got MUCH worse, and I was having a lot of difficulty getting medical help spun up as quickly as my condition was deteriorating. I realize then what you are now, that "postponing till necessary" had turned into postponing too long, as I became a pill-popping, non-sleeping, walking ball of pain. On September 28, 2014, as my wife and I started our honeymoon that we'd postponed until I finished my thesis (married in 2012), I broke down crying and told her just how bad of shape I was in. I told her I couldn't go on like that indefinitely and had been entertaining thoughts of suicide. I told her I could handle anything for a year and promised I wouldn't act on those thoughts for that long, no matter how much it hurt. The honeymoon was wonderful despite constant pain (we rented a 40' boat and cruised the San Juan Islands for a week), help ramped up when we got home, and we slogged through a few more months of her having to help me dress, then things started to turn around.

In January '15 I got one hip done and eight weeks later the other hip and my neck. We celebrated on September 28, 2015 that the pain that had taken over my life just one year prior was completely gone. I don't know what else to say. Help is just in front of you and once you get through it, you'll look back at the dark days you're in right now with wonder at how life-changing the pain relief you are still looking forward to has been.

 

[JMACCA]

I stayed in my room the whole day so I would not have to walk much in front of people.

I don't know how you did it @jomarie58!! I couldn't imagine living with the pain of AVN! I do find myself sitting in the office all day and I am now trying to book meeting rooms on the same floor as me so I don't have to walk distances - especially when they are one flight up and you are 'expected' to take the stairs.

I don't know what else to say. Help is just in front of you and once you get through it, you'll look back at the dark days you're in right now with wonder at how life-changing the pain relief you are still looking forward to has been.

WOW! what an amazing story @livendive!! Heartbreaking and inspirational!

I have come back from my DR's (GP) visit today where he gave me the report of my x-ray - Bilateral OA. Mild degeneration! His words 'that's really good' I am SO disappointed - and I know I shouldn't be as that is not rational! Let me explain...

I was hoping that the x-ray would 'demonstrate' the pain that I am experiencing. The fact that I can't walk more than 150 steps without resting. That I cry in pain after coming home from work. I am woken up each morning with deep aching in my hips...I could go on...

He has put me on mobic and panadeine forte - he wanted to give me Oxy but I want to start with something lighter and see if that works. I am going back to see him in a week. I am now worried that the surgeon will turn me away and tell me to come back when I am worse - how much worse???? Feeling REALLY flat right now...

 

[Cynthia777]

@JMACCA
I'm so sorry you're dealing with such pain and the doctor making light of it. Have you had an MRI? The reason I ask is, when I started feeling pain in my groin, I had an X-Ray and was told my hips were just fine. Well, I knew something was wrong so I insisted on a MRI. The MRI showed that I had AVN in both hips and it didn't show up on a normal X-Ray. In my opinion, it doesn't make sense that you are experiencing such intense pain with just "mild degeneration". I could be wrong, but something smells fishy. Can you insist on a MRI?

 

[JMACCA]

@Cynthia777 thank you so much for your reply.

I am just not sure why / how I am experiencing all this pain and be considered 'mild'. I just know what I will do if the surgeon turns me away and tells me to come back when it is worse.

I actually have a good tolerance of pain. I have put up with consistent pain from my hips for the past 9 years - now it is getting unbearable.

I feel very lost right now.


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[JMACCA]

I haven't had an MRI yet - the cost is $300 - should I have one? My fear is I will pay all that cash and it be pointless...


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[Jaycey]

I am now worried that the surgeon will turn me away and tell me to come back when I am worse - how much worse???? Feeling REALLY flat right now...

Keep the conversation focused on quality of life. Your world has narrowed due to the pain. You need THR to get back to living.

I haven't had an MRI yet - the cost is $300 - should I have one? My fear is I will pay all that cash and it be pointless...

A good orthopaedic surgeon will not need an MRI. X-ray should tell them all they need to know.

 

[JMACCA]

Keep the conversation focused on quality of life.

Thank you @Jaycey I needed to hear that...

 

[Miss Muffet]

@livendive - what a marvellous story you tell, from utter dispair to sheer joy and relief.
So happy for you that you have your life back once again. These surgeons have a life changing gift

 

[dandy_candi]

I second @jacey. Explain your quality of life and that the pain is really debilitating.

And do know there are surgeons out there that will work on young people- just think of me- 29 and getting them done. If you don't like him/her (has anyone had a female OS? I have only seen males) or he is not willing to do it then research surgeons who work with young people. I know you won't have to worry about it though, it's all going to be great and you'll be booked in in no time!



Candice, 28 yo. Rheumatoid Arthritis. Australia. Sequential unilateral THR June 1st 2016 and July 13th 2016

 

[Cynthia777]

@Jaycey
My AVN didn't show up on a regular X-Ray, only on the MRI. Could this be a possibility here?

 

[Cynthia777]

@JMACCA
I would follow Jacey's post and stress your quality of life and hopefully you will be able to move forward. If you get turned down for surgery, I personally would move forward with the MRI. However, this is just my opinion based on my experience when my X-Ray did not show I had bilateral avascular necrosis of the femoral heads and did indeed need surgery. Hope this helps.

 

[jomarie58]

Following your page and hoping you are able to find some relief!


RTHR 1/15/2016. Posterior approach. Due to AVN. LTHR in my future.

 

[Jaycey]

My AVN didn't show up on a regular X-Ray, only on the MRI. Could this be a possibility here?

Yes, the same happened to me with my right hip. But there was what the technician called "a shadow" on the x-ray. I had 2 x-rays and a CT. Surgeon too one look at the x-ray and said I needed THR.

 

[Basbleu]

I totally understand your pain and about trying to keep up a "brave face" for others. My hip dysplasia is now bone on bone also, and so stiff and arthritic from bone hitting at the wrong angles for so long. Pain meds (tramadol) don't seem to help at all either; walking with a cane for the last 6 months and it's getting progressively worse. I've even been trying not to drink a lot at work so that I don't have to get up and walk to the bathroom! I really hope you can get your surgery scheduled soon!

 

[dandy_candi]

How are you @JMACCA


Candice, 28 yo. Rheumatoid Arthritis. Australia. Sequential unilateral THR June 1st 2016 and July 13th 2016

 

[JMACCA]

@dandy_candi you are too sweet - thank you for checking in on me. Things are pretty much the same - just receive the forms enabling me to have injections.

I will follow the steps that the surgeon has set out, but I am not sure what to do next. Eliminate the pain is awesome of the injections are successful - and I really hope they are, but essentially the range of movement that I have will continue to be the same - nothing will change in that respect. So, while I will not have the pain, the problem is still there. I am not sure of the options for FAI.

Anyhoo enough of my bangin' on - how are you??? We are getting closer to your date! The year is flying by!


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[dandy_candi]

I know, the year is going way too fast @JMACCA . Seems like everytime I look at the date it's a new month!

Yes my date is inching closer, 57 days! Soon I'll be at 40. When I get yo 30 I think I'll start getting nervous!

Turning 29 this Friday- another milestone, another year gone. The big 3-0 next year! With new hips, who knows what I'll be doing!!

I did decide that I don't think j will go back to my job when I get back from surgery. It's very detail oriented and I keep making mistakes, and have been here 12 months. I've given it a good go but I don't think it's the job for me. 2016 is going to be a big year!


Candice, 28 yo. Rheumatoid Arthritis. Australia. Sequential unilateral THR June 1st 2016 and July 13th 2016

 

[confused newb]

@JMACCA. I hope the injections work out well for you to relieve the pain. Have you or your surgeon explored arthroscopic surgical options to address the FAI? I'm not an expert by any stretch, however I did do a lot of research into FAI when I was trying to figure out what was causing my hip pain a few years ago.

 

[Squirrellymom]

Ouch @JMACCA - It's the ache at night that got me into the OS and I told him it was keeping me awake at night and nothing was helping the ache. When he looked at the X-rays, he said both. Both hips are bone on bone and one is wearing away bone. I told him that some days were almost normal. I felt maybe things were all healed and it had passed and then, wham!, I'd have a bad day or six again and nights spent tossing and alternating flopping each leg over a pillow or two and taking tylenol arthritis or benedryl to sleep. There were days I would accept an amputation if it had been offered and then a few days that I had NO pain. Those days were becoming fewer and the stabbing pain and the aching pain at night were more and I was dreading what each day/night might bring. That was all he wanted to hear. He said, "Well, You want to get your Life back and so we need to replace both of these hips ASAP" and, as far as he was concerned that was that. Done. So many things I had done for the previous 4-5 years had "helped" persuade me that maybe my hips would heal by themselves. That stretching exercises, hot tub exercises, short walks, new shoes, back brace, inversion table, strengthening muscles in legs, whatever, would stop it and I would not need any surgery. One doctor a few years ago said he didn't think I would be a candidate for surgery. Then a year later another doctor said, oh yes you will need hip replacement but you've got time. I just got worse and worse. I hated car rides, getting up from a chair after sitting for a while, going shopping for any length of time, climbing steps, some days a one mile walk made me cry after a few hours of rest because the deep bone ache just couldn't be reached to make it stop. It was when I started not being able to sleep because my legs and back ached so much that I knew I had to have something done. I hope you can get nice new joints and soon. Just remember to tell the doctors that it is getting hard to function on a day to day basis and you are sleep deprived and ... you want to get your life back. The pain is telling you. It's time. --julie

 

[Zelda]

I hated car rides, getting up from a chair after sitting for a while, going shopping for any length of time, climbing steps, some days a one mile walk made me cry after a few hours of rest because the deep bone ache just couldn't be reached to make it stop. It was when I started not being able to sleep because my legs and back ached so much that I knew I had to have something done.

This describes my experience so accurately. I really wish I had found BoneSmart a bit earlier because one of the worst things was feeling all this and not knowing why so many normal things hurt so badly. And it just creeps up on you and feels normal after a while. Waking up from the first surgery, I realised I hadn't had deep sleep in so long and how tired I was.