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Revision THR Nanamac's story - Part 2

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Re: This is my story

Just for the record, I don't think this is anything to do with allergies or such. I have said and will continue to say, that the stem is loose. But then, I am only a nurse! :wink1:
 
Re: This is my story

Josephine,

Can you explain how they would miss the stem being loose on x-rays..Not like how in the way they must be stupid but like why doesn't it always show up on x-rays? I'm curious because when my stem was loose it wasn't seen on x-rays, but the bone scan picked it up.
 
Re: This is my story

Good question SL. I'll tag Jo so she will see this. @Josephine:
 
Re: This is my story

I know you keep sayng that Jo, and I certainly respect you opinion, but my feelings are the same as SL. How can all these tests and doctors keep missing it?

Helen, the 2 scans that I had this year were before my fall. But, all of this inflammation has been since my bite/infection. No one even knows but assumes that they are connected. I may have had an infection totally unrelated to the bite.

That is why I am seeing the Infectious Disease doc next week. The inflammation has lessened a lot since I started the prednisone. The thigh/femur pain has not. People are often treated with a small consistent dose of Prednisone for various ailments. This summer, I was given 2 massive doses, which is why I felt so good an then came crashing down.

This is just a few months trial to see if it can get rid of the inflammation which trully had become unbearable. ESR levels are supposed to be between 0-20 and mine has been as high as 55.

I know a lot gets lost in translation when we keep writing these events, but in my gut I feel I need to see the original OS. I do have a method to my madness for this. In fact, it should have been done months ago.

Jo, you may be right and at the very least I feel that the cup or stem is positioned wrong as to how my upper leg rolls in when sitting and the lower leg flings out to the right. There is NO WAY that I can straighten this and he kept saying I needed more strenghtening.

I have a question for @Josephine: . Why do they never x-ray you from behind after a THR? I would think that should be done, especially with a fall.

Also Jo and SL...I have already had 2 bone scans this year and the only "hot spots" that showed up was the arthritis in my wrists. it never showed any loosening of the stem though for me...

Helen, that was just a guess by the Rheumatologist about the high Ferritin levels. It could be from anything. It also can be inherrited and I was adopted and have no medical history except for Hypertension and Diabedes.

Another thing that has not gone away since summer is the snapping/popping in my feet,ankles and knees. Like how you "crack" your knuckles. This has all been since the infection.

In any event, I've got multiple things going on here, not just a bum leg :DOH:...
 
Re: This is my story

I do tend to agree with Josephine that the stem may very well be loose, but then you have to ask why, or what has caused it. A reaction to the implant could very well cause it to become loose, a fall could have caused it to become loose, as well as the shell or just the shell to become loose enough to cause stress on the stem. And an x-ray isn't always going to show this, which I don't understand why, but I know they don't always show a loose stem or shell. I'll certainly say that if anything at all is even slightly loose that it's going to cause stress on every part of the implant which does cause a great amount of pain, and stress on your bone's and surrounding soft tissue as well.

I do however feel you may have mulitiple things going on, and the problems with the hip aren't related to the other symptoms unless you are having a reaction to the implant.

When is your appointment Janet with your OS?
 
Re: This is my story

special lady said:
Josephine, can you explain how they would miss the stem being loose on x-rays..Not like how in the way they must be stupid but like why doesn't it always show up on x-rays? I'm curious because when my stem was loose it wasn't seen on x-rays, but the bone scan picked it up.
Click to expand...
Well, no I can't explain that, sorry.
nanamac said:
I know you keep saying that Jo, and I certainly respect you opinion, but my feelings are the same as SL. How can all these tests and doctors keep missing it?
Click to expand...
I just know I have been in with cases where the surgeon has been extremely surprised to find the implants are so loose he can literally just lift them out with his fingers. Or they can be wiggled about but still need some effort to remove them.
nanamac said:
I have a question for Josephine. Why do they never x-ray you from behind after a THR? I would think that should be done, especially with a fall.
Click to expand...
Actually, from front or from behind, the xray shows what it shows. Doesn't make any difference. The only reason they are always done from the front is that then the doctor will know which sides are left and right!
special lady said:
I do tend to agree with Josephine that the stem may very well be loose, but then you have to ask why, or what has caused it. A reaction to the implant could very well cause it to become loose, a fall could have caused it to become loose, as well as the shell or just the shell to become loose enough to cause stress on the stem. And an x-ray isn't always going to show this, which I don't understand why, but I know they don't always show a loose stem or shell. I'll certainly say that if anything at all is even slightly loose that it's going to cause stress on every part of the implant which does cause a great amount of pain, and stress on your bone's and surrounding soft tissue as well.
Click to expand...
Generally we know why an implant becomes loose and that's because the bone has died back from the implant (or the cement in those cases), more correctly known as osteolysis. The question is why did osteolysis occur and there are a whole variety of reasons there including:
- poor bone stock including ability to regenerate which might include conditions like osteoporosis
- infection
- micro-movements either from the start or commencing at a later time
- external stress on the implant such as undertaking extreme sports which can cause the implant/cement-bone interface to fail
- medications like steroids
- over exposure to xrays or MRI scans in the first few weeks after surgery if an uncemented prosthesis

So you see, it's quite a complicated scenario all round. There are no clear cut answers, just a lot of theories which are invariably very difficult to prove or disprove, especially on a case by case basis.
 
Re: This is my story

Well, in any event Jo, I am now convinced that I need a revision. I fought the good fight :wink1: for too long. Nobody has been able to find a resolution or an explanation for all the pain. I just can't take it anymore. Pain is a great motivator.

I see the original OS on December 5th and as I said, this is going to be resolved then. As I said, I have a plan in place. Nobody should have to suffer like this. It has effected my whole life.
 
Re: This is my story

I would like to address the question regarding iron overload after having multiple blood transfusions. Iron overload IS NOT easily corrected. There are only two medications available in the US (with another on the way) that are used to treat iron overload. One is a daily SubQ injection and the other is a pill. Both of these must be taken for a LONG time to correct iron overload. The pill is Exjade and it's as tightly controlled as morphine. There are very few mail order pharmacies that can dispense it and not only that but it's expensive. Also, it would do very little good to repeat a bone scan right now because bones grow and repair themselves very slowly and to repeat it now would be a waste of time and money. The best way to see if a joint is loose is either by plain films or an MRI not a bone scan. Oldbones
 
Re: This is my story

Actually, it might be the best way to maybe see loosening but they are not infallible. Sometimes it just doesn't show up in anything.
 
Re: This is my story

I kindly, respectfully disagree Oldbones....but your entitled to your opinon :)
 
Re: This is my story

Oldbones... I'm on my cell because I had to go out of town for work until Monday....so I'll explain what I mean when I'm out of work mode when I get back home :)
 
Re: This is my story

Transfusion induced iron overload is known to the medical profession as haemochromatosis or haemosiderosis. It is caused by multiple blood transfusion, usually in the order of about 10 in a life time. It can happen because small amount of iron in the red blood cells builds up in the body but the body doesn't have a means of excreting it. It can cause problems to the liver.

Studies show that those affected already had other conditions such as myelodysplastic syndrome (MDS), thalassemia, bone marrow failues disease, leukaemia, sickle cell anaemia, aplastic anemia, hemolytic anemia, Blackfan-Diamond syndrome and other anemias requiring remedial transfusions.

As far as I can discern, this is not a significant issue for otherwise healthy individuals.
 
Re: This is my story

So sorry you are still in such pain. I am praying for answers for you. The OS should do a bone scan you had a fracture previously and could have one that is missed by xray after your fall. Have they ever done an aspiration to make sure you do not have an infection ? From what I have read it does not always show up in the numbers. If you have responded to prednisone in the past clearly that points to inflammation I would get metal allergy tested. I know you have gotten alot of advice but I also know how frustrating it is to live for months in pain while waiting for appointments and such. Take care and know we are with you.:flowerysmile::grouphug2:
 
Re: This is my story

Honestly Jo, I don't think it has anything to do with the transfusions...there is something else going on with me and I know it. I just don't know what and neither do these doctors. Which is one reason why I am going back to Boston.

They are not just a joint replacement hospital and my Rheumatologist knows this as he also works at a major Boston hospital as well as my home town one. He could get me into his but NEBH is just as good and where all of this started.

I believe I need to go back to the source. I feel I am doing the right thing. I never said I was going to let the original OS have another whack at me. I have a plan.

Thanks for all the advice and caring. It trully means a lot :wubroses:
 
Re: This is my story

For sure, Janet - I was just explaining oldbones' mention of the condition in case anyone started getting worried.
It's only a problem for those in 'at risk' groups and since you are not one of those it doesn't apply to you.
 
Re: This is my story

I follow your thread Janet and keep hoping to see results. Hang in there---at least it seems the rheumatologist is helping co-ordinate. My sister had something going on years ago and was running ragged with different opinions and false diagnoses--then she found a doc who began to co-ordinate the efforts in a systematic way and that got her out of the maze and into the light--finally. So may it be for you--soon!~
 
Re: This is my story

Jo, you are so very correct regarding iron overload. This, unfortunately is the population of people that I see on a daily basis. MDS is probably the most common.
 
Re: This is my story

Hiya Janet,

so glad youve still got the fight in you to keep going, as you say hon, pain is a GREAT motivator.

Let us all know how you get on on the 5th Dec

you are in my thoughts sweet

Tanny x
 
Re: This is my story

Actually, yesterday was a turning point for my pain levels. I know it takes a while for Cymbalta to kick in, and the Prednisone has surely lessened the inflammation. I tried to stay off my feet a lot too, but you know how that goes.

Even sleeping last night I was able to sleep on my tummy, yet I honestly can feel the darn wires in my leg that way. It was the best sleep I have had in weeks.

Something, probably the Prednisone, is causing me to have unbelievable sweats/hot flashes. Although I did have a 99.5 temp when I was at the Rheumatologist last week. I'm not fevery sick though.

Wouldn't it be strange that since I fell on September 3rd, whatever I hurt is just finally healing? I know there is other stuff going on as well, but the difference is like night and day. It does take a while for soft tissue to heal and the x-rays didn't show anything as far as fractures.

I have been taking up to 8 or 9 Percocet5/325mg (so 3 or 4+ times a day, 2 at a time) along with Mobic 15mg. I stopped the Mobic last week and started taking 800mg of Ibupropen in between the Percocet and only needed to take it twice yesterday (10mg X2).

Fact of the matter is, I don't respond to Opiods. That is why I went thru such hell after my surgeries. Once they found the correct cocktail of Dilaudid and Methadone,along with a phew shots of Morphine early on, I was ok.

So honestly, even though I woudn't drive while on it, Percocet to me is like taking a Tylenol! Needless to say, I still shouldn't be on it 20 months later :DOH:...
 
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