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THR Need a friend who has been on the other side of a late infection

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RestAssured

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Barbie, is it the teeth or the nerves around your mouth. We have a trigeminal nerve that when fired is so painful it hits the teeth, the face and sometimes the eye.
 
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BarbieJ

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The neurologist at mayo said that I do not have trigeminal neuralgia. The doctors at mayo thought I had atypical odontalgia or atypical neuralgia. But it is pressing up into my head and causing head pain and eye pain. It is unbearable.
My teeth feel abscesses and so do the sockets were I had two teeth removed. After the retained root tip was removed in June things have become much more painful. I don't know where else to turn. I have been to three orthopedic surgeons, two dentists, two endodontist a, four oral surgeons, two infectious disease doctors and two internal medicine doctors. I went to mayo to my internal medicine doctor there on sept 13 and he referred me to their dental pain clinic but I am on a waiting list for an appointment 9 months from now.
My blood work from two weeks ago show normal sed rate and ESR. My infectious disease doctor told me to stay off of ABX so that whatever I have will show up. This is very scary and my pain is absolutely horrible. Worse everyday. I always wanted to be special but not in this way. My orthopedic surgeons PA said that hip infection going to your unoperated hip would only happen if I had HIV or something. I think I have primary chronic osteomyelitis of the jaw. It often has normal blood labs and cannot be seen during a physical examination. Often scans won't show anything until there is 40 % bone loss. Really only way to know is to get in the jaw and do a biopsy. No one will touch me especially since I have a prosthetic hip. I really have hit a brick wall.
 

Josephine

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BarbieJ I have reread your thread from beginning to end and made notes. I've also done some research. And I have to apologise to you because I wasn't paying attention to what you were saying. Neither, it seems, were your doctors. I know at the start you asked if your hip could be considered a MoM hip and I said absolutely not but at the time I hadn't realised you had a modular hip.

The notes I made from your posts were the following
1. pain in your hip a) like shards of glass b) so bad it almost caused fainting
2. swollen hip, buttock and thigh
3. general tenderness
4. skin tenderness, rashes, swelling and pain (?cellulitis)
5. lateral femoral cutaneous nerve damage
6. psoas tendonitis
7. ondontaglia
8. chronic cystitis

Since I attended the meetings about this MoM issues, I went back to my notes to get some input from those who spoke at the Metal-on-Metal Hip Replacements: Solving The Uncertainties Dec 2011 meeting. This meeting was followed up with a summary of investigations and research ordered and took place in February 2012. As a result of this, In March 2012, the chairman of the National Joint Registry (UK) issued an announcement recommending that MoM hips no longer be used as they weren't considered safe. However, it is becoming apparent that the modular hips such as the S&N short modular stem (and others) are not excluded from this problem.

Here are the particular comments I gleaned from my notes which you can read yourself in the link given above

5 . Mr David Langton North Tees and Hartlepool University Hospital
Cobalt or chrome ions: normal levels of 0.04% are not uncommon

7. Mr Tony Nargol, FRCS North Tees and Hartlepool University Hospital
When to revise MoM hips: as soon as they show signs and/or symptoms but not necessarily both. Some patients have signs of wear, pseudotumours, loosening and ‘fluid’ which might actually be liquefied fat. All patients should be referred sooner rather than later. Emphasised “pick them up early”

8. Mr Ben Bolland, FRCS Southampton General Hospital
MoM problems are often incorrectly diagnosed psoas tendonitis

9. Professor Tim Briggs, MB BS (Hons), MChOrth, FRCS (Ed.), FRCS (Eng.) Royal National Orthopaedic Hospital
Normal cobalt and/or chrome ion levels don’t always indicate absence of problems
Increased wear has more often been observed in the tapers (trunion) than the head or cup
Wear and motion at the trunion leads to corrosion

11. Professor Alfons Fischer, University Duisburg-Essen
This speaker emphasized the fact that in 80% of successful revisions, the need for them cannot be adequately explained

Metal on Metal ion levels: safe upper limits for MoM hip resurfacings set by scientists
If levels are between 4 µg/L and 10 µg/L, metal ions are moderately elevated and “thorough diagnostic investigations have to be repeated until you find the cause,” Van Der Straeten said.



This condition is called metallosis and is as a result of corrosion between two metal components of the prosthesis, in this case between the stem and the neck components.

Metallosis: what is it?
Metal ions set up a foreign-body reaction where the body's immune system, special white blood cells called macrophages, attack the area in an attempt to rid the body of the foreign substance. In the process, bone and soft tissue can be destroyed as the body tries to respond to the metal ions. The ultimate result can be failure of the implant from loosening of the device where the bone has been destroyed.

The list of conditions that can emanate from metallosis are significant:
- inflammation
- infection
- immobility
- joint stiffness
- lack of range of motion
- tinnitus
- vertigo
- peripheral neuropathy
- headaches

It would therefore not seem outrageous to suppose that your other symptoms such as chronic cystitis, odontalgia and skin inflammation could also be connected.

In other words, you need a revision to get rid of that femoral implant. Since you have worked your way though numerous surgeons and other medics, I really and truly think your only recourse is to contact Dr Maale, even if only to send him your notes and scan/lab reports so he can give you an opinion.
 
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BarbieJ

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Thank you Josephine,
My thread is now a very long, very sad story and I appreciate that you took the time to read it. I never dreamed when I first posted that things would get this bad. I am believing you and I agree I need to seek someone who is willing to take me on as I am even a challenge to Mayo.
I am so weak and in constant pain that I just don't know if I can gather myself up to gather up all my records. I will try. I don't know if I have much time left. Again thank you sincerely.
 

alexthecat

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Barbie, do you have a family member or close friend who can help you with this? Sometimes that can be a useful way to keep things organized and moving forward. It's hard when you have to do everything all by yourself.
 

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I don't know if I have much time left.
Now then - don't start talking or thinking like that! This thing might be debilitating but it's by no means fatal. And Alex is right - you need to get someone on your side. Why don't you get your sister to read this thread (well, just the last couple of pages, anyway!) and see if you can enlist her support and help?
 

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I agree, Barbie. You need some help with this and if you have a sister close by, please reach out to her.

And stay in contact with your BoneSmart family. We'll cheer you on and help when we can with what to do to get things together. You are definitely NOT in this alone!!!
 
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Josephine tashia alexthecat, and RestAssured, thank you for keeping me in your thoughts. This afternoon, I contacted Dr. Maale's office and they were very kind on the phone. The scheduling secretary was going to give me an appointment for next Tuesday. I was shocked since I had to wait three months to get my first appointment at Mayo with one of their orthopedic surgeons. That is 6 days from now. Here is my problem. They do not diagnose osteomyelitis of the jaw and I know I must get my dental nightmare diagnosed before I can have anyone look at my hip. If I do have jaw osteomyelitis, I think I am unfixable since it is intractable in its chronic form.
I have already consulted with the top oral surgeons near me and they did not see osteomyelitis and they do not have experience with the chronic form. So they are done with me.
So here is my brick wall. I am stuck. I can get into Dr. Maale right away but cannot get into Oral surgeons. They are very difficult to get into since they require a referral from your dentist and it takes weeks. If you have a reputation like Mayo, it's months and months. They are really only familiar with acute osteomyelitis. It is quite rare to have it be indolent and slow growing, but it can happen. Those are the hardest to diagnose and also the type with the poorest outcome. Even after removing most of your jaw and teeth it will still hide in the bone.
This is crazy. I can't believe that what was diagnosed as TMJ, has turned out this badly. Plus I had never heard of osteomyelitis and it just was not on my radar.
Oh and one more thing. My husbands mother was just diagnosed with stage 4 oral cancer. It took weeks to get into an oral surgeon even for her when she had an obvious visible tumor. He has been taking care of her everyday and really does not have time to take care of me also.
 

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Don't worry about your jaw right now. First get Dr Maale's opinion on your hip. If I am right, your jaw problem is connected to your hip anyway so is academic as to whether or not it can be treated.

But how do you know all this about osteomyelitis? Has this been definitively diagnosed by any doctor or dentist?
 
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Just to help anyone contemplating getting in to see Dr. Maale. If you think it will take a long time - don't delay. I was shocked to find out that it was going to be that quick. He only sees patients on Tuesdays and Thursdays.
 
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No, I have not been diagnosed with this. I have been to 4 oral surgeons and two infectious disease doctors, and an ENT. I have had a panoramic x ray and two MRIs. The first MRI said that osteomyelitis cannot be ruled out. The ct scan and second MRI said I had granuloma but was probably reactive after having the infected retained piece of my tooth removed in June. I have been in constant jaw pain since that time which is getting worse. The pain goes into my eyes and to the top of my skull. I cannot sleep except for straight on my back. It too painful to chew. It has been four months. I am almost totally on liquid diet with Ensure. I have yogurt and juice for lunch and at dinner I try to eat but only easy to chew like fish, mashed potatoes, etc. I am unable to eat French fries even now. Yesterday I made quiche.
Josephine, I have wondered if my teeth problems are a result from bacteremia from my hip. It could have been initially from a tooth, but has festered for nearly two years and involved most of my mouth now. Also, all that aerobic and anaerobic bacteria from my mouth getting into my intestinal tract and kidneys, etc. I know I have an infection. It was bound to happen with two urinary tract infections, cellulitis, two root cabals and two extraction plus another extraction for a retained root tip that showed infection. And every single dental X-Ray has been negative for anything. But, what I did not know is that cracks in teeth below the gum line do not show up on X-rays. I think I had or have several cracked teeth. My one tooth which still has a root canal which never gave me a problem ever, now feels like it has an abscess and is so painful. No one will pull it since they don't see anything and they think I have atypical neuralgia in my teeth and jaw. Hmmm. No one ever saw the root of my tooth that was left behind after the extraction in any X-rays either. X-rays are not gospel! It's just a nightmare. I just hate to tell you all this since I know I am the only one in the world who has had this happen.
 

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I have wondered if my teeth problems are a result from bacteremia from my hip.
Barbie, you're not taking in what I said. You don't HAVE an infection in your hip, you have metallosis which is a reaction to the corrosion in your prosthesis.

All the symptoms I listed that you have mentioned, they can all be connected with metallosis. So I don't care what the oral surgeons and infectious disease doctors said - they don't understand about metallosis, few doctors do. Look at the list of secondary complaints I got off the Stryker website. That's only some of them.

- inflammation
- infection
- immobility
- joint stiffness
- lack of range of motion
- tinnitus
- vertigo
- peripheral neuropathy
- headaches
 
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Last thought for the day.
The physicians assistant for my orthopedic surgeon up at Mayo told me in June that a hip infection going to ones unoperated hip and infecting that just didn't happen. He said the only time it could happen was if I had HIV or something. Well both of my hips hurt equally. When my CT scan said "could not rule out osteomyelitis of the jaw" I thought, now I can see that this may be the missing piece to my puzzle. An infection smoldering in my jaw like that could very well have caused all of the other issues I have been dealing with, such as joint pain in almost every joint in my body, and my interstitial cystitis. I thought it odd that when I was on 20 days of amoxicillin this past July my year long cystitis pain went away too, as did my dental pain and my hips felt amazing. My rashes went away, the burning pain, all of it went away. Hmmmmm. Amoxicillin works well for anaerobic and aerobic bacteria that are in the oral cavity, such as streptococcus. Just saying.
I have not been able to get a diagnoses for an of my pain problems. This could be the indolent slow growing culprit.
Hope not, but can't rule it out.
Moral of this story : good oral health means you need to be in outstanding oral health before joint replacement. And cracks in teeth do not show up on dental X-rays.
 

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Barbie - are you listening to me? are you reading my posts? Stop focussing on this mystery infection - it's not there.
 

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They do not diagnose osteomyelitis of the jaw and I know I must get my dental nightmare diagnosed before I can have anyone look at my hip.
Barbie, why do you feel you need a definitive answer on your jaw pain before seeing Dr. Maale? I'm not understanding why you could not meet with him as soon as possible.

Jo makes an excellent case for investigating metallosis and, if that's the case that you have it, it could be causing everything you are experiencing. To me....THIS is potentially the missing piece of the puzzle....metallosis! When talking to Dr. Maale's office, I would go with this idea and keep the idea of osteomyelitis on the back burner with him. Because you are right....that is not in his area of expertise. But metallosis most likely IS something he could address.
 
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I am reading your posts and listening. Is metallosis something that they just have to open you up to figure out what they are dealing with?
 

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Barbie, I think Dr Maale will have specific tests he needs to run. Then, if he determines that you do have metallosis, he will give you a revision to remove this implant and give you something better. We've had a few people recently who needed revision due to metallosis. They seem to do just fine in recovery, so try not to worry. Just take things one step at a time. The first step is to see Dr Maale and you're already working on that.
 

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We all care about you. Go and see the doctor and get on the path of getting well. Take care my friend and do go slow. I know you have been through a lot but I feel now things will happen, maybe slowly but know we are here for you. Take care my friend and do hug that dog of yours. Tashia
 

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Barbie,

Please follow Jo's advice! Get yourself to Dr. Maale. Have your complaints written down, and ask about metalosis. Take care of the hip, and it sounds like the ret will go away! Just get to Dr. Maale. ASAP! :console2:
 

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Barbie

I'm so glad you have this new opportunity to discuss your case with a doctor who seems - from what I've read on the forum - to be a gifted diagnostician.

I think I'm right in saying that what he will want from you at the appointment is "Just the facts, ma'am", though I'm sure he'll give you an opportunity to discuss your own particular ideas.

A very good and wise friend of mine was a brilliant solicitor (lawyer). Sadly he is now practising in the great courtroom in the sky. He worked on some extremely complex cases, and always set great store by having the information arranged clearly, in chronological order.

Perhaps you could make a start by going through your thread, and jotting down relevant notes from there, in the manner of a timeline. If you have X-rays, reports, or other items which are particularly relevant to any one point, you could number them in some way, and make a note in the timeline in red, say, "See X-ray 12" or "Doctor's report 4". Make sure all reports and so on include the contact details of whoever has written them, in case Dr Maale might want to follow them up. Make at least one copy of everything.

It might sound a bit daunting at first, but I feel sure if you can just come up with a clear format for presenting the information, you'll find it easy to slot everything in place. Of course, if someone can help you, all the better.

All best wishes.

Glynis
 
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