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

[Josephine]

Is metallosis something that they just have to open you up to figure out what they are dealing with?

Yes, sometimes they do because sometimes it defies all known tests but when you look inside and see all the black detritus and tissue destruction, that confirms it. As demonstrated by this picture

Besides which, this speaker said what most knowledgeable surgeons know to be true ...

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

 

[Jamie]

Glynis has an EXCELLENT suggestion, Barbie. I hope you get to work on that timeline right away. Dr. Maale will appreciate having something like that to work from to start your discussion. Plus....it will make you feel better to start doing something that is a positive step forward.

 

[Josephine]

Here's a summary of the notes I made yesterday, the dates you'll have to add yourself
Jan 14th post #1
- left anterior THR Nov 2011 - never 'felt right'
- groin pain and limited ROM
- UTI May 2012 > interstitial cystitis
- root canal > extraction
- lateral thigh tenderness with burning sensation, itching, nothing visible
- felt nauseous and exhausted all the time
Jan 15th post #13
- general joint aching with backache
Jan 29th post #36
- MRI showed degenerative changes in spine; also showed 'fluid on the psoas'
- now feels cold all the time
Mar 1st post #11
- more pain
- hips hurting, nausea,
Apr 8th post #153
- pain in hips like 'shards of glass'
Apr 28th post #218
- more skin issues, mysterious rash after test (reaction to skin prep)
May11th post #289
- gynae exam: gynae dr thinks pain is hip related
May 31st post #318
- hip now hurts badly enough to cause fainting
June 20 post #325
- tooth fragment found after extraction in Jan
- now has pain in both hips
June 29 post #333
- lateral femoral cutaneous nerve damage confirmed
Aug 23 post #353
- atypical odontalgia diagnosed, has severe mandibular pain

I left some things out like the ongoing dental pain earlier but at least it's a start.
The dates are the dates of the posts you made.
Hope it helps.

 

[tashia]

I just dropped by to say HI. Take care my dear Friend. Tashia

 

[C Mac]

Hi Barbie,

I like that list that Jo has written up for you. I think we are all here in support of you just getting to Dr. Maale, physically, so that he can determine what he wants to do regarding the metallosis. Sometimes doctors don't need all the reports and films, they like to collect their own test results. So if all you can bring is the list that Jo started for you and yourself I'm sure that will be a place to start.

Hoping some answers can come about on this hip issue and that you will be able to move forward.
Take care,
Cardie

 

[Josephine]

Barbie, where are you? It's been 11 days since you last came here. We're worried about you.

 

[tashia]

Barbie, It has been some time , how are you? Tashia

 

[tashia]

Barbie, Are you ok. When you disappear I worry about you. Please let me know your ok. Take care my friend. Tashia

 

[BarbieJ]

Thank you everyone for keeping me in your hearts and minds Josephine tashia C Mac glynis

I am having my records from Mayo sent to Dr Maale but Mayo said it will take three weeks due to patient backlogs. Dr Maale's office won't get them until after Nov. 7 or so. I have been working on a chronological list to bring with me. I am scheduled to go back to Mayo in a week but they now have me chalked up as a chronic pain patient and I believe my well is dry there. My husband just finished his last time taking his mother to her radiation treatments yesterday and he does not need to take her every day now.

I plan on getting in to see Dr Maale, but it will be at great expense for me since he will not be in my network. Dr Maale's office told me that I should get my dental problem figured out before seeing. I have hit a brick wall trying to get that figured out. I am now suffering from vertigo and vision problems with pressure on the back f my head. I cannot drive myself so I am talking to my sister. My husband does not understand my situation at all and just like the doctors if he doesn't see anything then there is nothing there. He thinks I am nuts to go to Texas to see Dr Maale.

I need to get to see Dr Maale before my insurance changes in January. We are taking a terrible hit and if I need a revision due to infection it will be at tremendous cost to me. I am guessing I will be paying Dr Maale $10,000 just for the diagnosis since they will no doubt need to do aspiration and possibly scans. Can't do a revision if I have a bone infection in my jaw. I am fearful of what Dr Maale will say. I have no doubt I have an infection or metallosis or both. I just think my situation may be intractable and no one can fix me.

 

[knees]

Barbie I'm so sad for all you are going through. Just want you to know I'm praying for you. Jesus is the great physician and there is nothing too hard for Him. Don't give up. ((HUGS))

 

[BarbieJ]

Thanks knees
I don't know what is in store for me. It doesn't look hopeful at all. I hope God will be with me. I appreciate your note of compassion.

 

[BarbieJ]

tashia
I took my doggie to the vet yesterday because he has not seemed right. Usually he is with me at my side all of the time. Now he lies in his crate most of the day or in the bathroom on the floor. The vet did X-rays and bloodwork and it looks like he has arthritis in both front legs and low thyroid. He still is on cyclosporine eye drops too. I am bringing him back in two days for another fasting check of his blood. Things just are so sad for me when on top of everything my dog isn't well.

 

[BarbieJ]

I am now thirteen weeks with no antibiotics. I remember Josephine mentioning that sometimes it takes 16 weeks for antibiotics to be withheld before things start to show on blood labs. The AAOS guidelines say two weeks. Not true for some of us. I am learning that anaerobic bacteria, the kind that live in the oral cavity are indolent and difficult to culture.

 

[Josephine]

I am fearful of what Dr Maale will say. I have no doubt I have an infection or metallosis or both. I just think my situation may be intractable and no one can fix me.

You don't know any of that. You'd need a medical training to be able to know that. I realise you have been badly let down by your present doctors but Maale is different. Don't try and second guess what he is going to say or do. He has methods and equipment for testing that are totally unique to him. For instance, he doesn't culture biological material to see if bugs will grow, he tests their DNA! That way he gets real results that other doctors don't. I heard him lecture when he was visiting the UK a couple of years back and I was very impressed! Try to hang on and be positive. I am sure he will come up with something for you.

 

[Jamie]

I agree with Jo, Barbie.....try to keep a positive hope in your heart even though you've been through a lot of disappointments. Dr. Maale IS different, which is why I'm so pleased to see that you are still determined to see him. Good for you!!!!

Also try not to worry about what any costs might be. When you get to the point that you might have to make a decision on tests or treatment, if you are private pay you need to negotiate with the doctor for a reduction in fees. It can be done and usually is for folks who need it. Remind them that you ARE private pay and so they will be avoiding the costly administrative fees associated with filing and collectiing insurance payments....not to mention the delay in receiving those payments. Most doctors, hospitals and labs can reduce the cost to what they would accept from an insurance company and that is usually quite a substantial reduction off the market cost for services.

Good luck, hon!!! We are definitely in your corner here!!!

 

[tashia]

Barbie, I know at times it seems overwhelming but do remember you are staying in for the fight. Sometimes it takes time for things to happen, the most important thing is to stay in the now. A minute at a time. I know this is hard but I believe that God never gives you more than you can handle. I believe this with my heart and soul. Remember we are all behind you. Your little dog is going to be ok also. Having thyroid problem is not that bad. As dogs get older they sometimes need help with the thyroid. We have your back. Take care and do remember you are going to be ok and things will work out. You must believe this. Please keep us in the loop. Tashia

 

[alexthecat]

Tashia is right! My cat has a thyroid condition. It's somewhat common in pets as they get older. Vets know exactly how to manage thyroid problems, so try not to worry. I'm sure your dog will be just fine.

 

[Poppet]

Hang in the Barbie, we are all here for you!

 

[tashia]

Barbie, Are you ok, I worry when I don't hear from you. I know that life is so hard and with all that your family is going thru is not right but remember you are loved here and we care. I need to see a picture of your doggie and a note from you. Take care my friend and please let me hear from you. Even if its a Boo. Love, Tashia

 

[C Mac]

Hi @BarbieJ

Just wondering how you are doing since it's been a while hearing from you.

Take care,
Cardie