Advice on testing needed with problematic hip implants THR

[kayeah]

I am new to this site and not sure how to post yet, so I created a new topic. That is probably wrong. Yikes. My problem is that I had a THR done in 2006 on right hip, then had left hip done 2007 11 months later. Now I have cobalt serum level of 7.0, cobalt random urine level of 64.3, chromium plasma level of 5.6 and chromium random urine of 24.2. Also, my chromium/creatinine ratio is 13.8 done with random urine test. My cobalt cpt was 80084. Was that the correct test to run? What other testing should I have at this point. I have pain, disfiguring painful lumps at incision site, scar tissue buildups or lipomas I have no idea, but soft lumps and hard lumps from incision down to thigh area running along the stem I assume. So far, I have had an echo of abdomen, which showed fatty infiltration and mildly enlarged liver. My AST which was 16 in 2010 is now 136, my ALT which was 22 in 2010 is now 141. I have so many symptoms, I now see a cardiologist for diastolic dysfunction and hypertension, I am now a diabetic, I have rapidly gained about 30-35 lbs, I am severly short of breath, as even dressing makes me winded. I have seen a pulmonoligist who ran a breath test and said a mild restriction is all he saw at that time. I am sorely fatigued, my bones are "tired" all the time. My cognitive ability is off. I can't speak a whole sentence without pause, or without searching for a word and then getting it out. My short term memory is terrible. I don't read anymore because I can't retain it. I have such weakness in legs still, fluid retention, rash occasionally on abdomen, I hate to keep listing my problems. My question is this. At which point do I seek a revision, and which tests should I be undergoing now? I feel like at least an aspiration of my deformed area should be done to see what lies in the fluid, but I am feeling like the physicians I have are not pro-active, they are scared to touch this subject and I am left asking for my own tests to be run even coming in with the cpt codes to help them. I could use advice from those who have knowledge, have been there and have time to answer. I am 51 years old now, so I was 45/46 respectively at time of THR. 

[einreb]

I hate to keep listing my problems.

Don't worry about that... feel free to vent, you will get plenty of support here.  Most of this board is specific to resurfaced hips, but if your THR is metal on metal there is the potential for a lot of the same complications.

What THR device do you have?  it is metal on metal?
Where are you located and what doctors have you seen?

Plenty of folks here will help 'speculate', but I suspect that the best advice you will get will be to go see a TOP ortho hip surgeon (Gross, Su, Bose, etc).

If it is metal issue, there are likely some good ceramic options available to you.  Keep up the fight!

-Bernie

[kayeah]

Thanks! I have Depuy Pinnacle, with large heads, well lets just say they are prob next on the recall list. I have metal on metal. I know they are faulty. I have to make the best decisions for my own health as is possible. I need quality of life so I can enjoy walking, without pain and extreme sweating and breathlessness. I have been a bit disappointed by my orthopaedic as i was dissuaded from even having the metal testing done for a good year or so. The surgeon is not at fault for the hips being on the market though. Since my first hip done is the most problematic, and the initial surgery took 5 1/2 hours, i am leery of revision by any but the top hip specialists. I had congenital malformation along with osteoarthritis. I need a specialist who is great, will dedicate the time to do a possible long surgery and who is skilled in complex issues of hip I guess. I also am interested in (actually hopeful) the possibility that the hip could maybe just maybe be opened without cutting through muscle again as the recovery was long and difficult and I was alone most of the time at a time when I needed more help (the first few weeks).
Of issue as well is the durability of a ceramic or any hip revision. I am 51 so I would love to not have to face this again for a good long while. I also have sensitivities to many things already, and have a few concerns. I guess I am the Princess and the Pea. (not that bad though).
As much research as I have done, I am scared i will miss some fundamental thing, and i hate to say this but I don't trust the HMO system/facility so much. I have been shifted around to many different doctors and while I am glad for the willingness for them to hear me (as complaints mount)I am also frustrated. They havent apparently dealt with this, and I am avoiding the orthopaedic for now as all my efforts fell on deaf ears and I have not been followed with xray even if I go in to complain of pain and weakness.
I am going to look into insurance issues with out of state, I just would love input as to the right choice in hip revision specialist for me. Thanks again!

[John C]

You deserve a lot of credit for being so proactive in searching out solutions. You are certainly correct in knowing that you want to have a top specialist deal with any possible revision.
Another name that you might consider is Dr Young-Min Kwon at Massachusetts General Hospital. He has written papers and done presentations on metal issues, including diagnosing and doing revisions. He is not specifically a resurfacing surgeon, so you will not see much about him on a resurfacing oriented site like this one, but in your case with a metal on metal THR, he could be considered a leading expert in diagnosing and treating whatever issues you may have.
I am sorry to hear about all of your symptoms, and encourage you to continue your proactive search to find a clear diagnosis and treatment path.

[Pat Walter]

kayea

You are welcome here, even with THRs.  That's why I have a special section. 

There are very few labs that can run the blood test for metal ions and you need to get to the top hip resurfacing surgeons to get that done properly.  You don't say where you live.

If you tell me, I will suggest surgeons in your area of the country to get a second or third opinion.  You might have to travel.  Most of us that had hip resurfacing traveled to use the very best surgeons.  I will also suggest that you use on of these top surgeons for your revision if required.  Hip Resurfacing is a much more difficult surgery than a normal THR.  These surgeons also do THRs and revision surgeries.  You only want to best if you require a revision.  THRs must also be placed properly to work as they should without edge wear or problems.

Most metal ions are formed from edge wear of the metal components which means your acetabular cup and possibly femur component were not placed at a optimum angle.  So don't excuse you surgeon, yet.  Almost all, except for a very few, of hip resurfacings that resulted in high metal ions were from edge wear where the two components are rubbing together improperly from being incorrectly placed.  This can also be a problem with THRs.  There is a lot going on to cause problems depending on what is wrong. 

Let me know where you live.  Several surgeons will give you an email consultation, but you need to visit one to get a blood test for metal ions.

Pat

[kayeah]

Thank you for the response. I have been looking into the top hip surgeons, and have liked the following surgeons solely based on profile and reputation, Dr. Michael Mont of Baltimore, Dr. Young Min-Kwon of Boston and Dr. Brooks of Cleveland Clinic. I have to figure out how insurance plays into this, I may have to wait until next year and change insurance companies in the mean while. I will work that out. My surgeon who placed the hip implants placed the Right hip at 45 degrees abduction and about 25 degrees anteversion. The femoral cup was 58 and the reaming/broaching was up to a size 3. A +12 neck length. Right hip flexed to 90 degrees before dislocation. The left hip used a 58 cup as well with about 45 degrees of abduction and 25 degrees anteversion. Reamed to size 3, was placed in a native version of about 15 to 20 degrees and finally a +12 neck length like right hip. Left hip is now 15 mm shorter than right. Bad deal for me, as it created scoliosis and pain. I don't know if any of this makes sense to you, only that it looks like right hip may have been set incorrectly a bit, which may be why it is the sorest, and the hills and valleys of the hip to thigh are plaguing me with pain. The appliance also feels so close to surface. I also had no cement. It was explained to me that it was the best idea to let the bone grow in like a trellis, and it would adhere to the foundation and fill in on its own. I hope it did. I didn't say where I live, I live in Louisiana. I have checked it out pretty well here, and I know of no one in the state who has a reputation for being outstanding for this particular thing. Knees yes. Hips not to my knowledge. Hope this is helpful. I am trying to prioritize my to do list which is to have a surgeon who expects me at some point within the next 7 months for surgery if it warrants. Also I need to approach the doctors I have now OR a new one if one is decided on soon, to order the necessary tests I need. So far I have tested high for both cobalt and chromium if indeed I had the correct types run. Next, I don't know what to test for unless an aspiration of right side of hip would help in diagnosis. Thanks so much for taking time to respond.

[Pat Walter]

Dr. Mont and Dr. Brooks are both excellent.  I don't know of the other surgeon, but that doesn't mean he is not good.  I would also add Dr. Su of NY to your list.  He has done a lot of revisions of other surgeons errors.  Also Dr. Gross of SC is one of the most experienced hip resurfacing surgeons and is able to do very diffiuclt cases.  You can actually email Dr. Gross and he will call you back in a few weeks.

Here is their  contact info    http://www.surfacehippy.info/listofdoctors.php

I think you are on the right track with those surgeons, but I would not do any more tests until you consult with them.  They know the labs for metal ion blood testing. There are very few. 

Please keep in touch when you can.  We would like to give you as much moral support as we can.

Pat

[kayeah]

Pat,
I appreciate the new lead for Dr. Gross and I will look at him. This site is really putting so many of my questions and concerns to rest. I am getting on a good track here and plan to have good resolution by the ones who know what they are looking at. Appreciate it Pat!

[Dannywayoflife]

Kayeah,
           Really sorry to hear of your problems and I truly hope that you get them sorted and get your life back! I'm no surgeon or expert but 25 degrees anteversion sounds a little much to me I know with resurfacing they shoot for 15-20 degrees.
You won't go wrong with any of the surgeons mentioned above!
Danny

[kayeah]

Thanks Danny. I read that they try to stay at the 20 degree cap for that. 25 degrees is off I agree. I know when I woke up he fussed that the operation took 5 and 1/2 hours and that it was a buggar of an operation.  He had to cancel his other cases. I felt bad. He did have a rep in the operating room with him at the time (to help him with the installation). I am trying educate myself on everything so I can understand what goes in to the procedure and to follow my future care. I want the next operation to be one I go into with confidence that I did my part to make the most educated decision i could make. I will have a better recovery with a lighter hear if I do a better job on my end. Thanks for that point, Danny.

[Dannywayoflife]

Keyeah,
            From the sounds of it I wouldn't be re using that surgeon! But the surgeons mentioned already have a great reputation with the patients who they have helped on here. There are numerous patients from all the docs mentioned that are members on here.
       

[kayeah]

I will be using one of the acclaimed doctors I have been hearing about on this site, Danny. I just want to get all my ducks in a row with insurance which means for coverage of any type I will have to switch when open enrollment comes around in October, looking at surgery in January, earliest. I am so thankful to have this forum to get the advice I have gotten, as it is invaluable to hear first-hand vs picking blindly by profiles etc. I wonder, is it possible to recover from revision surgery in better shape than with THR? More function, less pain? I mean my muscles are weak, not really working fully, even though I rehabbed much more than was usual for my operation. No clue though as to why my function is so weak.

[kayeah]

John C Senior Member, you mentioned Dr. Young Min Kwon as a good surgeon to go to for revision. i have spoken with his office and I believe you are correct, this will be the surgeon for me I think. I feel he best fits my issues, and his staff says he is very familiar with patients presenting with elevated cobalt/chromium levels. I will not be able to see him untll 2013, as I need to change my insurance company, which is a pain, but will be doing chelation therapy in the meanwhile. Have you or anyone heard or know of success with this? First they start with injections for CFIDS (chronic fatigue immune dysfunction syndrome) which is brought on by the toxicity in blood. Then they test for sensitivities to all metals (for useful info when doing revision etc) and sensitivities are rampant with the toxicity too. Sensitivities to all manner of things. Then the chelation. I would be very interested to know if this could work for removing toxins while waiting for revision, as I am not wanting to spin my wheels waiting without progress. (impatient)