acetabular cup / metal ions

[woodway2]

Hi Everyone
Thanks for all your kind and supportive thoughts. I am still awaiting a note from Dr. De Smet and will let you know when I hear from him.
Nancy

[MarilynRS]

What ever did Dr. De Smet tell you ?  Marilyn

[B.I.L.L.]

What ever did Dr. De Smet tell you ?  Marilyn

X 2

Hi Nancy,  any word yet ?   

This thread reminded me of the emotional roller coster this whole deal has been.  I am due for my 9 month x-rays/checkup in about 2 weeks and am hoping the decision to "Ride it out" and see how it performs was the right choice, hope all is well and keep us posted. Bill.

[woodway2]

Hi Bill, Pat, et all
Thanks for your thoughts!
Well......I can't remember what my previous update was. I come in and out of worrying about it and for a couple of months there was having a good time not thinking about my hip at all! Partially inspired by Bill....thanks!
So, a little background. I have a high acetabular cup angle, the first measurement was 55 degrees and every time I get  measured the xray reader gets a little more careful and now we are up to somewhere between 60 and 64. There is no doubt that there is serious impingement and that is the reason for my high metal ions. Levels have been taken 5 times and have risen from a 3 month level of 57 nmol/l (2.99 ug/l) to the most recent, shocking result I just got of chromium 1065 nmol/l or 55 ug/l, sometimes expressed as ppb. My right BHR was September 2007. I am Canadian, noticed the high angle myself after finding this web site and getting educated (thanks, Pat!) and asked my surgeon for blood tests, which he kindly agreed to to.
I have had several opinions, and my surgeon has now referred me to a surgeon in Ottawa who has more experience with resurfacing and is doing a metal ion study.
I have had several opinions. Dr. De Smet wanted me to revise immediately but that was based primarily on the ion levels (at that time Chromium was 798 nmol/l). All the North American doctors (including Dr. Su) suggested waiting until xrays or ultrasound revealed any bone damage or fluid buildup. All these opinions were based on those levels around 798. So when I got the new levels a few weeks ago I immediately arranged to go to Ottawa again ( a 5 hour trip for me). My Ottawa doctor is concerned but still not eager to rush me into surgery when I still have no pain and no symptoms except the blood tests.
But we did start to have the "revision talk". I am going back in August to do a complete new set of bloods, xrays and ultrasound and we will make a decision.

Here are some other thoughts:
I think we all need to be pushing doctors to do blood tests. It's only with more information doctors are going to find out what the true norm is. What is high? Nobody knows. There needs to be much more research on this. I'll bet there are hundreds of resurfaced people out there who have levels like mine and don't know it. There seems to be this attitude that what we don't know won't hurt us. Well, I think that must change. The problem is that once we know about our metal levels, there is so little research that the doctors don't know what to do about it, if anything. All that is known about what high metal levels can do to the body is based on inhaled or ingested metal, not directly blood born as in resurfacing. And, by the way, these very same issues occur with the MOM total hip recipients.

I really like my hip, am back horseback riding, hiking, everything I want in life. But.....what are these high levels doing to me???? Nobody can tell me. I would so like to hear from someone else who has levels like mine! I research constantly on the internet but not much comes up. I did come across this little article, though, which I found very interesting. I've attached it - hope that works!
Thanks all
Nancy

[stevel]

Vicky Marlow has released the results of metal ion tests arranged by Dr. Su and the results are very very low.  Chromium was 2.1 parts per billion (ppb) and cobalt was less than one ppb.  She said Cory Foulk levels were also very low and he runs marathons, iron man triathlons and ultra man triathlons.  Both had their BHRs installed by Dr. Bose in December 2005.  So at least two  properly placed devices do not shed ions much since the synovidal fluid lubricates the surface (See results on her website).
On the other hand an improperly placed device (see Jane's story on this website and Vicky's website) does shed a lot of ions and Jane eventually needed a ceramic THR revision by Dr. Su in September 2008.

[woodway2]

Thanks Stevel
One little correction...Dr. Su's opinion to stay the course as long as there is no pain is based on my new levels at over 55 ppb. Xrays sent to him by Vicky (thanks Vicky). So there is a calming opinion...

Bill, I ranted on without saying good luck to you and I hope all your tests go well and you continue to surf and ride!
All the best,
Nancy

[B.I.L.L.]

Thanks Stevel
One little correction...Dr. Su's opinion to stay the course as long as there is no pain is based on my new levels at over 55 ppb. Xrays sent to him by Vicky (thanks Vicky). So there is a calming opinion...

Bill, I ranted on without saying good luck to you and I hope all your tests go well and you continue to surf and ride!
All the best,
Nancy

Thanks Nancy.  Seems like I have heard a different opinion from every doctor I have questioned, but the one thing they all have said is that if its working good and you don't have any pain or discomfort, then don't mess with it.  I go from "Man it's not right, I gotta get it fixed asap before I get a tumor or cancer or it dislocates or comes loose or my tissue gets all black and gooey from the metal ions and my leg falls off etc etc etc......" to  "Ahhh screw it as long a its working I don't even want to know, lifes too short already I'm just going to charge and enjoy every pain free day I have and if the day comes when something lets loose I'll deal with it then"    If I have to get a thr then I'll get a thr you know, whatever.  I'm just gonna wake up and make sure I get some enjoyment out of every day and try to forget about it.........and then I come back in here... HaHa  J/K !!!   

Anyway I get new x-rays in a few weeks, I'll see what my new doctor says along with a few others and go from there. I wont get my blood tested by Kaiser I'm sure since they told me they don't have any way to test for metal ions yet (thats pretty confidence inspiring huh ?)  I'll post the results and any other info I come across, keep us up to date and good luck !, Bill.

[Catalina]

Hi.  I just read your posting and would very much like to hear what you decided to do.  I have what I think is a similar problem: elevated chromium/cobalt levels and and a cup angle of 56.  My surgeon says he recommends a THP now because he thinks I could have metal sensitivity.  I don't know what to think, although I do believe that the cup angle is due to surgeon error.

[fedup]

I had metal levels done 3 years after a failed Durom cup (constant pain for 3 years), "perfect xrays". The levels were very high pre op and are coming down slowly post op (metal on polyethylene THR) . At 4 months post op the chromium is within normal and the cobalt is coming down but not normal. The new hip feels great. My metal levels had never been done  prior to my request prior to my recent revision. I agree that they should be done routinely. I don't know if the metal in my blood etc was causing symptoms but I no longer have night sweats, which used to occur fairly regularly. If I had no pain and normal xrays, I don't think I would want to get a revision just for metal levels (if my renal function was OK). I don't think I'll get a MOM on the other side given all my problems though it was likely due to the faulty, loose Durom cup (never integrated with bone).

[B.I.L.L.]

I had my 9 month X-rays with the new Dr. who told me "Everything looks fine"  I asked about the cup angle (mine is about 65 degrees) and he said "Not all steep cups fail and any problems related to metal ions wont begin to show for a couple years, wait a year and then come back"  I asked him what he was looking for on the x-ray and he said if the componets start to show dark spots along the edge where it attaches to the bone then the bond is starting to deteriorate and a revision would be needed.  He seemed to think he could do a cup revision only and keep the bhr.
He also said Kaiser Permamente dosen't test for metal ions because there is nothing they can do about it anyway, plus there is not enough data on what is or isn't too high.    Needless to say I am pretty fed up with Kaiser, I get the feeling they just tell me what they think I want to hear.  2 weeks ago I had another kaiser dr who wanted to see the x-rays and told me that "They lost them"   I had knee a x-ray today and the kaiser down here in orange county had a digital x-ray machine and put them on a disc but the kaiser in fontana where they do the resurfacings still use film.......I guess because there easier to lose ? ::)
Anyway I am going to Hawaii october 7th for a few days and then coming back to San Diego on the Ronald Reagan aircraft carrier. My daughter who is in the Navy is stationed on the Regan and they have a "Tiger Cruise" where family members can spend 6 days on the ship (from hawaii to san diego) Our son (then 16 years old) did it last year but this year my wife and I are going.  They wanted a release because of my hip and thats how I found out about the "Lost" x-rays. Luckily the dr was cool and gave me the ok to climb up and down ladders.
I plan on getting the tests done on my own after we get back.  I'll post the #'s when I get them. I am curious how high they will be since I am on my feet all day and lift 50 to 100 lbs regularly.
But fun in Hawaii is my priority right now........ ;D

[woodway2]

HI Catalina and Bill
Funny, I saw my Doc on Monday, made the decision, and then thought I'd give the internet a break for a while. Last night I went on just one more time and saw your letters. My levels were tested in June and for some reason took 2 1/2 months for the results. I am still way up with levels over 1000 nmol/l or over 55 ppm of both chromium and cobalt. Catalina, do you know what your numbers are??

My new doctor (he did not do the resurfacing) is not pushing for revision. He says he treats the patient not the xrays. This is because I have shown him emails from Dr. de Smet and Dr. Bose both encouraging me to revise based on metal levels and high cup angle (which is somewhere between 59 and 64 depending on who measures it). I get the sense from my reading that the North American trend is to revise only in cases of pain. I have had only one instance of pain in 2 years and that went away. My xrays still look good with no sign of damage or changes. But on the other hand he does agree that the levels are high and thinks they will stay high. I get the impression that he thinks the joint will last if we leave it alone.

But, I am just not comfortable with these high levels. As I work with cobalt and sometimes chromium ( I have done a clean test staying out of my studio for a month and the levels are the same) I am aware of their potential hazards and am ready to revise. That said I have been placed on my doctor's "long list" and might wait 6 months to a year for this. I will revise to the old poly/metal.

I am beginning to think this expression "surgeon error" is a bit of a red herring. High cup angles are really common. This surgery is extremely difficult and even the experienced doctors sometimes place the angle too high. I'll bet there are hundreds of recipients of resurfacing and MOM THR's who have high metal levels and are not aware of this. The medical establishment is going to have to come up with better computer guidance (right now only the femoral side is computer assisted) or some other way of insuring better placement of components. I do agree with you, Fedup, that metal levels should be done routinely. But the medical establishment will also have to come up with guidelines regarding what levels are acceptable and what to do if high levels are detected.

So that's my little rant for today....you can sense my anxiety. I hope I've made the right decision....
best,
Nancy

[Pat Walter]

Hi Nancy

Most surgeons are very concerned with very high metal ion levels. While attending the 2nd Annual Hip Resurfacing Course for Surgeons in LA in 2008, I saw videos of resurfacing devices being removed when the ion levels were very high.  Very ugly mess of black tissue and gunk. I would not want that in my body.  I guess it is the way the body reacts to such high metal ion levels - I am not a doctor and that is the only way I see it as a layperson.

Next week I will be at the 3rd Annual Hip Resurfacing Course in Baltimore and will hear many presentations about the metal ion subject and acetabular cup placement.  I will listen and learn - then write a report from a patient's perspective about what is currently happening.

If the top surgeons in the world are worried for you, I would tend to agree with them.  They have done many thousands of these surgeries and have seen many revisions - not of their own but from other surgeon's problems.  They are the best experts we have right now and I would have faith in their recommendations. You definitely would not want to get into any problems from the high metal ion condition.  You definitely need to monitor what is happening in your hip.

I can't tell you what to do since I am not a doctor, but I am happy you are posting your experience for others to read.  That is the way we all learn.  We are listening and will support you in your decision - whatever it will be.

Pat

[MarilynRS]

Hi Nancy -- Have you considered a ceramic on ceramic THR ?  I saw that that is what Dr. DeSmet does when he needs to revise, and I believe I have read that the Europeans are ahead of North Americans with this particular technology....  also that the ball sizes can be quite large, similar to the metal....  Seems like a good possibility for also avoiding polyethylene problems down the road....   Also, is the possibility of just revising the acetabular component still an option for you (and keeping your resurfacing)?  I know you mentioned that some time back. 

The best to you,  Marilyn

[woodway2]

Hi Pat and Marilyn
Thanks, Pat for your reassuring words! They help a lot! I look forward to your report.
Marilyn, I did consider the ceramic, but read a horrific report somewhere on the net about one person's experience with a broken ceramic hip. The fragments left behind led to multiple revisions afterwards as the particles of ceramic were impossible to completely clear out of the area. I know Dr. de Smet does them but it's too scary for me! The idea of just revising the cup was brought up, but really I don't want to be having to check levels after the revision. Better emotionally for me to move on....
bye for now,
Nancy

[MarilynRS]

Well, the best to you as you move through this journey.   Please keep posting and keep us updated, because I think we all have alot to learn over time from your experiences and about this topic in general.  It does seem like a study would be good, and as a group, we would probably be willing participants if a group of doctors or whomever came along to track and do such a study.  Goodnight,  Marilyn