Allergy

[kimberly52]

So after a year of chronic pain I learned today that I am having an allergic reaction to my BHR.  After 11/2  years post op I started to have pain and choose not to have an aspiration last year thinking that the pain was referred from my back.

After I received my letter from my doctor indicating that my hip has a "voluntary recall" on it, I decided to have the aspiration which came back today with the result of being allergic to my hip.

I have to wait 3 weeks before I can see my doc and am tearing my hair out wondering what he is going to do about it.  I have many long-term plans for travel and have no idea whether a revision is in my future or what they do about this sort of situation.

Any hint as to what to expect will be greatly appreciated!

[susannatuttapanna]

I'm so sorry you are experiencing pain and allergic reactions. I hope others might have some advice for you.


Susan
Right hip resurfaced 2010

[jd]

That sounds very frustrating Kimberly.

Can you elaborate a little on why they think you're allergic? It's a bit of a contentious topic, but some of the major surgeons (like Dr Gross) essentially don't think there's ever an allergic reaction. Instead, in cases of a malpositioned implant, there is excessive wear, and the body cannot remove the excess metal ions from the area where they cause (non-allergic) serious problems.

The reason the small sizes of the BHR were voluntarily withdrawn was that the smaller the implant, the more difficult it is to get the placement correct. Here's a good paper from Dr. Gross going into quite a bit of detail on that:
http://grossortho.com/Journals/MetalIonLevel-2013.pdf

Did you get a metal ion blood test? If so, what are your levels? Have you considered getting a second opinion from another major hip resurfacing doc?

Good luck!

[JHippy]

Although your doctor may be well qualified to deal with it, I would get second opinions as well.

If you do have excess metal wear that's most certainly because of component positioning. Its after two years that this problem tends to present itself. I'm sure your doc will want to revise you to a THR. However some surgeons will look into revising just the Acetabular side thus preserving your resurfacing.

Regardless, you're having complications so I think it's very important that you get second opinions. The more info you have the better decision you can make. Get your xrays and test results to some other surgeons that have dealt with issues like this. Dr. Gross and Dr. DeSmet are the first two that come to mind and both will consult with you remotely.

So sorry you're having to deal with this!

[chuckm]

Sorry for the news. Being allergic to a metal implant is quite rare. It is different than metallosis which is often traced back to excessive wear due to poorly positioned components.
I would most definitely seek an opinion from another surgeon (a really good one).

Chuckm

[kimberly52]

Thank you all for the kind words and advice.  I had no idea that just the acetabular part might need to be revised.  That is a bit more hopeful for me.  I will contact both Dr. Gross and DeSmet on Monday and get the ball rolling.


I have looked into the allergy thing and see that it is very rare and now question this.  I saw the fluid that he aspirated and it was brown and cloudy. However, I cannot find anything on the net as to whether that is a true visual of metallosis or allergy. I will be stopping by Dr. Clarke's office on Monday to get a copy of that pathology report as well.


Interestingly enough, my former boss had a resurface from Clarke (that is where I heard about it).  Three years later she was having all sorts of skin eruptions. She is an MD and thought that she was allergic to something and was doing everything she could to identify the source.  Then one day she came into my office and told me that she suspects metallosis. She was correct and ended up having her BHR removed and a THR put in.  Within a week her skin began to clear up and she is now fine.


She also had a small diameter head like me.


So I question whether it was the device, the person, or the surgeon.  I hate to think it might be the surgeon because I really like Dr. Clarke and have been seeing him for years.

[jd]

I can only imagine how stressful it must be. We put a lot of faith in these surgeons to "fix us", hoping that it's for life. Being faced with the prospect that perhaps the surgeon didn't do a perfect job must be very hard.


If you read Dr Gross' paper above, you'll see that his diagnosis of allergy is essentially one of exclusion, and can only really be done after the revision. If your blood metal ions are high it's far more likely that it's adverse wear from a malpositioned acetabular implant leading to metallosis and the "cloudy liquid" might be a symptom of that.


The other correlation at this point would be the inclination angle of your acetabular implant. Based on the same paper, if you had a 46mm femoral component, your acetabular angle should be <49 degrees, and preferably <40 degrees. If you were all the way down at 42mm, those numbers become 43 and 35 degrees.


Anyway, sounds like you're on the right track. I'd make sure to share with Gross and DeSmet the implant size and x-rays, as well as metal ion blood test results if you have them.


It is important to realize that the BHR can be revised on just the acetabular side if everything is still good on the femoral side, and if it's metallosis due to wear, and not a true allergy, that seems like a far better outcome than converting to a THR.


Good luck!

[kimberly52]

So I have my pathology report and here are my numbers:

Color: Amber
Appear: cloudy
RBC: 16050 range: 0-299 H
Total Nucleared Count: 5500. Range: 0-200
NoEUT %: 3
LYMPH%: 45
MONO %: 21
OTHER%: 31 (synovial lining cells)

Comment: Possible hemosiderin granuals noted.

I am sending all off to Dr. Gross right now but ask if anyone can interpret any of this for me with regards to allergy or metallosis.  It will be a 2-week turnaround for Dr. Gross and 3-weeks before I wait before I see Dr. Clarke.

Any input is greatly appreciated.

[jd]

Do you know the acetabular inclination angle (angle of the acetabular implant)? What about metal ion blood tests?

Those are the two standard things I believe Dr Gross will want (although the angle can be calculated from x-rays).

[kimberly52]

I sent Dr. Gross the OR report which notes exactly how it was done. I also sent him 2 years of bloodwork 2014 and 2015, MRI report and CD with X-rays and the pathology report from the aspiration. Which is exactly what his staff told me to send.

What I am looking for now with this posting is any information regarding interpretation of these pathology numbers.

If you cannot tell, I am very anxious since this is all coming to head at the eleventh hour right before my planned departure from the area for 8-months.

[jd]

The pathology test isn't a common thing here, but hopefully someone may be able to interpret (I can't).

If you can share your acetabular angle and metal ion test results those are more straightforward to analyze.

Obviously, advice from Dr Gross is going to be far more valuable than anything we can say, but I understand how painful it is to be waiting anxiously for that.

I can only imagine how stressful this is! It sounds like a horrible thing to be going through.

[Tim Bratten]

Hi Kimberly52
I just thought I would mention that I am coming up on 4 years post revision to a THR done by Koen De Smet and this is not necessarily the horror that everyone here paints it out to be. I regularly jog, hike, backpack, rock climb and boulder and my revision to THR works great. In fact, I am much more active than other people I know my age who have not had hip surgery. Anyways, even if revision is the last resort option, if the surgery is done by an accomplished surgeon who uses a good implant system (mine is ceramic on ceramic: no allergy concerns), revision surgery can have a very satisfying outcome.
Good luck
Tim Bratten

[kimberly52]

Thanks Tim, I appreciate your input about a THR.

I did hear from Dr. Gross a few weeks ago and he was very kind to talk with me on the telephone for an extended period of time. His take on it was that my hip is so perfectly positioned that he could not have done it any better than Dr. Clarke.  He also noted that given my device is so well positioned that the idea of metallosis is very remote. He said that although Smith & Nephew have a voluntary recall on my size BHR that it is basically to cover themselves from inexperienced surgeons who do not get the angle correct initially and given that mine is at a perfect 35 degree angle he does not believe I am at risk for metallosis. He also said that he has never seen a true case of a metal allergy and maybe one or two cases of metallosis. He said that he highly doubts that I have a metal allergy. I noted that my boss who had a BHR definitely had metallosis as her skin erupted with open sores all over. She ended up having her BHR removed. He was a bit intrigued by this. Also, considering my bloodwork is all within normal range that was another indicator why he highly doubted metallosis and I agreed with him on that aspect.  He also said that if I am down that way during my travels that he would be glad to take a look which I thought was very kind of him.

This week I finished running the gamut of doctors. Dr. Clarke had believed that I may have had a problem with my back that was referring pain to my hip so to cover all bases he had me see a back doctor a couple of months ago. The back doctor said there was nothing wrong with my back and sent me back to Clarke. Clarke then did the aspiration and recommended that while I was waiting for the pathology to go get a second opinion on my back.

Two days ago I saw a new back doctor (Dr. Lavalle) recommended by Dr. Clarke at an entirely different facility than Clarke's. The new back doctor had more to say about my back and confirmed that I have some issues of stenosis, arthritis, etc. where L4 and L5 are a problem. He showed me where L4 is slipping forward pressing on nerves that are causing the referred pain.  He basically said that it will progressively get worse and when the pain is more than I can bear then I will cry uncle and he will be glad to go in and do surgery. I told him that will have to be in the distant future as I will be traveling until next fall. He did recommend that I have injections in my back but I refused given that I depart in a few weeks.  He also said that I can resume any activities providing I can deal with the pain because the only thing that will make my situation worse is time as the arthritis and stenosis progress.  I have to follow up with him when I return home next fall.

Then I saw Dr. Clarke today about the aspiration results. I told him what Dr. Gross said and Dr. Clarke responded that he disagrees with the part about a metal allergy.  Dr. Clarke indicated that I have a two-fold problem causing the pain which Dr. Lavalle's opinion on my back causing referred pain and his own opinion today which is that I am having a reaction to the metals. Although I do not have metallosis, there are still metal ions that I am sensitive to which is causing pain. How much of my pain is a result of each is a question neither Dr. Clarke nor the back Dr. Lavalle can answer.

Dr. Clarke wanted me to come back in 6-months but we agreed on a year since I will not be home until next fall.  He did say though that if my problem changes or gets worse than I may have to make arrangements to see him.

So that just about wraps things up for me and I do trust Dr. Clarke's opinion 100%.  Given that it is not metallosis or a malpositioned BHR then I am just going to deal with the pain because I really don't want to go under the knife anytime soon.  I know what activities exacerbate the problem (running, hiking, lifting) so I will do those activities within reason so that I am not in pain 24/7. That is the best I can do at this stage of the game.

Thanks for the feedback all and I hope that my experience was helpful in any way for someone who may be having unexplained hip pain post op.

[blinky]

Thank you for that comprehensive update. I wish you well.


A few clarifying questions:  Dr Clarke suspects you are unusually sensitive to metal? Do you have any other allergies or any autoimmune disorders? No plans for a revision, at least not now?


(Reread the whole thread.)

[jd]

I'll add my thanks for the update also. I'm sorry to hear that there's no clear answer at this point but I wish you the best of luck moving forward. Enjoy your travels!

[Pat Walter]

Kimberly
I am sorry to hear about your journey and pain with your hip resurfacing.  I am glad you have gotten options from several really good surgeons.

I hope that you can get it figured out.  Many people have problems with trying to figure out whether the pain is from the hip or back.  I am glad you finally found a really good back doctor.

Hopefully, with time, things will improve or get sorted out.  Just wanted to say I will keep you in my thoughts as you travel this difficult road to a solution.

Pat

[MattJersey]

Hopefully things will settle and give you little trouble during your travels.


I wonder if there is something in this story for those considering resurfacing. Obviously a worry about allergy and malpositioning.


But I also wonder if our (and I think we all share this to some greater degree) putting up with hip pain, compensating for years usually, putting off surgery due to our fear and doubts about suitability is a significant factor in developing back problems that later cause grief and continue our discomforts even after a good resurfacing. Maybe an argument in favour of not procrastinating.

[JHippy]

Thanks for the update. Wow. On one hand I'm glad to read that your hip implant is well positioned and and there's no metallosis. On the other hand I'm sorry to hear about your back.

Regarding metal allergy (when no metalosis exists) this is really controversial. In my layman opinion I agree with doctor Gross but this is debated among surgeons. The biggest problem is there is presently no way to determine whether that is the real source of the problem in any given circumstance. So if you have a resurfacing and complain of unexplained pain, you'll probably be offered a THR. However if you have a THR and complain of unexplained pain there's nowhere to go. If you do get revised to a THR it's more in "hope" that it'll work since there is no way for them to know for sure.

The other curious thing is in your last post you mentioned that hip pain comes on mostly with running, hiking, or lifting. To me, again layman opinion, an allergy would be persistent and not triggered by activity. I don't "believe" there is a significant increase of metal ion particles during activity that then subsides after activity, but I haven't been able to find an answer to that one way or another. There are people that have problem running more than a a one or two miles that have temporary pain that subsides 10-20m after the activity stops. Again that's unexplained. Some of the runners themselves have speculated that it's a temporary increase of metal particles; there's no proof though. And some runners seem to be developing workarounds (basically warm up routines that bring lubrication into the joint).

I think you're absolutely right in avoiding any surgery right now and you were very smart in getting other opinions. Hopefully with time things will resolve itself or at the very least you'll get more clarity. Good luck and thanks for keeping us informed, kimberly52.

@MattJersey: Yep that worry was one of the things that drove me to surgery. I really felt how my whole body was affected with the hip out of whack pre-surgery, especially towards the end.

[kimberly52]

Thanks all for the kind words.  I will try to answer those questions since my last post so here goes:

To JHippy:

"The other curious thing is in your last post you mentioned that hip pain comes on mostly with running, hiking, or lifting. To me, again layman opinion, an allergy would be persistent and not triggered by activity. I don't "believe" there is a significant increase of metal ion particles during activity that then subsides after activity, but I haven't been able to find an answer to that one way or another. There are people that have problem running more than a a one or two miles that have temporary pain that subsides 10-20m after the activity stops. Again that's unexplained. Some of the runners themselves have speculated that it's a temporary increase of metal particles; there's no proof though. And some runners seem to be developing workarounds (basically warm up routines that bring lubrication into the joint)."

Possibly I did not make my statement very clear.  There is constant pain in the hip, buttocks, and side of my leg. This particular pain is a very dull ache and does not go away ever.  On a scale of 1-10 it is like a 2.  When I aggravate myself by running, hiking, and lifting the pain is very intense and on a scale from 1-10 it races to a 6 and sometimes a 7 depending on how hard I worked it.  It normally takes a day or two to subside and forget about trying to sleep comfortably.  So in my layman's opinion that dull constant ache is most likely from the hip metal sensitivity/allergy (whatever it is) and the post workout is most likely from the back issue.  Again, that is my own opinion based on knowing how I feel.

To Blinky:

"A few clarifying questions:  Dr Clarke suspects you are unusually sensitive to metal? Do you have any other allergies or any autoimmune disorders? No plans for a revision, at least not now?"

Dr. Clarke and I discussed this a few months ago because I read something about it and asked if we should check that before the aspiration. His response was that I could spend about $400.00 to have some tests that are not covered by insurance to see if I have a sensitivity to metals but it would not tell the whole story as to whether I had metallosis or not which is why he wanted to do the aspiration, MRI, etc.  I will say though that in hindsight I could never wear cheap earrings because they hurt my ears. Quite honestly I never thought to ask about this prior to surgery because it never crossed my mind.  My mother and sister both had a sensitivity to cheap metals. I also talked about this with Dr. Gross and he mentioned that most times it is the nickel that people are sensitive to. He also said that there are trace amounts of nickel in our BHR's.

My general doctor did run a full blood panel to check me for any autoimmune problems a few months ago and everything came back perfectly normal.  I am not allergic that I know of. Just your basic spring pollen issues which most everyone has.

As for a revision? Well I will hold off on that as long as possible unless things turn south on me. 


I hope that I addressed everyone's questions and do appreciate the feedback.  I did go for a 2-mile run this morning and yes the pain is at a level 6 and I will just deal with it and need a day in between runs which is okay.  I will continue to do so because that and hiking are really a part of my life. Having run long distance for years I can tolerate pain quite well and refuse to become sedentary. We are aging and slowing down fast enough already!

Besides, there are far worse problems one can have.  I'll most likely be off the site for awhile as we travel and check in periodically throughout the year. 

Best to all and Happy Holidays!

[bestbob]

Hi Kimberly52, I remember when you had the BHR, as I followed your recovery/postings because I had mine in June of 2013, 2 months after yours, and I spent a large amount of time doing research and reading everyone's posts.

Anyway, my heart goes out to you for what you have been going thru the last year, and yet applaud you for the due-diligence you are doing along with your attitude to continue your life/travels for the next year.. Your posts are lessons learned, at least for me, and wishing you nothing but the best.

Best Regards,

Bob