Now I Know Nickel Allergy to my BHRs - On The Path To Healing

[Two4One]

On March 27th, I found out I happen to be one of the 10-15% of people who are allergic to cobalt, chromium, or nickel.  Now that I have detected my condition and begin considering my next steps toward a Bilateral Revision of my BHRs, I turn my focus to hope and survivorship.  Maybe sharing my experiences along the way will help fellow hippies thrive on their path too.


HOW TO GET A METAL ALLERGY TEST 'METAL-LTT' (Metal Lymphocyte Transformation Testing) http://www.orthopedicanalysis.com/metal-allergy/orthopedic_metals_-_metal_aller.html)

1.   Call the Orthopedic Analysis Laboratory at 1.312.733.7121 to mail you a METAL ALLERGY TEST Panel 2 Kit.  The Lab will walk you through it.  (If you also want to get your Metal Ions tested, you’ll need to order an additional kit.) http://www.orthopedicanalysis.com/
     
2.   Fill out all the attendant paperwork from their website and don’t forget the paperwork that’s included in the Kit itself.

3.   Ask your surgeon, family doctor, or favorite physician to order the Metal â€" LLT.*


*When I asked my local Ortho Surgeon to write my prescription for the Metal â€" LLT, he referred me to an Allergist because he didn’t do metal alloy testing in his practice.  The allergist who wrote my prescription had never heard of it, so it was a total disaster from their office mishandling, causing me to repeat the test three times.  This is why I recommend you email/talk with the Orthopedic Analysis Lab 1st to have your ducks in a row BEFORE bringing up the Metal â€" LLT to your doctor.

On the forefront of Biomaterial Compatibility research, the Ortho Surgeon Dr. Jacobs is affiliated with the Orthopedic Analysis Lab. He is widely known as the leading expert in Nickel & Metal Allergies causing heretofore inexplicable pain in metal implant devices of all kinds. http://doctors.rush.edu/directory/profile.asp?setsize=10&pict_id=0002490

After I forwarded my local Ortho Surgeon my METAL-LTT Positive Nickel Allergy results last week, his nurse said "He is going to discuss your situation with Dr. Jacobs in Chicago, and I will get back to you when I hear from him with his recommendations." 

Thanks for 'listening' as I take the scenic view route on my journey back to health.

2-4

[Dan L]

Very sorry to hear, you have been through so much.  I hope you get to a much better place very soon.

Are there symptoms aside from the intractable pain, that are attributable to the allergy as well?  Things to look out for or be aware of?

Continued strength,

Dan

[hernanu]

That will definitely help, Two4.  You've been through a lot, hope for it to be cleared up, but the more we can do to help people make the right choice, the better.

You're doing a good thing in keeping us informed as you go through this.

[Two4One]

Are there symptoms aside from the intractable pain, that are attributable to the allergy as well?  Things to look out for or be aware of? - DanL

I've got a big day today, but I will get back with you on this.  Dan, thank you so much for your awesome support.

Nanu, I'm lucky that I've had a lot of knowledge dropped on me by fellow hippies, so it's my pleasure to keep that flow going.

I'm also lucky that I've had the best life ever up until the hips blew in '09; this is just my turn on the wheel of life.  I'm really OK with that.  In many ways, this bend in my road has prepared me for gearing up for my bilateral revisions. 

I actually feel grateful.  I know for sure that I have the best chance of anyone to have that sterling recovery that I originally set out for because it's who I am and what I do.  These experiences have informed me, so I have a clear gaze into my best possibilities.

A champion is someone who gets up, even when he can't. - Jack Dempsey 

The best part of this is that I don’t have to do it alone, and neither does anyone else who writes here.  You all know, as always, I get by with a little help from my Hippie Friends.  ‘Lathe of Heaven’ â€" With a Little Help from my Friends https://www.youtube.com/watch?v=CsPnMtEx6Lo&t=120s

2-4

[moe]

10-4

2-4-1

;)

[happyhopper]

Hi
I am also reactive to Molydenum, Palladium and Nickel as you are and whilst I have had problems post surgery my metal ions levels are low and all scans have been fine.
I get the impression that this was a test to see which metals you are allergic to.
Apparently approx. 15 percent of the population are allergic to metals when placed on the skin but only approx. one in a thousand are allergic to the metals when placed as implants in the body.  I have spoken to Dr Gross and he advised me that he feels the tests are unreliable and that whilst some surgeons test before surgery, he did not feel that approach gave an accurate prediction of who would become allergic to an implant.
Have you had your metal ion levels tested?  Have you had an ultrasound examination of the soft tissues?
Hopefully if you are consulting with the top revision surgeons they may be able to guide you.
Are you able to advise us who you have consulted regarding revision?
I understand exactly how you feel when first learning of your metal allergies, I have been there, but it may be that a few more tests need to be done to be fully sure that your body is reacting to the metal.
Best wishes.

[Two4One]

Did you have a Metal-LTT (Metal Lymphocyte Transformation Testing) blood panel test done, happyhopper?  (The T.R.U.E. test is the patch test.)  From your posts, I understand you have issues following your [R Hip] re-surfacing 3 years ago, and you also had a rash 10 months post surgery.

Here is the science on why being allergic to the metal alloys in your implants requires them to be removed:

Dermal contact and ingestion of metals have been reported to cause immune reactions which typically show up as skin hives, eczema, redness and itching.
1. D. A. Basketter, et al, Contact Dermatitis 28, 15 (1993).
2. L. Kanerva et al., Contact Dermatitis 31, 299 (1994).
3. P. Haudrechy, J. Foussereau, B. Mantout, B. Baroux, Contact Dermatitis 31, 249 (1994).

Metals produce allergy (or an immune response) by attaching to circulating serum proteins and changing them enough to look foreign and dangerous to our bodies' immune systems.

Some cells (called antigen presenting cells) sense and process body proteins linked to metal, and other cells (called lymphocytes) respond to these processed proteins. Together they act to produce an immune response. - http://www.orthopedicanalysis.com/metal-allergy/Metal_Allergy.html

AND

Contraindications for a resurfacing procedure are still being defined.  Currently, absolute contraindications include elderly people with osteoporotic proximal femoral bone, known metal hypersensitivity, and impaired renal function. – http://www.surfacehippy.info/pdf/complications.pdf

As I've written above in my posts, I've had ALL the tests.  Also, as I've said earlier, I am in the midst of selecting an Ortho Surgeon to remove my BHR implants.

Thank you, happyhopper for your kind wishes, and I sincerely hope you enjoy pain free health soon!

[Two4One]

Are there symptoms aside from the intractable pain, that are attributable to the [Nickel] allergy as well? Things to look out for or be aware of? – Dan

Yes, there are.  Besides unexplained pain, effusion, stiffness and/or cutaneous eruptions following joint arthroplasty are the primary symptoms of Metal Allergy.  In fact, patients with metal alloy allergies can even test within acceptable Metal Ion levels. 

The METAL-LTT is generally the diagnosis method of last resort for aseptic painful implants with elevated inflammatory responses.  That definitely holds true in my case.  My X Rays were Negative, yet in the report comments a significant amount of ‘effusion’ was noted around my L BHR prosthesis and a somewhat smaller amount around my R prosthesis as well. 

http://www.orthopedicanalysis.com/metal-allergy/metal-LTT_metal_allergy_testing.html

BTW, I'm very happy to see how well you are doing Dan, and thanks for dropping by.

2fer

[Two4One]

10-4 - Moe

Thanks for the affirmation, Moe!

Much appreciated.

2 Fore

[Two4One]

I believe every Hippy out there who's lucky enough to have a partner in their healing journey knows what it's like when they just don't understand.  It's hard when your partner sees so much and is right there with you, but they can't know viscerally like you do.  :-\

So, every now and then you need to reach out and tell them more.  In that spirit, I'm sharing this email I sent to Hubs this morning.

Honey, I'm working on my hips every single day, first and foremost.  In fact, I've tirelessly worked my case for coming up on Five Years now.  I don't tell you everyone I talk to in forums and emails, because it's way too much for you.

I also have at least 2 phone conversations per day directly pertaining to my case.  Currently, I have spoken with at least 5 Ortho offices and have left three msgs with 3 different USA surgeons this week alone.

Forgive me if I don't have the time or the energy to cc you on everything I'm doing.  Next time you wonder if I'm on top of things, you need to ask yourself first why you'd even entertain that question in the first place.

I tell you what I'm doing for my hips in the broadest of strokes because you have your own minutiae to attend to, so you need to trust that I'm On It.

I love you, and I hope you understand.

2-4

[Two4One]

Hopefully if you are consulting with the top revision surgeons they may be able to guide you.  Are you able to advise us who you have consulted regarding revision? -happyhopper

Yes.  I’ve narrowed down my surgeon choice to Dr. Delle Valle at Midwest Orthopedics at Rush University Medical Center in Chicago and now have a huge weight lifted from my shoulders. -http://www.rushortho.com/ craig_della_valle.cfm

(His colleague at Midwest Orthopaedics at Rush, Dr. Joshua Jacobs, is the world’s leading metal implant hypersensitivity research scientist.  Their lab ran my March 27th positive Metal – LTT test to Nickel Allergy that I’d ordered thru a local Immunologist.) 

Dr. Craig Delle Valle is published and widely known as an acknowledged leader in reconstructive (revision) surgeries, so of course there is an extraordinary waiting list.  Their scheduling secretary initially said that Delle Valle’s always booked, turns away the large volume of patient’s clamoring to see him, and hand selects the cases he takes on. 

Fortunately, I've been working my own case since my failed BHRs over 2 years ago.  I'd taken it upon myself long ago to follow Midwest Orthopaedics' protocol in an effort to detect my post op pain generator.  Having my ducks in a row was an instrumental factor in getting that rare opening with Dr. Delle Valle; otherwise, his RN said they wouldn't even consider booking an initial evaluation until the patient had completed their prequel appointment protocol.  My appointment is now only a little over a month away!

MIDWEST ORTHOPEDICS PRE-APPOINTMENT PROTOCOL
"Please see below the information needs to send to our office (address below) prior to scheduling an appointment."

-          LTT results

-          OR report

-          Implant record (listing of implant names and catalogue numbers)

-          ESR/CRP  blood test within the past 6 months. (Rules out hip/implant infection)

-          Other sensitivity results and/or allergy testing if performed at an outside facility.

-          Copy of external medical records or note from the surgeon.

-           If being referral by a physician we would like a referral letter.

-          CD's of: MARS-MRI, CT scan, x-rays done with in the last 6 months.

I can rest easy knowing I've done everything in my power to detect the origin of my failed hip resurfacings.  I encourage every Hippy with unexplained troublesome implants to keep on top of all the myriad details and tests needed.  I hope the above protocol helps you work your own case.

Good Luck, Good Vibes, and Godspeed,

2-4-1

[hernanu]

It's great you greased the skids for your revisions that way, two4.

Thanks for posting the list, it is a good tool for hippies who may face issues the way you have.

Keeping good thoughts for you, it sounds like this is the way to get you pain free.

[Debcoco]

Hi Two4 one,
Always good to hear from you!
deb

[Two4One]

Yes!!  Tomorrow at 8:15am sharp, I'm getting my left hip revised at the new Rush Hospital in Chicago.  We hope to see a markedly improved revised hip in a matter of weeks.  When that happens, my right hip will then be revised several weeks later.  I'm told this is a difficult surgery because my bone has attached and grown all over my acetabular head, and when they're extracting my old chromium cobalt (that contains Nickel alloy) hardware there's a significant risk for my pelvic bone to shatter.

All of this pain and suffering could have been avoided had my implanting surgeon had taken a simple "costume Jewelry Allergy" history.

If all goes well, I'll have two hips that are pain-free and functional enough to return to work a broker. Thank you so much for all the support you have so generously shared with me.  Would you please keep me and my surgeon Dr. Della Valle in your thoughts, vibes, or prayers? 

Goodnight, and may we all have a healthy recovery and an active life! 

[Dan L]

Best of luck today with your revision, all vibes, thoughts and prayers with you on this next leg of your journey.  Hope the extraction certainly does not cause pelvic shatter.  Keep us posted when you get back in the pink, or closer to it anyway.

Dan

[evant]

Hoping all went well with your first revision today.

[Pat Walter]

Good Luck.  I will keep you in my thoughts and prayers.

Pat

[Boomer]

Welcome to the other side of the other side Two4One. I have been thinking about you!

Boomer

[Dan L]

Hope you are doing OK, getting a bit worried...... but assume you have enough to deal with after the surgery...drop us a line when you get up to it.

Dan

[livendive]

All of this pain and suffering could have been avoided had my implanting surgeon had taken a simple "costume Jewelry Allergy" history.

I thought the "costume jewelry allergy" thing wasn't really correlated with an internal allergy to implants.  I have a pretty significant reaction to some metals on my skin, likely including nickel, to the extent that it doesn't even really need to touch my skin, such as the pins that connect a watch to its band.  However I've not had any problems with surgical stainless, including anchors that have been in one of my shoulders for 15 years and bolts that were in there for maybe 2 years.  If skin sensitivity really is a definite contraindication for BHR, then I might as well abandon the idea right now and start trying to wrap my brain around a future that I don't currently consider the least bit attractive. Hopefully I'm misinterpreting your meaning. 

In either case, I'm also very hopeful that your revision(s) went well.