Spine New guy looking for spinal info please

[Bound]

I know this isn't the right section but I'm looking for help. 15 years ago I was one of the first in CA to receive a disc implant. I won't go into all the details but it's been a nightmare. Pain was worse and my body was breaking down. Joint pain all over, muscle weakness, tired, can't do anything.

I've undergone so many tests and doctors are stumped and cant find anything. My lymphocytes are acting up and have been from a couple years after surgery. I was told I must have a sinus infection. Yeah that's never gone away.

So I started digging and found the implant was taken off the market. In the findings I found that people that had the implant removed. Also had wear and partials in the body. My doctor is leaning heavy on this being the cause of my issues for YEARS. What's worse is I've had MRIs but because of the implant they can never see whats going on.

I just got a doctor that says he will give me three different xrays that will show if something is wrong with the implant.

The rough part is, I can't find out how to get a particle test done. Now I know people with hip implants have the same materials so I thought I would try here.

Thanks for any bit of help! I truly feel time is not on my side here.

 

[Layla]

I'm sorry you're struggling and seeking resolution. I don't have any answers for you. However, I do have questions and your response may be helpful for others who will read your post.

Was your surgery in 2004?
Disc implant being in your spine?
What types of doctors have you seen? What type of tests have you undergone?
Obviously you're dealing with something other than a sinus infection. What's been ruled out?
The only particle test I'm familiar with is for Cholesterol, but I'm not a medical professional.
Are you meaning a Cobalt Blood Test or testing for Metallosis? I'm confused as to why your doctor is not able to order any blood tests your referencing.
I can tag the forum Nurse if you're interested....please let us know.
I hope you find the help you need so you're able to move forward without pain. Wishing you comfort in the interim.
@Bound

 

[Bound]

Yes disc implant in 2004. I complained of more pain after and was sent to pain management. Ive been tested for Lupus, stomach cat scans, brain scans, CBC tests over and over, and a TON more over the years. Heres a bit of info.
Im trying to post links but it wont let me.


The crappy part is I was one of the first. The worst part is life of the disc is 10-15 years they have found. Im on my 15th year. I was 24 when I had it done. I was sold on my age and the fact that the disc would allow me to live a better life because of the implant and the flex. Now they say that info was wrong because of the shelf life.

Polyrthylene test is what Im after as it affects the lympth system.

Theres not many of us out there with this implant so its hard to find others.

 

[Bound]

Normal and Abnormal Imaging Findings in Lumbar Total Disk Replacement: Devices and Complications
Ryan D. Murtagh, Robert M. Quencer, Dan S. Cohen, James J. Yue, Evelyn L. Sklar
Published Online:Jan 1 2009 https://doi.org/10.1148/rg.291075740

Device Wear and Particle Disease
Two of the four devices discussed in this article have metal-on-polyethylene interfaces. In both total hip and knee replacements, polyethylene wear debris has been shown to be biologically active, causing granulomatous disease with subsequent osteolysis and aseptic loosening (,28). Understandably, there is a great deal of concern that this may also occur in the spine; however, very little is known about device wear and the development of granulomatous reaction in TDR.

In an earlier study, van Ooij et al (,17) described a single case in which radiologic signs of wear were seen in a patient with a Charité prosthesis at the L4–5 level. The prosthesis had subsided into the L4 vertebra, producing extensive sclerosis and fragmentation of surrounding bone and causing cyst formation. In a more recent study, van Ooij et al (,29) performed a detailed histologic analysis of tissue specimens recovered at the removal of four Charité devices. The devices were removed because of complications that occurred 6.5–12.9 years after their implantation. Tissue specimens from all four patients contained polyethylene particles scattered among multinucleated giant cells. In one patient, radiographic and histologic evidence of osteolysis in the adjacent sacrum was found, with polyethylene particles seen in the region of osteolysis. Another patient was noted to have metallosis in the adjacent soft tissues, a condition thought to result from impingement of broken marker rings between the end plates. Most recently, Kurtz et al (,30) studied 21 Charité implants removed from 18 patients who underwent TDR revision surgery. Measurable wear was detected in all the polyethylene cores, and the pattern of wear was similar to the type of surface damage previously described in hip and knee replacements.

Currently, the extent and rate at which wear and osteolysis occur after TDR are unknown, but radiologists should be aware of these potential albeit infrequently documented complications. Continued radiologic follow-up, with pathologic analyses after the recovery of failed devices, may provide useful information regarding wear

 

[Layla]

Hi, thank you for clarifying and providing additional info. I'm tagging the forum Nurse @Josephine to see if she is able to advise you in any way. Since your situation is in relation to spinal surgery your thread will most likely be re-located within the forum once she touches base with you. She's in the UK and with the time difference she won't be on the forum this evening. Please check back tomorrow.
I hope you have a peaceful night.
@Bound

 

[Debru4]

Since you will soon be moved to another area, before you "left" I wanted to send you positive vibes and hope for some answers so you can get on with the life you want and deserve to live.

When I was needing back surgery about 10 years ago my surgeon said there were artificial disks and also products on the market that replaced fusion for those needing that. However, he cautioned me to avoid those until there were more longitudinal studies on their safety and efficacy.

Sadly, you are a poster child for that....at 24 I think you were probably a wonderful test candidate for them, as well as pretty vulnerable and eager to get relief.

Good news that there may be other X-rays and diagnostic tests you can have!

Are there any class action cases you could be a part of, given the trouble you are having? Sounds like another surgery might be in the cards for you given the age of the disk--at that time they will probably find the problems, but for you there may still be other issues to deal with. So sorry you have had that many years of pain and frustration.

 

[Clipper]

@Bound - Thanks for sharing and good luck. I wish I could offer a solution. Please keep us posted with your progress going forward. You're in our prayers.

 

[Carriemay60]

@Bound So sorry you are going through this and hope you find some answers and pain relief very soon. I agree with Debru about looking to see if there is a class action suit out there as I am sure this must have had some financial drain on you.
Wishing you all the best

 

[Jaycey]

@Bound Welcome to BoneSmart. As someone who deals with chronic spinal pain (also had surgery years ago) you have my sympathy.

I cant find out how to get a particle test done.

Many of our members have had allergy tests but these were for metal allergy. I'm going to tag @Jamie as she is in the US and may be able to research as company for you.

 

[Pumpkin]

@Bound
This lab in Colorado Springs does tests for many allergens and allergic reactions.
https://www.ccrlab.com/contact.html

This lab in Chicago has more of a metal allergy focus.
https://www.orthopedicanalysis.com/metal-sensitivity

Hope you find some answers, and are be able to move on with your life.

 

[Jamie]

The information from Pumpkln is excellent. Try either or both of those resources. You may have to pay out of pocket for the tests and they are not inexpensive. But hopefully some testing like this could help you get to the bottom of your problem.

Do you know what your disks were made of? The one post you made seems to suggest that both metal and plastic particles were possible from the implant.

 

[Bound]

Yes thanks for the links and well wishes. Looks like polyethylene and I don't know the metals. I'm having some films done next week so I hope they shed some light on what's going on.

 

[Jamie]

Good luck to you. Let us know how things go. You certainly have been through a lot and have challenges ahead. I don't know how much help we can be to you going forward, but if nothing else, we can provide some moral support.

 

[Layla]

Yes, I agree with Jamie. We're definitely here to support and encourage if you need us.
I hope you have a pleasant Sunday and a good week!
@Bound

 

[Jaycey]

Looks like Polyethylene and I dont know the metals.

I imagine if you told the company doing the test the name of your implants they would know what metals to test for.

Please do keep us updated and good luck to you! I am far to familiar with spinal issues and know what a maze all this can be.

 

[Josephine]

@Bound - earlier you left a cut/paste from a medical article but left no link to the original article which is a necessary thing to do. Can you give us the link? If not, I shall have to delete it as I cannot verify the source.

So I started digging and found the implant was taken off the market.

It would also help to know the name of the implant to which you refer.

 

[Bound]

It's saying I can't post a link. Let me try again
https://www.regenexx.com/blog/disc-replacement-side-effects/
https://pubs.rsna.org/doi/10.1148/rg.291075740

Implant name is Charité disk made by Johnson and Johnson and pulled off the market in 2012

 

[Josephine]

I've corrected your earlier post.