New member introduction ;-)

[aberge61]

Hi all, I was a very active mom, ER RN, horse enthusiast. I first injured my spine/pelvis at 14 yrs of age. I fractured my pelvis and my L5 vertebrae. Bed rest was it as I was still developing and surgery would possibly have made one leg short.

I have had too many to count whiplash injuries, two car accidents that were basically head on types from people pulling into my lane right in front of me. Both whiplash type injuries that I did not follow up on as I was much too eager to finish nursing school and work.

My last accident was in September of 2011. My cinch buckle broke and my horse was turning one way, I somehow ended up on my back coming too (was knocked out) underneath my 3yo gelding who thankfully froze in place.
At first, I could no it walk. I was taken to the ER and complained of head injury, neck and pelvic pain. When the plain Xrays came back they had tunnel vision when they saw my pelvis.
See, it healed poorly and on film is hard to read. The arthritis, bone spurs, pubic symphysis, So joints split so one side is higher than the other creating a mild scoliosis up my spine. My SI joints are awful. I left before I even realized they did not xray my neck.
I worked at the time in a Level 2 Trauma center and very busy inner city hospital ED.

I have always experienced pain in the SI joint and deferred injections, popped ALOT of NSAIDS and off I went.
I have suffered off and on from joint swelling in my left and right foot and my right shoulder.
A couple of times I have been unable to move my arm and had a fever with it.
It was always diagnosed as acute bursitis given cortisone injections and off I went. This started in my early teens.
I also have a mild case of Reynauds.

My arms began to have classic burning pain numbness and weakness the next day after falling. I was sent home and on my way stopped had an Xray then an MRI the next day. It showed a disc herniated into my spinal cord. I was seen by a neurologist the next day who said I needs the ADR pro disc. He "sold" it well promising a full recovery and return to work in 4 weeks at the most.

It is now February 2014. 2 1/2 years later and I'm still out. On disability and frustrated depressed and confused.
It was good the first two to three months when I started having muscle spasms, pain down my right arm that comes and goes, weakness and a a deep bone pain, ache that will no it stop.
I've never NOT worked. We are drowning.
I've been back to the surgeon, had xrays Cut myelogram, Another MRI and an EMG.
He just said, there's nothing wrong, you have arthritis, see a rheumatologist. All blood work for rheumatology workup, initial workup is normal. Now I know it CAN BE normal and you can still have the disease however...I feel like the disc Pro disc is wrong. It hurts all of the time..like I said, hammer to the bone and radiating pain.

The surgery was difficult according to the Dr. My bones were smaller than average. I went to a neurosurgeon but only saw the PA in a town over same county for a second opinion. My family Dr. Is CONVINCED it is the implant. He doesn't care they say it is great, right where it is supposed to be, he feels it is wrong and keeps throwing antiinflammatories and fentanyl, which I finally broke down and used when I developed a GI BLEED from overuse of NSAIds.
He says, its a failed disc surgery. He wants them to revise it to the fusion and auto graft.

He feels this way because in 05 I had a tubal ligation reaction to the metal, pain and migration of the clips. My OB removed them and I was fine.

Well after the fact I put it all together and the implant contains the same metal. The neurosurgeons think I'm crazy and this is not possible.
I don't know where to turn. I really need my life back. My dream job back, my health back.
So.,.I'm not a happy PRO DISC C customer.
Even as an RN who has been in healthcare for 14 years, I get nowhere. These surgeons I know from past experience do not throw each other under the bus so I figured a second opinion wouldn't turn out different.
I'm scared and feeling hopeless.
Everyone we know doesn't understand because I've never had any issues with surgeries, injuries or illnesses. Heck I had C diff 4 times! Subsequent rectal surgery for cancer...which was completely removed and chronic pain that never stopped me before.
I've never been down. I ran, was active in the community, my hospital and my horses, kids and farm.
Now I feel like a forgotten burden. Just an oih well, we did the surgery, tests all look great!

Well, good for the tests, why is this debilitating pain here. I also have clicking when I move or lie down. They say, its perfectly placed. The doctor did say during surgery my bones were so small they almost fused instead but literally had to beat the heck out of me to get it in, its the smallest size available.
They both say it isn't the problem. Really? I'm so confused. Sorry so long! Hope anyone who has advice, stories, help will comment!
Desperate for relief!!!
Last thing...I have an appointment with a surgeon from Cedars Sinai, one of the few here in Washington who does an SI Joint fusion and pelvis surgery. His philosophy based on what his assistant told me is that when your pelvis is asymmetrical your foundation has sunk so the rest of your spine suffers. He does the SI BONE fusion and other pelvic surgeries for past traumas etc. When I brought this up with my Neck surgeon and also with my 2Nd opinion PA they say it is not likely. In my mindnIm thinking how come? My pelvis is causing the mild scoliosis so why not? I'm in pain almost all day from that..the episodes of pain have come and gone for years but since the last fall they have come more frequent and with more intensity to the point of all day every day...so I wonder...but am told no.
I have an appointment next week with a pain management group, then this new SI joint neurosurgeon the following week...should I hold off on the pain management? I'm not increasing or taking more opiates...I hate being on the Fentanyl as it is. I may switch if they have some compelling new drug besides, percocet, vicodin, buprenorphine or methadone. I have reactions to all opiates and so far Fentanyl has been just OK. I'm on 25mcg patches. I can't do too much in NSAIDS because I ruined myself. I don't want another scary GI bleed!
I don't want to take ANYTHING. I want my pain relieved or at least tolerable again.
I have the discs of studies/films also. But, like I said, they say they're normal.
The implant size according to the surgeons doesn't matter if its in. Confusing and long, I know and apologize in advance.

[jss]

Amy,

Condolences on such a miserable story and on your continued pain.

Surgeons seem unwilling to admit a mistake. We've seen xrays posted here where malplacement of an implant was such that the error was evident even to our untrained eyes; the surgeon all the while claiming it was perfect. If all your current surgeon can do is look at the images and admire the immaculate nature of his work, then it's time for a review by another surgeon; you will get nowhere with this one.

Many on this board have undergone testing for metal allergies before accepting an ADR. From your story I'm left to wonder if you have such allergies. If so, it would seem that only having the ProDisc explanted will help. There are ceramic and carbon plates and screws that can be used for the subsequent fusion. They don't have to be aluminum, vanadium, cobalt, titanium and the other metals in the implant alloys.

If y'all do finally go the fusion route, whatever you do, DO NOT allow a fusion over the ProDisc. A number of posters here have had fusions with their ProDisc-C's left in place either by smearing BMP over the device or by posterior instrumentation; and the outcome is almost always very bad.

The size of the implant is extremely important; so much so that Synthes came out with new version of the ProDisc specifically for people with small bones. In correct sizing can cause subsidence, auto-fusion, spurring and even the locking of the joint into extreme hyper-extension. Do you know if you got the ProDisc Nova?

Good luck, Jeff

[aberge61]

I will have to request op reports. Funny, because I filled out a request for medical records and specifically said and underlined SURGICAL OPERATIVE NOTES, I got everything BUT those.
The second opinion PA said, there was no way I was allergic to the implant. My surgeon said the same.
I'm frustrated because my pain is very real and they are treating me like I'm malingering. First thing was, I will not prescribe narcotics. I said, I'm not looking for that. I do not want any prescriptions, I want answers.
They just say, there is absolutely no reason for you to have pain.
I hate it all. Do they really think I like living like this? My wages, my job all gone and reduced to social security with the judge saying I have to have a reveal for continued disability benefits at 2 years....so, I'm very desperate to get this done and behind me. We can't afford me not working.
Thank you for your reply, I will bring it up at my first appointment with the rheumatologiat they referred me to.
I only know it was a Pro disc C and the smallest size available in 2011.

[jss]

Amy,

From what you've shared it sounds like your surgeon is tired of you. I can can not quite imagine your frustration.

I don't know where you're geographically located, but the buddha head of all things ProDisc in the US is Jack Zigler at the Texas Back Institute in Plano, TX (suburban Dallas). He was one of the researchers during the IDE, was for years financially tied to the success of the ProDisc and is one of the very few surgeons that turns out a reliably steady stream of successful ProDisc implantations.

Best of luck, Jeff

[aberge61]

I get that feeling from him as well. Interesting because I have only been in the office a total of4 times and have seen him briefly pop in at the first, "lets get this surgery going" appointment and the others was always the PA. I had called to ask questions twice. Once was to request to see the actual surgeon....they acted like I was being unreasonable.

For the 2nd opinion I was only scheduled with the PA also...they don't schedule with the surgeon unless the PA says its surgical.

Yes, I'm frustrated. I used to work in orthopaedic surgery, total knees, hips....no spine and wealways had patients calling coming in over and over.
We never turned them away or treated them tthis way.
I don't feel I'm being unreasonable
If I were to have this expensive work done on my car I would get better care.

I get the feeling, but my husband keeps say in...your over thinking it...well he WAS saying that until, I had him come in WITH me.

They never did pistol films even...last year when I called to schedule and saw the PA. He said they usually don't.
Really? With total knees/hips we did pistol films, 2 weeks, 6 weeks, 6 months then yearly...more if the patient complained.
I wish he was still in practice! I lost touch when I went to nursing school.

I feel like if you have a complication that isn't blatantly obvious and the initial diagnostics aren't showing something they dontncare.
They did thenaurhgery, you should be fine, now get out of my office, your taking up my time.

I'm looking into Harbor view to see if anyone there may take me.
I wish they listened to their patients. We pay them...they forget that.
I asked about the metal sensitivity via phone message and got another no way.
I asked yesterday, "can we at least check?" Humor me please...lol she said, it just doesn't happen.
I've never been able to wear jewelry, piercings even the nickel free...I end up getting an red angry ear, finger, belly button.
Like I said My OB took titanium clips out and I was pain free after.

I wish I would've thought about that BEFORE. I had never put it all together for some reason.
I know pro disc is not metal on metal and cobalt chromium on poly....but why won't they check.

I hate calling and bothering anyone but I almost think I should be a squeeky wheel. But how would he treat me then? He already acts like I'm a waste of time.
I can't be the ONLY patient ever to have problems.

I hate the deep bone pain...its making me nuts. I'm a monster because of it. I just wish SOMEONE would listen and help....we pay them to do just that.ugh!

[jss]

Amy,

Dermatologists can check for metal allergies too. Perhaps you can have a dermatologist check you for the suspected allergies and then if it's positive, take that information to your surgeon?

Jeff

[aberge61]

Of all the people...a psychiatrist I was referred to for my depression as a result of all of this was able to order the test.

I guess the "patch" test has kind of gone by the way side....out of date due to a lot false positives and vice versa.

She checked into it and talked with her husband who is a surgeon. She has her MD and is also a naturopath with her psychiatrist MD....you get it, she's well versed in all sides. She was shocked none of the neurosurgeons would consider it. It may be false however due to my symptoms, rashes, headaches, bone pain @the implant site...its worth ruling out.

So she ordered the blood work and specific metal testing. I will have it done next week.
Will, keep posting!

I have a pain management appointment tomorrow, a CT repeat of my pelvis for the SI joint issues and an appointment on the 20th to see a specialist for that. He is most likeley going to repeat a lumbar MRI as well to make sure my lower back hasn't become another additional issue. (GodnI hope not!!)
Not sure how pain management will be, its the first time I've ever been.
Hoping for relief!!

I've also got a colonoscopy/biopsy scheduled on the 4th of march and seeing a rheumatologist two days later. Busy schedule!!

On top of this...the health exchange has "lost" a premium and I'm having to come up with 200dollars for next month until they find it. Its been so stressful!!!

[jss]

Amy,

From everything you've posted I believe that a metal allergy test is warranted, so congratulations on finally finding someone that will test you. A psychiatrist??? Go figure. At least you're getting the test!

Please update us on its results.

Good luck, Jeff

[Dema]

Dear Amy, I am so sorry about what you have been through, and understand your frustration with some in the health services. I have seen many spine specialist, and only few seemed to care and make you feel confident they will take care of you post surgery. I think you need to find one of the top spine surgeons who are willing to do revision surgeries even if they did not d the original ADR. Some ADR's are more difficult to replace with another ADR, and I think the Pro-Disc is one of those! If so, and the new surgeon confirms your pain symptoms is due to the ADR, the only option might be to remove it and do a fusion at that level (C5-C6).
Not sure where you're located, and my apology if I missed it, on the East coast I liked Dr. Alexander Vaccaro (Philadelphia, PA) and in California Dr. Carl Lauryssen (Los Angeles, CA). I am leaning toward Dr. Lauryssen, because he uses the M6 for ADR, but will have to go overseas for it, it is not FDA approved. Depending on your location, others here will be able to recommend good surgeons closer to you.
Wishing you find a good doctor to help you address your pain and find relief soon.
Dema

[aberge61]

Yes, agree
I live on the west coast in Washington State.
Its more than frustrating for me especially since I have worked in the field for so long. My OB said the other day, ",y wife saw...so and so and he found a deformed vertebra and fixed it immediately."
I remember those patients that were doctors, wives of doctors and such...the whispers..."that's doctor so and so or doctor so and so's wife so make sure you do your best."
They get special treatment, bumped ahead of other patients...not RNs!!!
Its interesting reflecting as a patient now. I worked since 1994 in healthcare...no "special treatment"
Everyone should get the same special treatment but its not how it works!!!
I will see about the results of my metal allergy testing.
I had a phone call from my PCP, they had a prelim fax on a CT then an MRI and it was pretty abnormal..though she wouldn't share over the phone just wanted to ,make sure I kept my appointment with the surgeon...oh, great!!!! Now WHAT?!