Pain Management Forever (Rough Diagnosis)

[dustman]

My name is Dustin. I had ProDisc C implant on July 6, 2010 in Baltimore at GBMC Hospital in Towson, Maryland. I reached out to my primary doctor because I knew something was wrong. My left arm was very weak and my shoulder was aching and I had numbness in my left hand and forearm. I met with Dr. Rami at GBMC on July 1, 2010 in the afternoon. He said that I have a single ruptured disc at C5-C6. July 1 was on Thursday...he rushed me into surgery. Friday, i did my pre-ops and Monday was a holiday. Tuesday morning the 6th I was in the hospital getting the ProDisc cut into my Neck.

The pain in my shoulder went away and the numbness was gone too (when I woke). Things seemed to be going well and by the end of August, the pain returned! The numbness returned. I had MRI 9/27/2010 it showed a bulge at the C5C6 site pushing on my cord. In October I had an X-Ray which showed issues at C5/C6. December 1, 2010 I had an ENG which showed issues at the cervical surgical level.

Was referred to Johns Hopkins Neurosurgery. Dr. W at Hopkins took one look at my tests and just shook his head in disbelief. He was shocked that Dr. Rami would have put the ProDisc into my neck at all. He explained that with only a single diseased level at C5/C6 a fusion works 98% of the time. He explained that Hopkins does not even utilize ProDisc or any other prostehetic. Dr. W. said that Dr. Rami made an extra several grand by putting the Prodisc into my neck instead of doing the simple fusion. Also Dr. W. was shocked that Dr. Rami had not done or tried a few non-invasive techniques first for several months before residing to surgery of any kind (much less Prosthetic replacement).

Dr. W. said that I should attempt to get a fusion (Posterior) to fuse over the ProDisc to solidify the level. He explained that it was only a 50-60% chance of success. It cost me a pretty penny, but I decided that it was worth a try. When I awoke from this surgery on July 1, 2011...I was in terrible pain. The posterior procedure was dire painful. After several weeks, I was aware that the pain that I had endured the past year was still evident and that the fusion did not work.

So here I am everyday still suffering from this ProDisc everyday and every night. I am working two jobs trying to move on, but I have lost 40lbs of muscle and my life is effected so terribly. My quality of life has been extremely compromised and these 17 months have been hell and it feels like 117 months.

The attached MRI's are from three days ago (the 12th of December, 2011). Both my doctor and surgeon are saying "LIFE OF PAIN MANAGMENT." This is all they can do for me. Dr. Rami the initial surgeon stopped returning my calls in September of 2010. So, basically I am just getting help from my Kaiser primary and I have no where to turn. I tell my story as much as possible. I tell people to avoid the prodisc at all costs and only take that chance as a last minute option.

Ok, enough rambling...if anyone has any questions feel free to ask and let me know what you think about the MRI photos attached. Look forward to meeting all of you!

Dusty

[Justin]

Hi Dusty,

Welcome to the Spine Patient Society.

We are here to support you. I'm sorry you have been dealing with so much pain. In regard to the ProDisc: many Spine Patients have done well with the ProDisc. Of course, (and unfortunately ) there are patients that do not have favorable outcomes like yourself. This is true with any invasive spine surgery including fusion of the spine.

With that said, there are some institutions that do not implant artificial discs at this time (I believe the Mayo Clinic is one). A lot of times in medicine, "unfamiliar" with a procedure or technology and / or one that is not utilized can be commonly thrown into the "that doesn't work box." Thus, older, well-studied, gold standard procedures (e.g. spinal fusion) are usually supported as "this is the way we do things around here" and that new technology is dangerous / crazy / inappropriate / purely for profit / etc. etc.

Conservative care should be exhausted before any invasive procedure (this is my personal opinion and many medical professionals also feel the same). Chronic spine pain in the absence of progressive neurological deficit is not (IS NOT) an indication for invasive spine surgery and is of uncertain benefit.

Unfortunately, fusing over a ProDisc can still cause pain as there can be "micro-motion" of the ProDisc, which can possibly destabilize the fusion eventually causing nonunion.

I'm sorry that you have "fallen through the cracks" with some of your providers--no one should be abandoned (I don't mean to slight any physician / surgeon mentioned above--this is a general comment and a personal opinion).

Your MRI is difficult to read due to the "sun bursting" of your ProDisc distorting the images. I do hope you are finding some relief with your pain management.

Please keep us posted on your progress. Again, we are here to support you. If you need anything, don't hesitate to contact me.

[Genn]

Hi Dusty!

Thank you for sharing your situation and I'm sorry to hear where you are currently at.

My situation was the other way around. I've also been told by a few that I would be on PM forever and would not operate. I've also been abandoned by a Dr. and handed my films when a test they ordered set me back a bit- Although, it was not nearly as serious. It was then, that I learned the entire team- from Office staff to Surgeon was extremely important to me~ should complications occur in the future. "The only thing that kept me going.. Never Give Up!

It could be tomorrow, next month, or years from now.. But, I hope you find the proper doctor with the experience that can help you manage the pain correctly while you explore different opinions/options. From what I've read, revision ops are very risky. Only you can make that decision- it can help to have a surgeon with that kind of (revision) experience to tell you-truthfully- what options are left- and, you trust with your life.

What are you doing Pain Management wise?

[dustman]

Thank you Genn. I am also sorry to hear about your situation. I am happy to hear that your doc's are fearful of operating and creating a situation that could possibly worsen your symptoms! My intial surgeon saw those dollar signs and rushed me into expanding his bank account. Feel happy that you were not pushed/rushed into any operation.

Thank you again Genn. I am unforunately allergic to everything but Oxycodone and I just found (THe Rough Way) Sudafed. But to take Sudafed safely, I must take in conjuction one 10mg pill of zyrtec. Other than that, I am allergic to everything from one aspirin to alleve to ibuprofen. Any salicylic acid product even (pepto bismal or carmex(lip gloss)) causes intense hives and possible hospitalization.

My pain management is only Oxycodone. I take 5mg pills and I refuse to accept any other strength. I am so screwed relative to what I can take. I have never taken more than 30mg per day (6 pills) and and those six pills will be my max. It is hard sometimes, but I understand and must keep to the fact that my main focus in pain control. It is much easier when you are truly suffering.


I wish you the best luck hunny and thanks for reaching out to me and my post. Feel free to call me via cell 443-462-0655. I would love to chat more with you and learn more about your situation and our similarities. Thanks again Genn.

Dusty

[Genn]

Hi Dusty

..My intial surgeon saw those dollar signs and rushed me into expanding his bank account. Feel happy that you were not pushed/rushed into any operation.

I'm sorry to hear you were rushed so quickly into surgery. As Justin mentioned above, it is very important to exhaust all conservative measures before rushing into a Major surgery. But, it is impossible to know that w/o prior experience and the first surgeon you see has you in the OR in a matter of days for an elective/ non-life threatening surgery! I stayed under the care of a NS that did nothing for entirely too long and now- I'm running out of options. It sure is a fine line to walk, so to speak.
I had a similar situation occur w/r/t 'rushing for the $$'- with my heart, due to an abnormal EKG (print-out!) on a Thursday. ECO and Nuclear stress test on Friday, then ready for the Cath lab at 6:30am on Monday for an angio. I never did get another cardiologist to agree with what he did. Nothing was wrong!! It did however, pull me off the surgery schedule for a 2 lvl TLIF, as it was part of my pre-op for the surgery. Blessing in disguise?? maybe...

I am unforunately allergic to everything but Oxycodone and I just found (THe Rough Way) Sudafed. But to take Sudafed safely, I must take in conjuction one 10mg pill of zyrtec. Other than that, I am allergic to everything from one aspirin to alleve to ibuprofen. Any salicylic acid product even (pepto bismal or carmex(lip gloss)) causes intense hives and possible hospitalization.My pain management is only Oxycodone. I take 5mg pills and I refuse to accept any other strength. I am so screwed relative to what I can take. I have never taken more than 30mg per day (6 pills) and and those six pills will be my max. It is hard sometimes, but I understand and must keep to the fact that my main focus in pain control. It is much easier when you are truly suffering.

It is great that you know what works/doesn't work for you. Keeping the pain under control will help, in more ways than one, with the time needed to figure out and decide what/if any, the next step is.

Please keep in mind what Justin stated above. I'll blurt it out in a different way...

You had an ADR implanted and then you were referred to a Hospital that doesn't do ADR! Off course they wouldn't have done that! That 'advice' doesn't do you much good in helping your current situation . I would try to get more consults with very experienced ADR surgeons and go from there. I don't know your history, whether or not you were a good candidate for ADR or, if the surgeon disregarded any contradictions. Placement of device during implantation is extremely important. However, I would personally want an ADR surgeon to review Xrays, placement, possible movement, etc. Maybe give you an idea of what is causing so much pain..

I wish you the best luck hunny and thanks for reaching out to me and my post. Feel free to call me via cell (Edited out for Privacy! ). I would love to chat more with you and learn more about your situation and our similarities. Thanks again Genn.

Thank you, too~ Dusty! It isn't easy being the one in charge of your medical treatment when we're not doctors (with a few exceptions on this site.. Justin?? can you hear me talkin' about you?! )

Even so, It is hard and near impossible to get them to All to agree on one way to proceed! Keep collecting those 'opinions' and hopefully you can find a commonality among them. Talk soon!