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  #1  
Old 10-19-2012, 03:55 PM
5kidmom 5kidmom is offline
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Join Date: Oct 2012
Posts: 10
Default I just want my life back

Hello all!

I am 39 year old law enforcement officer and have been for 17 years. My "injury" is on the job due to a culmination of job duties. I have been dealing with this since April of 2011 trying to get a resolution. I've tried all conservative treatment - some of them twice. Nothing gave me any relief and then in March of this year the pain got increasingly worse. I've been off work and have seen received four opinions on the matter of my back pain. All agree that surgery is the only thing that would help.

The first (a work comp doctor) said he wouldn't recommend surgery. He never said what type of surgery, but said that surgery would only give me a 50% chance of feeling better and a 10% chance of making it worse.

The second said a fusion was needed at LS1 and that it should be done sooner than later. Since my MRI was a year old, he ordered new one before he gave an opinion on what should be done about L45. I got the MRI but didn't go back to see him for the reasons that follow.

By this point worker's comp was increasingly difficult to deal with so I retained an attorney specializing in worker's comp. She sent me to yet another doctor who was able to see ALL of my films, all very current. He showed me the MRI from July 2011 and the new one from August 2012. The difference in the L45 disc was obvious to me and I have no medical training. To me this explained my increase in pain and decrease in function. This doctor recommended a fusion at L5S1 and a ADR with a Prodisc at L45. After he explained everything to me, I was all for it. I had already done some research on ADR so I understood what he was telling me and I agreed.

Worker's comp approved all of this doctor's request except the ADR. They want to leave the L45 disc alone to see if a fusion at L5S1 alone will work. I decided that isn't good enough so I am now fighting for the ADR.

I saw a state "second opinion" doctor yesterday who wasn't sure I needed surgery at all. I told him surgery was already approved and that I was seeing him only to determine the ADR. He NEVER looked at my films - he only read the reports and said he didn't see anything on the report that he thought needed surgery. I again told him that it has already been determined that I did need surgery but that it was the ADR that was in question. He told me that ADR only have a 40% success rate and that "really bad things have happened." He said that the ADR has "popped out through the front."

I went on about a 10 minutes rant about all the studies I have read, what two doctors have told me, the research I have done, and why I believe it is right for me. I think I caught him off guard because he looked a little (a lot) uncomfortable and said, "Fine. I'll approve it, but remember my words."

I don't know if he said that just to get me out of his office or if he really is going to write a report saying I should have an ADR. I will find out soon I hope. In the meantime, I have an appointment next week with an Agreed Medical Examiner and I'm hoping that goes a little better and he at least looks at my films.

I'm glad I found this forum as I really feel depressed at the state that I am in.
I have small kids, and a job I have to spend another 13 years doing. I am (was) very active and am so limited in activity at this point I don't know what to do. I went from running, spinning, lifting weights, swimming, and hiking to being able to walk about two blocks before my leg is numb and my back and hip are on fire. I have always prided myself of being strong and self reliant, and now I feel so weak and needy.

Anyway, I'm glad I found you all....I feel better already.

C.
__________________
Candice, 39, LEO
Injury from culmination of work duties.
First reported on 4/14/11

L5S1 - severe disc herniation, bone on bone, spurring, annular fissuring, stenosis, degenerative disc disease.

L45 - mild disc herniation, decrease in disc height, stenosis, beginning degeneration.

Proposed:
ADR at L45
Anterior Lumbar Interbody Fusion at L5S1
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  #2  
Old 10-19-2012, 08:03 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,011
Smile Welcome

C., welcome to our online family. Boy, you've done well for yourself in a what appears to be a short amount of time (compared to others here). Question: did you get a copy of the most recent imaging studies -- including the radiologist report? What does the radiologist's report say about your lumbar spine and DDD?

It sounds like you are doing all the right things, good luck with your next appointment!
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #3  
Old 10-19-2012, 11:11 PM
5kidmom 5kidmom is offline
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Join Date: Oct 2012
Posts: 10
Default

I have a copy of all of my films, but not the radiologists reports. I couldn't say off the top of my head what they said. I have to admit that my record keeping in the beginning wasn't the best because I really thought it was something that rest and conservative treatment would help.

By the time I retained an attorney I realized that I was going to have to step up my game I really started asking for and getting copies of everything and taking lots of notes. I also wrote a timeline of everything that I have gone through, with doctor appointments, how I felt, my pain levels, what activities I could do (or not) all with dates to the best of my recollection. I take that timeline with me everywhere so I can ensure I don't miss anything when I go over my history. That timeline is up to six pages. I don't give it to anyone, I just use it for my own reference when I'm speaking to whomever.

I also touch base with my attorney almost every day so that she understands how involved I am in my own care and so I can get the best service possible. I have a union rep that went through a fusion and he has been maintaining contact with me and making phone calls when necessary. I've got a lot of good people on my side.

Thanks for the kind words, I know that I am my own best advocate and I think one of the best things you can do is to stay informed, ask questions, research, and push back when necessary. My surgeon was shocked at my response when he asked me to explain what I was proposing to have have done and why. He said he hasn't had a patient with such an excellent understanding and ability to articulate it. I'm a fighter and they way I see it, I'm fighting for my quality of life. I was so happy to have found you all....I can find reports, studies, and journals online, but it's great to talk to people who have actually gone through it. Thank you so much!
__________________
Candice, 39, LEO
Injury from culmination of work duties.
First reported on 4/14/11

L5S1 - severe disc herniation, bone on bone, spurring, annular fissuring, stenosis, degenerative disc disease.

L45 - mild disc herniation, decrease in disc height, stenosis, beginning degeneration.

Proposed:
ADR at L45
Anterior Lumbar Interbody Fusion at L5S1
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  #4  
Old 10-19-2012, 11:15 PM
5kidmom 5kidmom is offline
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Join Date: Oct 2012
Posts: 10
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Oh, and because I'm still learning all the lingo and acronyms, what is a DDD?
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Candice, 39, LEO
Injury from culmination of work duties.
First reported on 4/14/11

L5S1 - severe disc herniation, bone on bone, spurring, annular fissuring, stenosis, degenerative disc disease.

L45 - mild disc herniation, decrease in disc height, stenosis, beginning degeneration.

Proposed:
ADR at L45
Anterior Lumbar Interbody Fusion at L5S1
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  #5  
Old 10-20-2012, 01:50 AM
JEVE19 JEVE19 is offline
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Join Date: Feb 2006
Posts: 359
Default

DDD means degenerative disc disease which many of us have been diagnosed with.
Maybe consider a consult with an overseas doctor.
Many members have done this.
It does cost some money. Not sure what the current rate is but I spent $400 last year. Was the best money I ever spent.
I had my L5-S1 replaced with an M6 in England.
I think you need to consider that there are many discs out there. The US doctors can only recommend what is FDA approved in the US. Doesn't make it the best disc though.
Overseas docs have more experience with different discs and can explain why they choose the disc they use. A consult with one or two of them would give you the knowledge you are hunting for and help with your decision.
Read through the surgical outcome section and see how people are doing with the brand of disc they have.
You are doing the right thing by reading and educating yourself.
Hang in there. It feels hopeless sometimes but it can get better.
If you have lumbar issues, then look through the surgical outcome section for other lumbar patients.
Good luck to you.
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L5-S1 Lumbar M6 by Nick Boeree
10-14-2011
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  #6  
Old 10-20-2012, 03:15 AM
5kidmom 5kidmom is offline
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Join Date: Oct 2012
Posts: 10
Default

Thanks so much for your input. Overseas is just not a viable option for me...I wish it was. It's amazing to me that Americans think we are the best of everything when I find European medicine to be so far ahead. I have to make do with the best I can find here.
__________________
Candice, 39, LEO
Injury from culmination of work duties.
First reported on 4/14/11

L5S1 - severe disc herniation, bone on bone, spurring, annular fissuring, stenosis, degenerative disc disease.

L45 - mild disc herniation, decrease in disc height, stenosis, beginning degeneration.

Proposed:
ADR at L45
Anterior Lumbar Interbody Fusion at L5S1
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  #7  
Old 10-20-2012, 03:54 AM
JEVE19 JEVE19 is offline
Senior Member
 
Join Date: Feb 2006
Posts: 359
Default

The consult wouldn't mean you'd have to go overseas.
It would be an opinion from a doctor who has no FDA restrictions. You send them your MRI, xrays, etc and they can give you an opinion based on much more experience.
My doctor back when this first started, only had 12 ADR'S for his experience. That was scary. Other countries are so far ahead of us and have done hundreds of these surgeries already. It's the first time I felt like I should move to another country.
If I ever need another back surgery, I would never have it done here. Remember, it is their "business". They need to be good salesman to keep your money from walking out that door.
Surgery is where they make their living.
If your doctor has no experience with ADR, then he will push fusion. If he mostly has experience with Prodisc, then that's what he'll push. It's business. We want them to have our best interest at heart but it doesn't always work that way.
If it did, we wouldn't all be on this forum.
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L5-S1 Lumbar M6 by Nick Boeree
10-14-2011
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  #8  
Old 10-20-2012, 10:08 AM
2Confused 2Confused is offline
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Join Date: Jun 2011
Posts: 322
Default

Skid,

I agree with Vickie, the consultation wit an overseas doctor may ease your concern about accurate diagnosis. after consulting with my doctors here I consulted with a couple overseas before making my decision. It was reassuring to have multiple opinions & even more so when they were all in agreement with the diagnosis & treatment. My surgery is on Oct. 24.
Hang in there!
__________________
50 year old female
Rear-Ended in 2009
Disk rupture cervical 5-6 & 6-7
2 level M6 ADR, Dr. Clavel - Oct. 2012
Insurance paid
Not a day goes by that without me whispering a silent "thank you" to Dr. Clavel
Post Op 2+ years
Cross Fit 3-5 times a week
Running 5ks
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  #9  
Old 10-20-2012, 04:11 PM
M.Frost M.Frost is offline
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Join Date: Apr 2012
Posts: 31
Default

Hi
Really sorry to read about your situation, just to add on to the last two post, if you wanted to contact a Dr in the UK I couldn’t recommend Mr Chris Dare more highly. I had total confidence from the very first consultation with him.

Here are his contact details.

Karen.hammond at nuffieldhealth.com

Phone: 02380 258432
__________________
Consultant Mr Chris Dare Southampton UK
August 2010 Caudal epidural
May 2011 Caudal epidural
November 2011 L5/S1 Disc replaced with M6

Last edited by Harrison; 10-20-2012 at 06:35 PM. Reason: edited email to prevent the spambots from hell spamming karen
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  #10  
Old 10-20-2012, 05:11 PM
Jstuckey's Avatar
Jstuckey Jstuckey is offline
Senior Member
 
Join Date: Nov 2010
Posts: 305
Default

5kids (wow!) I agree with all of the above. Just want to add, I did consult with 5 surgeons and got 5 different recommendations ranging from a 3 level fusion to 3 level ADR. That was a little tough for me to be the one to decide. I ended up with a hybrid procedure, but went with the surgeon that seemed most interested in really knowing my specific situation, his experience, a good track record and reputation, good track record on the products themselves, and that what he proposed made sense to me. It's very much the quality of the products, but also very much the skill of the person "installing" them. It's a one time shot at getting it right. Tough decision. We've all been there. I spent a year picking people's brains on this forum and would never have come up with the plan I did without all the help. Money wise, I never thought it would be an option either, but was blessed to get a loan from my parents. I'm now making "back payments" instead of car payments. Just don't cut any of your options out. You may be surprised what life brings your way.
__________________
Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
http://healthyback2011.blogspot.com/
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