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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 12-23-2008, 03:47 PM
treefrog treefrog is offline
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Default Hello

Time to introduce myself. My name is Cathy, and I live in North Carolina.

I have been having back problems for many years, though for about 12-15 years they were intermittent. It first started when I was shoveling snow. But I think that was just a catalyst. I think my DDD is genetic, as both my mother and sister have lower back problems as well. I would have pain that would come and last for a few weeks or months, but then would go away again. But back in Nov/Dec of 2006 I started having pain, and it hasn't gone away. Around July of 2007 was when I realized that the pain was not going away and decided to see a doctor.

I first went to an orthopedic surgeon, whom I had previously seen for some knee pains. With the knee pains, he did x-rays, and then sent me to PT. The PT did help with the knee pains. This time he also did x-rays and sent me to PT. And he prescribed some oral steroids. Well a month went by and the PT was not helping my pain, and in fact if I did more than the stretching exercises it would lead to greater pain. He then sent me to a PM doctor who specialized in chronic pain. She is fantastic, Dr. Zimmerman at Triangle Orthopedics. I am still seeing her.

Dr. Zimmerman ordered an MRI, which I was finally able to get done in Dec. of 2007. It showed mild DDD in L4/L5 and L5/S1, a little bit of bulging, though no nerve impingement, and arthritis. So, I started on gabapentin and relafen, and had an ESI. I had very minimal relief from the ESI, and it only lasted for about a week. My pain level back then was around a 2-3 going up to a 4 if I over did it.

My pain is mainly on the right side of my lower back, goes into my right hip, and down into the front of my thigh. I sometimes have pain on the left side of my back, and occasional pain going into my butt, on both sides.

Dr. Zimmerman is a doctor who believes that spreading the ESI's out over a year is the way to go, so I didn't have another one for several months. In the meantime my pain was becoming worse, on average about a 4. Over and extended period of time I tried different pain medications, trying to find one that helped with the pain, but didn't make me sick. I ended up taking percocet, which helped to bring the pain down to about a 3, on average.

The next ESI also gave me very little relief and lasted only a short amount of time. She suggested that I might want to give acupuncture a try. So, I spent this past summer having weekly acupuncture treatments, 15 in all. They did not help.

I also had a facet steroid injection, which gave me a little bit of pain relief, enough for her to try a facet block. The facet block did nothing. So, it was back to try another ESI. This one did give me a good amount of pain relief, but it still only lasted about a week. Incidentally, I had my very last acupuncture treatment the night before having the ESI. I don't know if that had anything to do with the results or not. I also switched from relafen to mobic (meloxicam). And my pain was not really being controlled with the percocet, so my doctor switched me to Opana-ER. This did bring my pain down, though it was not gone entirely.

On Dec 3rd, 2008, I had a discogram. This confirmed that the discs at L4/L5 and L5/S1 were the pain generators. And I set an appointment to talk with a surgeon.

The discogram has led to increased pain, which did not go away after the few days that are normal. It was weird, I would seem to be getting better and then all of a sudden it was worse. Much, much worse. I had excruciating pain going down my right leg, into the thigh and then the knee. It felt like I had hot pokers being jabbed into my knee. I could hardly walk, it was painful all the time. Dr. Zimmerman increased the dose of the Opana and has me on a course of prednisolone. That pain is still there, though it is not as severe. But every morning when I get out of bed, I feel a stinging and burning pain that runs down toward the inside of my thigh to my knee. I almost always have pain in my knee now, but I am able to walk, drive and work again.

The surgeon, Dr. Musante, said that he recommends either a two level fusion, or a hybrid surgery with a Prodisc-L at L4/L5 and fusion at L5/S1. So now I am trying to decide which surgery to have, and how long to wait before having surgery.

With Opana-ER 20mg 2xday, my pain is very manageable, as long as I don't do much. I don't feel like I have a life anymore. My work is extremely limited, I work in an academic research lab and I am confined to doing computer work, lab management, and cannot do experiments. At home I only do the bare minimum as far as housework goes. I can't remember the last time I vacuumed.

I look forward to participating with this group.
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  #2  
Old 12-23-2008, 06:24 PM
trucklt trucklt is offline
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Default Living with back pain

Hi,

I live in Henderson County, NC and have been putting up with back pain from DDD at L4/L5 for over 10 years. Like you, I've tried an failed every conservative treatment, some more than once.

At this point, it seems that you've done every non-surgical treatment and are looking for some type of permanent pain relief. This forum is the place to find some answers. If I were you, I'd check Arthroplasty Central for KBear's thread on the results of ADR. A lot of claims were made for ADR which still haven't been proven conslusively such as reduced incidence of facet and adjacent disc degeneration problems. There are links to a number of studies on that thread which may help you make a decision on what to do.

I'm looking at either a one-level fusion or ADR in the Active-L clinical trial at Carolina Neurosurgey and Spine in Charlotte. I've heard that you want a surgeon who has done at least 20 to 40 ADR's before letting him put one in you. Also, do you know what your insurance company's policy is on ADR? I was turned down in 2005 by United Healthcare for ADR. From that experience and getting burned on the bill for an IDET, I'd get the approval in writing before going for an ADR.

Fusion at two levels would certainly reduce your range of motion. The hybrid option sounds interesting, but I don't know if there are any studies out there that have looked at the functioning of an artificial disc in proximity to a fusion. There are some studies out there that are saying that the incidence of adjacent disc degeneration after fusion has been over emphasized and may not be a problem for 10 to 15 years after fusion. Your age, general health, and activity level are certainly considerations in choice of treatment.

I've had 2 discograms and didn't have the problems that you are experiencing. I wonder if the radiologist hit or inflamed a nerve or other tissues on his way into the discs. I hope that you can get some significant relief with medications until things calm down back there.

I know what you're going through and myself or anyone on this forum would be happy to give you as much support and information as possible.
__________________
Diagnosed with L4/L5 DDD 1998 after lifting injury.
10 years of failed P.T., Chiropractic, Acupuncture, injections.
Turned down for ADR in 2005 by United Healthcare
Living on Ultracet and Vicodin ES and only working part-time
Disqualified from Active-L trial due to low bone density in spine
ALIF 02/10/09
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  #3  
Old 12-23-2008, 06:36 PM
treefrog treefrog is offline
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Default

Thanks truckit. I am not a NC native, so I don't exactly know where Henderson county is, but since you say you are in Western NC, then I will assume it is in the mountains.

To answer a few of your questions.

I am 46 yrs. old, and in pretty good health otherwise.

The surgeon wants to use the Prodisc-L. He has also done Charite, but he said he would use Prodisc.

My insurance company will not pay for ADR, so I would have to pay for the disc and that part of the surgery myself. My insurance would pay for the fusion, the anesthesia and all the other costs. He said that my cost would be ~$8000.00 for the ADR, and then my co-pay for the fusion.

My surgeon said that he has done 6-10 ADR, and 20-30 2 level fusions (but now I am going to have to verify if that was in a year or total). He is calling another of his patients, who had this hybrid surgery, to see if I can talk with her. I think this would be great, if I can talk with someone who had the same surgery I'm considering, by the same surgeon.
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  #4  
Old 12-25-2008, 03:10 PM
trucklt trucklt is offline
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Question Options

I like the idea of contacting other ADR patients of a dr. I have to go to Charlotte on 01/02 to see my surgeon and I think I'll ask him to put me in touch with some of his Charite patients. I would hope that our dr's would not just selectively put us in touch with patients with only good outcomes.

If you work in the research field, you might have access to medline which is a good data-base. www.pubmedcentral.nih.gov is also a good resource and is accessible to everyone. I would also check the "ADR Surgical Outcomes" forum and post on "Arthroplasty Central." There has to be patients on this forum who have has the ADR/fusion hybrid.

Frankly, a lot of the information out there is confusing and contradictory. With your research background, you are probably better equipped than most to cut through some of the smoke and decide what will give you the best long-term result. ADR has looked very good in some long-term European studies, but has been attracting some vey negative reviews now that it has become available in the U.S.

Insurance! Check the "Insurance Hell" forum for tips on dealing with insurance companies. Also, check the Prodisc web site. Most ADR manufacturers have information on getting insurance approval and have representatives to help with the process. Even if you get the ADR at your expense, you can appeal and possibly be reimbursed later.

I'll pass along any information that I find and keep us all posted on your progress.
__________________
Diagnosed with L4/L5 DDD 1998 after lifting injury.
10 years of failed P.T., Chiropractic, Acupuncture, injections.
Turned down for ADR in 2005 by United Healthcare
Living on Ultracet and Vicodin ES and only working part-time
Disqualified from Active-L trial due to low bone density in spine
ALIF 02/10/09
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  #5  
Old 12-31-2008, 03:06 PM
treefrog treefrog is offline
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Join Date: Dec 2008
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Default

Yes, I have been looking for information on disc replacement surgery, but like you said, a lot of the information is contradictory. And there isn't a lot of conclusive data.

Since I have been taking 20mg of Opana-ER, my pain has been very manageable. Tomorrow morning I will try taking only 10mg, as my doctor said I could try at times. I have been hesitant to try that, what with having to go to work. And the last time I did, it took several days to get the pain back under control. But that was back when I first went to taking 20mg. Since I have 4 days off of work, I think it is time to try it again. That way, if my pain comes back I will have time to get it back under control. Also, I see my PM doc again on Jan 9th, so this will be a good experiment, to see where my pain level is now. And I am done with the steroid course, and back on meloxicam (Mobic).

Truckit, good luck on Friday, meeting with the surgeon. How long of a drive is it to Charlotte for you?
__________________
Cathy
MRI 12/07
L4-5 Mild-moderate disc degeneration with dessication.
L5-S1 Mild disc degeneration with dessication, minimal disc bulging.

PT/medication/acupuncture/ESI's/facet injection

Discogram 12/3/08 confirmed L4/L5 & L5/S1 as pain generators.
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  #6  
Old 12-31-2008, 10:22 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Default The latest....

Cathy, welcome to the forum! Any more ideas or news from Dr. Musante? For what it is worth, many folks on this forum have had hybrids -- at the same level that you are facing.

This is a huge decision. I encourage you to sift through as many topics as you can (there's a lot), and reach out to people via email and private message. Let me know if you need help! Just email...

Happy New Year! Peace and good health to you in 2009!

__________________
"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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  #7  
Old 01-01-2009, 02:10 AM
keziah23's Avatar
keziah23 keziah23 is offline
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Join Date: Oct 2008
Posts: 104
Default

Hi to both of you. I live in St. Louis, MO now but am a native of Western NC (almost as western as you can get). My mom, who still lives in NC is also a spiney and has a great doctor in Asheville. Not sure if he does ADR's or not but he is great, he took a tumor out of her spine in 1998 and she has been going to him ever since, even though its a 2 hour drive. His name is Dr. Eric Roton, he's at Mountain Neurological
best of luck to the both of you.
__________________
Timeline:
1988:sprained neck roller skating
1989:dislocated neck in a freak accident
1993:MVA
1995:diagnosed with bulging disc C5/6
2000:disk herniated
2000-2004:multiple treatments including nerve root block, trigger point injections, epidural steroid injections, pt
2005-2008: pain meds and muscle relaxers only
ProDisc-C replacement on c5/c6 11/18/08
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  #8  
Old 01-01-2009, 02:39 PM
treefrog treefrog is offline
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Join Date: Dec 2008
Posts: 65
Default

Thanks Harrison and keziah.

I have not talked with Dr. Musante since the last time. Now that the holidays are winding down, I will get my new list of questions and call him again.

Yesterday my friend/co-worker wrote an email to a neurosurgeon at Duke (where we work) whom he knows, to ask about getting a second opinion. He gave him the basics of my case. So, maybe next week when I return to work, I will have the possibility of talking with another surgeon.

This really is a hard decision. When I am feeling good, I think I should wait as long as possible before having surgery. But then when I am in pain I think I want to have surgery as soon as possible.

Next Friday I see my PM doc again. I am going to ask her opinion, about the dose of Opana-ER that I am on, and whether she thinks I would be better off having it done sooner. I believe the last time I saw her (though I was in a lot of pain at the time, so my memory may not be accurate) that she said it was a pretty high dose. What that tells me is that it might be better not to put surgery off for too long, as I don't want my pain to get to a point of not being in control again.

Surgery is very scary, and on top of that the possibility of losing my job if I can't come back to work within a certain period of time. Even though right now I am only doing administrative work, most of which I could do from home. But by July, one of the guys is probably going to be leaving for med school, and I will be needed for the work that he is currently doing.

Financially my boyfriend and I were hoping to hold off until April. But that would only give me 2-3 months, depending on when in April, of recovery. From what I have read, even 3 months may not be enough time.

I haven't read a lot of the ADR stories yet, but I have started reading some of them. Are there any particular ones of hybrid surgeries that someone could recommend?
__________________
Cathy
MRI 12/07
L4-5 Mild-moderate disc degeneration with dessication.
L5-S1 Mild disc degeneration with dessication, minimal disc bulging.

PT/medication/acupuncture/ESI's/facet injection

Discogram 12/3/08 confirmed L4/L5 & L5/S1 as pain generators.
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  #9  
Old 01-01-2009, 06:16 PM
phylly phylly is offline
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Join Date: Dec 2007
Posts: 342
Default welcome

Hi Cathy,
Welcome to the forum. Your story sounds like so many of us who struggle with pain and the decisions of whether to do one disc or two. I also had the same levels of DDD. I went to five surgeons and also was given the choice of fusion, hybrid, or double ADR. My insurance would not cover any ADR's and we had to pay out of pocket for both the ADR's and the hospitalization. I felt that I had only one chance to go in through the front and could some day fuse if this did not work. I was really optimistic that I would be pain free.

I chose to get two ADR's on the recommendation of the surgeon who had put in over 700 of the discs. He said that I looked like a good candidate event though I was slightly on the older side. I have had these discs for 1 year and sadly have not ever been totally pain free. I chose to have a decompression surgery after 6 months to help the sciatica pain that did not go away and since then have had pain in the 6-8 range in my back. The more I do the worse it gets. So, I now have to get opinions on whether to fuse these discs due to the mechanical pain.

I know there are so many successful members on this site. I have found out that the prodisc allows a lot of movement and can create more facet pain and they put more strain on the back. The most recent surgeon I went to said that I may have more movement in my spine then when the discs were first placed. I am not sure why this is so and will keep searching for answers. I hope that you make sure that you are a good candidate for the discs and go with a Dr. who has had a lot of experience. Even though my Dr. had a lot of experience I still had these problems.

It sounds like you have a good Pain Management Dr. and your pain is somewhat manageable. Keep getting educated on these discs as newer and better ones are coming out all the time. There are so many threads on this site for you to get tons of info.
Keep posting!
Phylly
__________________
Cervical fusion C4-C6 2002
Fall on tailbone April 2005
Discogram concordant at L4-S1 2007 for back pain not leg pain
Prodisc ADR surgery L4-L5-S1 November 2007
Decompression surgery L4-S1 for left sided sciatica July 2008
Continued back and leg pain, looking at possible fusion
Removal of Prodiscs and L4-S1 fusion February 2009
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  #10  
Old 01-14-2009, 10:33 PM
treefrog treefrog is offline
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Join Date: Dec 2008
Posts: 65
Default Getting a second opinion

Well, it has been a little while since I've been here. But I am hoping that I will be getting a second opinion soon, with the neurosurgeon at Duke. Originally they had asked for my CT scan results, then they called to ask for the report from the discogram. At that time I went ahead and also sent them the MRI report, even though it is a year old. Today I had a message from the office to call, and I'm hoping it will be to set up an appointment.

I wasn't positive that I needed a second opinion, but now I am very glad that I am. And I may even go for a third opinion.

I tried this past week to decrease my pain meds, by halving the nighttime dose for a few days. I did find out that the extra pain I had after the discogram is slowly starting to go away. But my back pain was getting higher, so I went back to the higher dose. Even with that I still have pain all the time, but hopefully it will be to a level that is easier to deal with.
__________________
Cathy
MRI 12/07
L4-5 Mild-moderate disc degeneration with dessication.
L5-S1 Mild disc degeneration with dessication, minimal disc bulging.

PT/medication/acupuncture/ESI's/facet injection

Discogram 12/3/08 confirmed L4/L5 & L5/S1 as pain generators.
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