My Dynesys experience, August 2007, USA

[johnb]

I had the dynesys done in May so I'm almost at 7 months. I've had it in long enough to feel the spacers that limit extension loosen up a bit. Now I wish the cord that limits flexion would loosen up a little, I'd feel better as I could use some flexion, I feel, to open up the L5/S1 disc space which is still giving me trouble due to some central stenosis due to low disc height and facet enlargement. Seems that laminotomy didn't open it up enough. I feel that the cord is so tight, it has been responsible for the spacers losing stiffness. MaCafee has a bunch of baboons for studies that he has tested the dynesys on. Their cords loosened up 25%. I'd like to see more data on the baboons as far as screw breakage etc. Had little leg pain after surgery and lots of backpain, a new type, that I associate from the screws in the bone. At about 4 days the right side leg pain came back mildly. As I mentioned, I was decompressed and had an L4/L5 left bulge removed and laminotomies done at that level and L5/S1. Due to bulge on the left side, that muscle that connects to right spine, top of the hip and bottom of the rib cage would tighten to make room for the bulge. That is how the physiatrist explained it years ago. Only one who explained the dynamics of how the spinal muscles can gaurd to make room for neural impingement. However, my L5/S1 disc space collapsed a bit after the IDET in 2001. So this pulling on the top right hip would pull my hip out of whack and compressed the foramen cuasing sciatic right pain even though I had left bulge. It is amazing how many surgeons don't understand the dynamics of the spine "right" itself during neural impingement. Whenever the left bulge would hit, my spine would spasm to guard it.

At 12 weeks, the pain shifted to the left side then sort of settled in the middle with bilateral leg pain. It would get bad when i walked and for about a month, I was wondering if this contraption was squeezing my nerves somehow. I'd always used flexion before to open up the disc space. If any of those baboons felt like I did, they would have been rattling their cages for sure. Did a steroid pack then waited until the 4 month mark and had a cuadal injection. I had an MRI and surgeon said everything looked okay, no reherniation. Got on Lyrica and it finally settled down at about 5 months. Since then, it has been up and down and I've had more weakness and tingling bilaterally than I had before surgery. My facets feel unloaded but the tingling and weakness bother me a bit, especially since they were in the distribution of where it was real painful before. I don't look forward to having my paraspinal muscles torn up again but I'm not sure if I'm gonna leave the implant in. After April, my insurance is changing. I'll have HIPAA protection for pre existing conditions but I've got a little more research to do to make sure I'll have coverage in case the implant system needs maintenance. I'm not sure if the lack of flexion is cuasing my problems L5/S1. Additionally, sure wish their was more long term data the system. I do enjoy my facets being unloaded. I'm wondering how much of lower back pain was coming from my facets? My discogram didn't reproduce high pain levels. I was originally lookin at the charite and am sort of glad insurance didnt come through as my L5/S1 has been short for awhile so I know the facets have had some adjusting to do. The L5/S1 facets have been atrophied since 94 and were listed as "degenerated" on the most recent MRI. Many questions still unanswered. Is the dynesys aggravating the central stenosis? How much benefit is from the dynesys and how much from the decompression procedure that was done with it? I'll try and find that link that interviewed MacAfee. He has some interesting comments on it.

JohnB

[mmglobal]

Johnb, please explain HIPAA protection for preexisting conditions?

discogram did not produce high pain levels.... did they do facet blocks, selective nerve root blocks, etc.?

It's amazing how different everyone's experiences are. I'm encourgaged bz the reports of ongoing recoveries after slow starts. The addressing of some symptoms, while aggravating others is so frustrating and demonstrates how little we understand and how difficult the diagnosis is.

Gotta go... I'm in Germany now.... trying to catch moments online in between responsibilites. I hope I get to sleep some time this year!

Mark

[mmglobal]

I've heard about raisins and vodka or gin. Anyone tried raisins with Baileys, cinnamon and whipped cream.... will that have the desired effect?

[johnb]

HIPAA is the statute that covers privacy and portability of health insurance. Since the insurance benefits were pretty good on my exwifes plan which I was covered under, I decided to keep and pay the premiums as quality care was important at the time. The laws vary from state to state, but if you exhaust your COBRA benefits, you are considered HIPAA compliant. Keep in mind that I am no insurance expert, just from current research into my own situation. As long as my current plan that I have doesn't offer a conversion plan (I have a call in to the administrator), the Georgia state insurance commission will help me find a plan and I will not have a an exclusion clauses. They have a name for the process but I can't remember what it is called. Having the number of treatments I had over the years, I imagine I'm in some database and the insurance folks would love to keep me off their rosters.

I had a facet injection a long time ago and it didn't help but the epidural did. I haven't had any other kind of diagnostic procedure other than the discogram. I'd be willing to do an EMG if the surgeon would order it but he seems content to see how I am doing in another 3 months. If I can obtain coverage, I'll feel better about keeping it in for a while longer. At the moment, I'm feeling decent but am tired of all the up and downs.

As far as the dynesys, some think it can slow down further degeneration, some don't. Without adaquate unbiased testing, who knows? I'm hoping I get better and this implant will hold up for awhile. Perhaps my discs will heal up as well as the facets too. I've definetly had symtom changes over the years. I've read that facet problems have certain symptoms like lower back pain in the mornings. check. Also, activity would bring about pain later on, a few hours afterwards, check that too. Additionally, low back pain with extension. check that too. I don't think it would be unreasonable to assume that my facets were painful. Their is absolutely a certain low back pain that I had that is resolved. There was another on a different board that had dynesys, started having pain again after a close to a year, then had ADR. Sometime after, the dynesys was removed and I saw a post about them having facet problems lately. The surgeon had said that the dynesys wasn't doing anything but it does unload the facets if properly installed.

Mark, I know that you work with doctor B with many of your clients and I've read he has lots of experience with the dynesys and has helped develop a second generation stabalization device that improved on the dynesys's shortcomings. I read the figures about how many have been "installed" in Europe but the long term data is scarce. It would be nice to see some long term study results or even hear of a few individuals that have had it long term.

Johnb

[fireyangel76]

Hello JohnB,
I am always so impressed by how much information on their own spine everyone here has. I afraid to say even as an RN I know only 1/10 of what others here know about their spine. I just find it hard to get the info when the surgeon has his hand on the door to leave the room as soon as they walked in. I think some of it is if they don't believe it to be a problem it isn't mentioned. I need to get more assertive and stop just going away with the same info I walked in with.
Any way, I am almost 10 months post op. I know exactly what you are talking about with the bands. I think mine have actually improved in the past few months with the flexion. The extention for me actually feels so weird. It feels as if I am hitting something and I can't go very far. My surgeon justs says hmm, so I have no idea why. Flexion feels pretty good but only a few times or my back pain is bad. Keep posting as I am facinated by all your information.

[johnb]

http://www.cms.hhs.gov/COBRAContinua....asp#TopOfPage

[johnb]

I was originally a biology major in college, then I realized a 3.3 with no experience at a vetinary clinic was gonna get me into vetinary medicine school. There was so much demand to get in, it really ratcheted up the requirements. The undergrad anotomy classes gave some foundation to understand. I did manage to change majors and graduate with a degree in business. I was still in college when I got my diagnosis so I spent some time in the library to learn more about my it. The internet was in its infancy back then so the library was the place to go for self study. I was extremely fortunate to meet a physical therapist that had such a gift for spines. He taught me what my MRI abstract meant and why we did this particular exercise and that. Lately, I've just been researching on the internet. Most physicians don't like when you bring print offs from the internet. I believe quite a few want us to remain ignorant. There was a surgeon that I saw about 7 years ago that said a two level fusion would be good for me. My disability scores were no where near a level where a fusion was merited on top of me being in my late 20's. When I declined, he just warned me about future flare ups. The same guy warned me about injections and the evils of hydrocodone. He was a good salesman though. I'm of the mindset that spine surgeons should be consultants and not salespeople but they are out there.

Johnb

[johnb]

Some interesting info from a knowlegable and poineering spine surgeon http://drmcafee.net/McAfeeInterview.pdf

[artfav98229]

I am thrilled to have found this site!

I first noticed some hip/lower back pain while doing yoga in the winter of 03/04. Soon I was getting shooting pain down my legs. My doctor determined I had stenosis at L3/L4 and L4/L5. In September of 04 I had partial bilateral laminectomies at both levels. The recovery was slow, I reached a plateau, and then the pain seemed to get worse. It was not the same pain though, no leg pain, just upper butt, lower back.

An MRI 6-months post surgery revealed deterioration of the L4/L5 facet joints, but my surgeon told me that I needed to be patient, that I was still healing and that the pain may decrease. It's gotten progressively worse.

After seeing numerous providers offering various treatments and trying some different medications, I went back to my surgeon. My lumbar spine is unstable, and he believes it is because of the deteriorated facet joints. There is a significant space between the bones at the L4/L5 facet joints. It looks very white on the MRI.

He is recommending the dynesys to pull the facet joints closer together and limit the movement, while NOT doing a fusion.

Sooo.... It looks like Betsy has had some positive results. Is there anyone else who has any positive feedback on dynesys? Most of what I'm finding published is positive, while most of the what I'm reading from patients is not quite so rosie.

Thanks,
Art Favinger

My history:
C6/C7 fusion 7/98
C5/C6 partial laminectomy 11/99
C5/C6 partial laminectomy 11/01
C5/C6 fusion with partial laminectomies at various levels 5/02
Competed in 36 mile bicycle leg of Ski-to-Sea Race 5/03 & 5/04, did just fine
L3/L4/L5 partial laminectomy 9/04