My Dynesys experience, August 2007, USA

[ddavie1]

I had dynesys surgery in August of 2007 after already having 2 laminectomy surgeries and endless pain injections - this was all after several Olympics of chiropractic "help," exercise, and pain meds to many to name!

My lower back pain is inherited from quite literally both sides of my family but I believe the brunt came from my father who also had a horrible time with lower back pain - he was quite a trooper though and rarely did anything but try his best to ignore it...and he drank a lot so meds were out of the question although I think the booze helped at night anyway.

I have dealt with back pain since I was 12 years old - it was always attributed to not enough exercise, and accident of some kind, etc - it seemed less than important I suppose as most 12 year old boys are not already suffering from degenerative disc disease. My pediatrician finally had xrays done for me when I was 15 and when my mother had them explained to her I remember the doctor asking (this is true, I swear it!!!) if she was looking at the images of approximately an 80 year old man. The docs could not believe the problems I was already having. However with exercise, some chiro and occasional meds I was fairly good to go for a while. I even joined the Marine Corps and had zero trouble while I was in...I assume that was mostly due to my physical fitness though - because about 2 years after I got out it all came back to life in a HUGE way.

I was "throwing" my back out twice a month for a couple years. A strong sneeze, tying my shoes, even brushing my teeth a few times...I was totally screwed. After seeing a chiro again for nearly a decade I was done with the instant gratification of cracking my back and moved onto a surgeon at my GP's recommendation. No ortho - straight to neuro-surgeon.

I had my first laminectomy in 2002...immediate leg and foot relief - even my lower back felt better. The next time I went haywire was 2005 and I put the surgery off as long as I could. My feet were almost constantly on fire, my legs constantly ached and I could barely walk, bend, tie my shoes - everything was painful. I couldn't even ride a bike or throw a baseball with my sons. The 2nd surgery was just as "refreshing" but only lasted about 5 months before the pain returned in spades. I was now walking with a cane, feet back on fire, etc - all the typical symptoms. It was then that the surgeon and I started talking about alternate solutions.

I was nowhere near a candidate for the fake discs - my age (34) and bone deterioration were main factors. It was then that we started talking about fusion but I was very hesitant. I hated the thought of being 34 years old, unable to tie my shoes because I could no longer bend at the waist. This was to happen at L2/L3, L3/L4, L4/L5. Three levels was terrifying to me even considering the pain. I just wasn't ready to bury what limited capacities I had at 34 years old. Then he said Dynesys: flexible stabilizers that would allow motion but prevent future compression on the discs so, vioala...no more herniations.

After the 7 hour surgery that was supposed to be 2 or 3 hours I was in the hospital for 5 days which was originally supposed to be 2 or 3 as well. They could control the pain. I was on the dilauted IV with my own button to activate additional meds. After the laminectomies, the dilauted was PERFECT. No pain while in the hospital. This time, it wasn't even scratching the surface. My surgeon finally ordered valium again for muscle relaxing, 40mg oxycodone and morphine shots every couple hours. It was barely enough to keep me comfortable at all but I stopped even saying anything because of the amount I was getting. I thought I wouldn't be able to feel certain pain that might be important. Anyway, on the 5th day they sent me home with a script for the 40mg of oxy and a script for 200mcg of oral fentanyl, which as I mentioned before is typically for cancer patients. I RARELY used the fentanyl (looks like a lollipop but you aren't allowed to chew it) and the script was for 30 of them. To this day I still have over half left.

Now, my extremities are fine and all my normal activities have resumed. I was supposed to be out of work for 6 to 8 weeks but I went back in 3. I am usually at a desk in my chair but have plenty of time to walk around when I need to as well. Plus, not to toot my own horn but I am the boss too...so I could always go home and lay down if I needed to. At first everything seemed to be moving OK and I really thought that after the recommended recovery period I'd feel even better. That is not the case:

Again - as I said before - my legs and feet are better. Zero pain. But my lower back is really bad again. It seems almost as if I am not in constant, upright motion I'm in as much pain in my lower back as I ever was. It sucks! I have now gone back to my GP and updated him on everything. He was getting all the files from my surgeon so we can see what's next if anything. While I'm no doctor, my guess is it's all the deterioration there and probably the beginnings (or further induction) of arthritis. I hope not but who knows...hopefully I'll get some answers soon enough.

I wish you all the best in your search for pain relief. Please feel free to ask me questions about my procedure - I'll answer as best I can. I can be reached via email as well if preferred. All my best to you...and good luck!

Dennis

[fireyangel76]

Dennis,
I had dynesys in feb 2007. As in your case I have less leg and foot pain and yes I have more back pain than pre op. I am also now getting more frequent mild leg symptoms. I have had up's and downs since surgery and I am still not sure whether I would say it was a success or not. I am limited in activites that require bending. Bending doesn't always cause me pain at the time, but it sure does after the fact.
I know at about 4-5 months after I thought the surgery did nothing for me. I am now about 9 months out and I can say while I may not be great, I am better and not in as much pain as before. I no longer have those episodes where a cough or a sneeze put me at a 10 for weeks.
Hang in there...it may still get better!

[dshobbies]

Dennis,

Even without your medical history, arthritis is usually a long term side effect of surgeries and/or major injuries, along with extreme exercise as with gymnists, football players, etc.

Your tale sounds familiar to many others I've read about and I'm sorry for all you've endured. Anyone who's suffered from chronic pain can identify. I hope your doctors can find the cure you're so looking for. At the same time, you might want to consider weighing the benefits to a limited mobility with lesser pain vs. the pain you're now suffering through. As for not being a candidate for ADRs because of your bone deterioration, have you considered consulting with either Dr. B or Z in Germany. You might want to look into that too before deciding on your next course of action.

I've mentioned this before... but here goes again. An old fashioned remedy for arthritis pain, not the arthritis itself is as follows;

soak a box of white raisins in gin. In a non-reactive (no metal) 9x13 pan, spread out a box of white raisins. Pour gin on top to just cover the raisins, cover with saran and allow to soak in for a few days, stirring occasionally. When the gin is absorbed, eat 7 (or more ) of them daily. You can refrigerate if the taste of gin isn't to your liking. A chemical reaction between the white raisins and gin goes directly to arthritic pain!!!! Everyone I know who's tried this, especially the skeptical (I was among them) claims it works.

I also mix in a lot of cinnamon which is known for lowering your blood sugar, to help kill the taste.

Please take care and keep us posted... and next time around, choose a better gene pool !

Dale

[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

[fireyangel76]

Art,
I made my decision about dynesys mainly because as it has been pointed out, it is reversible and to my knowledge does not preclude having a ADR or a fusion if needed at a later date. I was also happier with the posterior approach as opposed to the anterior. I am still happy with my decision and haven't had any regrets for doing the dynesys. I only wish I was perfect again, but I guess I will never feel like 20 again. I hurt at times but seldom need to take anything but a rest!

[ddavie1]

recently, things appeared to be really looking up. I was almost entirely off of any pain meds - maybe a couple per week which beat the hell out of a couple per hour!! But over the last couple weeks (surgery in August 07) the pain has slowly started to return in my lower back, very little in my legs again though. The "weird" part is even with all the nuts, bolts, wires, and other inner paraphernalia, I have learned I can crack my back again. Not with the traditional twisting motion that usually offered 20 or 30 seconds of pain relief but more of a side to side tilt that sort of pulls my spine upwards and will pop in both directions, left and right. It almost feels like self induced traction for a moment. I'm sure it cant be good but when I can do it, I tend to very much do it. It's like another quickie relief function. For months after surgery I was way too "tight" for any cracking but now it's as easy as it ever was. I sure hope nothing came loose!

[mmglobal]

Man... I used to crack my neck all the time. I wondered if I'd ever be able to stop. Since my neck has been problematic, it still feels good if I crack it... but I have stopped and never do it any more.

With Dynesys, the screws never get unloaded and screw loosening is an issue. If I were you, I'd still live my life... but quit cracking!!!!

I hope that your setback turns out to be short lived. If you are worried... go get some xrays.

Please keep us posted.

Mark

PS... I still crack my knuckles... wish I could quit!