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?