New member, but reading for a long time
 

Hello Everyone. My name is Barbara and I have been suffering from back pain since my early 20's and I am not 39. The first time I looked into getting surgery was over 8 years ago, but once finding out what that entailed, I decided I would live with the pain until I couldn't do it anymore. I have pushed through my pain for years. I have always been very active, running 1/2 marathons, spinning, cross training etc. I have a 4 year old daughter and I own three separate businesses, the last we just opened our first franchise, in San Francisco. I feel like my story could go on and on, just as I'm sure you all feel the same, but to quickly sum it up, over the last 3 years, the downhill progression has been overwhelming. My life has always been lived in my own painful bubble. Always acting like everything is okay, and that I'm strong and I can just push through it mentally and physically and I think i've done a good job, but over the last year I know I have given up. I am not active anymore, I can make it to work about 3 days a week, and then I have to stay home and lye vertical for the day. I don't do anything on the weekend, so I can lye on the bed or couch so I can make it to work. My pain is extensive. I have lower back pain, severe; that radiates out to my hips and then down the front and back of my legs. I have seen many pain specialist, medication, tons of radio frequency, epidurals, and facet injections, and every type of holistic type of pain relief, vitamins, reiki, massage, accupuncture, etc. So now we are at surgery time. I have known this for over a year, but because of my business I had to hold off. But I couldn't get in there faster now.

Prognosis: I have discogenic disease multilevel and spondylothesis L4-L5 and L5-S1. Stress fracture is the cause, 2.
Doctor Recommendation: I've had a recomendation for multi-level Alif and Alif and ADR.

I am here because I need help trying to figure out what is the best decision to make for my body. I have done extensive research on multi-level disc replacement in Germany. I had a great conversation with a young man, 26 who had his back surgery in Germany 2 years ago, multi-level ADR and he loved it. It worked. My only concern is the stress fracture. Based on my research, ADR is not approved by insurance for a patient that has a stress fracture. I've seen Dr. Patrick Johnson in Los Angeles, who said that I am a candidate for multi-level. He is not affiliated with any insurance company and Cedar I have been informed is not the most insurance friendly company in the world.

If anyone who has gone through this same decision making process for the same type of prognosis and info on what the outcome was I would greatly appreciated or any doctors in Orange County, or Los Angeles that you had a good experience with on your surgery. Otherwise I am on the search.

Thank you and this is a wonderful place for so many of us that are so tired from the pain, to try to make an educated decision about our bodies.

Thank you!!! B

drs in la and oc
 

Hey B - I have been going through the same process and have had a number of different opinions. I live in OC and have been to Regan, Lauryssen and Michael Weinstein. I had surgery by Michael Kropf several years ago for a spondylothesis fusion. I now have problems at the level above that needs to be fixed. I think those are some names to start with Good luck with your search. Bill

Hi Brattigans.

Your case sounds just like mine. Spondy (2mm slippage of L5 vertebra over S1) at L5/S1 and DDD at L4/L5, maybe L3/L4. Is your fracture a vertebral fracture or at a different location?? Mine is a "pars defect", unilateral just on my left side.
My chiropractor said it would have been better if i had a defect on both :sus: I asked why, he said the symptoms usually are more difficult to deal with than those with both sides fractured, STRANGE.
How much is your disc slippage? I've read that those with JUST spondy and no fractures can still receive an ADR if the slippage isn't greater than 3.0-3.5mm....If you have a fracture at one level, you will NOT be a candidate for an ADR at the fractured level. This is due to an already unstable location in your spine. It sucks but i can understand the reasoning behind it. If you're unstable at a location, your pain can be partly, (maybe mostly) bio-mechanical and less nerve-related.

My MRI showed no nerve entrapments or stenosis. at any level...i can beg to differ, as i've suffered sciatic-symptoms and pain in my leg, butt and hips way too much. Laying down on an MRI table is a bit different than standing up with load bearing. Maybe we can compare some notes, what was the results of your MRI? Any nerve problems it could see?

Since this happened when i was heavily running and lifting weights and basketball, my doc theorized that i've had Spondy and this Pars defect since i was a kid, and it's held up all this time until now, and i've reinjured it. It will NEVER heal, cuz it will have to be immobilized the entire time, not possible.

There is a "Pars defect repair surgery", but it would only be done if you're young, with NO disc slippage and no DDD. The reason is, the success rate of it to heal solid again in adults is not satisfactory....Fusion is the recommended treatment as its a solid fuse(hopefully), and thus should do a better job stabilizing that location. It's unfortunate i know, but if it takes care of the major cause of pain, it would be worth it.

I had a recommendation of fusion at L5/S1 and ADR at L4/L5...and a 2-level fusion. I'm 37 years old, I will NOT fuse 2 levels if i can't help it. Now the choice is go for Prodisc here in the States, and risk NOT getting reimbursed, OR go overseas and pay a ton of money for the M6, and most likely NOT get reimbursed. Tough decisions that affect the rest of your life.

Conclusion --- I know you didn't want to hear fusion, but if it stabilizes your low back and keeps things from going out of whack, that would be a better option than even ADR, which would preserve motion, but do nothing for what the bio-mechanical stresses of an unstable spine can do when your body is constantly searching for balance. Even with an ADR, you can problems bio-mechanically if it is poorly placed. Placement is critical with ADR, even more so with the Prodisc vs. the M6. We have similar cases so your not alone here.

thanks bwink - here's some more on my back
 

Hi Bwink23-

Thank you for reaching out. It does sound to be the same type of issues.

It's a pars defect. I've been told 2 fractures, not a 100% on which side? The slippage is 7mm, L5-S1. My L4-L5 is disc degeneration, disc bulge with annular tear. My L-2-L4 is mild disc replacement with annular tear. L5-S1 is Bilateral spondylolyses of L5. moderate disc degeneration with associated endplate change. 7mm anterolisthesis of L5-S1. Uncovered disc causing mild bilateral neural foraminal stenosis. The uncovered disc contacts the existing bilateral L5 nerve root, yahda, yahda, yahda.

The pain I have from the following issues is long and painful. My lower back is in severe pain all the time. I have a section of my lower back where, my vertebrae sticks out of my skin, so right below that is the epicenter of the pain. It then radiates out to the sides of my back and into my hips constantly, no relief ever for my back and hips. The hip pain runs down to the sciatica, all the way down my leg. I also have pain in my legs other than the sciatica, my thighs and calves, and some times the front of my shins.

What is your pain like? Do you ever get relief from it? I have a fentanyl patch that I have been wearing for almost a year, and at this point I don't know if it's even working, except for that if I didn't have it, maybe I wouldn't be walking at this point. Do you take any type of medication for your back? Does it work for you? I've had facet injections, epidurals, Radio frequency, traction, and everything else you can think except for physical therapy as no doctor has ever prescribed me it and when I've asked for it they just say based on my activity levels, and muscle strength they though it would be mostly a waste of time with no relief. So at this point, surgery is the only option. I am a business owner, and my businesses have been put on hold, i've missed out on major opportunities and the ability to make better money to care and afford my family of 3, as I am the main bread winner in my family. I have a 4 year old daughter who is way to aware of my pain and I'm sure is sick of her mom lying on the couch all the time. I have always been an athlete. Running 1/2 marathons, spin, cross training, every day, 5-6 days a week, and I finally had to stop everything, not even once a week, 2 months ago.

How can they tell if you have nerve pain? Is it realistic that they are fully able to see that every nerve is not being effected by MRI? I would love to hear about anything you can tell me. Everything from what you can still do and not do, how you deal with the pain, what your plan is, what doctors you've seen, who you liked, and who you didn't. Any horror stories you've heard. What surgeries are the suggesting? What are you not willing to do? What are you wanting to do? 1st choice, second?

Have you ever heard of something called a flexible fusion, spinal mechanical structure for the spine? That may be something that could work for you that is not as restrictive as fusion. I would be interested in researching it a bit more and i really have not noticed that there are really any doctors doing it based on the description I was given on the surgery. Dr. Kropf was this persons doctor and i can't even find anything about it on his website. There is no bone used in the fusion. He would basically build an enforcement on the outside of the vertebrae with for lack of a better word or description, 2 washer-bolt like things(but not a washer, but kind of looks like it) the flexible rod is attached between the vertebraes and placed into the washer-bolt thing. They then thread a material through the screws to enforce the spine. I'm not really able to explain it, but as he did I got a visual. He is an engineer so the concept was a little clearer for him. Are you able to just get the Alif on L5-S1 and then the ALIF on L4-L5? That is what my plan of attack is at this time, unless I hear something better. Now the only hurdle to that is the insurance approving the procedure.

Thank you for your candid info, and I'm sadly coming to that same conclusion on the multi-level disc replacement. That's life! Are you looking at surgeons now? Have you narrowed it down yet? I have seen multiple surgeons, but my considerations are Dr. Dobkin, Newport Beach, CA, Dr. Patrick Johnson, Cedar, and I am waiting on appointments with Dr. Kropf and Dr. Regan Los Angeles.

Dr. Kropf is a referral from an extremely reputable surgeon who has performed all three of my best friend, I've known all my life's father. The Regan is research I've been doing, and a bit of info from a nice man I talked too from this website. He works with back pain sufferers to basically be their advocate while researching doctors and finding the best physician and surgery for the most beneficial outcome. He can facilitate your surgery overseas for a fee, and he will even go over there with you for the surgery to help you stay on track with the recovery. He was very nice to talk too and very knowledgable but would most likely be out of my budget for too much guidance. Something to think about.

Hoping your enjoying your holiday week and if we don't speak previous "happy new year" "To a long, healthy, and prosperous year!"

B, when you can, your "homework:"

http://www.adrsupport.org/forums/f58...-health-11053/

Thanks! :wiggle:

Thank you for the information. Are you not going to see Kropf because he did your last surgery? I have an appointment to see Regan this week. I have never heard of Lauryssen or Weinstein. I will take a look. Do you know which surgery you are going to be getting, and have you made your decision? Thank you and look forward to hearing from you. Happy NY!!

Got it. Thank you and happy new year.

Barbara,

Dr Delamarter is an ADR research surgeon in the LA area (Cedar Sinai) whose name comes across this site periodically. Is there any chance that your stress fracture will heal in time for any ADR surgery?

Good luck, Jeff

The "flexible fusion" you mentioned-this is not fda approved, but a member here had one installed by Dr. Clavel. The members handle is cfbugsbunny

Brattigans....i suggest you get in contact with a couple docs overseas. Currently, i am uploading my images to Dr. Pablo Clavel in Barcelona, Spain. Patients here have had good outcomes with him, and he uses the M6, which is my disc of choice if he sees i am a candidate for it. I got a recommendations of hybrid fusion/ADR for my 2 lower levels from a doc here in the States who did a fellowship at Texas Back Institute.

I doubt you would be a candidate for the stabilizing rod. With 7mm of slippage, i would think they would realign that first, and flexible rods won't get that done. If you want an ADR on top of the L5 vertebra where your DDD is, they are going to need a good foundation. Spondy's 99% of the time will be recommended a fusion to avoid further slippage, or straighten out the slip and secure the fusion site for a strong fuse. An ADR cannot sit on on unstable vertebra. (That's my story and i'm sticking to it._

Common nerve pain who would just live you describe. Shooting type pains. Tender, nauseating feelings at the base of your spine. i can lightly brush my hand over the back of my spine, and trigger sciatica-like symptoms in my leg. With increased activity like walking for long periods...i tend to have lesser back pain, but it throws it on my left leg to where it just hurts to walk at all. Pretty unnerving stuff, i'm sure you can attest too. I am hyper-sensitive to pain meds, so i take as little of it as i can...i been getting by with the occasional Gabapentin at night for sleeping, and Norco whenever i break down.

All of us would love to avoid back surgery, but if you've made it into this forum, most likely you're going to go for the surgery anyway...so you would only be delaying the inevitable (That is if you want to try having a battery implanted in your back for the rest of your life). All you can do is get as informed as possible, and make the best choices for yourself through your research and live with those choices knowing you did your best. You have a clear-cut mechanical issue and defect in your spine that affects your ENTIRE spine. Regular docs will play off Spondy like is common if you're athletic, but it affects only about 5-6% of the population. When the symptoms kick in, it's absolutely no joke. I've been hobbling around for the last 3-4 years in pain. No amount of physical therapy is gonna straighten your spine again. And your vertebra slippage is more severe than mine.

Seek out the BEST, to up your chances for the best result. You don't want to look back and wish you did more.