Formal Introduction
 

Hi-
I have been spending a lot of time on forum the past couple of weeks. I am so glad that I found it, it has been a great wealth of knowledge and have already had the pleasure of communicating with some great people! My battle started about 27 months ago and has take me thru 3 PT's, Prolotherapy including PRP, traction, DRX9000, and steroid injections (left L4-L5, right L4-L5, left L5-S1, left SI joint capsule, facet joints L3-S1, and caudal). I have had some relief at times but never pain free and really just a roller coaster that has been getting worse but not better.

Local surgeons want to fuse L4-L5 and all basically say at some point I will end up having a 3 level fusion or on says wait until I can not walk and then fuse because once I fuse one level my sentence will have started. (honest, but no solution) Dr, Clavel has reviewed my MRI and is suggesting a 3 level ADR w/ M6. I want to get one more opinion from overseas and discuss with Clavel how sure is about his suggestion because the condition of L4-L5, specifically modic changes. I am already leaning towards surgery but am very stressed out on how to go about finding a local doctor to support me and help with pain meds, pt, and follow up images.

The surgeons I have talked to are all TOTALLY against adr's. One told me he would pay me not to have adr surgery. 2 told me, "if you have a compilation and need a revision you will most likely die." I plan on making an appointment with my primary tomorrow, but he is under the umbrella that I cancelled a scheduled fusion surgery with. I fear that with such a negative mindset within the community I will not be able to find a doctor to be my advocate. How have other overcome this hurdle? I am attaching a few images of back.

Hi TPatti, sorry you are here, but I hope we can provide some support. Question: The changes in the bone at L5-S1 look a little tricky -- do you have the radiology reports? If so, pls do share.

This reference on modic changes may be of interest in the future; in particular the section on the differential diagnosis.

The Modic Vertebral Endplate and Marrow Changes: Pathologic Significance and Relation to Low Back Pain and Segmental Instability of the Lumbar Spine

Thanks, report attached

As I said at lunch today, (I think I forgot to thank you for picking up the tab btw - thanks! :-P ) take a lot of the doom saying of non-adr surgeons wth a healthy dose of skepticism. :-) Hopefully this board will help you make the best choice for your situation.

This is an American myth. I asked Dr. Clavel if, down the line, the devices failed, could he take them out and implant new ones. I brought up this "life threatening" stuff I keep hearing. He said yes, he could totally do a revision. He said it's not an easy procedure, but it's also not super difficult.

And mind you, I am looking at three-six levels! So if he can revise that many, he surely could do one if necessary.

Thanks Lillyth!
How did you go about finding a local doc to be your support after surgery for pain meds, pt, follow up images, and any bumps in the road that might come up? I am feeling confident that I will end up overseas, do not have money in my back pocket but will be able to leverage assets to pull it off, but I feel like my biggest hurdle is going to be having a doc here that is an advocate for me.

No problem, consider it a congratulatory lunch based on how well you are doing! Thank you for your time and insight.

Wow Patti, that is a dilemma. Finding a state side doctor to follow up on you after an overseas surgery is difficult enough, but you've already got six or so telling you "now way!"

After my European double ADR it took me weeks to find an ADR surgeon to just do a routine check up on me. I wasn't having any problems, it had been 18 months and I thought I should have a check up. I was surprised at the glee the doctors exhibited in rejecting my request for a check up; one even telling me, "It wasn't our decision for you to go to Europe and we're not responsible for providing that service. That is a decision that YOU made and if YOU want a checkup then YOU'LL have to go back to Spain!"

Because I live in the Dallas/Fort Worth metroplex, I was eventually able to find an ADR surgeon that knew the M6 that was willing to do a checkup. If you're not in a large metropolitan area, you might have to travel to one for post-European-surgical care.

Good luck, Jeff

A little more about me-
 

I was short on time the other night when I made my formal introduction and knew I had write something to give Dr. Clavel a little more info on my history so I though I would share here as well:

Back pain history : I am a triathlete and before back pain started my typical weekly workout would consist of cycling 150 to 170 miles, running 18 to 21 miles, and swimming 2 to 4 miles. My first signs, and at that point I did not think they were back related, were unstable left SI joint and IT band discomfort. I started by cutting back the running and was seeing chiro once a week to keep putting my left SI back along with a lot of self adjustments as well. That progressed to PT, eventually working with three different PT’s. I tried prolotherapy with the thought that I might have some ligament laxity causing the unstable pelvis, helped some but not better. Prolo doc even tried 3 sessions of PRP. He mostly worked my left SI, but did do some work on right Si and lumber area of L4/5 and L5/S1. 2nd PT thought I better see a neurosurgeon when my pattern of getting a little better after rest would go downhill once more activity was added. That led to next step of “conservative treatment,” steroid shots with nerve blocks. In 4 to 5 months they injected left L4/5, right of L4/5, left of L5/S1, left SI join capsule, caudal, and left facet joint of L3/4-L4/5&L5/S1. They all offered some relief, hard to say but most might have been from the caudal. I was cycling 110 to 140 miles a week for a good part of the summer but think it was only because of all the cortisone in me. I was also doing Pilates, 1 private and a group class per week for most of last summer. Again my flare ups started to worsen. Tried decompression with DRX9000, doc wanted me to stop all activity at first to establish a baseline, I would feel good when on machine being stretched, a little sore after, but overall felt I was getting better. My shift was straighter that it had been in a while and my pelvis was staying in alignment-time to start adding activity again. Started with some walking(20 to 30 minutes) and light static core work(planks, leg raises, pelvic tilts, cat dog for stretching, etc) Doing pretty good, decided to go to gym 3 days in row: 5 min. elliptical machine, 5 min. stair mill, 10 min, core work, back extensions(advice of DRX9000 doc) and 100 yards swimming. Not that much, but I felt ok each day and after 3 in a row, so I decided to take a day off just to be safe. Woke up on the 4th day with the start of 5 weeks of constant 4 to 7 pain level, that was 8 weeks ago. New MRI and scheduled for L4/5 fusion, started research found ADRSupport community, canceled fusion, now have to find the answer.

TPatty it is helpful if you can distill this history down and put it in your signature like mine below. You will find your signature under the 'user cp' section above.