Originally Posted by mmglobal
Dear Friends,
After more than 10 years of continuous posting in the internet patient communities, I have something new to write about. Sadly, I get to have first hand experience with a extremely rare diagnosis. The full story follows, so get comfortable, get a cup of coffee or whatever.
After my very successful lumbar ADR surgery in 2002 and cervical ADR surgery in 2009, my T-spine decided that I should not feel that good. In September of 2009 my mid-back and chest pain rose to a new level and I have been severely impaired ever since. I'm back up to greater than 60mg per day of oxycodone and hydrocodone, NSAIDs, PPIs, etc...the whole 9 yards as a chronic pain patient. Unless I take much higher doses of pain killers, only able to function well for a few hours a day.
I love my pain management doctor and can't thank him enough for his kindness and support through this process. Unfortunately, he does not have the same tools at his disposal that I do. The treatment plan in the US was large panels of facet injections. I had moderately positive results that should have led to large panels of rhizotomies (nerve ablations). I am averse to destroying tissue without being certain so I did not want to follow through with these ablations. I had them scheduled for January 2010, but now I am really glad I canceled. When I asked, “How is it possible that I have positive facet injections but my facets look so good on MRI?” the reply was shrugged shoulders and, “We don't know. Sometimes it just happens that way”.
Fortunately, last March I was able to come see the BetaKlinik where Dr. Zeegers now performs surgeries in Bonn, Germany. When I asked that same question of Dr. Juergan Reul (the exceptional neuroradiologist who owns the BetaKlinik) his answer was “perhaps the injectant is running from the facet joints into the costovertebral joints, giving you a false positive”. Back in the US I started having panels of diagnostic costovertebral injections (my doctor's first) that yielded the same moderate positive that the facet injections gave. Fortunately I returned to Bonn with a client almost 2 months ago (December 2010) and was able to have CT guided costovertebral joint injections with Dr. Reul and Dr. Axel Jung, who has made this diagnosis and done these injections dozens of times. Not only were these injections extremely positive in removing my mid-back pain, but I also had the benefit of the provocative value of the injections. One of the joints generated 10/10 concordant pain, just like discography “That's it! That's my pain, exactly where I feel my pain”.
Dr. Reul recommended not doing the ablations immediately because the injections were so positive I may get long-term therapeutic value from them. He recommended follow up injections. While I experienced great relief from the injections I was still traveling, wrestling bags on and off train platforms, etc. By the time I got home I wished I had done the ablations.
I set about trying to get CT guided injections per Dr. Reuls recommendations. As I said my pain management doctor is very supportive. He found a place to do them, wrote the prescription, beat up the insurance company, etc. I was getting close to doing them in the US when another opportunity to come here (Bonn) presented itself. After a year and a half of constant disability I decided that long term relief from the injections was very unlikely. I preferred to complete the diagnosis and perform the ablations if indicated.
I arrived with my daughter yesterday and checked into the Kameha Grand. (right next door to the BetaKlinik) We arrived in the clinic at 10:30 this morning and were sitting with Dr. Reul 20 minutes later. After a short discussion I was back on the CT machine for more injections. Instead of doing a panel of injections as we had done before, we were injecting only the one joint that I had perceived as being the most painful. He injected T 8/9 right and left sides. The right side generated pressure but little pain. The injection on the left side was very painful. I was very disappointed that it was not the same 10/10 concordant pain that I had experienced before, but this was still a very positive, provocative injection. Dr. Reul said I should get up and go do whatever I wanted and come back in a half an hour and tell him how I felt. It was clear that the injection was positive, but still not as good as after having the panel of 8 injections last time.
For the second injection I asked that we only do the left side since my pain has always been left sided and the provocative injections were both left sided. I didn't want the accumulated anesthetic value of many injections. I wanted to do as little as possible. T 7/8 left was also very painful and also provided relief. Lauren and I sat for another half hour. I could feel the band of numbness that I fear from the ablations wrapping around from my back to my chest. I understand there is a 70% chance of getting this numbness from the ablation, and a 30% chance that it is permanent. So coming back in half an hour I have positive injections at T 7/8 left and T 8/9 left. Dr. Reul wanted to do T 9/10 just to be safe. The injection yielded pressure but no concordant pain. Dr. Reul then wanted to go above the successful levels and rule out T 6/7. Like the last injection, T 6/7 yielded pressure but no significant pain.
We were both comfortable that we had duplicated the results of the injections and identified two painful joints that are most likely the culprits. Dr. Reul asked if we should just do the ablation while we are here, and I said yes. Everything up to that point was done without any anesthetic for the needle placement. Since the needles that accommodate the laser are much larger he used a local aesthetic. Just a few minutes and it was done. They asked me to lay down for 30 minutes before we left.
Between 11am and 2:30 I had 3 separate sessions on the CT that included 5 costovertebral joint injections and laser ablations of 2 levels. A few minutes after 3, Lauren and I left the clinic and went to rohmule and had a wonderful lunch. I was still feeling so well after lunch that we had 2 rounds of cappuccinos and a chocolate souffle. We returned to the hotel to rest and make plans for the evening. I feel good enough to go out but decided that discretion is the better part of valor. I will rest tonight and continue sightseeing tomorrow. I had some more numbness which is likely due to the local anesthetic. It is now 9pm, and the numbness is pretty much gone.
From minutes after the second injection until now I feel much better than before. I have no idea how this is going to unfold over the next days, weeks, months, years. Dr. Reul says that with the more accurate needle placement and targeting of energy that the CT guidance and laser provides, these ablations last longer than the typical rhizotomies. He says that I may have to get them redone in 2-3 years but there is a good chance they will be permanent.
Interestingly, none of the spine surgeons I have spoken to about this (and that's a lot) has EVER made this diagnosis. Dr. Reuls's patient following me was a man who'd had these ablations years ago with great success. He's about to leave to climb Kilimanjaro and wanted to have injections just in case.
I'll keep you posted regarding my progress. I have no illusion that these joints are my only pain generators. With any luck they are the main pain generators, and my life will improve substantially.
Thanks for your support. All the best,
Mark
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