CT Guided Costovertebral Nerve Ablations

[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

[Keano16]

Very nice story. Its so great to read that BetaKlinik staff is so aware of things that others don't even look at.

Good luck, I hope you are fine - and fingers crossed for longer effect!

[dshobbies]

So much is going through my mind right now and too much of it is anger. Why... should anyone have to travel to receive excellent medical care? Why must the poor suffer while the rich can travel wherever they please? Why does it take countless doctors to tell you stories or honestly say they don't know when the knowledge base it out there for those who wish to avail themselves.

I could go on but... I really hope this does it for you. Suffering sucks, no more need be said. My fingers are crossed.

Dale

[sahuaro]

Ditto to dshobbies' post...
But how wonderful that you were able to pinpoint the diagnosis and get relief.
Wishing you continued success and looking forward to your updates.

[Hooch]

Thanks for posting this Mark, no doubt it will be useful to others suffering thoracic pain.

I suppose it is similar to facet degeneration, in that the degeneration of your thoracic discs has loaded up your costovertebral joints, for whatever reason, more than your facets?

Here's hoping this improves your condition markedly.

[jsewell]

Mark we spoke about a year ago i think after my unpleasant experience here with drRegan

As for you , the best of luck with this treatment. I hope it is all positive from here.
judy

[JeffreyD]

Mark,
Great report. I truly hope you receive long lasting relief.

Dr. Reul is one gifted doc, isn't he? Sincere and caring, as well.

Blessings,
Jeff

[Maria]

Mark,
So glad you got relief and hope it lasts at least a good amount of time and thanks for posting in so much detail.

[mmglobal]

Hooch, thanks for bringing up the facets... it may lead to an interesting discussion on how the degeneration and imaging may be involved here.

I asked Dr. Reul to 'overlay' the part of the story that imaging will tell in my case. I would have been happier if he said, "yes, all your other costovertebral joints look perfect, but these two look severely degenerated." That would have been peirfect, but he did NOT say that. He simply said that in my case, imaging added NOTHING. I'll speak to him today and try to get him to show me good vs. bad costovertebral joints. Apparently, my painful ones still look good, or others look worse.

In December when I had my injections, I noticed on the monitor that I have what looks like a grade 4 (end stage) facet lower in my t-spine where I don't think I have any pain. It's kind of wacky that some can look great and be pain generators, while others can look awful and be symptom free. I believe that this is why there are so many failed surgeries. In some cases, it's impossible to get an accurate diagnosis no matter how much resource you throw at it. In other cases, a quick decision to do surgery based on how an xray or mri looks is medically inappropriate.

Spine sucks. You have very few options and they are all bad. I'm glad that I've been able to take the longer road and improve my chance of a positive outcome dramatically. ( I hope I'm not speaking too soon!) I'm glad that I can help my clients to do the same. But when all options suck, and we are just trying to find the one that sucks the least, it is important to do your homework and make informed decisions about your treatment. Sadly, for the average spine patient, it's impossible to unwind all the conflicting information you are getting and not fall prey to the doctor who promises too much and tells you what you want to here. Or the one that is uninformed about the technology that he or she cannot use, or is informed, but won't tell you about them.

Spine sucks... sorry for the long rant.

BTW, more on topic... I'm glad that I decided to stay down and not go out last night. Shortly after my post, I believe that the local that Reul injected wore off. I feel much worse today... like I've been kicked by a horse where the injections were. However, the increased pain from the injections has brought me back, only to where I was before the ablations. I feel about the same as I did yesterday morning. So, still good news so far.

Mark

[Hooch]

That's the truth of it, we're trying to pick the option that sucks the least. 100 years ago appendicitis would kill you. 100 years from now they'll probably have a lot of this sussed.

[Rob Wilson]

Mark,

The problem could be strained soft tissue (i.e. ligaments). These can cause sever pain. Most SI joint and low back strain (iliolumbar ligament) are due to soft tissue not discs or facets.

[Maria]

Regarding your costovertebral joints. Hope you'll be able to post more about the overall status. Interesting that the facet that looks so bad doesn't seem problematic. I'm guessing that's a good thing isn't it? Just hope you can get some very targeted lasting relief.

[dshobbies]

Mark,

I think we may have spoken about this - and I know your father has a 'bad back'. How much of your spinal problems do you think comes from heredity and how much from hitting the ground when you jump out of airplanes? Even those with a family history don't usually suffer lumbar, cervical and thorasic issues.

I'm not saying you shouldn't have done something you love but if you knew in advance you'd pay a price, would you have still done as much jumping as you did?

I had the opportunity to meet a gymnist in the later years of his life. His body riddled with arthritis, he could barely walk, yet he felt his pain and suffering was simply the byproduct of doing what he loved.

Your thoughts -

Dale

[mmglobal]

I had dinner with Karin Buettner-Janz, the co inventor of the Charite’ ADR) at a party in New York a few years ago. She was a world class gymnast to competed in 68 and 72 Olympics. (Much to her chagrin, those will be remembered as the Olga Korbut and Nadia Comăneci Olympics.) She has (I think) 6 medals, including gold. She also has the very important European All-Around Champion’s title. I asked her about the damage that Gymnastics had done. She has none. That isn’t to say that others have not suffered severe damage.

I know the ravages of the NFL, especially when compounded with high steroid use, leads to a horribly painful middle age and older years.

We make the best decisions with the information we have at the time. Kicking yourself for that is pointless. Having said that, if I could go skydiving tomorrow, I would. I will skydive again. (Shhhh…. Don’t tell Diane.) I do not believe that skydiving played a part in my spine problems. I have no injuries other than a sprained knee and never had a hard fall or impact. I know people with 20,000 skydives with no back problems. Consider the camera jumpers. Until the mid-90’s, they wore heavy SLR’s (often multiple) and old video and movie cameras on their helmets when they jumped. I know many with many thousands of camera jumps without problems. I don’t think that skydivers as a cross section of society will have more back problems than whuffo’s (non-skydivers for the uninformed.) They may possibly have less problems because of the general fitness level and hearty life. . (Nightly applications of liquid anesthetics may help!)

I am certain that if I was playing basketball every weekend instead of skydiving for most of the 90’s, I would have had many more injuries and be in much worse shape.

Most people who have cervical problems will also have lumbar, and vice versa. T-spine problems are more rare and are less of a problem because of the lack of motion there. I don’t know why I’m so lucky. I was the kid who liked to jump off the roof and would swing on the rope or jump or climb over things that nobody else would. I don’t know if I may have injured myself as a child??? Remember that I was happy and healthy until a car accident in 1997.

Looking back, I don’t know that I’d change anything. I miss my life. I miss opening my trunk and seeing it filled with my rock-climbing gear, soccer gear, skydiving rigs and more. I miss playing soccer 6 days a week.

The premise of Dale’s question is false. If I knew what I was doing would cause me to be a chronic patient more than a decade (and maybe more to come), would I have done it? If the premise were correct, the answer would be “no”. But, the premise is not correct. I don’t believe my problems stem from soccer or skydiving. It’s just life. Some of us wear glasses from childhood. Some get them when they turn 40. Dr. Reul told me this morning that he doesn’t wear ‘goggles’ and he’s older than I am. (Older than dirt.)

Skydiving…. Soccer… SCUBA…. Count me in. I’d go now if I could.

Mark

PS, Dr. Reul told me and Lauren about a study he did on amateur divers (who go deep enough to do ‘decompression dives’) having disc problems related to the nitrogen bubbles that cannot be eliminated fast enough and cause damage to the annulus. Interesting stuff.

PPS… I’ve never been deeper than about 90 feet… never done a decompression dive.

[Shebo]

Thank you for all of the information in your post. I have been dealing with thoracic pain (exactly what you described) for over a year. I actually think I have been dealing with it for several years. My doctor kept telling me I had kidney stones and to go home and lay down for a couple of days. I would get tested and no stones. But I would feel better and they would say "Oh well, you must have passed the stone." Until I ended up in the ER last year and they said it was a stone and sent me home. The pain never went away. I kept asking the doc for an MRI and she said to me that "It is absolutely impossible that this pain is from your back." I found another doctor and had an MRI done. And here I am...I spend most of my time in a recliner now.

All of the doctors that I have seen, just say the surgery to fix these discs is very difficult. You don't want that surgery and they send me on my way.

I don't want surgery - I just would like my life back.

I am so happy for you and I hope this works for you and gets you out of pain. You are definitely and inspiration for me and this gives me hope. (I hope I'm not too much of a downer on your happy day.)

Safe travels.

[Aaron]

Rooting for it to work for you Mark. I am following my recent mini-success of the epidural injection at my tear site with another round. Will ask for just the tear level vs. both herniation and tear level. Signifigant stabbing reduction for a while. Always interesting to have some new treatmeants out there just sorry you had to endure that much pain to get them.

[Aaron]

Shebo,

I get so mad when I hear there a dr. say there is no way your pain is coming from something. I recently spoke to a Dr. who just trained in torn labrums and did the first surgury on the hip in 2008 in my area. He said no telling how many people we sent away and said it could not be that or we did not know. ONly after his own hip problem had a hard time being diagnosed and had to fly to chicago did they find the torn labrum, did he get interested. Long story short I had my surgury in 2005 and all the same dr. including him told me it could not be that instead of just checking. It took alot of reasearch from myself and a dr. who left his ego at the door and said I cant help you but I will get you to somone who can. It took 1 day vs. 2 years for a diagnosis in houston, tx. 45 min surgury and no more hip pain. I just feel there could always be a chance until everything is ruled out.

[jsewell]

I'm rooting and praying for you too Mark. That thoracic and rib pain is horrible. Probably more so that people don't think it can happen and the thoracic spine is so stable. bla bla bla...........
What is an MVA if seen it on a few histories and am wondering.,

I used to have to lay flat on my back to get the thoracic pain to a level that i could go on walking, Embarrassed my kids a lot one summer at the airport when it hit and i headed for a out of the way wall to lay down at.k

I would take off running up a mountain if i could too . Not sure it caused any of this, but may have contributed. I already told my hip surgeon ,who is awesome that if it just meant replacing my hip a few years earlier i would run a few days per week. Now I think for the first time my spine surgeon would say no to running, but i may ask him just for kicks. That was my passion and stress reducer . Especially here in Southern California in the mountains.
judy

[Shebo]

MVA = Motor Vehicle Accident

Until I am able to get some relief, it's unacceptable to me when I hear "there is not anything else we can do" or "your pain isn't from your back". I just keep looking like everyone else. I wonder how many people accept those answers and go home to live with the pain in silence?

I hope this is the answer your pain, Mark.

[mmglobal]

The people who know me well know that when I'm not posting it's because I'm struggling with the pain. I'm happy to report that for the past few days, it's because the limited capacity I have has been spent on enjoying traveling and sightseeing with my youngest, Lauren.

Here is my catching up on the post-ablation reporting:

Tuesday, late morning spent on diagnostic injections. I had the ablations in the early afternoon (2:30).

I felt much better for the rest of the day. I'm surprised that I stayed down for the evening... almost decided to go see Cologne or Bonn, but thought better of it. I must be getting old (or smarter.) About 10pm, the local wore off and, as Dr. Reul suggested may be a possibility. I felt like I’d been kicked by a horse at the injection/ablation site.

Wednesday and Thursday morning were like every other morning on this trip (but just a bit worse.) I woke up with a pain level > 7 looking for my meds. On Wednesday, I decided to lay low again and just went for a brief meeting with Dr. Reul and a PT session with the AMAZING Gabriella. (I’ll write about her in a separate post.)

We had planned to take the train from Bonn to Maastricth to spend some time with Dr. Zeegers on Wednesday afternoon. On my December trip, the injections were very, very successful, but all the travel and wrestling the bags on and off the trains and through the airports really set me back. I didn’t want to make the same mistake, so I rented a car for 1 day. We’d spend Wednesday night in Maastricht and drive to Amsterdam Thursday morning. The international drop-off for the car was expensive, but the ease of travel in the car instead of on the trains made it well worth it.

I was still on the scarf hunt for Zoey. I had bought her a pink fleece scarf with a stuffed giraffe at the Christmas market in Aachen (on the way to Maastricht) during my December trip. When I told Zoey I was returning to Germany, she asked if I could get her a blue scarf with a Zebra. (Believe it or not, I’ve probably stopped in dozens of shops and stands, playing charades with the shopkeepers, but I think we’ll be disappointing her.) Lauren and I stopped there and walked many miles in Aachen. We got lost and accidentally went back to the same place 4 times… uphill both ways!

We had a wonderful evening and morning with Dr. Zeegers and drove to Amsterdam yesterday morning (Thursday). Our B&B here is great. We were greeted with a “welcome to Amsterdam” drink and a long discussion of all the sights and best places to go. They had prepared maps with highlights, circles and arrows (and a paragraph on the back of each picture, for those of you who remember Alice’s Restaurant.) It’s kind of like Berkeley or Height Ashbury here. It seems like a hippie community, but the canals and beautiful old buildings are wonderful to see. I had to “med up” for the sightseeing here, but we went out and saw the Anne Frank house yesterday, then walked for miles and miles again. The presentation at the Anne Frank house is very moving and well done.

After the work I had to do, I could no longer type at all and had to turn off and stash the computer before I could post an update. However, this morning was so much better than all the others on this trip. (now 2 weeks old) I woke up wondering where the pain was. I did not reach for my meds until I’d been up a while. The breakfast here is very pleasant and we are about to go out for the day. There is so much to see here in Amsterdam, we are very excited about having 2 full days here.

I don’t want anyone to think I’ve found the miracle cure here. After being up a while and typing on my computer, the pain is coming back… just at lower levels. I do expect to have a very active day today. I believe that I’ll be able to do it with less meds than yesterday. I’ll try to keep the updates coming as long as the situation is unfolding.

Take care… all the best,

Mark

[cherylstewart67]

As you can see from my sig, I have recently had this done. They usually won't do more than one level at a time, something about sever dizziness. It helped the left side, the right side not so much. It feels like a ligament pulling in between the joint somewhere. I may look at having it repeated just to see if purhaps they missed the spot. It's only early Feb and I have alreayd met my deductible. I did however manage to go one year without having anymore surgery!

[mmglobal]

Friday is certainly a 'turn the corner' day. Not only did I wake up NOT groaning and reaching for my meds, but I didn't take any breakthrough (1/2 Norco) until 2pm. I'm normally taking that very early and usually take 3 or 3 halves each day.

I FORGOT my 3pm dose of oxy until almost 6pm... that is always a great sign when you can forget to take your meds.

Lauren and I toured the old church this morning and spent all afternoon in Rembrandt's house. This museum is a must-see here in Amsterdam. We hope to see the Van Gogh museum tonight. It's open till 10pm.

I should note that even before the t-spine pain started, the museum stroll was very difficult for me. The remnants of my lumbar problems make standing still or slow-strolling very painful. I'm pleased with my tolerance so far. We've seen a lot on this trip! I wish I had more time and energy to process the pictures for posting here.

Mark

[dshobbies]

I'm waiting for the post 'forgot to take any meds all day...' Until then I guess forgetting for hours will have to do.

[jsewell]

Motor Vehicle Accident i guess this is my brain on drugs that i could not figure that one out.
I am charting what i take and when , only because i was forgetting when i took anything. i love when i look at it and realize i have gone like 12 hours with no pain pills. Of course i am sleeping for about 14 of them!!!! Still nice to not be on a 2 or 4 hour schedule.
I have been taking oxy straight since my hip replacement of june 2008 and for a while have taken 20 mg as a dose. My pm doc never writes the prescription out that way, only for 1 every 4-6 hours. But she kind of gives me just enough, not any left over, maybe this time if i keep sleeping so much. I guess it is bad to write it on a prescription although i would have thought i was not alone in this dose with others much higher.

Cheryl i saw that you had C3-4 done or higher, i forget one second later after reading something. Anyway if my screws are put in higher it would be around the C3 area, i think. What motion did you loose with that ?
thanks everyone
That is some serious touring Mark, How old is Lauren?
judy

[mmglobal]

Lauren is 22 and is my youngest of 3. She finished her undergrad degree in cellular bio at UCSB last year and will take the MCAT soon. Next year, she should be in med school. I am a proud Papa as she is my tour guide. She lover her AP art history and AP European History classes and her retention is amazing. I ask a question about a painting and she not only gives me the history of the painting and artist, but also fills me in on the politics that surrounded the work!

This has been a wonderful trip. (Pictures coming soon!)

Mark

[jsewell]

OK i was wondering if she was the little one in the picture. Makes sense now. Funny i have a 22 year old daughter with excellent retention skills also,.
she has just applied to UCSB among others to finish her undergrad. she has been at community college to save money. She also is hoping to get into medical school!!
judy

[Shebo]

That is great, Mark. I hope for the day that I can forget to take pain meds. You make me want to visit Germany. I would love to visit all of those places. Have fun!

[Maria]

Mark,
Sounds so wonderful to be traveling with your daughter and doing all that you both are with visiting the museums and such. Just your brief descriptions and other photos you've posted give some idea of how beautiful and fun this trip must be for you both. I'm very glad to hear how well you're tolerating everything! Also it would be great to be with someone with such great art history knowledge and retention that could make those trips that much more interesting and fun. Just all sounds like a very special trip!

Like others sure wish I could be doing the same or at least some of it! Look forward to continued posts and photos when you've time! Stay well

[mmglobal]

I've been negligent in not posting for a while. Some of you have seen me eluding to these results on other posts. It needs to be here so my story is complete.

Above, you’ve read about the very targeted and methodical approach to identifying pain generators. I’m very happy with the process and still think there is no better way for me to be proceeding; carefully, slowly, not submitting to anything big; or even just large panels of ablations. Small changes following accurate identification of pain generators.

It’s frustrating because the pain I experienced on injection, and the relief I felt seems to be 100% condordant with the pain I feel. Knowing what I know now, I would still make the same decisions in a similar situation.

While I experienced significant relief with these ablations, I still have my number one problem! I am getting by with less meds and experience less pain (for the activity level I sustain), I still have the #1 problem. When I do any “arms in front of me” activities, after a while I get severe pain that puts me down. I have to lie down for a long time. After a while, I can get up, but cannot sit at my computer, wash dishes, etc…

With regards to work time possible, I’m still in the same boat. I’m enjoying more and am more active with less meds, but I still can’t function normally with these types of activities.

Dale asked (on another thread), what is the next step? I’m afraid I know the answer, but it’s not a good one. I have some severely degenerated facets in my very low t-spine, but I think they are too low to be involved here. I also have a herniated T7-8, which is right in the area we are discussing. I have a HUGE amount of room around the spinal cord, so every surgeon who’s looked at it does not think this is a problem. However, just because the spinal cord compression is not significant, that doesn’t mean that the disc itself is not a serious pain generator. IMHO, the next step is discography. However, I am of the opinion that if you are not prepared to act on the results, why do the test? Positive discography would indicate fusion. I’m not sure I’d submit to a fusion at this level. Thoracic fusions are very tough to consider. I did present my case (just over a year ago) to Dr. Pimenta. He’s the top dog with the thoracic XLIF procedures. His advice was to “stay away from spine surgeons!” Perhaps with the additional investigation, he’d more seriously consider my case. I’ll see.

I’m going to try to adjust my lifestyle/work habits to see if I can function better working in small snippets of time. It’s tough, because I actually feel pretty good at times and the hours go by without me realizing it (until it’s too late.)

I will probably go back to Germany in mid March… I’ll make a decision about heading back to Bonn for thoracic discography (or perhaps Bertagnol for that) in a few weeks.

I’ll keep you posted. All the best,

Mark

[Maria]

Mark,
Does everything you do w/arms in front of you involve increase in pain? Like writing by hand as well as typing/using computer? Are all positions in terms of arms in front of you disabling re computer work? Driving for any amount of time.. or is a certain position re extension of the arms that increases or generates your pain?

Can you work w/o doing computer related work for a while (like a year at least) and see how you progress (such in can you have an assistant to do the majority of this type of work for you) or perhaps you're utilizing a very advanced voice activated system (I used really early inexpensive version that was crappy/difficult to use and never tried another one).

It just seems you've made so much progress to date so hate to think of you having more surgery anytime soon (tho we know to what end I go to avoid surgery) esp. something major..

Hope you continue to improve w/o this type of intervention and meanwhile thanks for the update. I'm sure however you'll progress will be very well thought out and with the best advice around.

[jsewell]

Mark i understand on one hand not doing the discography if you will not have a fusion, but i am the type that always needs an answer, a reason for that pain. Thus said i really don't know your personality in that regard.
I , as you know, did have the VATs to remover that very disc with DrRegan. I'm sure he won't abandon you . If i did not have the severe respiratory accident all would have gone pretty smoothly. I have pain in other areas, none are as bad as my thoracic pain was and it is gone wtih the disc(or a few months later) I love it being gone . It has been gone for almost a year and i still worry it will come back some day, but hope it wont'
I woiuld go for the discography (mine was pretty painful) and surgery again , even an open procedure if need be to get rid of that pain.
judy

[mmglobal]

Originally Posted by Maria

Mark,
Does everything you do w/arms in front of you involve increase in pain? Like writing by hand as well as typing/using computer? Are all positions in terms of arms in front of you disabling re computer work? Driving for any amount of time.. or is a certain position re extension of the arms that increases or generates your pain?

Maria, it is not painful for me to work with my hands in front of my. I feel quite normal and comfortable, then wham... all of a sudden, I can't keep going because of very high pain levels. Driving has never been a problem for me, but like most very tall people, I sit quite low with my seat back nearly reclining.

Originally Posted by Maria

Can you work w/o doing computer related work for a while (like a year at least) and see how you progress.

Are you on drugs? I think I'd need to chop my arms off for that. OK, I'll calm down. I actually do that a lot. When things were very bad for the first few months of 2010, most of my work time was spent lying on the floor, dictating letters, emails, etc. It is very inefficient. (Back then, I didn't even get the few hours that I get now.)

Unfortunately, I'm cursed with having a mission. I still pour most of my limited capacity into GPN. I can't imagine stopping it. I'll continue pursuing options, albiet very carefully.

Judy, it's so hard to consider surgery. As bad as I am and the deminished capacity that I have... I'm still a thousand times better than I ever thought I'd be during my lumbar problems. Some of the time, I'm able to sustain such a high activity level. I have periods of normalcy. On most days, I experience pain levels of 7 or 8, but I also spend more time at 2 than at 7 and above. If I can not do anything, I'll avoid high pain levels but it's impossible for me to live like that. If I try to push through, I'll get to a 9 pretty quickly.

We'll see about the discography. I tolerate all these types of procedures very well, but it worries me because I'll be in Germany and will have to travel back by myself. If the discography sets me off, that might be a disaster. I like the CT guided procedures in Bonn, but I've had a ton of radiation. Bertagnoli is an AMAZING needle jockey, so I'd trust him to do it with flouroscopic guidance. I'll see... fortunately for me, all options are open and I frequently get to spend time with the best of the best.

Mark

[Maria]

Mark,
certainly not wondering about total abandonment of your work.. just modifications that possibly lessen exacerbations which I'm sure you're trying/tried. . Re surgery ..to each his/her own. You've got all the best options available to you so I expect you'll make the right decision for yourself no matter what it might be. Of course I'm on drugs (drug).. same low dose opioid pain medicine that I function much better on than I have since I started it 10 years ago and off all the others I took thankfully at least for the last 8 months. Am quite pleased about this. Mental functioning much better as well now. Maybe one day I'll be off the pain med too tho so far just glad to be where I am at this point!

Maybe I'd be better with more lumbar surgery though what I know is where I am without it and how I feel and for me that's significantly better. I don't ever completely rule out the option or thought of it .. just hope to keep it a distant consideration for myself if possible. Whatever.. cross that bridge when I come to it.

Good luck w/discography if you go there in March and whatever else follows that~

[dshobbies]

Stupid suggestion, maybe you've already thought of it or are already incorporating -

I enjoy painting which requires sitting for long hours. After the point of no return, my thoracic muscles begin to ache beyond reason with pain enough to take my breath away. This is easily remedied by my recliner and in very short order but my day of painting is over.

Now, when I want to paint, I simply wear a very good back brace, something I'm sure most of us already have, and voila - no pain. I can paint most of the day.

I'm not suggesting our problems are similar - I'm simply suggesting you try a back brace to postpone your own point of pain. But then again, maybe you're already doing that!

And btw, if you're dragon program is out of date, you can buy last years version rather inexpensively on ebay.

[mmglobal]

Dale, great suggestion! I only have lumbar braces, but I can certainly give one a try and see if the brace keeping my trunk in a more neutral position will help. I know you are suggesting only specific uses of the brace. For other readers, constant use of such a brace can decondition your core muscles, making the problem worse instead of better.

Maria, your point is well taken. I do need to improve my work habits... specifically not getting ensconced in what I'm doing and taking more frequent breaks.

I'm sorry about the "are you on drugs" crack. Everyone who knows me, realizes that this was said with a laugh and was only intended to make the readers smile. Someone who doesn't know me may think that that is how I communicate. That is not thet case.

Regarding Dragon: I have windows7 on my laptop. It comes with the Dragon speech to text engine incorporated in the operating system release.... very smooth implementation. It is a wonderful tool and if I was worse, I'd use it more. Like most propeller-heads, I type really fast. It is soooo very slow. My laptop is 6 years old and is maxed out at 2GB of RAM, so it's relatively underpowered for the demands I put on it. When I win the lottery, I'll upgrade. But... like your brace suggestion.... I need to get out the headset (6 yrs ago, many laptops still didn't have an onboard mic) and see if I can get better at using the speech to text system. Thanks!

All the best,

Mark

[Maria]

Mark,
I know the "are you on drugs?" question was in jest/lighthearted so no offense taken by me and probably most that post here know your style of communication as well.

Dragon speaking naturally is what I was thinking about in my earlier post and I have a very outdated version of it that was incredibly tedious. Would love something that involved little to no typing as I either sit and give myself a backache typing or crouch and give myself a neck ache typing or sort of semi recline and use the laptop and give myself multiple probs all at once.

However since I don't work I'm only on the computer for fun/relaxation. Sure can get carried away with that too at times!

While I was in Fla. packing boxes at the end (fairly light so I could lift, move and weigh them for a Fedex account yet totaling around 500 lbs all inclusive) then pushing this monster big old fashioned TV on the floor not (you know wiggle this side, wiggle that side and get it to move since I could never lift) I managed to exacerbate back, neck and create some thoracic level pain I've only occasionally experienced. I was told long ago this area would be problematic someday however not so yet (except very occasionally).

Trying to lie down on my back and sleep is when I felt the discomfort/ pain most significantly like it was a dull dagger sticking up thru the underside of my thoracic area about T6 (?) between the spine and the mid to lower part of my shoulder blade. That sucked!!!! Lasted several days. Was holding my breath that I'm not going to start having pain in this part of my spine as well. Hopefully was a ligamental, tendonous, muscular type of pain because it went away.

When I type like now sitting however I start to feel this tightening in that area again and spreads up around my shoulder and into my neck. Guess it's ligamental/muscle related. Not something I want to '"encourage" so on that note ... I'm outta here for walk!

Have thought of a thoracic brace myself to sort of pull my shoulders back instead of hunching them forward (round shoulders). At least to see if that helps with upper back/neck stuff.

[Shebo]

Mark, our pain sounds so similar. The pain level (thoracic) that you describe and what makes it increase is the same.

On most days, I experience pain levels of 7 or 8, but I also spend more time at 2 than at 7 and above. If I can not do anything, I'll avoid high pain levels but it's impossible for me to live like that. If I try to push through, I'll get to a 9 pretty quickly.

I recently gave the exact above story to my pain management dr. when she said that I needed to push through my pain during the day and to add exercise. I explained to her that when I push through the pain then I can't control it.

Against her advice, I have changed the way that I use my day. I do tasks in very short amounts of time. It seems to have helped. It is very frustrating, as you know. You get going and want to keep going. I now know that it will send me into uncontrolable pain.

I just had a myelogram done and we have been talking about doing an ablation. I read all of your posts here and I couldn't find the answer. Can you tell me what pain relief (if any) are you having now from your ablation? Is it the same as above? Would you do it again?

Thanks.

[mmglobal]

Shebo, the relief I got from the ablation was minor. I have slightly less pain, so I function slightly higher with less meds. Unfortunately, the problem that easily sends me to a 9 was not addressed by the ablations. We identified pain generators and dealt with them, but they were NOT the true culprits.

I'm sure you saw my next thread about getting a discogram done at the seemingly bad level... it was negative. We are still scratching our heads.

Good luck... keep us posted,

Mark

[Shebo]

Thank you for the reply. I hope I wasn't too nosy with my questions. How disappointing to go through all of that and still no answers. I don't know how you are able to do all that you do.

At your suggestion, I am sending my new test results to Dr. Jho in Pittsburgh. However, I can't find anyone who has any experiences with him. Do you know of any?

This is a very frustrating process.

I wish you the best.

[mmglobal]

Through the years I've met many patients of Dr. Jho. Some very successful, some very unhappy. What he does is well outside the box and that makes him an easy target for lawsuits. The fact that he has to defend himself a lot does not give me concern because I've seen other pioneers who face the same issues.

Unfortunately, his office is quite difficult to deal with. I would recommend pushing through the difficulties to find out what he has to say. I look past the anecdotal evidence as it has very limited value.

[mmglobal]

As mentioned above... this story continues on my discography thread... here it is:

http://www.ispine.org/forum/ispine/2...-negative.html

[mmglobal]

This story took a detour... see http://www.ispine.org/forum/ispine/2...-negative.html

Reposting return to costovertebral joints here. Also, will update ESI's and accupuncture here.

Based on Dr. Baumbach's recommendation, I had 3-Tesla MRI of cervical and thoracic spine last Thursday. I did an extensive review with Dr. Reul... no new data, nothing interesting. No new pathology seen in c-spine.

I told him how disappointed I was with the negative costovetebral ablations, especially after such conclusive results of the diagnostics.

He said that he was being especially careful with me, using low amounts of energy in the ablation to avoid permanent wrap around numbness that is not uncommon with this ablation. See the thread linked below for more discussion.

He recommended repeating the investigation to determine painful levels. If data is reproducible, he suggests redoing the ablation, but a little more aggressively. I think that is a fine plan and will proceed with that... next time I can get back to Bonn.

Mark

[jsewell]

Mark,
It is amazing how much testing we can go through and procedures. WHat investigation are you having repeated? Discography repeat?
judy

[mmglobal]

Judy, we'll be repeating the costovertebral joint injections. In the last round, there were 2 joints of 5 injected that were clearly positive with concordant pain on injection and relief following injection. 3 surrounding joints negative.

Based on the resuts, we ablated the 2 positive joints. We'll redo the injections and the ablations if indicated. However, I'm not sure when I can get back to Bonn.

[jsewell]

"Thanks for the explanation. I am especially interested in all my thoracic buddies. My pain is gone and i hope the same for all of you. 'well my thoracic pain that is , the lumbar area got very jealous and continues to cause pain

judy

[ADR seeker]

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

Here is what I suspect.

The ADRs you have over rotate and I think you need the MRI done standing up.

Also, see an atlas orthogonal chiropractor. The MDs sound like they don't have a clue.

MDs also like to deny the effect subluxations in the spine can have on pain and they deny that spinal orthoganality effect the function of the spine.

YouTube - Upper Cervical - Montel Williams

This may fix you!

[naki]

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

After very good reviews, in 2010 I flew to Beta Klinik where I had my ADR done by Dr. Jung, but I have to report that I am still in pain and sometimes, it is even worse! I have thought about pain injections, but after reading your post, I am very skeptical. I also have the option of going under the knife again, this time, a fusion! Something that I had gladly taken out of the options when I went for ADR. Fusion? injection? talk of confusion! But one definite thing ofcourse is I am stuck with the depleted line of credit and still stuck with back pain!!!!Watch out, ADR is not for everybody!!!Not even the best doctors will tell you so!