Crossroads - Considering Nerve Ablation - Seeking Testimonials

[eightball776]

Hi All,

I find myself at a bit of a crossroads & I'm hoping for some input from this community. I'll try to recap the whole situation without a novel:

• Age 22 - suffered for 18 months with severe low-back pain until discovering Dr. Sarno. Office visit, lectures, reading = back pain 100% GONE. Shortly thereafter, the underlying TMS transformed into Panic Disorder (read: 'symptom imperative'), which I eventually overcame through education & practice.

• Age 36 - back pain returns, quickly becoming a 'chronic' issue. Quickly identified as TMS; quality of pain suspiciously similar to what I experienced 14 years prior. After acknowledgement of the psychological cause & countless attempts to duplicate my previous success, the pain persists. After noticing a clear pattern relating significant emotional trauma to flareups of the underlying autoimmune condition (Crohn's disease), I thought I'd banished any lingering doubt that anything other than repressed stress was causing my pain.

• Age 40 - back pain has turned my life upside-down, limiting all physical activity, including just about every 'hobby' I previously enjoyed. I begin to focus on the differences between my present situation & 18 years ago. I'm confident I've identified all of the sources of repressed rage/stress, yet acknowledging the role it plays in my pain is clearly no longer enough to have an effect.

• Age 42 - reached the end of my rope. Consulted 2 surgeons who seem to agree that they can 'repair' the 'structural issue' that is causing the impingement, but what they cannot do is tell me how much of my chronic back pain is directly related to this 'abnormality'. The risk/reward ratio just seems off, and the recovery, no matter how rosy they make it sound, is sure to be brutal.

- Last time around, the pain would shift between the left & right side - it is now only on the left, in the exact place the 'pinched nerve' has been identified (though this discovery happened after the fact, so it's not a diabolical TMS-trick).

- Occasional numbness/tingling in my left foot has worsened dramatically, and my entire leg can be temporarily useless after sitting for a short while

- There's definitely more of a 'nerve' quality to the pain as opposed to the 'crushing' quality that felt as though I'd just been sitting in front of a computer for too many years & my lumbar spine was just unable to support my body weight

- Prednisone/injectable steroids no longer have any effect

- I'm dangerously anemic, have elevated CO2 in my blood, and have testosterone levels lower than I've ever seen. Now it makes sense why I'm so low-energy & have had so much trouble maintaining an exercise program.

At this point I think I've decided I agree with my old chiropractor in that my back pain has multiple causes. Muscle tension/oxygen-deprivation is definitely part of it, but whether this is psychologically induced or inflammatory/Crohn's-related, sitting at a computer for 20 years, or what - I'm much more concerned with what to do about it now, because more books & psychoanalysis isn't going to cut it.

So finally - my point! I've been contacted by a clinical trial I inquired about, called the "Intracept Intraosseous Nerve Ablation System". I've heard about similar procedures before, and it involves burning some nerve endings to block the pain signals. The only problem is that I'm having trouble finding patients who have undergone the procedure. Has anyone here tried this or anything similar?

 

[Ewok2]

I’m sorry that you find yourself in such a siatuation. I have not experienced such a procedure but did try nerve blocks for my pelvic pain which is supposed to give relief but made it worse. When we are desperate for a solution we often try things we might otherwise steer clear from - I would caution you to be weary of a ‘trial’ procedure without fully knowing the risks involved. Is consulting a TMS doctor a possibility for you?

 

[eightball776]

Thanks for the reply. I had the same thought about 2-3 years ago now I believe. Since Dr. Sarno fixed me right up back in the day, I figured it couldn't hurt to see if one of his disciples could duplicate his original success. At the very least, I figured it couldn't hurt to have a "TMS pro" tell me to my face that this is a psychological problem that I have the power to fix. I went to see Dr. Ira Rashbaum in NY, who I'm sure you've heard of, and someone I'd be comfortable referring to as a successor of Dr. Sarno's. He performed a quick physical examination, and after discussing the history of my pain & prior experience with Dr. Sarno, told me what I wanted to hear - that this pain is a recurrence of my TMS, and therefore something I have the power to resolve through psychological means. I liked Dr. Rashbaum, and believe he is a competent, forward-thinking professional (high praise coming from me; a pretty tough critic of doctors). However...I'm sure he'd agree - this is an incredibly unscientific process. In the absence of any standardized diagnostic procedure or analysis of empirical data of any kind, it is still really just an educated guess.

I'm no longer obsessed with 'accepting the diagnosis'. I was worried for a long time that there was lingering doubt in my subconscious that TMS was the primary cause, and that doubt was feeding the process & keeping me in pain. I was obsessed with finding the sources of my repressed stress, but eventually realized that this wasn’t helping. I have to start looking at this for what it is – a multi-faceted problem. Just because I have TMS, that doesn’t mean this nerve impingement isn’t also causing pain. I’ve spent far more time sitting in front of a computer than any human should over the last 20 years, and I think I just have to accept that there is a psychological aspect to my treatment plan, but there is also exercise, environment, and possibly even surgery. I know Dr. Sarno would say that TMS can be cured with the mind and that I’m treating the symptoms. He never talked about treating multiple causes simultaneously.

I've been wrestling with this bear long enough now to be able to catch myself tightening certain muscles for 'no reason'. I could be lounging in my Lazy-Boy and notice that my lower back is clenched as tight as can be. The tightening of the muscles is actually involuntary, and I have to make a concerted effort to relax them. This is clearly a TMS-ish process that produces a distinct type of pain. As crippling as that pain can be, what I'm experiencing now is not the same thing. I never used to lose feeling in my foot. This isn't depression talking or a negative attitude - I think I'm just being logical when I say that it feels like it’s become a life or death scenario. I’m either going to become another statistic after a medication mishap, or I’m going to find a way to beat this thing. There isn’t much middle ground that I can see. The status quo is just no longer an option.

Anyway, thanks for listening to me rant.

I’m sorry that you find yourself in such a siatuation. I have not experienced such a procedure but did try nerve blocks for my pelvic pain which is supposed to give relief but made it worse. When we are desperate for a solution we often try things we might otherwise steer clear from - I would caution you to be weary of a ‘trial’ procedure without fully knowing the risks involved. Is consulting a TMS doctor a possibility for you?

 

[Orion2012]

Different as this bout may feel, sure sounds like the same old TMs song and dance to me. TMS evolves, and becomes whatever you need it to be. Usually a more convincing distraction. What do you need a distraction from?
Sarno didn't fix you up, he taught you that can fix yourself. That is likely still true.

 

[eightball776]

I've been over this a thousand times in my head.....This time the symptoms preceded the diagnosis, and as diabolical as the subconscious can be in fabricating the perfect distraction that your conscious mind can accept & believe....the chicken came before the egg here. These differences between what's going on now vs. the past bout are too significant to ignre:

No migration left/right, Prednisone efficacy, numbness in the left foot, and the biggest one - I used to be able to be somewhat active after loosening up my muscles. I'd just pay for it the next day when everything tightened back up again. That made it easier to follow Dr. Sarno's "just do it" guidelines. This time I can't. The pain will just stop me in my tracks & I'll have to start dragging my leg.

I'm the guy that's always telling everyone that just about every unexplained persistent pain syndrome in the absence of obvious trauma is TMS. My cousin had a spinal fusion after struggling with TMS for years. He's experienced significant relief, but I could tell that he wasn't totally pain free. I saw him recently & he mentioned that he was likely going to have shoulder surgery for a torn labrum. When I asked how he did it, he said he & the doctor pointed to a new stretching exercise he attempted several years ago, but it was far from certain. When I tore my labrum and needed surgery, I knew the second the ball left my hand that I'd injured my shoulder in a serious way. I wanted to scream about the Symptom Imperative & how the back pain just moved into his shoulder, and that he was preparing to undergo a 2nd unecessary operation. I'm a true believer - I speak the lingo & understand TMS all too well. It's just that the first time around, each doctor had a different take on what was going on. One even said there was nothing wrong at all. This time they all point to the exact spot where I'm having the pain, even in one occasion where I set it up so that he had no prior knowledge of my case or complaints.

Unless there is something about TMS that I really don't understand well enough...truth be told, I didn't get all the way through 'The Divided Mind' because it got a little too sciency...but how could my unconscious mind create pain in the precise location of this anatomical change that has clearly worsened over time. Even a layperson can look at the left side vs. the right side & immediately see the difference...

Could a TMS process be twisting up the muscles surrounding the area & making the situation a whole lot worse? Sure thing. But it's time for me to accept the fact that the psychological treatment by itself has failed & that ignoring the rest of it is just going to lead to another decade of misery. Arg. Thanks again for listening.

 

[Lynn S]

Hi Eightball1776,

I haven't heard of or know anyone that has had this procedure. I personally just had two treatments of (IMS) intra muscular stimulation. I managed to get on a plane to another Country in hopes this would give my body relief before undergoing surgery on my torn meniscus. I wasn't able to stand without severe pain until numbness would take over both of my legs. In addition, I have issues with hip, lower back, and pain/numbness in shoulder and arm.

In December I stopped all treatments to address my TMS with improvements. My TMS diagnosis was easy to accept after so much was exhausted to include back surgery. My first thought when learning about IMS was perhaps immediate relief with something I haven't tried. I concluded with further investigation that this will help the nerve damage that TMS has created. I got immediate results and second treatment happened April 6. I have no issues in my hip and legs. There's 80 % improvement in my back, and 50% improvement in my shoulder and arm. My surgery went well two days ago and I intend to return for more treatment in maybe seven weeks. It addressess more than pain. I'm convinced without doubt the root cause is in my brain and my diligence in this area is priority. This technique was created by Dr. Charles Gunn. I live in Thailand and went to a center in Malaysia.

 

[plum]

@eightball776,

It may be worth having a chat with Dr. David Hanscom. He's a salvage spinal surgeon so routinely sees difficult and perplexing cases. He's not a TMS purist so he's less likely to put the squeeze on a knee-jerk TMS diagnosis. I think at this point you probably need to add the thoughts of someone less Sarnonian to the pot. Whatever you decide, I wish you the very best.

 

[KevinB]

However...I'm sure he'd agree - this is an incredibly unscientific process. In the absence of any standardized diagnostic procedure or analysis of empirical data of any kind, it is still really just an educated guess.

Sorry to hear what you're going through, I too am in the midst of a flare up.

With regard to this quote, this is not true. There is myriad of evidence that TMS is real and that it is psychological in nature. First, just look at all of the success stories here. Second, Dr. Sarno did a few empirical analyses of the patiences whom he treated and provides the results in his books. Those findings show an incredible success rate, something like over 90%, which is no where near the case with surgical and other physiological procedures. Dr. Sarno even references studies centered on oxygen deprivation found in the muscle tissue of fibromyalgia suffers and others. Further, he recognizes that fact that TMS is not something that one can recreate in a laboratory setting, but this is because it deals with the mind which doesn't fall into that type of experimental control.

Ultimately it boils down the this: you have been told by TWO medical doctors that you have TMS and that your symptoms are TMS induced. These are medical doctors, who have the same training and experience as all other MDs (perhaps not specialized in the spine per se). I too have oscillated over the years with this because it takes time to except such a radical notion- radical in the sense that it goes against the canon, but the canon is deeply flawed. I went and saw Dr. Gwozdz in NJ about 1.5 years ago and I had the same doubts about Sarno and that it was more like a "hippy" or "new age" type thing. He flat out told me that this is a medical diagnosis, black and white, based on decades of practice. He even went as far as to say that Dr. Sarno was by all intensive means a traditional "doctor", as in very cut and dry to the point. If I were you, I'd consider myself lucky to have been diagnosed by Dr. Sarno.

The last thing I'll add is something I try to remind myself - what's the more likely scenario: that I happen to fall into the very narrow category of those with some unique structural issues that actually does require medical intervention (these do of course exist, but as all the TMS doctors will tell you, they are incredibly rare, especially if there's not even an accident, tumor, infection, etc.); or that I have ALL of the signs of a TMS, not to mention diagnosed by a medical doctor who knows FAR FAR more than me, even though I tend to think that somehow me and Dr. Google can somehow self diagnosis better than an MD.... Really ask yourself that question. And then, of course, there's the matter of motivation. These TMS doctors don't make very much money per patient, far less than those giving shots, performing surgeries, etc. Money. Think about it. Not to mention the potential for malpractice lawsuits. That is, if a TMS doctor thought even for a minute that you had something structural going on, they'd not risk their career and medical license by giving you a TMS diagnosis and sending you on your way. NO WAY. If there were concern, they'd have you get imaging, 2nd opinions, see specialists, etc.

You, like me, are focusing on our symptoms, ESPECIALLY the new ones... that's what TMS is all about. If it were just the same old same old, it wouldn't be as effective, would it? I'm writing this as much for myself as I am for you.

 

[HattieNC]

I'm not sure how Intracept Intraosseous Nerve Ablation System differs from Radio Frequency Ablation (RFA). I had RFA performed in June 2016 without success. If you read some of my prior posts, you can read about my experience and why I wouldn't recommend it. Also, I'm available if you'd like to private message.

 

[Hamed]

Eightball, have you read Steve Ozanich's book? Your story sounds extremely similar to his. He also had pinched nerves, and arthritis, and malformations in his spine as seen on x-ray, and stenosis, and herniated discs, etc. The man was a walking Symptom Imperative. Just as he reached his own cross-roads of surgery or not, he discovered Sarno. He was never even given a formal diagnosis. He just jumped in with both feet (one of which was relatively useless due to foot drop) and within a year was symptom-free. I'd suggest reading his book, The Great Pain Deception (on Amazon), and maybe even talking to him. It might just be the missing piece of your puzzle. I hope it is, but either way, I hope you find your light and begin feeling better. One last note, I believe Steve's book is one of the few books that Sarno himself endorsed.

 

[eightball776]

It turns out the decision was made for me, and I got shut out of the clinical trial because of the immunosuppressants I'm on for the Crohn's. I think the difference between how I'm seeing my back pain is that I don't care if it's TMS or a pinched nerve or any combination of psychological and structural. I just know that I can't live like this anymore. I would happily hop one the operating table today if I could hope for a good chance of relief from a placebo effect! I feel like I exhausted the TMS treatment angle (OK, maybe I could have kept a better journal; I suppose there's always more that can be done). I've heard of those books & I have to finish a few I already have first, especially 'Back in Control' - the one written by the spinal surgeon. I have a problem with reading these days - I can't seem to stay with it and am too easily distracted. I used to read a dozen books a year, but now I struggle to get through one. I have a list of 'books to read' that's pretty long, most on related topics. The ADD is definitely a TMS.

 

[Lynn S]

My heart aches as I relate to you saying you don't know if you can live like this anymore. You mention that the decision about the trials was made for you. What's next? Perhaps empower yourself by evaluating your options even if it includes getting on an operation table. I noticed you spoke of what you could've done bettter. Perhaps you've done all you can at this time but if you can do better than why not now? I support whatever you choose and I'm confident you can count on many more folks who would as well.

Walking in my own shoes I decided on a treatment right before my torn meniscus surgery two weeks ago to make laying in bed bearable. I'm so glad I did and will return as soon as I can. I mentioned this earlier in this thread. Pleas let us know how you're doing today.

 

[HattieNC]

Eightball, I hopped on that operating table and it was a bad decision, so don't lament that it didn't work out for you to have this procedure. Despite what the Dr. said, it was an incredibly painful procedure, plus $6,000....and it didn't work. So painful, that I heard myself yelling Hail Marys and I'm not even Catholic. I got much worse afterward. Perhaps the universe is looking out for you. Please ready my story (which I need to update). I've been where you are. Don't give up.

 

[eightball776]

Thanks Lynn - for the supportive words. I say I could have done better because I always think that way, and it's part of my perfectionism, and of course what subsequently powers my TMS. Anyone can say that - after hitting 60 home runs, Babe Ruth probably went to bed at night kicking himself for not hitting 61. Where is the line between good old fashioned 'grit' or ambition and perfectionism that grinds away at your soul & causes pain & disease? Here's my point - I'm through trying to figure it out. I'm very good at identifying the sources of my 'repressed rage' and all of the reasons why my brain works the way that it does. I guess I'm just getting frustrated with the percentage of my time spent on 'health care'. All of the doctor's appointments, insurance garbage, tests, etc. - it's more than a part time job... and I'm still at square one. I know there are some treatments & equipment that would definitely help me - but because of all of this, my ability to earn money has been severely diminished. So I get annoyed at my inability to earn more, and beat myself up for it, rinse and repeat. I'm trying to focus on what I have control over, but accepting limitations brings me right back to perfectionism vs. grit.

My heart aches as I relate to you saying you don't know if you can live like this anymore. You mention that the decision about the trials was made for you. What's next? Perhaps empower yourself by evaluating your options even if it includes getting on an operation table. I noticed you spoke of what you could've done bettter. Perhaps you've done all you can at this time but if you can do better than why not now? I support whatever you choose and I'm confident you can count on many more folks who would as well.

Walking in my own shoes I decided on a treatment right before my torn meniscus surgery two weeks ago to make laying in bed bearable. I'm so glad I did and will return as soon as I can. I mentioned this earlier in this thread. Pleas let us know how you're doing today.

 

[eightball776]

I just came across this article that seems to spell out my situation perfectly:
How to See Yourself Clearly: Skip the Introspection Mode
Too much self examination can kill you

 

[plum]

I just came across this article that seems to spell out my situation perfectly:
How to See Yourself Clearly: Skip the Introspection Mode
Too much self examination can kill you

Indeed. That article pretty much sums up how I ended up in hell during the years I followed the purist Sarno view. Anything aside from journalling, therapy and fiercely challenging the pain would see you run off the board (the other, older site). Inevitably, with nowhere else to go, I kept recommiting myself to the self-searching, feeling desperately hopeless that I didn't 'get it', that I lacked faith...on and on it went. I almost tore my whole life apart.

Thankfully I had the good sense to kick the whole thing into touch and in so doing I gave myself permission to explore the healing routes that had long beckoned but had been rejected for being 'physical'. I wrote a post recently that touches on what I believe Sarno's error was.

I also think that some people closed around his ideas like a clam thus spawning a rigid, intolerant yet paradoxically vague belief system that fails many and leaves them in limbo, walking wounded through their past. I appreciate how much this has been remedied in recent times but still the same issues arise on these boards time and again. Those lost souls are stuck because they have become deeply enmeshed in their minds and their pain. It is heart-breaking to see.

I trust that reading the article may explain to those who don't understand the surge in posts recommending mindfulness, meditation, yoga and such, why they are such important practices and how they complement or replace journalling or therapy.

Here's the link to the post I mention:

http://www.tmswiki.org/forum/threads/dystonia.14448/#post-97945 (Dystonia)

@eightball776 I hope the insights gifted from the article herald your deep healing. Thank you for sharing it.

Plum x

 

[Dorado]

I fully agree that too much self-introspection can be dangerous and hinder overall progress for many people, including myself. For me, it was definitely helpful to look back at the past for a brief period of time to gain a better understanding of myself and specific situations I was in. That said, there's a certain point where it becomes mindless, ineffective, and basically pointless. It was much more helpful to work on managing my emotions toward current situations through meditation/visualization and forgiveness, than it was to dwell on every little detail of my past and every single negative emotion I've ever had. I'm never going to make 100% sense of everything that's ever happened to me, and I'm still figuring out who I am in some ways. And that's OK because I managed to heal by simply changing my thinking patterns and developing better coping mechanisms for the present and future. I had to envision myself as a loving being who forgives myself and others.

Also, if you can focus on forgiveness, positivity, and better stress management for the present and future, it allows you to more easily accept your past, without ruminating or getting stuck.

Neuroplasticity changes the brain, and you don't need to dwell on every bit of the past, know everything about yourself, or answer every existential question in order for it to happen!

 

[eightball776]

For sure - all of that makes good sense, and I admit I do struggle with maintaining a positive outlook. That end of things is definitely complicated by constantly ping-ponging on and off of steroids and pain killers. Because the quality of my pain has changed so dramatically, it is possible my TMS is getting 'louder' and taking a more neurological approach to further convince me of a structural problem being to blame. Where I get stuck is that even if my subconscious mind is truly that diabolical - what does it have to gain? At a certain point doesn't a survival instinct kick in and overpower something like this when it becomes less of a distraction from bad feelings and turns into total disability or even a life or death struggle? As a distraction from repressed rage, it doesn't work. I just have the pain and the rage. Now my leg is going numb and as badly as I want to avoid surgery, continuing along the same old path is definitely not an option.

 

[plum]

Where I get stuck is that even if my subconscious mind is truly that diabolical - what does it have to gain? At a certain point doesn't a survival instinct kick in and overpower something like this when it becomes less of a distraction from bad feelings and turns into total disability or even a life or death struggle? As a distraction from repressed rage, it doesn't work. I just have the pain and the rage.

I call this conundrum "The Djinn of Pain". It consumed too many precious years for me.

Here is an excerpt from an email exchange between @Forest and @Alan Gordon LCSW. These are Forest's words:

"I like this approach because it's simple. Occam's razor and all. It's just a couple hundred million relatively dumb neurons that just happen to realize that the brain is happier when they tickle the switches of the ANS in a certain way, so they do it, much like the dumb animals that we evolved from. After all, if we had a nearly sentient, demon in our brains, consuming many calories, it's hard for me to see why evolution didn't give us conscious access to it so we would be smarter (I mean, I can see why there might be a barrier, it's just that it feels like a bit of a stretch)."

The full exchange and context can be found here:

http://www.tmswiki.org/forum/threads/behaviorism-conditioning-and-breaking-the-pain-cycle.2200/ (Behaviorism, Conditioning, and Breaking the Pain Cycle)

 

[Back2-It]

Indeed. That article pretty much sums up how I ended up in hell during the years I followed the purist Sarno view. Anything aside from journalling, therapy and fiercely challenging the pain would see you run off the board (the other, older site).

Ha, yes. I was one of the driven off. Not because Sarno was greatly wrong, but those who were intolerant saw no other paths and ignored science. Cheers to you all.