Ignoring the Doctor

How long did you suffer total b4 you embrace the TMS diagnosis ?

 

The first time around, about 18 months or so before I learned about Dr. Sarno back in the day.

What I can't wrap my brain around is the physiological process that would connect what I'm experiencing now to TMS. The first time around, my pain would switch sides, and I was able to suck it up and participate in some physical activity. This time around, the pain is laser focused & mimics the symptoms every doctor expects me to have based on what the imaging shows. Can someone with the same MRI have no pain? Of course they all acknowledge that. Yet any of the remedies that aren't surgical - strengthening, TMS/psychological healing, etc... I can't figure out how any would undo the nerve root being smushed. Now if that's just something on my MRI and the pain is in fact totally unrelated to this pathology...seems the only way to find out for sure will be to do the operation. I'm all turned around. A week ago I would have said no way, and now I'm leaning towards doing it.

 

Good luck...our prayers are with you. Remember SteveO his films looked horrible too and symptoms were consistent with the same area of pain.

 

As always, thanks for the support. I just finished up my journal for the day, and it occurred to me that one of the things that's thrown a monkey wrench in my ability to 'think psychologically' is the fact that the doctors agree this time. During my first bout with TMS, my diagnosis depended on which doctor I was talking to. Now they all say the same thing.

 

It will be interesting to see how you turn out...what kind of surgery are you consenting to ? I read SteveO's TGPD- parts of it tonight. Man you sound like him symptom wise. He was a mess till he lost his fear and really increased his activity. Steve was at a crossroad like you....when he had a watershed moment. Just reread some of his book before you take that leap. Otherwise I sincerely wish you the very best & hope you find relief.

 

I've decided to get one more opinion before trying anything surgical. I'd like to see what Dr. Hanscom thinks, if I can get his attention. His book, "Back in Control", is fascinating on so many levels. It hasn't really taught me anything brand new, though his perspective - a well-known spine surgeon who advocates against back surgery - is definitely unique and valuable. I am going to do whatever I can to get his take, even if I wind up having to fly to Seattle & see him in his office. I'm also doing the online TMS recovery program, a lot of reading, etc., but I'm also going to keep doing the physical therapy, yoga, stretching, etc. The 'kitchen sink' approach is best for me I think, and I approach those modalities not with the expectation that any of those treatments will cure my back pain, but with the mindset that I increase my chances of regaining my health overall by improving physical fitness and flexibility. Even if I do wind up on the operating table, the healthier & stronger I am on the day of the surgery, the faster my recovery will be. There are some of these procedures that talk about patients being up and around the next day, but I'm having trouble swallowing that rosy picture. That's the scariest part - the disparity in the stories of recovery after these procedures. I'm off to email the doc. Wish me luck!

 

Good luck...keep us posted. Send Hanscom your MRI in advance.

 

I was delighted to see a reply from Dr. Hanscom after only about 15 minutes! On a side note, it's really both amazing and sad how impressed I was, just because a doctor got back to me directly and so quickly. I guess it's just a sign of the times. I can't remember the last time I was actually able to get my doctor on the phone. These days I feel extremely fortunate if I can get a medical assistant to return my call inside of a week.

Anyway, I'd sent him a short note asking if I could arrange a remote consultation where he could review my imaging studies & offer his take on whether surgery was the best option for me. If a remote consult wasn't possible, I would arrange to travel to WA & see him at his office. Even though I'd read his book (well, 75% of it), he advised me to take a few weeks to really delve into 'Stage 1' of his DOC program, available on his website. Fair enough.

Although I am a bit uncertain about the journaling piece, even though it's really central to Dr. Hanscom's 'DOC Roadmap' and consistently mentioned in all of the success stories. I know how important everyone says it is, but to me it starts to feel a little like my experiences with psychotherapy. I'm very aware of the sources of my repressed rage, unconscious anger, etc...and all of the personality traits that combine to create the perfect storm of TMS. Writing it all down in my journal just feels like forcing myself to think about the same crap for the 50th time that day, while at the same time putting me back in front of the #$*%& computer I've already been in front of all day!

So here's the recent development that threw another wrinkle into my quest. I was determined to dig up my MRI from 20+ years ago when Dr. Sarno helped me cure my back pain.

I'd been searching for evidence that there was a change in pathology consistent with the onset of the neurological symptoms. If I've had the same damn 'annular fissure' and narrowing blah blah blah over this time period, then I could be certain psychological factors were behind these new symptoms, and that everything I'm being told about the potentially permanent nerve damage was complete bullshit. The prospect energized me as I called local imaging centers searching for my golden ticket.


And then, completely by accident, I discovered page 2 of my MRI report from 11/17. It mentions measurable increased neuroforaminal narrowing as having a marked mass effect on the exiting left LS nerve root. So there's my 'evidence' of an observable change to the problem area that's exactly consistent with the symptoms I've been describing to the neurosurgeon.

How does the TMS cause this, and if 'pinched nerves' are just not responsible for back pain as Dr. Sarno posits, what is the explanation behind all of the patients raving about their successful operations?

Even if you factor in the placebo effect, it's still hard to dismiss. I think I'm going to write to Dr. Rashbaum & see what he thinks. Arg.

 

It's a placebo effect and runs it course. I believe you will see Tiger Woods having issues in the future. The mind is that strong remember. If a doctor tells you "you will be cured".....ppl believe it deeply and bam they are fine till the next sequence of events pops up. Just my opinion.

 

Update/Recap Current Conundrum

I have low back pain due to TMS-related inflammation. For those of you not busy following my history here, the quick version is that I was able to banish a semi-similar issue 20 year ago after becoming a patient of Dr. Sarno’s. Looking back with the benefit of hindsight, it’s of course obvious – the pain would migrate from left to right & seemed to follow no specific pattern whatsoever.

I believe I now have a much more persistent, aggressive strain of TMS. It has thus far resisted every attempt at healing through the same principles that proved successful years ago. The pain no longer migrates but stays laser-focused on the lower-left, at the spot where the folks in white coats say there is a “pinched nerve”. A few months ago, the neurological symptoms began progressing & I’m now dealing with a distinct neurological sort of pain along with the crushing/aching sensation that feels like my core is not strong enough to hold up my torso.

So, here’s my dilemma. Four surgeons (3 technically unbiased, as they gave their opinion without anything to gain) now have recommended some sort of operation. The one that accept my insurance and can actually operate if I choose to go forward is recommending a more invasive option that includes a fusion – L5/S1 & L4/L5. I’ve read the studies on fusion for LBP. Ain’t doin it.

But – I’m starting to really wonder if the impinged nerve root (there’s no question this is being identified again and again) can be repaired with a microdiscectomy. The stats on that operation are very encouraging – and I am wondering if that would relieve the nerve/leg symptoms I’m dealing with. The difference between now & 20 years ago also is that back then I had a number of vague diagnosis from the “back pain industry” – DDD, stenosis, etc. This time around, not only do all of the doctors agree, but the symptoms present exactly as indicated. I struggle with labeling this part as TMS because those indicated symptoms? I didn’t even know they matched with what is accepted as associated with an impinged nerve root at this location.

Do I go for the less invasive procedure hoping to fix the nerve thing, while accepting that the inflammatory pain will not be cured – so I’d continue with my TMS treatment & physical strengthening program? Or is the fact that I’m considering surgery & even entertaining the idea that a structural abnormality could be even partially responsible for my pain – is that completely destroying my ability to make any progress treating any part of this from a psychological perspective?

I’ve read a lot about how pinched nerves are rarely the cause of LBP – but when is it?

 

It sounds like I could have written this. (As well as the fact that you won't do a fusion, which I won't do either, although in my case it's never been offered.) Could you describe your neurological pain in more detail and where in the body it appears?

Did you ever go through Hanscomb's program or reach out to him? How did that go?

How active are you with sports and/or your exact physical therapy regimens, and how do you spend your days at work, home, play (sedentary and sitting a lot, etc.). Just curious.

Feel free to PM me if you'd rather not reply publicly. I might be able to share a few things that have worked for me, but I'm still (always, seemingly) trying.

 

Hi eightball,

I'm sorry to hear you're still struggling. Here's my take on it, though i'm not a surgeon (Dr. Hanscom, as mentioned above, would be the one to consult for a technical opinion). In my experience, it is rare but does happen when a pinched nerve root will cause symptoms that are not TMS. However, frequently, i've seen it in people who actually don't have any back pain, but DO have symptoms (mostly weakness) in the exact distribution of the pinched area. For example- i've seen two different people who had issues at L5 and had foot drop or issues with the strength of their toes (one had this due to an accident, one had it due to severe spinal stenosis). Neither had any pain, and neither got surgery (just used a foot brace to walk). There can also be the rare case where the actual spinal cord is involved, but it definitely doesn't sound like you have anything that would suggest that. Another great example is anyone who has had surgery knows that a nerve could be cut, but it will result generally in numbness of the area, not pain (long term). I think it is a mistake that pinched nerves are equated with pain in the minds of many doctors, when in reality they seem much more likely to cause loss of function or sensation in the rare event when they occur. I don't have any great research to prove this, but it is the opinion of most TMS practitioners.

That being said...I found an interesting article that showed that outcomes after a decompression surgery for lumbar disc herniation are actually WORSE for people with more back pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176694/ (The outcome of decompression surgery for lumbar herniated disc is influenced by the level of concomitant preoperative low back pain) The better outcomes were for people with mostly just leg pain (likely in the specific distribution of the nerve with the issue).

Remember that Dr. Sarno has said that if you still have doubts, the pain will persist. TMS can be quite convincing, and sometimes it doesn't move around. I've had versions of TMS that stay in the same location. I think that to make progress with TMS pain, you first have to be totally convinced that your issue is indeed TMS.

 

Thank you for your reply. I guess my 'faith' in the TMS diagnosis has begin to falter after the psychological approach failed to produce any results. I'm very aware of the causes of my repressed anger & personality traits that feed TMS. Some might say a little too aware. When I was 22, simply acknowledging the diagnosis & seeing so much in common with folks suffering from the same thing was enough to eliminate it...although 'eliminate' is not the right word I guess...what really happened was that I triggered the 'Symptom Imperative' and started having panic attacks shortly after the back pain disappeared. It took me another year to overcome the anxiety, but I did so through education only.

I am a victim of my past success. I can't help but feel discouraged after this many years & not a detectable shred of forward progress. I have the "Daily Reminders" posted all over my place. It's just not working. Now I'm really dedicated to Dr. Hanscom's DOCC program, but the only thing that has provided any relief is Prednisone. Of course that's where the autoimmune thing comes into play & most doctors will say that the Crohn's Disease is behind systemic inflammation that is to blame for the back pain as well; the consistent response to steroids serving as evidence. When I get the right dose - it is nothing short of miraculous. I become super-human & immediately kill it in the gym, overdo it, and wind up in worse shape than I started once I begin to taper off & the effects wane. The reason I've been getting concerned however is that the steroids do not eliminate the weird "nerve-pulling" feeling that travels down the outside of my leg, puts pins & needles around my entire calf, and feels really scary. That's becoming a 24-7 sensation - unrelated to inflammation or anger or posture or anything - that is what's shaking my faith in the TMS I think.

After all of this education & experience...if my faith is shaken now, it's not coming back. I'd go through the operation if there was a decent chance at a placebo effect.

 

So my doc floated the idea of trying one of those internal spinal stimulator thingies - the HF10

I know it's not a cure-all by any means, but if it can bring my pain level down to a reasonable place that'll allow me to get back to my strengthening routine it could be worthwhile. At this point I'm looking for something to keep me from winding up on an operating table out of sheer desperation.

Dr. Hanscom actually offered to look at my case, but only after I've completed the DOCC program. I'm working on it, but it's a lot of reading to fit in & I'm struggling to find a solution that can at least carry me through to that point.

Anyone tried one of these things?