Surgery for TMS

Chronic low back pain has taken a lot from me over the past 10 years, but I find myself in a position now that I never thought I’d get to. I am about to lose my independence & have started the process for getting a wheelchair. While my case has grown more complicated over the years, and now includes things that are the result of efforts to treat the pain over such a long period of time, I have no doubt the original source is TMS. I have grown even more suspicious lately having developed a new pain syndrome in my right foot about 6 weeks ago, in the same place I stubbed my toe about 11 months ago. My TMS “training” has taught me that multiple chronic pain syndromes are often a telltale sign of an active MBS.

There's no doubt that years of powerful medications, primarily the corticosteroids, have resulted in some severe hormonal imbalances that are also contributing to my pain syndrome. Hyper-analgesia is also no doubt playing a prominent role. The underlying autoimmune disorder (Crohn's Disease), has been in a persistent 'flare' for several years now, elevating inflammatory markers in my blood. A significant percentage of Crohn’s patients develop back pain and painful inflammation in the joints. I’m sure there’s no way to know for sure, but one could argue it is for the same reason 85% also suffer from anxiety and depression at some point – dealing with a chronic, debilitating, and incurable illness, usually diagnosed in early childhood, is as good a reason as any to be anxious or depressed!

I’ve posted all of this before, but I’m here today because of the crossroads I find myself at today. I’ve felt like I was “at the end of my rope” before, but now I am in a place where this pain has left me unable to take care of myself in just about every way - physically, financially, even emotionally, as I find myself less and less able to cope with the amount of pain I’m dealing with day-to-day. The prospect of moving in with my parents in my forties and learning how to manage in a wheelchair is difficult to accept. My next statement may surprise some people.

Despite my complete acceptance of TMS as the source of my chronic pain, I am seriously considering back surgery. I completely understand that the “impinged nerve root” mentioned on my MRI reports may not be a factor at all. Despite 4 different unbiased neurosurgeons arriving at the same conclusion about my need for surgery, I wasn’t convinced I needed an operation. I believe my TMS has resulted in an inflammatory condition that has taken advantage of this sensitive area. If this is in fact the case, then a surgical intervention could, theoretically, eliminate the pain. Sure, I may wind up developing a pain syndrome somewhere else, but I think that’s still a better outcome than I’m living with today. Or maybe it’ll be a huge disaster, weaken my spine, and cause more pain in the end. I’m just at a point where I think it’s worth the risk. It’s not a decision that should be made out of desperation, yet that’s exactly where I’m at. Despite all of the uncertainty about the recovery and the horrible statistics, one thing is clear – all of the efforts to treat the TMS have failed. Everything else – has failed.

I’d very much like to try and see Dr. David Hanscom (Back in Control) or Dr. Howard Schubiner (Unlearn your Pain) for a final opinion. Anyone on here gone that route?

 

Hi eightball776,

I have not seen Dr. Schubiner as a patient, but I have recommended many people to see him, if they can get the chance. I think you have a great idea.

I also want to say with what poise and clarity you write such hard things to write, about your pain and life. I understand where you are right now, and really do hope you can see one of these fine physicians.

Andy

 

Eightball you’ve been through the wringer! and I feel there are no words of comfort someone with my experience can offer but I do sincerely hope that your stars align and you get the right appointment sooner rather than later. You are in my thoughts and wishes. Please keep us posted because heaps of us care. Cheers marls

 

Eightball, 'm very sorry to hear about everything that you have been thru.

I have not seen Dr. Howard Schubiner personally because I live in Hong Kong but on two occasions he very kindly responded to my emails & had a look at my reports.

I have had a friend who lives in Michigan who went to see him as have others here.

I cannot say enuff nice things about him.

I don't know where u live but if you are seriously thinking about surgery I would suggest that you at least see him once before taking that step.

Sending u all my best

Mala

 

I don't want to derail this topic, but I wonder, are you the same Mala from tmshelp forum? At my lowest I was reading a LOT and LOT of stuff on the Internet, and this including hundreds of pages of topics from tmshelp forum. I remember you, because you always seemed as more sensible person than some other on that forum that thought everything(even cancer and stuff like that) is TMS. I wonder, are you in better place physically? Some threads I've read from tmshelp forum were probably written many years ago, I just assumed you either get better, or just stopped using tms forums.

 

Hi Kozas. Yes I'm the same Mala. I left the TMS Forum because I found TMS Wiki to be much more all encompassing & user friendly. I did get better & had many pain free years until last year in April when I slipped & fell badly while on holiday in Mauritius. An MRI showed spondylilothesis & the dr suggested surgery. I asked Dr Howard Schubiner for his opinion & he (bless him) told me to treat it as TMS which I did.

In Nov last year I was fit enuff to go to India for a school reunion & a wedding & in Jan this year I was white water rafting in Sri Lanka. Amazing!

Sadly I picked up some nasty ecoli in Sri Lanka & since my return to HK i have been dealing with gut & pelvic pain. Its been going on for a while so just had a few tests to rule out ongoing infection etc & if its all clear then I'm treating it as TMS.

At my age 62 its sometime hard to know what is TMS & what r aches & pains of just being older.

How r u doing?

Mala

 

Well, I'm still trying. In 2011 my doctor prescribed me yet another antibiotics course for acne. It didn't helped but at the end of that course I started having stomach pains and teeth pains. 24/7. I still have it 24/7. For the first seven years I was constantly depressed, and in real bad place, considered suicide many times. I've tried dozens of doctors and dentists, dozens of meds - nothing helped me in the slightest. In summer of 2018 I discovered TMS and mindfulness - mindfull meditation saved my life. I'm still in pains 24/7 but my mental suffering is lesser. I still believe I have TMS although my symptoms are different than most(usually it's back pain, and not 24/7) so that's something that sometimes makes my wonder if it's trully TMS or if I'm gonna be able to defeat this beast of TMS.

 

Sorry to hear about yr long term ongoing pain. I’m so glad u found mindful meditation to be of value . There r many success stories here. Have u had a chance to look at the success story database?
I attach the link for u & hope u can find such stories related to teeth & stomach

https://www.tmswiki.org/ppd/Success_Stories_by_Symptoms_%26_Diagnoses (Success Stories by Symptoms & Diagnoses)

Have drs been able to give u a definitive diagnosis? If not then it may well be TMS. The antibiotics u took long ago may have somehow affected yr gut but it’s unlikely that the negative side effects wld go on so long. As for pain in yr teeth I’m sure I do remember reading abt other ppl with teeth problems so maybe u could do a search at the top of this page to get more info.

Have u done the SEP or Alan Gordon’s recovery programme both of which r available here free?
What TMS books have u read?
Do u think u r a TMS personality type.

There is so much material available here -posts, videos, talks, podcasts etc that r well worth exploring.

regards

Mala

 

Nope, no definitive diagnosis. I'm not including diagnosis like IBS or dyspepsia as those are labels they give you when they don't know what is going on. Doctors don't even know what to say when I say I have pain 24/7, they say gastro pain is usually after eating or something like that. My stomach is also extremely sensitive, just wind or slight touch can cause even more intensive pain. Same with teeth/jaw, they can't really find anything. I had dozens of different tests, including gastro and colonoscopy. They couldn't find anything.
I've done SEP and Alan Gordon's programs and nothing changed. I have 100% TMS personality, I'm people pleaser, I'm full of regret(that I maybe caused my pain), full of anxieties(some of it is acne that is still present, even when I'm 31). But after months of journaling I found it not working for me, I wrote everything that bothers me, and to be honest, now when I want to write I write only about pain. That's the only really bad thing in my life. I watch videos and listen to podcasts etc although always I'm kinda worried it's not gonna help me because it's almost always about pack pain or sometimes knee pain/wrist pain/neck pain, very rarely about stomach and teeth

EDIT I quess also preoccupation with pain is a big thing for me, in the last 9 years, ~98% of the time I was thinking diretly or indirectly about my pain

 

Just to chime back in here about the constant struggle to identify what's TMS & what isn't.....I was sure my new foot pain was another "symptom imperative", but turns out it's a stress fracture from putting all of my weight on my right side to avoid exacerbating the back pain on the left. I can relate to @Kozas - when you are sure you have TMS, but have no success treating it, then what? It's easy to fall back down the rabbit hole of "conventional" treatments. I find myself wondering about stuff like Ketamine infusions... The problem remains that the depression/anxiety that comes from living in constant pain is so difficult to treat while the pain persists. Then the depression/anxiety causes more .... Lately I'm finding the treatments to be much more harmful than the sickness. I'm going to have to take a time out & hopefully while I'm off my feet I can get off all these damned meds.

 

Hi Eightball,

I would say that if you can meet with or speak to Dr. Schubiner, that would the best thing you could possibly do. I'm taking a class with him now online and we learned that research has shown back surgery is no more effective than placebo. This is why Dr. Sarno stopped doing surgeries. Every line of your post reads TMS to me. As far as ketamine infusions, I had 5 for CRPS and they only caused me more trauma. I actually had PTSD from it for awhile. My suggestion is to speak to Dr. Schubiner and start therapy with a TMS therapist who is trained to help you get out of this neural circuit pain loop you are in.

 

Thanks. My desperation is only increasing. The bill on all of these years of taking Prednisone is finally coming due. Now I have a stress fracture in my foot as a result of spending so much time shifting all of my weight to the right side to avoid the back/leg pain on the left. I think one of the main things that's keeping my mind on surgery is the confidence they have in the type that is designed to resolve LEG pain ... because the "pinched nerve" is primarily causing hip/leg issues as it radiates out. The laserlike consistency of the symptoms feels like Dr. Hanscom might actually label me a candidate for one of these....I'm not disputing the root cause mind you, I'm just wondering if surgery can fix it anyway...because I can't seem to fix it with my brain. Unfortunately so much time has gone by now that I'm bankrupt, barely hanging on to a part-time remote job, and staying with family. Affording a TMS therapist is a pipe-dream, and traveling to another state to see one of these doctors, especially during this pandemic & in a wheelchair feels equally as impossible. Arg.

 

So I thought it was a good time to post an update here. I've posted a number of 'end of my rope' threads in this forum, but this is the 1st big domino to fall (surgery). My back pain is significantly better. Let me say that one more time just so I can have the pleasure of typing it twice: my back pain is significantly better. I'm not ready to jump on the motorcycle or start training for Olympic weightlifting, but I'm riding a bicycle, progressing in (land-based) PT, and standing far longer than I've been able to in years. I've been on Humira now for a few months, and other than some all-over-arthritis/joint pain I struggle with in the mornings & residual weakness in my core leading to early fatigue (totally understandable after all of this), the primary problem, the crushing, debilitating sciatic/low-left back pain is almost non-existant. Whether it is the Humira kicking in, soft tissue strain from involuntary muscle-tightening resolving from simple awareness, a total placebo effect, successful TMS 'work', or something else entirely, there's one conclusion I can draw with 100% certainty...it IS NOT related to a bulging disc, Degenerative Disc Disease, a pinched nerve, or any of the litany of maladies referenced in my countless MRI studies that was pointed to as justifications for surgery.

 

:cigar:

 

Great news, I just asked something in a really old thread. But how are you doing now with your IBD?