To Hell and Back

With 2009 being a bust musically because of my disc problem, I was determined to get back into gigging again in 2010. I took a job at Sofia's after New Year's with Eliot Zigmund and Ed Fuqua and it went really well. I felt very little, if any pain. But by the middle of February, my situation went from bad to worse. On a follow up gig with my old friend, Sylvia Cuenca, I needed to stretch out my arm every 10 min to avoid having my arm lock up. With top flight pianist Jill McCarron in the audience, I pressed myself to the limit and the problem probably escalated from there. Thankfully Jill sat in for two tunes, buying my aching arm a little recovery time.

My tricep, forearm and shoulder constantly throbbed when walking. Oddly, just having my hand in my pocket induced the worst paresthesia. One evening I suddenly couldn’t raise my arm at all. And in the morning it was the same. I couldn’t brush my teeth. I called the neurologist immediately who prescribed a pain killer and an oral steroid. The MRI taken put me through one of my most painful experiences ever. I couldn’t lie on my back without intense shoulder and arm pain and being locked in the claustrophobic MRI tube for 20 min only tested my will to bear the pain even further. After the MRI confirmed that spinal impingment was not the cause of the arm weakness, I started physical therapy. Thankfully, the strength came back to my arm. I started doing cervical traction and using my new cervical pillow. The idea behind traction is to stretch the vertebrae and relieve pressure off the nerve. Unfortunately, I think traction was a fatal mistake in my condition. My mind drifted back to one of the accupuncturists at the clinic who advised strongly against traction for herniated disc. (Damn! was he right? I thought). I woke up in the middle of the night and felt pain across my neck and shoulder with hot patches of edemic swelling down the spine, across the shoulder, down the ribcage, triceps, forearm and fingers. In the nights following, I was waking up in pain and swelling, making trips to the couch, but still not able to sleep. I tried sleeping semi-upright, on my back and on my side. But nothing worked. Everything felt so tender, soft pillows felt painful, like they were denting the back of my neck and head. The inside of my body felt like it was boiling and swelling.

At this point I was sleeping maybe 2 hours a night and getting really run down. At work I sat on the toilet just reflecting on my throbbing pain. It was almost to the point where I could faint but in a meditative state I tried to imagine pain as another sensation, like heat, trying to blot out the pain. That day I found a book online, Fix Your Own Pain Without Drugs or Surgery written by researcher and clinician, Dr. Jolie Bookspan. Her opinion is that correcting forward shoulder and forward head often solves the disc and pain problem; many of the medical conditions described in a typical MRI analysis such as herniation, cervical lordosis, and spondylosis can be irrelevant, once you learn to balance the weight of your head and square your shoulders properly underneath it. However I probably should've held off on these posture and stretch exercises until I was in a little less pain.

The next day I had an ache in the small of my back from Bookspan's recommended exercises. I had the uncomfortable feeling of being unable to support the weight of my own head! Eventually I ended up in the E/R at St. Luke’s Roosevelt. The hope was to get the pain injection recommended by the neurologist, but they wouldn’t do it. And I was still several days away from my pain management appointment. Instead the E/R doctor prescribed the painkiller, percocet. Percocet allowed me maybe an extra few hours of sleep but I would always awake at 3am with swelling and pain. This went on for several more days. On Monday I had the day off and strolled around the city on a sunny day. I was trying to stay positive, take vitamins (my friend Charles recommended magnesium malate and Vitamin D3) and got some exercise.

I was beginning to get confused. I was thinking in circles and losing the ability to make decisions: where to eat, where to buy water, whether to stay in the city or go back to Queens. I drank a lot of water but had no appetite whatsoever. I realized I had might've dropped 5 lbs that week. On the train people started looking at me funny. I probably looked like I was on drugs. When I got to Queens I ran into Duane Reade and bought myself a 6-pack of Ensure. Outside my fingers were fumbling as I broke open the pack and guzzled a bottle down. I thought maybe I should just sit and find a place outside to relax in the sun. But I realized I didn’t have the strength to carry the six pack to the park, so I got on the bus. I couldn’t get a seat so I stood. Somewhere in the middle of the bus ride, I found myself falling asleep standing. Finally I said to myself “Enough! Stop feeling sorry for yourself! Get a grip!” This actually stimulated my system a bit. I was happy I had that in me. When I got home I started exercising and doing stretches with renewed vigor. I felt really good with this new energized attitude. I lay myself down for a short nap late in the afternoon. But an hour later, I woke up with my armpit completely swollen up along with my neck, ribcage, arm and fingers. There were these little arthritic knots down my fingers. (So much for positive attitude). Later on in the evening I started developing this burning feeling on my left side. I never felt like this. As I researched the Internet I realized that the percocet was probably giving me an ulcer. All the previous nights I starting getting the feeling that my body was turning acidic. I couldn’t eat the meal cooked for me. I stuffed my face with lettuce and some simple pasta with some broccoli but I ate it without any feeling for appetite.

The night before pain management appointment a friend recommended that I go to the clinic crying in pain and go cold turkey on my meds so that they would give me the injection right away. Given percocet was killing me internally, I went ahead. That night I suffered incredibly. Hour after hour in pain. It felt like I was in drug withdrawal. Getting up and pacing, sitting on the couch, I was unable to relieve the pain or find a comfortable way to sit or lie down, stacking pillows everywhere. At around 5am I sat upright on the smaller couch, stacking pillows to my left and my right, behind my head and my feet. I was dying for sleep and was willing to try sleeping while sitting upright, but as I would doze off I could feel my head falling to the left, the right or in front of me, like a drug addict with the nods. The head nods were pulling on the disc, further irritating it which would wake me up in spasm. I was trapped in my own body! This is probably one of the most frightening experiences ever. Suicidal thoughts gripped me for the first time in my life. Because if you can’t walk, stand, sit or sleep, what else is there?

Miraculously, at 6am I suddenly fell into a deep sleep. I woke up (missed my physical therapy appt) and suddenly felt refreshed, and without pain. As if I had gone thru drug withdrawal and gotten to the other side. Now ironically I was pissed off, because the goal was to show up to the pain management clinic in pain so I’d get my shot! In the pain management office I was stretching myself out to induce some of the pain I had been feeling all these nights. When you fill out the chart you are supposed to rate your pain on a sliding scale. Me, I’m always trying to be honest about these things, but my wife looked at me with daggers. "Tell them you're in pain! They’ll never treat you!" She was right. As it turned out they scheduled my epidural steroid shot at the end of the week. The Saturday following it was miracle. Zero pain. However it was short lived. The pain returned in about a day. But not to the level it had been. More like how it was at different points last year - a somewhat annoying discomfort, but not life debilitating. Recently I got my second epidural and the effect was about 2 days. The one mistake you can make is pressing yourself too hard in the wake of the benefit from the shot.

In terms of the benefit, I had heard that epidural steroid shots are for the most part ineffective for the treatment of long-term pain. However, one of the doctors taking part in the injection procedure told me that in addition to calming down the nerve root, there is also the possibility (depending on the state of the herniation) that the herniation can resorb itself over time with the aid of the shot. That was new. I will be following up with this in a later blog.

Next Time: So IS There a Cure for Herniated Disc?

C6-C7: Not Just Chord Symbols

I'm cutting ahead for a second before presenting my To Hell and Back story. Funny how these coincidences occur. I found out recently that a pianist friend has the same C6-C7 herniated disc issue as me and is considering surgery a few months down the road. My original perspective on this was somewhat driven by patient complaint posts from medical forums and a Dr. Ron Daulton, Jr., a chiropractor ( I will be reflecting on his Internet offering on a future blog). Plus the whole idea of them cutting open my neck and yanking stuff out and putting metal and grafts (yuck!) Anyway the friend has actually been in touch with many respected surgeons and upon re-examination it seems like success rates are much higher than I thought (although one site quoted the cryptic 48-98% success?? what the hell is that?) I have been doing some Internet research and honestly I can't find anything to corroborate Daulton's low 16% claim on his website www.healyourbulgingdisc.com. Perhaps he should just be asked :)It should be noted that a comment poster on my blog posted his success story with the procedure.

Two videos I have encountered today show the options. The first one, although essentially a cervical disc fusion and graft success story, is a bit eerie, due somewhat to the demeanor and the graphic explanations of the presenter (she posted this 10 days after surgery).

ACDF Anterior Cervical Decompression Fusion Internal Fixation Harvest Bone Graft **See also animiated ACDF below

The second appears to be a TV news story and features a St. Vincent's Hospital neurosurgeon and happy post-op patient after cervical disc replacement surgery. The video is from 2008.

New Cervical Disc Replacement

Although as far as I can tell (at least so far) the traditional fusion and the new replacement surgery claim similar success rates, the idea of retaining the mobility afforded by the replacment seems more appealing. As the fusion patient shows she has some mobility issues.

Cheers

Jon

** Note. The disc replacement surgery shown is(to my knowledge) still in the clinical trial stage. The hospital shown is St. Vincent's in Jacksonville, FL not St. Vincent's in New York City. This video is a replay of news spot on Jacksonville news. They ran a follow up story on it later on.

***Follow-up. For those of you still unclear on the ACDF surgery mentioned by the gal, I think this quick video expalins it best: ACDF Surgery Video. The technical name for the surgical procedure is Anterior Surgical Disectomy and Fusion. Essentially the disc is removed, the space filled in with bone graft (from your hip)and the graft is screwed in. Over 3 months the graft is supposed to fuse with the vertebrae adjacent to it.

When Do-It-Yourself Does Yourself In

I’m a DIY person. And as my friends will confirm, I’m also sort of obsessive compulsive. When I read Claire Davies’ The Trigger Point Therapy Workbook, I was excited to find an alternative to the gloomy surgical track offered by conventional medicine in the treatment of herniated disc. The book’s diagrammed predictions of referred pain were as fascinating as they were accurate. But I didn’t exactly heed the book’s recommendations for massage repetitions (6-12 strokes) or frequency (3-6 times per day) and I zealously attacked those trigger points night and day – prodding, poking, and using a rubber ball or an umbrella handle. Probably not wise as on one occasion I might've compromised my median nerve, resulting in weakness in my fingers for a day or two where I couldn’t button my button fly jeans or use a key. In June I had my first experience with neuropathic edema (build up of tissue liquid as a result of neuropathy) under my armpit area. I rested my hand over it and slowly deflated the mass. It is odd how I never told anybody about this serious medical issue but then again I felt like I would have difficulty explaining it to people and even myself. Did I imagine this happened? (I didn’t imagine it, as I would discover later).

Often late at night, when I’m completely relaxed and there is no extra tension produced from other parts of my body in opposition (because I'm lying down), I am often able to bring those pesky trigger point knots to complete release. On several occasions, I cried “Eureka! I’ve done it! I’ve released my trigger points!” I’d imagine sharing my experience in the blogosphere with explanations of how I did it. Unfortunately, I would discover a problem: trigger points retighten. And in my case, almost immediately. Some may assert that the cause of the retightening was hyper irritation of the nerves through excessive massage. That might be true but the more likely explanation is that my cervical herniated disc is in a steady state of nerve compression. This is the difficult part of assessing therapy - what is the level of disc herniation and nerve compression? And how much can a scan show that pressure? Without being able to jump into the Fantastic Voyage pod and look, you can never know for sure. And there is so much variation in people’s experience.

Claire Davies solved his own frozen shoulder problem (the injury was brought about by his career as a piano tuner) by studying the Travell and Symons volumes and employing intuitive self-trigger massage. He might have had cervical herniation or he might not have. But he is lucky he didn’t heed advice to operate on his disc because he solved his problem for good without it and found a new profession as a licensed massage therapist to boot. And it is this aspect that sparks debate. Is cervial herniated disc a catch-all diagnosis given that patients can fully recover from pain while still having herniation? Because the neuropathic symptoms are identical. Some people’s herniation is more severe (at least how it appears on the MRI) and yet they do not have the painful symptoms I have felt most recently. Like relating smoking and cancer, the cause and effect gap varies from case to case. Some people smoke all their lives and don't get cancer. The disc-nerve and muscle pain link is generally established fact, but the specifics and differences of each person's illness can be subtle and costly for patients who choose a treatment that ultimately doesn't work. It is the opinion of Dr. Jonathan Kuttner there is a link between the two, that damaged disc switches on trigger points. Some of Dr. Kuttner’s website, marketing and email communications are a little unorthodox but a video he posted teaches an interesting new approach to trigger point massage, which for lack of better name I call “trigger point dissolving”. A video showing the method is here. I have been able to employ this method with some success.

For most massage therapists, the scalene muscles and especially the sternocleidomastoid (or SCM for short) are a no-no. “Stay away from them!” is usually the reply. Most of the trepidation has to do with the sensitive glands in the region and most importantly, the close proximity of the carotid artery. Any type of excessive pressure in the area can cause a serious reaction called syncope which can lead to dizziness, nausea and fainting. One day I gave myself a syncope molotov cocktail by relaxing in an extremely hot tub and slowly working out my neck triggers. I didn’t feel I was pressing on the carotid as I know where it is, but as I arose from the hot water to dry off I found myself under the sink for a very long time without realizing it. The episode lasted for about a half hour and was a little frightening. I learned my lesson about the dangers of vasodilatation. Nevertheless, I am absolutely convinced that the scalene and neck muscles are the lynchpin of the entire operation, as my experience with late night massage will clearly demonstrate. Caution, however. Anyone reading this should not attempt to do this on their own. I have made myself my own guinea pig, but in no way recommend that for anyone else, as these massage techniques carry considerable risks. If you do insist on trying it, touch yourself with the lightest possible touch (as recommended by the Kuttner video above).

The most important concept for me is the “top down” principle of triggers. It is best to work the knots at the top of the chain to ensure release of the lower ones. This is also mentioned in Claire Davies book. If you work those, the ones below tend to release as the muscles lengthen. From a common sense perspective, you can see how this should be true if you imagine a rope with knots in it. I’ve had about 6-7 nearly marble sized triggers deep in the neck muscles for a quite a while now. There are just too many and touching any one of them tends to make them yank and seize on their trigger brethren, growing even harder. Still I imagine a day when these little devils in my neck will be a thing of the past.

One night, (following the "top down principle") I decided to locate the highest trigger point in my scalene muscles and tackle this issue with with them once and for all. Moving up, I took my left thumb and gently pushed higher and higher towards the bottom of my jaw. Once I relaxed I found myself releasing the entire muscle group to the side of the jaw line and I worked my way further up until eventually I traced the muscle tension over the ear and to the little depression in the skull. With a gentle push I completely relaxed my jaw. I had no idea it was so clenched. (As a mental aside, I thought to myself, is this a dental problem? Does my unconscious jaw clenching cause the attaching scalene muscles to tighten?) With this key relaxation I then worked my thumb back down, gently pushing the now releasing scalene triggers over to the right. I felt my lower triggers in my shoulder and forearm beginning to release even before I got there. Little by little, I worked my way down, pushing away and releasing the knots down the chain, eventually reaching the attachment at the clavicle and underneath the rib cage, where the muscles then work through the thoracic region. I continued to work the trigger point path working through the bicep and over the forearm to the fingers. Essentially the entire region is like one continuous line extended from the jaw down through the rib cage, the arm and the fingers. And then suddenly I had done it. I completely released it. I regained full range of motion through my shoulder. Previously I had been unable to lay flat on my back due to the thoracic ache and swelling on my right side. Now I was able to do this completely comfortably. I was in heaven. Not only could I trace the entire muscle network, but I could sense correctly the entire nerve pathway of my neck and arms. It was like I could almost feel the electric current underneath my skin. I imagined a theory of trigger points, that they were like resistors, modulating and dividing up the current and bunching up in response, lessening the flow but causing pain in the process. But this was also an uncomfortable feeling as my arm felt like an ungrounded wire. All these deep concentration imaginings aside, I was happy enough with the result and I lay myself to sleep for the rest of the morning hours.

When I awoke, all the muscle knot triggers were back. I was crestfallen. Recently, in the midst of my worst suffering (I will recount my experiences in a follow-up blog), I repeated the same trigger point release actions and eventually got the same result, only this time, no sooner did I get to the end of this trigger point row ending in my hand that the top knot in the neck began to reform and seize up again. I held my just released hand trigger down as I went back up and re-relaxed the neck trigger. But it was like having a tiger by the tail. Something was hitting the button to fire up these muscle spasms and there wasn’t a blessed thing I could do about it. Like little weeds on steroids, they all came back within a few minutes.

So all told, I would say I have had essentially zero success with trigger point massage. But there is sort of seduction when you get into it, as with any physical habit of futzing with your body in ways you shouldn’t. Haven’t we all popped our zits or picked a scab? You think, this time I can get it to release. And you keep trying and this goes on for months. Again some might say I have failed by either overmassage or missing the trigger point entirely. As stated I think that trigger massage can be successful for those who don't have excessive nerve compression and have muscles that can relax. Sadly I am not that fortunate in this regard. I am trying to keep an open mind as to the cause however, as there are some other possible reasons for my spasmodic muscles outside of the nerve compression model that I am currently exploring. I will talk about them in a future blog.

Next time: To Hell and Back