I want to tell you about a medical treatment that is helping me. I have been having this treatment since December 2009, and it seems to be helping with the constant pain which resulted from my TM.
I was hit with TM in December of 2007. I thought I had ruptured a disc because of sudden severe pain in the thoracic spine with radiating pain and spasms around the ribcage. I woke up the next morning numb and partially (mostly) paralyzed from the chest down. Because it was during Christmas/New Year’s holidays, I went through about three weeks of trying and failing to see a doctor. Finally, three months later I saw my neurologist in Augusta, Georgia and was diagnosed with TM.
I had an atypical presentation with a longitudinally extensive lesion beginning at T1 and down through the Cauda. On the MRI it looked like one of those pine trees that had been hit by lightning and all of the bark peeled off in a spiral pattern down to the ground… except it was the lesion that spiraled around my cord. It was transverse in two segments. Somehow, through G-d’s grace, hard work, and stubbornness, I have been able to make a remarkable recovery of function since then. I still have partial numbness and weakness which can get better or worse depending on various factors. Resting can make it better. Illness can make it much worse. I still have significant problems with bladder and bowel control, but continue to work towards something resembling normal. The worst symptom has continued to be the constant pain – what I call the three levels of pain.
Level 1 pain is the deep nerve pain such as sciatica that feels like a lightning bolt or electrical current going down both legs, if I make the wrong move, sneeze, cough or overdo it.
Level 2 pain is at the muscular level and can feel soreness or burn like a muscle that has been overworked to the breaking point. This level of pain often results in sustained muscle spasms that just don’t let up.
Level 3 pain is at the skin level and can feel like a severe sunburn or at times can feel numb and painful at the same time – like when you play outside in the snow far too long, then come inside and try to wash your hands. The water may be cold, but your hands will feel numb and on fire at the same time. That is how my back feels 90% of the time at the skin level, especially around the thoracic segment where the band of my bra would be. This results in my not being able to wear the correct undergarments because it is just too painful. Add all of these together, and I deal with a lot of pain on a daily basis.
So, on to what is helping me. Since the diagnosis of TM, the weakness in my back has led to a continuing decline in the ability to maintain proper posture. My abdominal muscles are not strong enough to support my back properly. I believe all of this is related to the quickened degeneration of my spinal discs. I have developed six prolapsed discs in the thoracic spine and three degenerated discs in the lumbar spine.
In early 2009, my neurologist referred me to a neurosurgeon for evaluation of possible disc surgery. Two Neurosurgeons said they would not touch my back. The third is a doctor in the nearby medical community in Augusta, Georgia who everyone said is the best Neurosurgeon in our area. It took six months (October 2009) to get in to see him, but I waited because he was “the best.” He told me that he would do the surgery if it comes to that (and it may come to that in the end), but first he wanted to try something else. He referred me to another doctor in his group, Dr. Mark Stewart, Board-Certified Anesthesiologist, Fellowship-trained, Board-Certified in Pain Management. According to the bio on their website, “Dr. Stewart is an interventional pain management specialist at Augusta Back Neuroscience. He specializes in the nonsurgical relief of pain, including epidural steroid injections, radiofrequency treatments, sympathetic nerve blocks, facet blocks, sacroiliac blocks, peripheral nerve blocks, and many others. A host of pharmacologic agents may also be utilized, but the emphasis is on non-narcotic methods of pain control.”
By the time I saw Dr. Stewart in December, I could barely stand up, shuffled when I walked, could not bend forward and could not bend backwards. I had difficulty getting up and down. I could not lie down flat on a bed and had to sleep in a recliner chair. I was in a heap of pain. After a thorough exam he suggested Pulse Radiofrequency Ablation (RAF). He told me it was not to be confused with an earlier radiofrequency treatment that did not include the pulse intervals, and was not as successful. This treatment does not work for everyone, and there can be risks. However, it has given me more relief, for longer periods of time, than anything else we have tried since I began working on my recovery in March of 2008.
I’ll try to explain it in my own words, according to my own understanding. This is not a medical explanation, and I haven’t found a good explanation for this exact treatment. Although, there is an explanation for a similar procedure, Radiofrequency Neurotomy that mentions the Pulse method at Mayo Clinic’s website at:
Pulse RFA is done in two steps. The first step, called the diagnostic step, is to identify the nerves that are actually causing the pain. This is done by epidural steroid injections. Sometimes they inject numbing medicine such as Lidocane instead of steroids. They normally inject one to three levels in one procedure. This may be three vertebrae on the right or left side (i.e., L5, L4, L3 Right side), or both sides of one vertebrae. Two weeks later I go back for an office visit to evaluate the results of the injections. If I receive at least 50% pain relief that may last a day or up to a few weeks, then I qualify for the RAF treatment – which is step two. The RAF is generally scheduled for two weeks after this appointment. I believe the two week intervals are due to insurance processing and obtaining precertification, so this may not be standard in other practices or situations.
In the RAF treatment, Dr. Stewart has a larger team working to help him perform the procedure. I lie on my stomach on the surgical table with a large x-ray machine (Fluoroscope) positioned over the section of my back they will be working on. The operator of this machine takes live images of my spinal area which are projected onto a monitor for the doctor, his team, and me to see what he is doing. I am awake during the entire procedure so I can tell Dr. Stewart what I am feeling. It is imperative that I lie completely still, so medication is available to help me remain calm, if needed. Using special surgical needles, Dr. Stewart inserts a probe into the space where the nerve root ganglia is located outside of the spinal cord. Once the probe is in place, another member of the team delivers radio waves in pulses towards the probes. This heats the tissue surrounding the nerve root, which somehow interrupts the pain signal from the nerve to the brain. I usually feel a slight tingling of energy in the area of my body that the particular nerve supplies. For instance, RAF applied at the left lumbar level may feel like a low electrical current in the calf of my left leg, or my thigh, or my toe depending on which nerve is being treated. After applying a pulse of radio wave, it is turned off for a few minutes to allow the tissue to cool down before another pulse is applied. Dr. Stewart and the team constantly monitor what I am feeling and at the first sign of pain from the radio wave application, we stop to allow it to subside before moving on to the next area to be treated. The whole procedure takes about 30 to 45 minutes to complete.
I know this is not a medically acceptable equation, but I think of it as having a root canal on my spinal cord. However, the goal of RAF is to interrupt the path of the pain signal from the nerve to the brain WITHOUT causing any damage to the nerve itself. They always tell me that it may take anywhere between a few days to a few weeks before I feel the results of the treatment. But the morning after the very first treatment, I woke up and that sciatic nerve pain down my right leg was just flat out GONE! What a miracle I thought that was. What a blessing. That was December 14, 2009. Results of subsequent treatments have not been as dramatic or as immediate. Each procedure has been different, but each one has given me at least 50% or better relief of pain in that segment.
The down side? There can be risks which are listed in the article on the Mayo Clinic’s website: http://www.mayoclinic.com/health/radiofrequency-neurotomy/MY00947
The only side effect I’ve had is neuralgia in the toe next to my big toe, on my left foot. This doesn’t bother me all the time, but can flare up for seemingly no reason. I still feel it is a low price to pay for all of the overall relief I’ve had.
The other down side is that the relief is not permanent. The Mayo Clinic website says the relief typically lasts between three and six months. Dr. Stewart’s office told me their experience is anywhere between three months to a year. My first treatment was December 14, 2009 on levels S1, L5, and L4. I am just now beginning to experience more pain in that area again in the last week of September, 2010 – almost ten months after that area was treated. That is ten months that I have not been curled up in a ball, trying to medicate pain which can’t be medicated. It’s ten months that I have been able to stand straighter and walk with a gait so much more normal that often people who don’t know me can’t tell there is anything wrong with me. It doesn’t mean that I have been pain free. The results are varied and not every treatment gives 100% pain relief. I still experience a lot of pain in the thoracic spine. For some reason the insurance companies won’t cover RFA in thoracic levels, claiming it is experimental. However, for the areas that have qualified to be treated, the results have been amazing in my case.
I know that many people with Transverse Myelitis don’t have pain. Many can’t feel at all below the level of their lesion. However, if anyone else with TM suffers from any of the levels of pain that I mentioned above, I would recommend doing your own research into RFA; find a qualified, reputable doctor who performs this procedure, and talk to him about whether it may help provide relief in your case. I’m glad I was stubborn enough to continue looking for someone to help me.
Vicki McKie – South Carolina / Georgia Transverse Myelitis Online Support Group
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