New here, but not to ON
Hello all. I was told about this forum from someone on a different forum. I'm just happy to have found a place where people are actually talking about ON!
A quickie history on me - I was rearended at a redlight. It was not a "serious" car accident, but did have some serious physical consequences for me. In the 3-1/2 years since my MVA, I have had two major cervical spine surgeries. In the end I am fused from C4-5, C5-6 to C6-7. The first surgery was 2 levels with donor bone, the second surgery was a redo of one level, and ACDF to C4-5 (my third level), but this time with bone from my own hip. I spent four months in a hard cervical collar, and three of those months wearing a bone growth stimulator for several hours a day.
About six months after my first surgery I had the onset of ON. I have had every injection from ESI's, trigger point, radiofrequency ablation, etc to every level of my spine and to the greater and lesser occipital nerves. Nothing helped for more than a couple of hours, and in the end it is believed that the high doses of steriods that were injected lead to a bout with high blood pressure (not typical for me) and a newly heard heart murmur. I am happy to report both have since disappeared. I have tried anti-hypertensive meds to releive the pressure in my head, and high doses of anti-depressants (although I have never been depressed). We were hopeful that the second surgery would help to relieve some of the pain. It hasn't and the pain has actually gotten worse.
I am unable to sleep in a bed, and haven't in the 3-1/2 years. I sleep in a recliner where at any time during the night I can easily shift my position off of my head and spine by simply changing how far I do or do not recline. There are some nights, however, where the pain to the back of my head is SO bad, that I have to sit straight up in my chair, feet on the floor, my lap full of pillows and I lean face first into them. Thereby actually sleeping on my own lap.
I have seen two different PMs. My second one is wonderful, and he is the one who has done everything listed above. He has in turn referred me to a new PM doctor out of state for a new procedure - an occipital neuromodulator - in an attempt to help to alleviate some of my pain.
Last week I made the FIVE hour car ride to a doctor who, after my consult with him, informed me that I am in fact a good candidate, and he will be implanting a trial run of an occipital neuromodulator. The goal of this is to provide pain relief for persistent neurological pain that has not responded adequately to other treatments. It is designed to relieve neurologically based pain, but it does not eliminate the underlying problem that is causing the pain.
The occipital neuromodulator delivers electronic impulses directly to the scalp where the peripheral occipital nerves are located. By stimulating these nerves, minute electrical impulses travel in the area of the brain that perceives chronic neurological pain and alters the perception of that type of pain throughout the body. It is only effective in relieving pain that is neurological and has become chronic. It does NOT block the ability to perceive new sources of pain, known as acute pain.
I am keeping my fingers crossed that this trial will bring me relief. If successful (meaning 50% pain relief, 50% of the time), then I will be scheduled to have the device permanently placed - the permanent surgery being done in another state (six hours from home) by a peripheral nerve specialist/surgeon.
I know this is a newer procedure, but was wondering if anyone here has heard of this, has any personal experience, or knows of anyone having undergone this? I am always up for learning more about something I am going to have done!
Thanks in advance for any comments. Again, I am so happy to have found a place where people know what I am talking about. I am looking forward to getting to know you all.
5/05 MVA rearended at red light
11/05 C5-6, C6-7 ACDF w/instrumentation. 5/06 CT confirmed failed fusion C6-7. '06-'07 cervical (all levels) and occipital ESIs, trigger point injections, blocks, RFAs etc.
7/07 Removal of hardware, revision of C6-7, ACDF C4-5 with iliac crest bone graft at both levels. Aspen Collar and bone growth stimulator for 3 mos.
11/07 Thoracic MRI revealed T11 wedge deformity, angular kyphosis and small central disc protrusions at T11-12, T7-8, T3-4, T4-5, T5-6 and DDD.