The pain in my legs has been steadily increasing since just a few weeks after the surgery when the stimulation from my Spinal Cord Stimulator (SCS) implant stopped reaching my legs below my knees. My doctor said the hardware (computer in my back) is working properly and the leads (wires in my spinal cord) haven’t shifted, but because of where they were placed, I’ve lost coverage in my legs where I need the SCS to work the most.
He had placed the leads in an area of my spine where he hoped to get coverage of my back and abdomen while also covering my legs from hips to toes with the two thoracic leads. This was quite ambitious, as there was little margin for error and any movement of the leads or minute changes could cause a loss of stimulation to my lower legs. Which is what has happened. The other two leads travel up into my neck and the one for my left arm works well while the one that stimulates my right arm never has and instead produces a lot of nerve root irritation.
There is only one way to get it back – a “revision” surgery to adjust my SCS, which is scheduled for March 15th. We had discussed the possibility of implanting a 2nd SCS, but Medicare and Medicaid refused to pay. So we went back to the drawing board and decided that we will pull the thoracic leads (which are supposed to stimulate both legs) down, losing all abdominal coverage to gain full leg coverage, and replace the lead in my cervical spine which is supposed to be stimulating my right arm.
The second surgery will bring me back to ground zero in terms of my healing progress. It is expected that my pain levels and healing will be similar, as the operation is nearly identical to the one I had last year. The same movement and lifting restrictions I’ve obeyed since my December 14 surgery (which I must still strictly obey) will begin for another four months, followed by intense rehabilitation.
Keeping It Real….
This has been a very tiring season and though my recovery from the first surgery has been going well (minus the SCS complications), I’m more exhausted than I thought I would be. I was expecting my healing and the SCS ‘saga’ to be completed within six months from mid-December. Realistically, I can now anticipate this requiring nearly a full year.
Regarding Dysautonomia, I was scheduled to go to Vanderbilt Uni in Tennessee (one of five specialist centers in the USA) for testing and treatment of my Dysautonomia in April, but that appointment–for which I’ve waited nearly a year–must now be cancelled. I don’t know how long it will take to get another appointment. When you have Dysautonomia, you are advised not to hold your breath [ little dysautonomia joke there 🙂 ].
Friends, your help and your company have been greatly appreciated. Please don’t underestimate my gratitude! Thanks for being strong for me and holding me up. Your encouragement helps keep me focused and on the right path. I know that God is bigger than the situations, surprises, sleeplessness, sicknesses and surgeries I’m facing. There are no justifiable reasons for me to doubt His care and faithfulness. If anyone should be able to testify that “God has brought me through” and point to many examples along the way, it should be me.
Keep me in your prayers, please! They say “it’s not over till it’s over.” We have a ways to go yet.
Love and thanks,