I am a patient with complaints of residual pain in both sides of the lower body, including the buttocks, legs and lower lumbar spine. I have had a lamenectomy due to disk herniation and impedement on the spinal cord in 2000, followed by surgery to remove a blood clot from the spinal cord.
In 2005 I had my first lumbar fusion, which was successful, however later deterioration of the levels above presented leading to more severe and debilitating back pain with raditating pain the legs and buttocks.
In 2009, I was taken to the emergency room due to debilitating back pain. A complicated second fusion was performed in two seperate surgeries (one lasting 9 and a half hours and the second lasting five and a half hours). Following the procedures I lost feeling and control of my lower extremities. After rehabilitation and therapy, I have regained my ability to walk with concentration, no longer a normal, easy task, but requires thought and attention to my moves. I still lack sensation in several parts of my legs and feet and some muscle control is diminished despite therapeutic services. Since the surgeries in 2009, I have had residual lumbar, buttock and raditating pain bilaterally down my legs. I have continually been on medications attempting to control the pain, but complete relief has never been achieved. ESIs (Epidural Spinal Injections) have been done without success. There is a significant amount of scar tissue and hardware now in my spine and, reportedly by the pain management doctor,
significant nerve damage. Upon questioning whether the nerves might regenerate or repair themselves over time, the doctor informed me that he believes the damage is permanent/ irreparable.
Due to my condition, a spine stimulator trial was recommended by multiple physicians. In March of 2011, I had my first trial implant performed, which was unsuccessful due to CFS leaks where the leads were placed. I spent a week in bed with a constant and excruciating headache, which significantly worsen upon going from a horizontal position to a vertical position. I could not sit up to eat. I crawled on hands and knees to the bathroom. I cried out and sometimes would scream due to the pain. I had trouble moving my neck and would suffer unbelievable pain when I did. Nausea and dizziness also presented. Finally, the partner of the doctor who did the trial implant performed a blood patch. Sadly, the blood patch failed and the painful headache and neck stiffness and pain continued. A few days later, the partner, against the wishes of the orignal doctor, determined it was time to remove the stimulator and performed another blood patch immediately upon the lead removal. When the leads were removed the spinal fluid actually leaked out onto the skin of my back in a little pool. The doctor was shocked by the significance of the leak and apologized profusely for the suffering I went through.
A couple of weeks following the removal and second blood patch, I had a second trial, which was successful, but I admit I was very apprehensive about attempting the trial again after what happened the first time. Since all of this, I have experienced more than usual headaches and problems with orthostatic hypotension.
I am awaiting permanent implantation and due to the problems I have had with all of this, I am considering obtaining other opinions from other doctors to be sure this is the right choice for me considering all of my conditions and the complications that I have had.
A word of advice to physicians performing the spine stimulator trials, if your patient immediately, upond rising from the OR table, complains of a severe headache, do not send them home in hopes the headache will subside. I also recommend not performing such procedures on Fridays, as the patient is then left to suffer for a weekend. Per instruction from my doctor, I went to the hospital emergency room, where I was told by the anesthesiologist due to wires in my spine, he was not able to assist me with a blood patch. He was not comfortable attempting the procedure with the leads in place. Please leave at least one day for the any reactions or complications to present in order for you to have that day to take care of any complication. Please care enough about your patients to make sure you are there for any needs that may arise. Please do not leave your patient helpless at home with no options to relieve such complications.