What Really Happened: Surgery, Spinal Cord Stimulators, Insurance, and the Reality of Trying to Get Fixed
It has been a couple of months since I last posted an update here. A lot has happened since then. Some of it has been encouraging. Some of it has been frustrating beyond what I expected. And some of it has opened my eyes to how complicated the process of getting medical treatment really is when you are dealing with chronic pain, surgery, disability policies, and insurance companies all at the same time.
This is the full story, from the beginning, in the order it happened.
A Year of Planning
None of this was rushed. For nearly a year, I worked with my doctors regarding two major issues: severe neuropathy in my right leg and increasing nerve compression symptoms in my left arm. There were consultations, imaging studies, follow-up visits, and careful discussions about risk versus benefit. I did not jump into surgery. I tried conservative options first. I asked questions. I weighed long-term consequences.
The neuropathy in my right leg is significant. It starts in the outer lower back and glute area and runs down the outside of my leg, into the calf, and all the way to the ankle and foot. The further down it travels, the worse it becomes. What makes neuropathy so difficult to explain is this: I have very little normal feeling in that foot, yet I experience intense nerve pain at the same time. It is a burning, electrical, stabbing sensation that does not simply turn off. I cannot wiggle my toes. Muscle control is minimal. When I first came home from the hospital after earlier complications, I could not lift my foot at all. I can lift it slightly now, which counts as improvement, but it is limited.
At the same time, my left arm had developed significant nerve compression. There was scar tissue and pressure affecting the wrist and nerves traveling into my fingertips. I was losing sensation. Weakness was becoming more noticeable. After evaluation, the doctors recommended surgery to release the pressure and remove the scar tissue.
The long-term plan became clear. First, perform surgery on the left arm. Then trial a temporary spinal cord stimulator to see if it reduced the neuropathic pain in my right leg. If the trial showed meaningful relief, move forward with a permanent implant. I wanted everything done consecutively so I could take one medical leave, recover fully, and return to work without repeatedly stepping away.
Originally, these procedures were scheduled for July.
Postponing for Work
Life intervened. At work, we had multiple employees injured and were already short staffed. Anyone who knows me understands that I do not walk away from responsibility easily. I made the decision to postpone my surgeries until October so my employer would not be placed in a worse position. That was my choice.
Everything was rescheduled. I reorganized disability coverage. I aligned the timeline so short-term disability would transition smoothly if necessary. I coordinated doctor appointments and follow-ups. I had it planned down to the details.
And that is when the first problem surfaced.
The Scheduling Breakdown
During the rescheduling process, someone reviewing my chart saw an older note stating that I had not fully consented to the permanent spinal cord stimulator. That note was from earlier in the decision-making process, before everything had been finalized. Instead of verifying it, the system treated it as current information.
As a result, when October approached, the permanent stimulator surgery had never actually been scheduled.
I discovered this only because I called to confirm the date. There was no appointment. I was told that in order to schedule it, I would need to see the specialist again. I had already seen the specialist. We had already agreed. But because of that single outdated note in the system, everything stalled.
If I had followed their standard timeline at that point, it would have taken another six to eight weeks to get back on the schedule. That would have completely disrupted my plan. My arm would have healed enough for me to return to work, and then I would have had to leave again for the stimulator procedure. That was exactly what I was trying to avoid by planning everything consecutively.
After pushing and explaining the situation, the scheduling issue was eventually corrected. But it should not have required that level of effort.
October 17: Left Arm Surgery
On October 17, I underwent surgery on my left arm. The procedure was designed to release scar tissue and relieve nerve compression in my wrist and hand. Surgically, everything went well. There were no complications.
Recovery was uncomfortable, but manageable. I can honestly say there has been improvement. I have more sensation in my fingertips than I did before surgery. There is slightly improved mobility. That matters.
However, the neuropathic pain from my elbow down into my fingertips has not disappeared. I had hoped that relieving the pressure would significantly reduce the pain. It has helped, but not to the degree I imagined. Nerves heal slowly. Sometimes they do not heal completely. That is part of the reality of nerve damage.
Four days after the arm surgery, I moved into the next phase.
The Temporary Spinal Cord Stimulator Trial
The temporary spinal cord stimulator was placed that Friday. The concept behind the device is straightforward. Electrical impulses are delivered near the spinal cord to modify pain signals before they reach the brain. If the pain signal can be interrupted or altered, the perception of pain can decrease.
The trial lasted more than seven days. During that period, I did notice changes. Certain areas of the leg felt different. At times, the sharp edge of the neuropathy seemed less intense. It was not a miracle, but it was enough to justify moving forward.
The temporary leads were removed. Fourteen days later, the permanent spinal cord stimulator was implanted.
The Permanent Implant and Expectations
From a surgical standpoint, the permanent implant went smoothly. Leads were positioned. The generator was implanted. There were no immediate complications.
What many people do not realize is that a spinal cord stimulator is not simply implanted and left alone. It requires programming. Adjustments. Testing different frequencies and waveforms to find the most effective pattern for the individual patient.
Since implantation, I have had multiple programming sessions. Some settings provide partial relief. Others do not. It has not been the dramatic, life-changing solution I hoped for, but it has provided some measurable benefit.
When you live with chronic neuropathic pain, you start thinking in percentages. If something reduces pain by fifty percent, that is significant. If it reduces it by twenty percent, that still matters, but it does not restore normal life. I am still in the process of finding the best balance.
Medications and Personal Responsibility
Throughout all of this, medications have been part of the equation. Pain medications. Nerve medications. Anti-inflammatory drugs. Each has benefits and potential side effects.
One of the most important lessons I have learned is that you must remain actively involved in your own care. Doctors are busy. They see hundreds of patients. Insurance companies follow policy guidelines. But no one is more responsible for your body than you are.
I now double-check medications. I ask about interactions. I monitor how I feel. Some medications help nerve pain but cause cognitive fog. Others help inflammation but create other problems. Managing chronic pain becomes a balancing act.
Short-Term Disability: The Weekly Cycle
Even though my paperwork clearly stated that I might be out until March 20, the short-term disability company required weekly updates. Every week I had to call and confirm my most recent appointment. Every week they conducted their review. On the fifteenth of each month, they would extend benefits by one month. On the fifth of the following month, they would issue payment for the previous month in multiple checks.
So while recovering from surgery and adjusting to implanted hardware in my spine, I was also navigating a calendar of administrative deadlines.
It was mentally exhausting.
Transition to Long-Term Disability
When short-term disability ended, long-term disability began. That meant switching policies, departments, and procedures. I was told I would receive documentation explaining what they needed. I never received it. I was told I would receive a phone call. I did not.
After waiting a week, I contacted them myself. During that call, they sent the necessary forms electronically. All they needed was updated medical documentation from my doctor.
Long-term disability pays differently. After the waiting period, you are paid once per month. One check. Not weekly. Not biweekly. And the restrictions and documentation requirements are stricter.
If that monthly payment is delayed, the impact is immediate.
The Frustration of Doing Everything Right
What frustrates me most is not that policies exist. It is that I did everything correctly. I planned for a year. I postponed surgery for my employer. I coordinated consecutive procedures. I organized disability coverage. I kept documentation. I followed instructions.
And still, scheduling errors occurred. Communication broke down. Paperwork was delayed.
I understand that doctor offices are overwhelmed. I understand that insurance companies operate within rigid systems. But when a patient does the legwork and still has to chase the system, something is wrong.
Getting fixed today is not just about surgery. It is about navigating administrative systems that often do not communicate well with one another.
The physical pain is one battle. The administrative burden is another.
Where Things Stand Now
My left hand is improved, though not pain free. My right leg still has severe neuropathy, though there has been slight improvement in movement compared to where I started. The spinal cord stimulator is still being programmed and adjusted. Long-term disability paperwork is being finalized.
And the next chapter involves Social Security, which is an entirely separate process with its own challenges.
I am not writing this for sympathy. I am writing it because this is reality. If you are considering surgery, plan carefully. If you are dealing with neuropathy, understand that improvement can be slow and incomplete. If you are navigating disability and insurance, document everything and stay involved.
No one will manage it as carefully as you will.
More to come.
