Guardian Angel

What is it called when a thing that was defined by necessity as "uncertain" changes its very nature to become redefined as "stable"? If I knew, I'd know how to title this post; as it is, I'm waiting until I finish to figure that out.

I ask that question because I've spent the majority of my life with a sword dangling over my head, almost literally. The accident I wrote of in "The Fall" left me with multiple complicated injuries that went undetected for many years, then went untreated for many more while a cadre of doctors from the four corners of the Continental United States poked, prodded, X-rayed and examined me and collectively threw their hands in the air about what, if anything, to do to help me.

Eventually, in 1984 when I was 25, I had cervical spine surgery to correct a herniation with complications I will never truly understand. This happened at Loma Linda University Hospital in Loma Linda, California (east of Los Angeles). Four years later, I had another cervical spine surgery at the same hospital. That surgery was botched but I wouldn't find that out for 18 years.

After Loma Linda, I went to USC University Hospital for Pain Management. When my symptoms seemed to indicate more of the extensive damage in my neck might need surgical attention (again), I was sent to the Neurosurgery Department at USC. There I found a wonderful doctor, Dr. Stillerman, who put off surgery, thinking it wasn't time to do more than keep me as stable as possible -- my collection of neck braces was impressive -- and see how I progressed. He was replaced by Dr. Samudrala who has turned out to be my guardian angel.

In 2004, I went in with my annual MRI for my annual visit with Dr. Samudrala and he looked at the new films and said I needed C-4/5 corrected as soon as possible, which turned out to be a week after that appointment, on my 45th birthday. Surgical techniques had changed over the years so this experience was vastly different (better/easier) than my 2nd surgery 18 years prior. Once I'd healed (this time, a plate was implanted so I had no neck braces), Dr. Samudrala told me he thought I'd need at least one more surgery in the near future. So I continued to be monitored by my Pain doctor and saw Dr. Samudrala as needed.

He soon moved on to Cedars-Sinai and I followed him there for annual check ins since he was the one doctor out of dozens I've seen who spoke to me honestly and simply as one person to another. He then moved to Glendale Adventist Hospital and I followed him there, too. So, two years ago -- in 2013 -- when the little finger and ring finger on my left hand went numb overnight, my first thought was "Oh, shit, it's my neck" and I immediately contacted Dr. Rever, my Pain doctor, who ordered a new MRI and, when she read that report, told me to go see Dr. Samudrala, which I did.

At that point, Dr. Samudrala was no longer doing complex surgery. He said he thought I needed both C-3/4 and C-6/7 worked on and that would be a long, hard, delicate surgery so he wanted me to go back to USC. Which I did. This was in August 2014. The doctor I saw at the USC Keck Spine Center sorta wasted a few months treating me as though my injury was new, ordered a CT scan and flat X-rays, then ordered an EMG (because my left arm from the elbow down was tingling/numb even though I had elbow surgery to supposedly correct that in early 2013). After all that, he said he wasn't comfortable operating because he didn't think he could do enough to significantly aid me in getting better. He sent me to UCLA.

After days and days of phone calls, I got an appointment but it turns out the UC system doesn't take my health insurance (I have individual Blue Shield and no one wants to take individual insurance) so I arranged to see someone at UC Irvine (they mislead me, telling me they did take my insurance but, as stated already, it turns out no UC hospital will take me). So, frustrated beyond belief, feeling helpless and aggravated and in pain and exhausted, I turned back to Dr. Samudrala for help.

He'd told me months before that, if necessary, he'd help me get in to Cedars-Sinai and it turns out they will take my insurance. But...

I had an appointment yesterday (April 9) at Dr. Samudrala's new private practice in Pasadena and the news was both really good and really bad.

Let me back up a moment. When I spoke to Dr. Samudrala on the phone after the visit to UC Irvine, he calmed me down with a few words of support and reassurance and told me to go see him. Two weeks after that conversation, which eased a lot of severe stress for me, came my appointment yesterday.

He looked at my test films (CT, MRI, X-ray) then came into the room, sat down near me, looked me in the eye and said, "Let's see what your reports say". These were the reports from USC and the test reports. So he read them sitting there with me. Then he looked at me and asked what my main symptom was and I said what I've told every doctor, "Pain". I have no obvious neurological symptoms: no paralysis, no weakness in my limbs, no obviously treatable issues that can be traced directly back to specific injured nerves, herniated discs or bone fragments.

He asked me to refresh his memory of the surgery that he did 10 years ago so I did and he said, "Now I'm remembering. Actually, I'm remembering the nightmare." The look he gave me spoke volumes. He told me he remembered opening me up and seeing a mess inside, that he probably should have cleaned out more bone but he was mainly concerned with correcting a rapidly moving forward bend to my spine that was impinging on the spinal canal at that time. So he did that, put in the plate and closed me up. That was a long enough surgery.

A few weeks later, when I returned for my first post-op visit with him at USC, he said he thought I'd need at least one more operation "by the time you're 40". As I said, I turned 45 on the day of surgery. He can't tell age very well I don't think.

He was pleased with my healing and, three months later, after spending all that time healing at my parents' house, Dr. Samudrala released me back into Dr. Rever's hands.

Back to yesterday. After reading all the reports and looking at all the films, speaking to me and listening to me, he said, "The reason no one wants to do any surgery is because it's too dangerous and no one wants to make you a quadriplegic.” He said that if where we were sitting was “1” and the moon was “10” on a scale of how dangerous surgery would be for me, I'm at about 7 ½ to 8, far too dangerous right now. And I agreed. So did my dad, who usually goes with me to these kinds of appointments just to be a 2^nd pair of ears.

So, while Dr. Samudrala scared me with the prospect of the danger of surgery, he reassured me that my neck is pretty stable right now. “You grow bones where you shouldn't be growing bones,” he told me. “The entire right side of your cervical spine has boney growths.”

He said I could go see one of 2 doctors at Cedars-Sinai but they won't do surgery on me, either. I see no point in putting myself through unnecessary doctors' visits, not to mention the drive from east of L.A. to Beverly Hills.

All of this was scaring the hell out of me, you understand, and I walked in to the appointment beyond stressed. The past two years have been their own kind of hell that no amount of description will truly describe.

I, of course, asked where this left me and he said it left me with him. He wants to see me again in 6 months. Then he did the most remarkable thing anyone has ever done for me. He'd been holding my hand throughout this discussion but he squeezed my hand and said: “I'm not going to leave you. I'll always be here for you.” I must have looked as struck dumb and as amazingly grateful as I felt because he said, “Does that make you feel better?” and I nodded and said, “You have no idea. You're going to make me cry.” He said it was okay to cry but I held off until I'd made the appointment for 6 months from now and Dad and I left the office. Once in the hallway, though I sorta collapsed against the wall and started to cry. I was overcome by his compassion, his honesty, his reassurance, his humanity not to mention the cancellation of the on-going, threatening near-certainty that I'd need a 4^th cervical spine surgery.

A weight that was becoming almost too heavy to bear lifted off of me yesterday and I've been in a bit of a mental muddle since.

My next step will be back with my Pain doctor now that we have a clear, realistic view of my physical situation. Dr. Samudrala said that now I need to treat my pain. I need to medicate myself, something I've been loathe to do for many years. I have a cocktail of pain-blocking meds but they only work so much. I've had prescriptions for narcotic-strength pain meds for many years but have rarely used them. I need to use them now. And I need to ease the hell off myself. I've had to be strong for nearly 35 years. It's hard to relax from that kind of hyper-vigilance.

It's going to take some experimenting and a lot of work on my part to learn how to be this new evolution of myself, this person who is truly a chronic pain patient. I've known that's described me for many years but I never really accepted what that means and it's going to take a little while for me to internalize, understand, and accept this new designation. But I will work it into my world view. It may take some time but I'll get there.

This post is by way of me expressing just how important Dr. Samudrala has been -- and continues to be -- to me. This is why I tell people that if they're uncomfortable with a doctor or what a doctor says doesn't ring true, then that isn't your doctor. Keep looking for the right person who fits your needs. And I think I just found the title of this post.