In December 2005, I had a decompression (foraminotomies) of C4-5, 5-6 and 6-7 on the left. Two months after surgery, I began to have pain in the right side of my neck, and my right shoulder, arm and hand. My shoulder atrophied. My pain worsened until I could not use my right arm. My spine surgeon said the problem was not in my spine. He sent me to a neurologist who ordered an MRI of my shoulder. It showed extensive damage, including tendon and rotator cuff tears. I was referred to a shoulder surgeon.

He gave me a steroid shot for a cyst in my shoulder (which dealt with the cyst, but did not affect the rest of my shoulder pain). He referred me to therapy, which caused flares of severe nerve pain all through my upper body, no matter how careful the therapist was. He said he would not proceed with arthroscopic surgery, since he felt that most of my pain was not from my shoulder; and he was afraid he would make me worse.

I began to have radiculopathy in all four limbs so severe I could not walk, after exams during which I did the range-of-motion test for the cervical spine. My spine surgeon kept referring to my “pain syndrome.” He said I “did not need” an MRI and cut me off. It was my impression that my other doctors, who were all in his medical group, were refusing to say what they really thought, to protect him (and I was right).

My neck, back, chest and arm muscles atrophied. I had constant severe aching pain deep in those areas, and very obvious nerve pain (aside from the radiculopathy).

My life since surgery has been nothing but pain and fear. I am unable to work, unable even to walk very far. I had to move in with friends because I could no longer take care of myself without help. I can’t take pain drugs because I took them for so long that I developed severe acid reflux and a bleeding ulcer. I finally have that under control; I won’t take any more drugs.

I have seen three spine surgeons, two shoulder surgeons, an EMG specialist, and a physiatrist. At this point, we can say that that the foraminotomies (without fusion) caused my spine to shift. I have problems at C2-3 and 3-4, where I never had problems before. My spine is kyphotic; weakness and imbalance in my spine cause constant pain and spasm deep in my neck and back and constant headaches. I have radiculopathy along the C6-7 path.

I am much more disabled now than I was before surgery. My new injuries are on the right; and I am right-handed. No doctor will do shoulder surgery because they feel the problem may be entirely in my spine; and I would be unable to do therapy after shoulder surgery.

My most recent doctor is a specialist in failed spine surgeries. He said he has seen what happened to me many times over. With a spine like mine, I should never have had foraminotomies. He proposes to do a fusion of C4-5, 5-6 and 6-7, which he says should take care of 80% of my symptoms.

What I have at the moment is not what I consider a life, but with one failed spine surgery already, I wonder if proceeding with fusion isn’t the beginning of a slippery slope that will never end. I am very worried about fusing three levels. I know surgeons lie—or, to be charitable—give you an overly optimistic assessment of what their surgery will do. My previous surgeon did not inform me of my real risks. I asked him if decompression without fusion could lead to instability; and he said no. Here I am.

My others doctors have said that if this were their spine, they would leave surgery as a last resort. One of them noted that my spine could shift again if I have a new surgery. I will of course discuss this with my doctors, but I would like input from anyone who has faced a similar decision. What are the questions I should be asking?