Email: pfrumkin1@comcast.net
City: Bloomfield Hills
State: MI
Country: USA
Diagnosis: Anesthesia Dolorosa
Date: 01/30/07

Twenty-four years is a long time to have AD; a single day is. When it first occurred, I was 30 and moving up in my law career. That was ended instantly after the surgery—a complete trigeminal rhizotomy via the posterior fossa, plus sectioning of the VII nerve, which controls tearing in the eyes. Near-enucleation of eye occurred three months later … truly a case of the most staggering medical negligence at the Mayo Clinic.

I have been asked to speak to patients suffering chronic pain. Thus far, I have declined because there are still days when the pain gets the better of me. But I do consider myself a success, as I returned to the profession eight years later, after a year-long rehabilitation that I designed.

On not a few days, I do not “notice” the pain at all. It is interesting that the degree of pain rises instantly when I talk or write about it. It is rising now. I think I have trained my mind to not pay attention to the pain. I have to: I would never be able to do my work otherwise, and my work is being, literally, a lawyer’s lawyer. I do research and writing for my lawyer-clients, and they usually give me their most difficult cases. I spend my days reading legal texts and writing. Pretty high level stuff for someone with AD.

I have tried many off-label use drugs … or they have been tried on me. I currently take 10mg percocet four or five times a day. My body and mind are comfortable with percocet, as I’ve been prescribed since the fateful surgery in 1982. I also take 400mcg Fentoral for breakthrough pain. It is an effective drug, but lasts only a short time. And for me, it is also not as mind-friendly as the percocet, so I take it with some reluctance and caution.

I could describe my immediately-post surgical state and the next ensuing years in detail, but I think they are pretty much what you’d expect: researching medical texts in the Wayne State University Medical Library (in Detroit); months-long stays in a psychiatric unit; feelings of helplessness and hopelessness. Also, a couple attempts to check out of this world, not because I wanted to die (oh, no … I loved life), but because it was the only way I knew of to stop the pain. I was not ready for this kind of pain. I did not know an organism of any kind could suffer this kind of pain and still live. I was angry when found and revived, and today I am so thankful … beyond words thankful… for that. The pain is difficult enough for anyone, but when it is caused by brutal negligence, obvious deviation from the standard of care, and coupled with lying to the patient, that pain joins anger, and they can be a disastrous mix. It took me a long time to forgive the Mayo Clinic physicians involved. I had to forgive them … not for them, but for me. Resentment is a powerful tonic; it is best tolerated, if at all, in very small doses, and I had to let resentment go before it consumed me.

Today I am a happy person, happier than most I know. It was not easy to get to that place, but once there, I firmly believed that if you’re happy with where you’re at, then it makes no sense to resent the path that brought you there. Yes, I have severe pain. Yes I hope for a cure. But I also have a life---with my family, with my friends, with my hobbies (I’m a vinyl record nut) and with my work. I don’t think I could have recovered without being able to work … it was that important to me. My greatest victory in life is not achievement is law school (2d in a class of 250); rather, it is that no one would know I’m in pain if I did not tell them so. Well, I’ve shared enough, not having been asked to!

But I did want to tell you that recovery as a human being, as a functioning person, as a family member and as a professional is still possible despite this condition. AD takes enough away from us; the remainder must be treated kindly and with nurture to grow. Later, I hope to describe my recovery in greater detail.

More about My Recovery

I partially expand on my prior posting, hoping that someone may benefit from it.  My journey began with cluster headaches, which eventually became chronic.  In 1982, my neurologist (Joel Saper of Ann Arbor) referred me to the Mayo Clinic in Rochester, Minnesota, where he said they were doing a new surgery to interrupt the pain signal in the relevant nerves.  While I had been a fairly well read patient concerning cluster headaches, this time I did not venture into the medical texts—I felt that Mayo was the best of the best, and that I should just trust them with my well-being.  That fateful decision led to unhelpful self-recrimination for many years; indeed it is still with me, now some 24 years after the surgery.

Mayo presented an inexperienced resident as being fully qualified.  In fact, he had never done the surgery before (trigeminal rhizotomy via the poster fossa); had never been on a team that did it before; had never seen it done before; and didn’t read anything about this very technical surgery before doing it.  The resident, W. Richard Marsh (who still practices at Mayo), inappropriately cut all three sensory divisions of the trigeminal nerve; cut the motor cord that controls mastication (chewing); and cut the 7th nerve that controls lacrimation (tearing of the eyes).  Generally, the greater the destruction of the nerves, the worse the resultant pain can be.  When I visited Massachusetts General Hospital some six months later, they physicians (including William H. Sweet) said they had never seen so much destruction.  It turned out that Mayo was not doing any “new” surgery, but the opposite.  In a study they did not tell patients about, they wanted to use the old, dangerous, high-morbidity posterior fossa surgery and see if bad results (chief among them, anesthesia dolorosa) were still obtained even though modern surgical methods were used.  You can guess the result of that stupid study, and maybe only contemplate on the pain they inflicted on the 12 patients, including me, they intentionally subjected to the old surgery. 

Anesthesia dolorosa is an affliction that occurs secondary to damage to the trigeminal nerve.  It is similar to ghost or phantom pain after an amputation.  Basically, the cut end of the nerve on the brain side of the nerve gives off pain signals that the brain interprets as coming from the (now numb) side of the face where the nerve was cut.  The face is without “real” sensation; a pin could be put through my eye without my knowing it.  Yet the face (including the eye, tongue, cheek, teeth and gums, and forehead) feels these terrible, constant pains … as if someone were pressing a massively heavy anvil against my face; like a great weight were upon it; a terrible cramping sensation in the teeth and gums; and like pepper had been thrown in my eye.  These pains are constant.  Sometimes I’ll have short-lived pains, and these are quite disturbing.  It feels like some powerful insect is eating my eye, nose or lips; these are the “hold your breath” pains until they subside.  The surgery (and more importantly, the amazingly negligent follow-up care instructions) also caused me to become blind in my left eye.  A six-month long battle to save vision failed, and a surgery was performed to cover-up and protect the blind organ … leaving me with a ghostly, milky-white eye.  I now use a contract lens-like prosthesis for cosmetic reasons. 

These pains were new to me.  I didn’t know there was pain that a sufficiently strong medicine could not take care of.  I didn’t know there could be pain without cure.  I didn’t know that an organism could endure such pain and not just cease to exist because of it. And I didn’t believe that a person in such pain could live for long.  In the next two years, I would attempt exiting this world three times, not because I wanted death (no, I loved life), but because I saw it as the only way of ending the pain.  When I was found, hospitalized and revived, I seethed with anger: how dare you tell me how much pain I have to live with.  Now, and as I will tell you below, I am grateful beyond words that I was kept alive. 

The pain immediately ended my career.  I had chosen to become a lawyer.  I graduated second in a law school class of 250, and was selected by the law school dean as the Outstanding Law School Graduate of 1978.  I then clerked for a federal district judge in Detroit (a prestigious appointment), and subsequently went to work for the firm I chose to work for.  These were matters of great pride to me, as you might imagine.  And now, in one moment, that was all gone.  I couldn’t even follow a magazine article, so great was my pain.  Legal work was out of the question.  In the two years following the September 13, 1982 surgery, I spent one-fourth of the time on psychiatric wards … because of depression from the pain.  They told me they thought they could treat the depression independent of the pain.  I thought that was ludicrous, because I knew the pain caused the depression.  But time would prove them right, and I am both lucky and grateful I stuck around long enough to learn that. 

I received Social Security disability as a totally and permanently disabled worker.  No one ever expected me to return to work, no one including me.  My life was miserable; I felt like a ghost inhabiting a body wracked with pain.  I become reclusive, fearing that my now-facial asymmetry made me look monstrous.  My house became the full extent of my world.  I sued Mayo.  My first lawyers—Ed Stein of Ann Arbor and Ty Bujold of Minneapolis—were bought-off by Mayo and its then-in house legal crook James O’Hagan of Dorsey & Whitney, and they tried to lose my case.  I was able to show some of this and I got a second trial.  O’Hagan could not be Mayo’s lawyer at the second trial because he was in federal prison on unrelated misconduct involving the Mayo Clinic.

The second trial resulted in a jury verdict of more than $1 million.  But on appeal to the U.S. 8th Circuit Court of Appeals, Judge John Gibson took it away.  Using a procedure never used before nor since, he concluded that some issues were properly determined in the first trial, and some in the second … and so he picked and chose between the two verdicts, always selecting the lower jury award.  This way, he came up with a verdict of $250,000, which was only enough to pay off legal expenses and accumulated debt.  A further request to appeal was turned down by the 8th Circuit.  Now, my anger and grave disappointment was towards my own profession, and not just the medical profession. 

Over time, beginning about 1989 (7 years post-surgery), a new type of anger came over me.  This was not anger towards the physicians involved, especially W. Richard Marsh, not was it towards the legal profession, especially Ed Stein, Ty Bujold and Judge Gibson.  No, this was different.  I began to refuse to accept that this was the last chapter of my life.  Damn it, this was not supposed to be the way my life ended—as a recluse living a life of pain and nothing else.  I had worked too hard, had done too well, and wanted to do more in my life than just sit … a blob of pain quivering in its misery, hidden and alone. 

I refused to accept my-then life as the remainder of my life.  I refused to accept the disability caused by the pain.  I refused to let anesthesia dolorosa be the total of my past and future.  I refused to accept that the “now” would become my “forever.” 

Newer antidepressants had been lifting, even if only somewhat, my depression.  On this subject, a little was a lot.  This improvement in mood was sustained despite the pain, which was the same as before.  I also began athletic swimming: first one mile a day, then two miles a day.  My longest non-stop swim was five miles. This helped a great deal. I had been unemployed for some seven years.  I contacted rehabilitation clinics and physicians, but no one knew what to do for me—they were mainly geared toward helping manual labor.  So I designed my own course of rehabilitation.  The key problem as I saw it was that my confidence was shot; I didn’t know if I could perform high-level legal work again, and I felt like the perfect legal malpractice target.  I could hear the would-be trial, and being asked “You mean you took this case, so important to my client, even though you could, by your own admission, barely concentrate? 

Although my background was commercial litigation, I contacted a friend who had a personal injury practice.  I told him I had good news and bad news.  The good news was that I would work for him for a year … free.  The bad news was that I would need a lot of hand-holding; that I might come in for ten hours or ten minutes, and that when I said I had to go, that meant I had to go.  Fortunately, he accepted my terms, and thus began my rehabilitation and recovery, not just as a lawyer, but as a human being. 

I soon found that my fears were largely unfounded.  I could still do this work, even if I was slower than before.  I wrote a number of complicated briefs that won in court.  I regained my familiarity with the basic outline of civil law and recalled much of my teachings in law school.  By seven months into the year, I felt ready to apply to a commercial litigation law firm, but I kept my word, and stayed for a full year. I then applied to, and was accepted by, a well-regarded commercial litigation firm.  For the next five years, I was the highest-ranked associate.  Later, I would become an independent contractor of legal research and writing services for other lawyers, and that is the position I retain today. 

How, exactly, did my recovery work?  How could I now concentrate and write well when before I could barely follow a newspaper or magazine article?  I wish I could tell you step-by-step what I did and what you can do, but I cannot.  My recovery evolved; it was not sudden.  One needs to nurture those parts that still have ambition, that still want to work, that still finds excitement in this world, that still want to have fun and still want to love … in short, those parts inside us that still want to live as before … or better.  It took a great stubbornness not to let my pain be my entire existence, and not to let it dictate to me what I could do, and what I could not do, for the rest of my life.  It took long-term therapy, and group therapy was probably the most important.   

The road to ongoing recovery was still not easy.  Although no opioid could touch the pain of anesthesia dolorosa, at least alcohol could put me in a place where I didn’t care if I was in pain … and that was a tempting place to go.  Six years after returning to work, I got two DUI tickets in one month.  I realized I had a problem, and went into long term rehab.  It is now more than 10 years later clean and sober: no alcohol, no “street” drugs.   

And so I don’t anticipate my future will be without bumps in the road.  Perhaps I’ll start taking too many percocet; perhaps I’ll become depressed; and perhaps I’ll even sneak a drink (and, God, it hurts me to write that, but it’s one day at a time, and I have no guarantees).  But this does not sadden me, and I hope it does not sadden you, because it is my, and perhaps your, reality.  Believing the past is prelude to the future, I feel I can wage a winning battle with whatever comes my way now.  I have to remain vigilant; my ongoing recovery is not a certainty. 

Most of all, I have to treat myself with that degree of love and caring that my family and friends bestowed upon me, and you must treat yourself with that degree of love and caring shown you by your friends and family.  This was, perhaps, the hardest thing for me to learn.  I don’t know why, but inside me somewhere is this dark place where I blame myself for what happened at Mayo and for my pain condition.  It was a place I didn’t want to acknowledge, not to anyone else, and not even to myself.  Left in its dark and dank place, it festers and bloats with self-loathing.  It is a dangerous place that must be exposed.  To recover from it, I feel you must acknowledge its existence, address it, and allow others to address it.  Only by acknowledging this feeling can you receive what you need to hear: that no one blames you for your pain condition.  It is a liberating experience.  It is an experience I so greatly needed, and I believe it is an experience you need, too. 

Your recovery from pain may not include a return to work.  It may be returning to a hobby (or beginning a hobby), or it may be returning to enjoying your loved ones and your life.  Whatever it may be for you, the fruits of recovery and the joy of living still wait for you.  It begins with a decision that the current circumstances, and your response to them, are simply unacceptable. Where you go from there will be uniquely yours.  Along the way, please stop to cherish each new victory or step in your recovery.  Upon these will your recovery find its foundation. 

God bless and best wishes,
Paul
Bloomfield Hills, Michigan