My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Saturday, July 30, 2011

The judge hates me. Medical malpractice con't.

It was a shame not all the encounters, between opposing counsel and I, would be as sweet. Now that we had met, for the most part, we became what we were: adversaries.

Everything that required my presence was in Pittsburgh. I had to take the train up, stay in a hotel, and take a cab wherever I needed to go. I always knew when I had not made any points; Ed offered to drive me back to the hotel. When I proved issues in my case, suddenly I was back in a cab. My barometer as to how I was doing was the way I got back to the hotel.

A lot of paperwork went back and forth, interrogatories, admissions, deposition corrections, requests for depositions, requests for records, etc.

Ed rarely answered them in the timeframe required. I usually let it go because, at the end of the day, he did respond.

One time it was to my absolute advantage that he did not reply.

Admissions are questions that are admitted or denied. These were directed to Dr. Jannetta. "Were you in the hospital at the time of my surgery?" "Did you do the operation?" "Did you look at the pre surgican defensive tests before surgery?" "Did you tell Ms. Levy facial paralysis was a risk of the operation?" and so on. The sanction for not replying within the required 30 days was an easy one. All answers were presumed in the favor of the plaintiff. That was it. He did not answer, in fact never answered, despite repeated requests, so they were all admissible in my favor.

The other time he did not respond, I believe it was to interrogatories, I had to go to court again.

This time I entered a formal courtroom, a judge's bench up front. There was about about 70 people in the room, men and women, most with briefcases and almost all dressed in suits. They sat or stood, talking with each other in groups of 2's and 3's. I found a seat and sat alone.

I kept looking around for Mr. Olsewski. I continued to call him by his formal name, not wanting to be lulled into a feeling of familiarity with this nice guy, my adversary. He never came.

A clerk called the room to order and then called the cases, one by one.

The rules were simple. Called case by case the attorneys for both sides stood before the judge. One side stated what they wanted: the other side why they did not want to give it. If opposing counsel was not there to contest the request, they forfeited, and the judge ruled in the favor of the presenting party. This was not a specious rule, it was codified in the Pennsylvania Rules.

My case was called. I stood before Judge McGowan. Ed was nowhere to be found nor was his Ms. Theis, his recently added co-counsel.

"Your Honor, I would like sanctions put in against Mr. Olszewski, et al, if interrogatories are not answered within 30 days as opposing counsel has not provided the replies within the time frame stated in the request."

Judge McGowan looked down at me, dislike and disapproval written all over face. "I don't see opposing counsel here. I want you to go sit over there.", he intoned, pointing to a chair at the side of the room, away from where all the others sat. "I am going to have my clerk call Mr. Olszewski. I want him here to tell me he does not oppose your motion." "But your honor." I did get to finish my sentence. "Miss Levy, go over there", he again pointed, "and stay put until I call your name."

I had no choice. It was certainly not going to help me to argue with a judge; and who knows what could happen if I did. I sat, a child sent by the teacher to the "time out" chair, separate but in view of all. I felt and was humiliated.

I waited about 20 minutes. The door opened and Ms. Theis arrived. "Ms Levy, come over here." the judge ordered.

Against all rule of law, he said "Ms. Theis, Ms. Levy is asking for sanctions against you if you do not get the requested documents to her in 30 days. Is that okay with you?"

"That is fine, your honor."

"In that case, I am granting the motion for sanctions."

This was my first lesson in what the Pittsburgh court called law. They did not like self-representation, they seemingly did not like me, and what would become exceedingly apparent, they had a deep like for Dr. Jannetta.

Thursday, July 28, 2011

Intermission - roller coasters.

I saw an ad the other night (I do not recall for what). It showed folks on a roller coaster. The voiceover was: "10% of being on a roller coaster is holding on. The other 90% is letting go."

Letting go. I wanted to let go. I have yet been able to do so.

Years ago, through psychotherapy, I was learning some very upsetting things about my childhood and my life. Things that made me want to scream. But I did not.

The pain always made me want to scream. But I did not.

My life circumstance made me want to scream. But I did not.

I got an idea. I would do some things that I knew would help me let go, force me to open my mouth wide and let out the sound that had been silenced for so long.

I drove across country. When I got to California I went to Knott's Berry farm. They had those rides where you went up into the air and then was sent hurtling back down to earth. Surely that would force the fear out of me.

I tried two rides. The first was where you went up by yourself in a kind of encased platform. Then, suddenly, whoosh, you were let go, you and the cage flying downward.

I was lifted to the top of the platform. I counted to 5 waiting for the letting go. Suddenly the cage and I lurched quickly downward. As it started to go I took in a deep breath. And held it.

To my surprise I actually enjoyed it. It was terrifying but okay. Neither a yell of fear or even a sound of joy escaped me.

I tried a second ride where you went up in a chair, five people in a row, Once up in the air it was hard to know when they would release you; all of us go flying down to the earth. This one I did not enjoy but still, no sound from me.

I retuened home, no worse for wear. Mybe a year later my friends were visiting. They wanted to go to 6 Flags. I agreed, thinking now is my chance. I' will go on the worst ride I can think of, in terms of fear.

When I was a kid my mother took me to Wanamaker's department store. Among the things they had for the kids was a Merry-Go_Round. 1-2 minutes on it and I felt sick as a dog, yelling "Stop this! Let me off. Let me off!" Even swings set my stomach on alert. Dread, big carnival ride, those words went together.

Which is the most terrifying? A roller coaster. Speeding down a thin railing, nothing but space ahead of you, the feeling of going off into the void, crashing. Surely, this would force the screams out of me.

When I began having memories about being abused as a child I saw myself 'going away' while it was happening. Up, up into the air, it was nothing but a bad dream. It was not, could not be, happening.

I was on the coaster with my friend's husband and one of her kids. They were loving it. I cowered, afraid to breathe, repeating to myself, over and over, "This is just a dream, it is only a dream." When the ride was over and I got off and kissed the ground.

My fear had been overwhelming. Instead of the letting go, my body sucked in all the fear, all the breath, all the overwhelming dread. The scream would not come.

I think of this as I write about the malpractice suit. I did not want to be my own lawyer, I wanted someone to be there for me, to fight for me, to be my advocate. I wanted them to be my voice in the court, and, by fighting for me, to be my scream. To help allay the pain of my life and effort to stop the pain.

Wednesday, July 27, 2011

Maybe it won't be that bad after all.... Medical malpractice con't

All I had to work with were my parent's depositions, written statements that Kate had asked me to have them write, and my medical records. Other than that I had nothing.

I tried to find an attorney to take the case.

Each said essentially the same thing: "I will sue your lawyer but she has made such a mess of the malpractice case I am not willing to get involved."

Kate had children. I did not want to hurt them, I thought they would be financially injured if I sued her. I expressed this to some of the lawyers. Another issue of 'you don't know what you don't know'. They replied "It won't affect her children.". I had no understanding of how malpractice insurance worked and no one explained it to me. I could not understand how it could not hurt the kids. I chose not to sue her.

To this day I feel I did the right thing with the information I then had. Of course, had I known then what I know now I would have sued her. Her not knowing the first case had been thrown out of court was malpractice all on it's own.

The first thing I needed to do was write up a list of questions, called interrogatories. The other side had 30 days in which to answer them.

Because of the pain I waited months for the answers. If I did not have to read them and do more legal research so I could go to the next step I did not have to use my eyes. This was not something where I could do my usual skimming. I had to concentrate, read each and every word, many times, to make sure I understood each and every nuance. Finally I had no choice. The other side had to know I was serious about pursuing the case. That meant asking the court to put sanctions in place if no answers were forthcoming within a certain period of time.

I had to go to Pittsburgh to do this in person.

I arrived at the courthouse and found the room where this would happen.

I thought we would be in a courtroom but instead it was a regular room with the Judge sitting upfront. A number of people were sitting in groups of twos and threes, talking, reading newspapers or, I assumed, legal documents.
I was the only one sitting alone.

A young man came over to me. He asked if I was Ms. Levy. "I'm Ed Olszewski. I'm opposing counsel in your case." He was a nice looking guy, dressed in a nice suit. He did not look fearsome.

We shook hands then sat, not really talking much to each other once the pleasantries were out of the way.

Soon the session started and people got up and stood in line, in pairs, to talk with the judge.

Ed and I were next. I looked at him. I am not sure if the abject fear was visible in my eyes.

"Umm. Who is supposed to talk first?" I asked him. He smiled. "I'll go first."

We were now before the judge. "Your honor, Ms. Levy would like to have sanctions put in place against us if we do not answer her interrogatories within 30 days."

Judge Smith (pseudonym) looked very surprised. "Are you sure you want to do that?" Ed looked over at me and back at the judge. "Oh yes, Your Honor, that's fine." "Okay. If Ms. Levy does not receive replies within 30 days sanctions will be placed against you."

Well, I thought, breathing a sign of relief, maybe this won't be as bad as I thought.

Sunday, July 24, 2011

medical malpractice - Pt. 3. Didn't I see you with a lawyer?

Living daily with severe unremitting pain makes it difficult to see past the pain. Much of the time it is a minute to minute existence; can I do what I have to do merely to get through the day? Had I been able to see past the next 60 seconds to the long term maybe I would have moved faster against Kate.

She remained my attorney. I should have fired her as soon as I learned the other case had been thrown out of court and there was nothing she could do about it. A lot of life comes down to you don't know what you don't know, and because you don't know you don't know what to ask.

I had no idea Kate should have been reading the legal paper everyday. As a result there was no way for me to know it was completely her fault that the first case was gone. She made it sound as though she was blameless: it was not her fault, it just happened.

She promised she would be on top of the Jannetta case.

My aloneness needed to believe when someone said "You can trust me. I will be here for you" even when they had already proved untrustworthy. I prefer to think it was the haze of the pain and meds that made it harder for me to see clearly than just abject need and the lack of anyone to advise me.

My father was dying of A.L.S. He was in a wheelchair and losing ground. Nevertheless I had to be continuously on Kate to schedule his deposition.
Time was getting away from us. She continued to dawdle. Finally I told her if it did not happen soon he may well not be able to ever do it. Only then did she schedule it.

Absent prodding from me Kate moved at a snail's pace, when she moved at all. The phone calls were always the same; "I'm on it, Carol. Trust me. I am getting things done." My father received bills for phone calls, copying, letters she sent out and yet we still did not have an expert witness, I had not been deposed and she had yet to send out interrogatories or schedule depositions.

The other side took care of some of this, deposing my neuroophtahlmologist and requesting record upon record.

When I was finally deposed it was the request of opposing counsel. Kate was rarely the moving party. Did I know what neurosurgeons we should ask to be our expert? I would do some research or call around and give her names. She sent out the letters. They said "No." "I can't testify against Peter Jannetta. He is too big a name." or "He is my friend. I am sure there are other neurosurgeons you can find."

I wrote to Kate and called her. "What are you going to do? When are you going to do it? How come you haven't done (depositions, interrogatories, finding expert witnesses)? The answer was always the same. "I am getting to it."

I had offered to help do some of the research when we first met. Because of the pain I did not mean that I would be her assistant or paralegal but that is what I became, for both suits. It was too much for me to do, it was too much for the pain to do, and it was not why I had an attorney. She was supposed to tell me the theories of the case and what we needed, not vice-versa. Finally I had had enough.

I wrote her and her partners in the firm. "She is not doing the work and I am concerned this case will go down the tubes like the one against Dr. Martinez. Please help." Her partners did not reply. Kate did.

She sent me a letter stating she was petitioning the court to be removed from the case. This was a offensive move (on many levels). She did not want it to look like she was being fired.

Usually a client will find a new attorney before the old lawyer decides to leave a case. If it is done through the court the judge will try to make sure substitute counsel has been retained. The Pittsburgh court did not do so. It would be my first lesson in how that court did not always follow the rules.

I was now counsel-less. Either I let the case be tossed like Kate had the other one or I represented myself. There was no option.

I have A B.A. in psychology. I had never taken a legal class or watched a lawyer in action (other than on a TV drama).

I am not a lawyer. I would just be playing one in court.

Friday, July 22, 2011

A medical malpractice story, part 2.

The thing that did not change was the pain. It stayed the same.

The lawsuit was initiated in 1981. By that time I had had more surgeries to try and stop the pain.

The next one is the most relevant to the medical malpractice. It was to be similar to Dr. Osterholm's so very successful one.

Dr. Wilson entered the skull through the same area as Dr. Osterhom and Dr. Jannetta. He also found numerous blood vessels that were not supposed to be there. The operation was in the summer. Because summer weather was always easier on me, no wind and rare breeze, the pain was always somewhat better. I could not tell if it was summer or the operation that gave me slight relief. Within 3 months the pain was back to the pre-operative (winter, spring, fall) level. It would stay there for years and of course, the eye usage and movement pain still remains.

Why does this matter?

My lawyer received copies of the records from Dr. Jannetta as well as Dr. Wilson and the others. Dr. Wilson's surgical report was an eye opener. He wrote "I cannot do the (procedure I wanted) because of all the scar tissue in the area." He also noted he removed an acrylic plate.

The problem was neither Dr. Jannetta nor Dr. Gendell, his resident, noted the scar tissue. That meant it was not left over from Dr. Osterholm. The only explanation was it was from the Jannetta procedure. The other thing missing from the surgical report was mention of the surgical plate, put in by Dr. Osterholm and removed by Dr. Wilson.

All three surgeons had been in the exact same place. My brain is not that big. The plate had to have been obvious but Dr. Jannetta had not noted it in his notes. Maybe the reason was because Dr. Jannetta was allegedly across town with his son who was having an emergency appendectomy at the same time I was in the OR.

Dr. Jannetta has admitted, unabashedly, in his biography, WORKING IN A VERY SMALL PLACE, allowing a resident to operate on a woman who had just given birth. She had a brain tumor. The surgery was unsuccessful, she died on the table. Dr. Jannetta relates that when the resident called to tell him the patient had died he had to come into the hospital: he had not only not been in the OR, he was not in the building. It looked like the same thing happened with my surgery, that Dr. Gendell and not Dr. Jannetta had been the surgeon.

Because of the scar tissue Dr. Wilson was unable to help me. Had he been able to complete the operation he intended and his surgery not helped that would have been the chance you take. Had Dr. Jannetta's surgery not worked that would have been the chance you take.

The problem was that was not the chance I had signed up for. I consented to Dr. Jannetta's operation - to be done safely by Dr. Jannetta.

The pain could not be helped because the area was no longer available to that help because of the scar tissue.

So that was where I stood: Facial paralyis, an eye sewn shut, an inability to eat in public or drink from a glass, people staring at me, fear that I might inadvertantly catch a glimpse of myself in a mirror or storefront window. And surgical avenues to the extra blood vessels that caused the pain no longer safely reachable.

It was now completely in the hands of my lawyer.

Wednesday, July 20, 2011

Dr. Peter J. Jannetta and me.

To paraphrase Paul Harvey: here is a part of the rest of the story.

In an earlier post I wrote about what happened when Dr. Jannetta operated on me. He did what is called an MVD, a microvascular decompression procedure, more commonly known as the "Jannetta Procedure". This is why my parents and I trusted his word. The surgery was named after him. If not him, who would know more about the potential risks?

After the Martinez procedure there was concern about my eye because of the lack of feeling. As a result it was at risk of something getting in it without my knowing. I was told I needed to take extra care - to be aware of any changes in the eye in case there was something in it or another problem such as an infection.

Because the feeling was gone in my entire left face including inside the mouth I had trouble eating and drinking. I would sometimes miss my mouth when I tried to eat. I burned my chin a few times when I was unaware of how hot a food was. There was no way to tell when something was on my lip or mouth. Liquid spilled because I could not tell if my mouth was completely closed. I needed to use a straw to drink.

Within a few weeks I got better at drinking and eating. It was not great but food stayed in and I could drink directly from a glass. The effects of the Jannetta Procedure ruined all that.

My mouth did not close on the left side; food did not stay in my mouth, I could not tell if there was food in the left side of my mouth. It fell out every time I ate. I could only eat if I had a mirror and checked it each time I took a forkful of food. I was embarrassed to eat anywhere but in the privacy of my apartment. Anywhere else I pretended to eat and hoped my hunger could wait until I was somewhere alone.

The paralysis no longer allowed me to close my eye. It turned bright red and stayed that way. The ophthalmologist at Pittsburgh Presbyterian told me there was a chance the eye would not be able to sustain its health. Between the lack of feeling and now the paralysis it had lost all its protective abilities.

It dried out. I had to use artificial tears every hour. He did not hold out a lot of hope that it would be able to sustain itself for a long period of time.

He was right.

I returned to my parents home. The eye got redder and redder. I was out of the hospital for only a few days before it got so bad I had no choice but to have it seen. I went to Wills Eye Hospital. I was told to lubricate it as much as possible and come back the next day.

The following day I was sitting in the exam chair. Dr. Arentsen, the doctor who had seen me the day before, was standing behind the chair. Into the room walked another ophthalmologist. He stood at the door, many feet away from me. "Why didn't you do it yesterday?" he asked Dr. Arentsen. "It is so ugly. I did not want to do it to her." he replied, as though I was not in the room. He was talking about sewing it closed. It was devastating to hear. It was more devastating to see.

I was taken down to the O.R. as soon as a room was free. This was a true emergency. Using just an IV valium, they sewed the eye closed.

I was so upset that this had happened but I thought How bad, really, can it be?, it would look like I just had one eye closed, a permanent wink. No. It did not.

The eye was closed on the left and the right side of the lids. They did this by suturing shut top lid to bottom lid. Ultimately it would heal together like a cut. There was an opening in the middle so they could examine it when need be. It was disgusting. Mt stomach lurched when I saw myself the first time. It was made worse by the stroke-like appearance I now had as a result of the paralysis.

I thought I could write more but it is harder to write than I thought. Maybe this is the cathartic part.

Monday, July 18, 2011

Intermission: Will power and Chronic pain.

A reader posted a comment to an earlier post. "Will power can't stop the pain." she wrote. No, it cannot.

That made me think of the strange way many of us in chronic pain are lumped together with other disorders people do not understand/do not want to know about/do not like.

What other problems do people have where the answer is often "It just takes will power to get over it."? Let's see: alcoholism, drug or other addictions. Some psychiatric disorders, depression comes immediately to mind.

When you have acute pain people rarely say "Oh dear, you broke your leg. If you exercise it the pain will stop." "Root canal? Just stop thinking about it, it'll stop hurting."

These remarks are okay to say to people in chronic pain. "If you would just get out of bed and stop thinking about your pain it would stop."

When my trigeminal neuralgia was bad and the pain still triggered by the merest of touch I was told by doctor(s) and family, "It's only a little breeze. That can't be causing you pain. You're making a big deal out of nothing."

Because of my eye pain, which includes sensitivity to light and movement, being in eyesight of lit candles is pain provoking. "The light and flickering of the candle can't be bothering your eye. You're making such a fuss over it. Leave it alone" I was told when I asked if anyone minded if I extinguished the flame.

Others with bodywide pain disorders, such as fibromyalgia, and CRPS (chronic regional pain syndrome - which affects every part of the body and is similar to 'trigeminal neuralgia of the body' as one person described it to me.) describe family, friends, coworkers, saying to them "We're tired of your complaining about this pain you say you have. Just get over it. Enough is enough."

"You say you have."?

It is the issue, as always, of invisible disease. If it is not seen: why even when you have a cold you sneeze, your nose runs, your eyes tear, then is it really there? And if it is not seen then it must be something you can get over if you just had enough will power, enough tenacity of mind, a strong enough spirit.

Understanding the name of a disease gives that disease the right to exist. Cancer, MS, diabetes. Those are invisible but we hear the names over and over. We know people who have one or more of them. We know the treatment. We are familiar with the terms: chemotherapy, steroids, insulin. We know will power has no place in the protocols, other than in being able to withstand the treatment.

Will power does not have a place in the treatment of depression. Some addiction and alcoholism treatments may include the ability to control one's actions, to fight off the urges, but that has no place in living with chronic intractable pain. And shame on those who think it does.

Saturday, July 16, 2011

Book Banned, Pt. 3: I had to sue my father.

(The facial pain association (formerly the trigeminal neuralgia association) has yet to respond to my 3 emails asking why I cannot post to their FB wall. Another person notified me they 'liked' the page and posted about my book. Their post was removed. The only conclusion is that they are afraid their members will find out about my book. None of what I have been writing about, re: the medical malpractice, is in the book. Here is the beginning of the story:

I had to sue the first doctor who left me with the numb face, mouth, etc. After Dr. Jannetta paralyzed my face I read my chart. The record included the defensive presurgical facial nerve test which showed injury to my facial nerve. The physical proof was the loss of taste and feeling in the left side of my mouth. That happened after the rhizolysis procedure. Both, Drs. Jannetta and Martinez, appeared to have committed malpractice.

The next step was to find an attorney. 'Kate', Catherine Miraglia Lecky, agreed to take the case. She befriended me, and assured me she was dedicated to 'getting' both these doctors for what they had done to me. Unfortunately she did not get the experts she said she would nor send out interrogatories (questions to other side that they must answer within a certain period of time.) or take depositions despite assuring me again and again that she was doing the work. (I was in NYC, she was in Pa. so I had to rely on her word.)

The case was on contingency, her fee was 33 1/3 of any award or settlement. All out of pocket costs would be borne by me. My father signed an agreement stating he would pay them. She charged for one medical evaluation (The written report states that the chart did not contain enough information to make a decision.), phone calls, copying charges, time reviewing my hospital records, etc. It was running into the low thousands. My father paid her by check.

For some unknow reason he decided the defendant, Dr. Lucas Martinez, had offered $10,000 to settle the case. That never happened. Nevertheless he decided, because I would not accept this imagined offer, he would no longer pay Kate. Without funding she could not go forward, so the case stalled.

I had to sue my father. I had no choice.

This was not something I wanted to do but he left me with no other option. No matter the proof of the malpractice he refused to change his mind. (I think he did not want me to have money. If I did he could not continue to have control over me as he did once I became disabled. He was paying my rent and medical insurance (thankfully and I appreciated it very very much, but it allowed him control. At one point he did not want me seeing a particular surgeon. I did and for three months he withheld the rent. Luckily the landlord and I got along and he let me stay until my father finally started paying it again.)

He and Dr. Jannetta have something in common. My father lied on the stand. And he, too, got away with it.

The case was heard in small claims court. No lawyers, I was up first. I asked my father "Did you agree to pay out of pocket costs to Kate Lecky? "No." he said.

I took out a cancelled check, signed by him, made out to Kate. "Did you pay any money to Kate?' I showed the check to him and to the judge. He looked at it. "I never paid Kate Lecky."

I had the check, complete irrefutable proof. It did not matter, the judge ruled against me.

I told Kate to wait for him to pay before taking any more action. By that point the amount owed was a few thousand. Anything mmore she did, deposing people or finding a reliable expert for instance, would be very expensive.

I tried, again, to work it out with my father. I warned him, hoping to get him to honor his word, that I would be taking it to the county court. He would not budge.

In taking the time to try and work it out I missed the appeal deadline.

I am not a lawyer but was able to write what is called an 'appeal nunc pro tunc'. I asked the court to allow the case to go forward despite missing the deadline. The court ruled in my favor. My father immediately backed down. A check was sent to Kate. As soon as she got it she promised to get the case back on track.

Problem was, I trusted that she had been doing the least of what is required by an attorney even when they are merely waiting.

There is a legal publication called THE INTELLIGENCER. A lawyer needs to check it everyday because each day all new court decisions are published. Have your case settled, won, thrown out - it is there.

Kate did not look, at least related to my case, for the 6+ months it took before my father started paying her again.

She called me a few mornings after she received her check.

"Carol, I have some bad news. I called opposing counsel. He told me the case was thrown out of court 6 months ago. Carol, I am very sorry. I'll appeal. Hopefully we can get it reinstated."

I had no one to advise me. My father certainly would not and even if he did I could not trust his motives. I agreed to wait and see what happened with the appeal.

In the appeal she wrote she had not received written notice from the opposing lawyers. She blamed the post office, the letter never arrived. It was no surprise, based on her reasoning and lack of the barest of attention to the INTELLIGENCER, that the Judge ruled against us. The case against Dr. Martinez was gone: there was nothing to be done about it.

What about Kate Lecky, Dr. Jannetta and me? That will be the next post.

This is the Martinez ruling summarized:

Wednesday, July 13, 2011

Odd doc sayings (and sightings)

Quotes from my docs or folks I have known who are docs: (Just a sampling.)

"This is the kind of x-ray that when you see it you want to leave the room and vomit." The orthopedist looking at an x-ray of my neck.

"If you jump out the window we are only on the second floor, you'll just break your ankle." My neurologist visiting in my hospital room. The remark was unrelated to anything I had ever said to him.

"Are you high yet? Are you high yet?" Same doc after he put a cocaine saturated Q-tip up my nose.

"There are times like today when I believe in her pain." Written in chart by above doc but his disbelief never expressed to me.

"I'm going to expose myself." Another neurologist, whom I adore, said so I would blush making my forehead birthmark redder and proving the birth defect.

"I am not a very good doctor but because I know that it makes me a good doctor because I send my patients to other docs." Said by a family friend.

"I got through medical school only because I have a photographic memory."
Explanation by a doctor I had worked with on how he became a doctor.

"Seeing you in person is the difference between reading about England and going to England." A neurosurgical resident explaining why the neurosurgeon changed his mind about operating.

(This I did, and did not, want to hear.)
"What you are saying is very logical so I will operate, even though I think there is only a 25% chance it will help you."
Neurosurgeon after a lengthy conversation with me. (And good for him, he actually listened to me.) The surgery did not hurt, whether it helped I am not sure because I was always better in the summer.

Seen in the facial pain specialist dentist's office:
A room full of men and women, some sitting, some reading, some knitting, some chatting, all of them with a cocaine saturated Q-tip sticking out of one nostril.

"Most women have to stand in line to get a look at me."
Said by a very good looking surgeon to a woman in coma, to see if she would open her eyes. (I do not know how she resisted but she did.)

"I like you more this time." A neurosurgeon that I disliked who evidently also disliked me, when I was readmitted to the hospital.

Nurses told me this one:
While I am waiting in line in the pre-op room downstairs, my neurosurgeon and his resident are seen rushing into my room - to get chocolate out of my top drawer.

Seen in my top bedside drawer: All sorts of chocolate candy, especially Chunkies, so my neurosurgeon would always be able to get one when he came to my room. (Always want to keep your neurosurg happy.)

"I don't think we're going to find anything." Dr. Osterholm the day before he was to operate.

"I didn't think we would find anything." Dr. Osterhom after the surgery, which immediately stopped the pain, and showed the dozens or more of extra blood vessels that were causing it (and were proof of the birth defect.)

Monday, July 11, 2011

Don't send that letter!

They say if you have very strong feelings about something someone has done to you write a letter but do not send it. I wish I had kept that counsel.

I wrote a letter to my brother in law. Could you tell me why my sister Cynthia (pseudonym) treated me in the way she did?

When I was cast in my first show, CAROUSEL (lowest of the low professional-nonunion dinner theater) she promised me she would come. The show ran every weekend, Friday, Saturday, and Sunday, for 3 months. The second show, HELLO DOLLY, also ran for 3 months. She never came but repeatedly renewed her promise that she would.

Once I moved to NYC I never heard from her other than to be invited to her house for Christmas. I came but was not received warmly.

The pain had started and I was having all my surgeries, treatments, and procedures. Cynthia was offended by how I looked when I was bald from the first surgery. She insisted I put on my wig before she would come into the room where I was staying.

After the facial paralysis and sewing closed of my left eye she told me "If you take off your sunglasses (which I wore to cover the way I looked when I went outside) in front of my son you will never be able to see him again."

She used to work in a hospital. Often she would see people in terrible distress, broken bones, bleeding, etc. To be offended by the way I looked was offensive but there was nothing I could do. I did show her son how I looked because he was so curious, always talking to me looking only at the hidden left eye. He was fine, Cynthia was livid.

Each year I made a pinata for the kids. The worst year was the one she told me "Take the pinata in the room off the garage. Make sure you clean it all up after they open it. I don't want a mess." She did not come in to watch, willing to not see her kids have a good time if it meant she was able to hurt me.

Ironically the one other time she called (other than the Xmas invites) was to ask me to do a favor for her. She wanted me to talk to her grandmother (we were half siblings, this woman was no relation to me) with whom she had not spoken nor seen since she was a little girl (she was now in her 40's). She wanted me to show this woman pictures of the grandchildren. I am not sure why - either why she wanted her to see the pics or why I agreed to do it, but I did.

It did not go well. "You are the issue of the new husband." she said to me. I showed her the pictures. "I do not know these children and it is too late now." It was sad but I had done what Cynthia asked. I told her what the grandmother said. She did not thank me or call again.

Years passed and I was no longer even being invited for Christmas. I was essentially a non entity to her.

I cannot go into everything that happened related to my mother. Suffice it to say I was asked by the family trustee to find a placement for her. She was in rehab and had to be out in 3 days or the insurance would no longer pay. I found a very good facility for her. Instead of the 3 half siblings being grateful that they did not have to do it and glad that she was in a good setting they told others I did it so I could take her car and wanted her money.

My mother was starting to do better but needed to stay there. Nevertheless they removed her from the facility. I was not told but found out when I went to visit. "Your siblings took her out. The doctors told her it was against medical advice but they did it anyway. They told us not to call you." Sometime later, I believe it was months, she had a stroke. She was in the hospital and dying, but no one called me. The day after she was admitted her home health aide called to tell me.

I went to the hospital. She had a second stroke and was in coma. In one of those strange things that happen: one afternoon she opened her eyes and was awake and aware, even being able to sit in a chair.

The sisters were there. I came into the room and started to talk to her. They and my brother had done their job well. Instead of her being happy to see me she looked at me with abject hatred. They had succeeded in convincing her I was out to steal everything I could from her. I do not think I have ever been so hurt in my life.

At my mother's funeral people who used to know me and like me were outright nasty or ignored me completely. Friends of this one sister were the nastiest.

A few years later I received an email from my brother. "Cynthia has cancer and does not have a long time left."

I knew there would be no point in calling. Instead I went to her house and left the card and gift I had bought for her. I never received any acknowledgement, from anyone, about my having been there or what I left.

I was invited to the funeral. Strangely one person told me "Cynthia liked the gift you gave her." Why would she tell someone else but not let me know? Very odd.

Cynthia's treatment of me gnawed at me. The hurt and anger festered until I decided to sit down and write a letter. I thought let me address it to her husband because if I was to send it, which I won't, I will never get a reply.

John (pseudonym) and I had not talked in ages. He and I had never been close even when his wife and I still were. (I used to babysit the kids, be there for holidays, even stay over at her house at times.)

The letter included the question: can you give me some idea of why Cynthia treated me the way she did? From not coming to the theater to not being there for any of my surgeries?

I looked at it in my 'draft folder'. Day after day. And then one day I said "The heck with it. He will never answer me." and sent it to him through facebook. To my amazement he replied.

He wrote "It was an accumulation of her reactions to you." It was also related to the way I treated our parents, he added. Hmmmm. My father was there for 3 of the first 6 brain surgeries, my mother for only 2 of them. Cynthia was there for none of them.

When I started to have memories of abuse as a child I sent her an email asking about it. She replied, circumstantially verifying that I had been abused as a child. ("You were precious and then suddenly you became very hostile to the both of them.") The way I treated her, and them? How about the way they and she treated me? How about the lies she told about me to her friends and her children (Cynthia's one grown child was outright rude to me, and the other barely acknowledged me, despite the very close relationship we had when they were children.)

The anger remained and festered. Now I had an answer that hurt me even more, because it was not true and put it completely on me. You cannot refute this sort of thing. No one really wants to know the truth.

I think this post is supposed to a cathartic one. I am not sure it is but maybe a start (I hope) on letting the anger and hurt go.

I have written before that I like to have some kind of moral or something to make this blog, and the posts, more than just one of confessional pieces.

Here is the lesson: The folks who say "Don't send it." are right.

Saturday, July 9, 2011

Pain screams, cajoles, and inveigles.

The first surgery worked, wonderfully. I was ecstatic, and stayed ecstatic. My neurosurgeon, Dr. Osterholm, told me to give it 6 weeks of recovery before getting back into life. 6 weeks to the day I went out looking for a job. I interviewed at 3 places and accepted a job as a clerk at HOUSE BEAUTIFUL magazine. Everything was on track. I liked the job. I quickly made 2 friends. As soon as my hair grew back (they had shaved me bald) I intended to start auditioning and taking classes again. The blood vessels in that area of my brain had a different plan. They grew back, and the pain attacked me with the same suddenness and ferocity as it had the first time.

To this day I say if I were to meet Dr. Osterholm in the street and he said "I know how to fix the pain." I would lie down in the middle of the road with my arms out wide. "Go ahead." My trust in him then, and now, is complete and total.

I felt the opposite about his resident, Dr. Martinez. I did not like him and the feeliing was mutual. He was not a nice man. He was someone in whom I had no faith.

Why then did I agree to let him operate on me despite knowing it was a terrible decision?

After the pain returned Dr. Osterholm said he would admit me to the hospital for a reoperation. Once I got there he decided that was not the safest way to go. Instead he wanted me to have the thermorhizolysis procedure. (I had had a similar procedure done about a year prior to this. It was done in NYC. The surgeon did it with me awake and used a novocaine type medication instead of heat. It was torture, total and complete torture. It was of no benefit. The upside was there were no side effects.)

"I don't know how to turn on the rhizolysis machine. Only Dr. Martinez can do it." Dr. Osterholm told me. I knew that a reoperation made the most sense. After all it worked the first time. Dr. Osterholm insisted this was safer. I truly believe, then and now, he was looking out for my safety and best interest.

I knew in my heart of hearts this would be a disaster.

I could not get Dr. Osterholm to budge. It was the procedure performed by Dr. Martinez or nothing. No one suggested any other or that it might be worth getting another opinion. (Had my family been interested enough or involved enough maybe someone might have thought of this idea. I was too embroiled in the pain to be able to look past one minute to the next.)

Choiceless, or at least convinced I was, I agreed. I did not want it, I definitely did not want Dr. Martinez to do it but...what else was there?

The pain screamed at me. "Do something!! Stop me!!" I listened to the pain. I should have listened to my heart, my logic and intelligence.

Within a few hours after the procedure the whole side of my face was numb. Numbness was a risk but supposedly only in the affected area. Instead I lost all feeling forehead to jaw. I was told I could lose the feeling in my eye. I did. I was never told TN pain could be added to the part of my face where it had not been. It was. I was never told I could lose the taste in my left mouth and tongue. I did. (This is a partial list.)

Pain screams, cajoles, and inveigles. Logic and intelligence are not as cunning.

When it comes to making the decisions that will affect the trajectory of the pain and the rest of your life, the volume knob of pain needs to be turned to mute. Only then can you hear the soft whisperings of sense.

Thursday, July 7, 2011

re Banned book.

The fact that the trigeminal neuralgia assocation would be more concerned about their doctor than their mission is outrageous.

The irony is that I never talked about the malpractice case against Dr. Jannetta when I wrote the book.

It is time to do so now.

I had one procedure that worked but then the blood vessels grew back that were the cause of my pain. Not the artery falling against the nerve that is the Jannetta theory however.

I have a birth defect, a sturge-Weber syndrome (partial) identified by my neuroophthalmologist. It was easily diagnosed. I have a birthmark that turns redder with any emotion. Most birthmarks do not have a blood supply. The change in color was evidence of the extra vessels in my brain. It covered, exactly, the pained area.

Dr. Osterholm, the first neurosurgeon, cleared out as much of the extra vessels as he could. I awakened completely painhfree. Unfortunately left was a tiny red area, about the size of a dime. It was a sign some vessles were left. It grew and grew til the whole area was covered again; and the pain came back just like it had the first time. Suddenly, and without warning, a knife through my temple.

Dr. Osterholm had another surgeon do a procedure I was not happy about, feeling it was safer so I agreed to have it done. Dr. Martinez, his colleague, did a thermocoagulation rhizolysis, using a heated needle to try and burn the nerve to death.

Somehow instead of just getting the fifth nerve (trigeminal) he also got the 9th (glossopharyngeal - I had trouble swallowing) and the 7th (facial nerve). The whole left side of my face was numb, including my eye (the eye was a known side effects as was losing the feeling in the affected area. Losing the feeling in the whole face was not.) I also had no feeling or taste in the left side of my mough and tongue, from the facial nerve, a nerve he was supposedly nowhere near.

Three months later I was sent to see Dr. Jannetta - because he was the authority. His surgery was known as the Jannetta Procedure.

I will not go into item by item but I wanted to be an actress, that was why I had moved to NYC. With no feeling in my face I worried can my face be visibly injured?

I asked Dr. Jannetta, and his resident "Can my face be injured in any way?"
"I promise you" said Dr. Jannetta, "your face cannot be injured in any way."

I asked a number of times. My parents were there for this surgery. They asked too and were given the same promise. "Her face cannot be paralyzed."

I awakened in the NICU (neurosurgical intensive care). The left side of my face was paralyzed 100%.

Dr. Jannetta came to the NICU. He stood over me. 4 times he rubbed his fingers together next to my ear. "Can you hear this?" I could, each time. He said nothing about my face. And then he left. Literally. He left the country to give a lecture in Germany. I would not see him again until 8 weeks later, in his office.

At no time did he, or his residents in his absence, suggest physical therapy or anything that might help the paralysis to recover.

Instead I was discharged from the hospital with no instructions other than to keep a watch on my eye. I had lost all the feeling in it from the last procedure. Now it had no feeling and could not close. The jeopardy to it was great. So great that within a day of coming back to my parents home to recuperate I was at Wills Eye Hospital having to have the eye closed (sewn shut with sutures, called a tarsorrharphy)) in an emergency procedure. I was told that it would have to remain closed permanently. I had it opened a few months later against medical advice. I could not tolerate the way I looked, the paralysis was bad enough but the eye being closed added to the nausea quotient. As a result I was getting infections or drying out to a dangerous level, sometimes weekly. I have had to have repeated tarsorrharphies over the years.)

I looked disgusting but became even more disgusted and sickened when I read the hospitl chart I got from the hospital when I decided to sue.

Dr. Mark May, a facial nerve specialist, saw me after the surgery. He wrote in the chart that a defensive test on the facial nerve, taken BEFORE the surgery showed 44% impairment of my facial nerve. That was the loss of taste. No one ever asked me about that part of the problem from the last procedure. The impairment shown by the test was a good sign that paralysis could happen.

In addition I read Dr. Jannetta's research papers. He wrote reoperations, especially after rhizolysis) are much more dangerous to the patient. The chance of side effects were much higher and should be done with reticence, if at all.

He has written in his biography WORKING IN A VERY SMALL PLACE about letting a resident operate on a woman with a brain tumor. He did not think she should have the surgery: she was pregnant so the risks were higher. Nevertheless he told the resident to operate. The patient died on the table. When informed Dr. Jannetta writes he had to come into the hospital as he was not only not in the OR he was not in the hospital. In my case his son was having an emergency appendectomy at the same time I was in the OR. The evidence, records and surgical reports, indicate he did not do my surgery.

He lied about the risks, in fact in two depositions he said facial paralysis was "a major and common complication." On the stand he said it was "unknown". (The Pa. Superior Court his testimony perjurious stating: "We have little difficulty in concluding that Dr. Jannetta's testimony at deposition was different than, or inconsistent with, the testimony at trial." Levy v Jannetta, CCP Allegheny County, GD 81-7689; appeal -J. A370017/92 Levy v Jannetta et al, No. 00150 Pittsburgh, 1992. settled, 1995.)

He ignored a defensive pre op test.

It appears he did not do the operation. He never saw me again while I was in the hospital. He never suggested any kind of rehabilitation.

A number of years ago I saw him when I went to a trigeminal neuralgia association meeting.

"Excuse me, Dr. Jannetta." I said. "I wanted you to know because of the paralysis I have had to have 4 fscelifts, a browlift, we took off a part of my mouth, all to try and mimic age symmetry between the two sides." As I continued, "I had them open my eye against their advice but because if that have had to have many tarsorrharphies." His response was to pick up the newspaper sitting on the chair next to him. He turned away from me and put it up to his face and appeared to be reading it.

This is the man who is more important than the members of the trigeminal neuralgia association.

If they truly wanted to get the word out about trigeminal neuralgia, to members and the general population my book is (and was) the way to do it.
I am sorry that partisan self serving interests trumped their lofty mission.

(This is their publishing policy, sent to me by a board member. My book was solely about my experience with TN, the fight to live with it and struggle against it, and has a happy ending. It falls directly into the policy, but for Jannetta.)
The Board of TNA determined that there was a need among patients to have access to published works specifically related to TN and other facial pain which works are informative, timely, accurate and supportive. A Publishing Committee was charged with implementing that policy and specific works have been published by TNA which meet that policy and others are in production, including a book which will include numerous patients’ stories about their battles with TN. TNA also sells books which are not directly related to facial pain but which have been determined to be inspirational or of other interest to our patients. In the case of your own book, since it deals with the subject of TN, our decision whether or not to offer it for sale was based upon whether the book meets our own publishing criteria. We determined that it did not meet our publishing criteria and, therefore, we declined to offer your book for sale."

Wednesday, July 6, 2011

My book was banned.

After my book was published I expected that, if no one else, the Trigeminal Neuralgia Association (TNA) would be excited that someone had written a book about their personal TN experience. There was no other book out there. Trigeminal neuralgia was, absent a storyline once on Matlock and once on The Bold Ones a pretty much unknown disorder. I know I had long despaired of finding others who had it. I looked for books, thinking I could at least read about someone else's pain. The only way that would happen was if I wrote one.

I wrote to the TNA after it was first published. My story was too harrowing, they said, but worse still, the doctor who paralyzed my face as a result of medical malpractice, Peter J. Jannetta, was on their medical board. It was much more important to not let their members know about a book written by one of their own if it protected someone of more import: a board member.

Why write about this now?

I have been letting a few chronic pain and trigeminal neuralgia sites know about the book and this blog. It never occurred to me to go back to the TNA site until a friend told me that there had been a board member change at the TNA (now called the Facial Pain Association). One of the people who refused the book was now gone. I presumed that meant maybe they were now open to letting the membership know.

It seems that is still not the case.

They have a FB page. I "liked" the page but they have blocked me from writing on their wall. That precludes me from writing or posting anything. Unfortunately it also disallows me from commenting on posts, such as the one from a woman who posted about a treatment that sounded promising against the eye pain, information very important to me. I guess they decided they still did not want their membership, those who suffer from TN and facial pain, to know that a book is out there. My truth about one person's fight against and struggle to live with this devastating pain threatens them. I had hoped by now their concern would be about getting the word out, not still protecting themselves and their group.

It bothers me that the powers that be are often, as in this case, more concerned with protecting their own to the potential detriment, or at least loss, to their membership, the ones who suffer with tn and facial pain.

(BTW, I wrote to them twice about my inability to post to the FB page but never received a reply.)

Monday, July 4, 2011

Where's my seat?

I went to church yesterday. The choir no longer sings for the next few weeks so I have to sit in the regular pews.

Usually when this happens I look for a couple I have gotten into the habit of sitting behind. That pew is one of the few that is not close to a stained window. I want to sit with people I know but my main objective is always to do whatever will minimize the pain. Being away from a window and the chance the sun will start streaming into the aisle and into my eye is of paramount importance.

John and Martha (pseudonyms) were not there. I had to figure out where my 'favorite' pew was on my own. I looked at the windows and thought I had the right pew. Nope, the window was lined up with the end of the row. Up I rose. I picked another seat. I was happy in this one. Two members of choir were sitting next to me. We were happy to see each other. I turned away from them and sat looking forward: nope, this one was also where the sun would set off the pain. "The sun is too much here." I felt I needed to explain to them as I looked around to see where I was supposed to sit.

I got up. I found another row. This one had to be it. It was, but by now I was feeling like an idiot. Did anyone see me going from row to row to row? Just in case I turned to the person next to me. "I need to be where the window isn't. I'm feeling a little like Goldilocks." He smiled. I had no idea if he had a clue as to what I was even talking about.

Without family or friends nearby church is my main place to go to be with people. Without choir rehearsal on Thursday and singing on Sunday, going to services is the only time of the week I get to see people I know, even if they are not 'friends'; very friendly, many of them, yes, but not friends, not someone I could call or who call me to say Hi or suggest getting a cup of coffee. The pain makes even this one day a fight.

Do I sit with people I know despite the sun making the pain worse? Church is already, at a minimum, a one codeine experience, even if all I do is sit in the pew and listen. Your eyes still move, to find the pew, to sit down, stand up, sit down again, acknowledge the people who do say "Hi." or talk to you. The pain comes without the addition of sun, of sitting with people you know and with whom you will have an active conversation.

Invariably I leave church more frustrated than when I arrived. All I wanted to do was be with people but being with them means the pain is worse, not only the emotional: talk revolves around the plans folks have for the weekend, the week, the holiday, their work, their children, their grandchildren but the physical too. It becomes the question that has plagued me all along, maybe even far back before the pain started. Where do I belong?

The holidays always make me think about the people who were supposed to be my family. It has taken me a long time but they are less and less in my thoughts despite living only minutes away. Their indifference made them and makes them a million miles away. But at a time when family is the emphasis of almost everything I hear and see it is hard to put them behind me right now.

Where do I belong? You know, right now I do not have a clue.

(As I write this I reread my words, pity, yes. Annoyance and anger? Yes. But I think it also speaks for most of us with chronic pain.

Where do we belong? We are marginalized by the media, the law, and by some in the medical community. We are looked at as hypochondriacs, drug seekers and abusers, addicts, as one person wrote me, lazy. We are victimized by the 'war on drugs". Where, do we, as people in chronic intractable pain, belong? I would like to think we belong with everyone else who requires ongoing medical care and therapies, including opiod when necessary. I would like to think we belong. Period.)

Saturday, July 2, 2011

"Narcotics are bad for you so they should be banned."

I wrote a post a few days back about opiod contracts. Since then 2 things have come to my attention. Otherwise I would let the subject go (at least for a while.)

There is a new drug Abstral. It is a pain medication, an opiod. The prescribing information states it is fentynel based, a Schedule II opiod, the highest level. The instruictions state it has "as an abuse liability similar to other opioid analgesics. ABSTRAL can be abused in a manner similar to other opioid agonists, legal or illicit. Schedule II opioid substances which include morphine, oxycodone, hydromorphone, oxymorphone, and methadone have the highest potential for abuse and risk of fatal overdose due to respiratory depression."

What makes it different from the other opiates? This one comes with a contract from the pharmacy, mandated by the government. In fact if you refuse to sign the release of information portion of the contract you will not be able to get the medication.

This is part of the FDA REMS (risk and management program). What makes it of concern to me is that now the consultation room has the government and the pharmacy in there along with you and the doctor. Since when was that room open to any and all comers at the behest of the government?

"Some people abuse pain meds, so you shouldn't have them." I was reminded of this mantra by one of our commenters here. (Please see her comment in the last blog. I am not my disease

I have seen this said in many posts and articles throughout the last few years. Sometimes it is said indirectly. Other times it is written outright: narcotics are bad for you, people abuse and misuse them, therefore they should be banned.

Invariably this is written by those who do not (thankfully) know chronic pain firsthand (or most probably even very severe acute pain.).

Insulin and steroids have been abused by athletes. Does this mean they should be banned altogether? Ask a patient with lupus, arthritis, asthma, MS, if steroids should no longer be available. Their answer would be the same as ours.

"I need the medication to help me cope with and live with my illness."

Guess what. So do we.