My Story Begins

August 1, 2007

Join Susan as she begins her journey into the world of debilitating, chronic illness.

A picture for people coping with Ehlers-Danlos or other chronic illness.

by Susan B Spitzer, PhD

I always loved my work and took equal pride at my more traditional accomplishments at home, but I was never as comfortable with myself as I was during my mid-forties. I had arrived into adulthood and lived every moment to the fullest in the ways that I enjoyed the most.Throughout 2004, I could be seen picking out vegetables at the gourmet market on Wednesday afternoon with a Dictaphone in one hand and a cell phone head set attached to my head. On Thursday evening I would be cooking up a storm with my laptop computer in the kitchen running statistical programs and setting the table for Friday night. When we would get home from synagogue on Friday evening, soup would be simmering at the right temperature on the stove and the rest of the meal would be in foil packs in the oven at a low temperature. The table would reflect light from Grandma’s polished silver.

Although I had been a research psychologist since the early 1980’s, most of my work has been in the area of physiology with an emphasis on statistical methodology. My publications primarily focused on physiological responses to different types of stress, but my dream was to research the specific effects of trauma on mental and physical health. During the later years of my career, my dream was coming true when I was invited to join a team of scientists looking at war stress. The resulting data from this exciting study were becoming available for analysis and write-up at the time that illness entered my life. I was in the process of writing up my dream paper when I was stricken down.

As frequently happens when working in a research environment at a major University, several grant renewals came due at once. So, I had to put my dream paper down for a few months to work along with my colleagues to take care of grant business. It was during this time that I began to have female medical problems. They were unusual, painful, progressive, and unexplainable. I would frequently have to take Percocet while at work, so I arranged for a graduate student to watch over my shoulder and make sure I didn’t make any mistakes, which I of course did. This was my first feeling of defeat because I never used to make mistakes at work. The only medical explanation that was offered by my gynecologist (whom I adore) was, “You’re a freak.”

In November of 2004 I had a uterine ablation and in January of 2005 I had a hysterectomy. While recovering from the hysterectomy at home about a week later, I was ambulanced to the hospital with partial complex seizures. I had never experienced this before. I also had the most horrible headache of my life, although I had been having terrible headaches for about a year or two. That day I received my first orphan disease diagnosis: Idiopathic Intracranial Hypertension (also known as Pseudotumor Cerebri or Benign Intracranial Hypertension), which is basically too much cerebral spinal fluid pressure on the brain for unknown reason.

I was given medication which gave me some pain relief and partially retarded the blinding process from pressure on my optic nerves. Despite the horrendous medication side effects, I continued to work and returned to the front line outfitted with magnifying glasses to join my frantic colleagues in our desperate attempt at meeting all deadlines. Once all the grant deadlines were met, I was finally able to take out my beloved trauma paper to work on again. Apparently, however, completing this manuscript was not in the current plan for me.

Whatever was affecting my ability to work, pressure on my brain, seizures, medications, whatever, I could not understand my own work that I had done a few months earlier. As a matter of fact, I was not able to read any material in paragraph form. I tried so hard to read what I had done and tried to understand what I had written and understand the diagrams I had designed, but I could not. I was devastated. I had to put the trauma paper away again, with the hope that that part of my brain would come back someday.

So I went back to the simple, mundane statistical tasks that I seemed to still be able to do. Within a few weeks, however, those abilities were gone too. I’ll never forget how it felt to call my best friend, colleague, and boss to tell her that I couldn’t do it anymore and I had to resign my position. We had been having babies and working side by side since 1985. That was hard. It was hard to clean out my office and see my work in garbage bags lined up along the wall. The only work I saved was my beloved trauma manuscript in the hopes of regaining enough cognitive functioning to complete it in the future.

I’ve worked since I was 19 years old and never imagined life without a job. Not only did I always have a job, but almost all of my identity was synonymous with my work. Giving up my career was the hardest thing I ever had to do in my life. This marked the beginning of my battle with finding a new identity. Jeeeze. How many times do we have to go through adolescence before we graduate?

The summer of 2005 brought more physical deterioration, but spiritually I fought back with a vengeance. I hadn’t a clue as to who I was anymore, but I was driven to survive for the sake of instinct, love, and a past history of surviving the impossible. My abilities to walk and think were deteriorating dramatically and no one was able to offer any medical explanation. Not being able to comprehend the medical literature anymore, I began to rely on internet message boards not only for emotional support but also for my medical guidance.

Most of the time it was hard for me to understand the words posted on the message boards, not that they were complicated, but that my mind was mush. But by monitoring these message boards, I was able to put together that the acne ointment I was using on my face was responsible for vitamin A toxicity in patients like me and once I stopped using it, I was able to walk by myself as well as read some of the medical literature on the topic within three days.

Eventually I conversed with a scientist out of state who documented a case like mine (yes, it is published in a legitimate medical journal) and believes that most people who develop vitamin A toxicity through transdermal acne treatment wind up with psychiatric instead of neurological treatment. I rapidly learned to not be such a snob when it comes to medical information. By being taken down another notch in intellectual functioning through the vitamin A toxicity, I had to learn to get my medical information in other ways because the medical literature was out of my grasp.

I’m not saying that message boards can replace medical journals, but I am saying that people who suffer from the same illness have the potential to help each other immensely. It was the message boards and not the medical literature that got me out of my wheelchair that summer.

In November 2005 I had brain surgery. A ventricular shunt was implanted to take some of the pressure off of my brain. Within two weeks, I got myself a recumbent tricycle and finally found something to replace my work. A few months later, I was riding up to eight or nine hours a day and although I was getting very strong, the pain in my face was getting worse. The only thing that came close to alleviating this pain was my husband’s comments of: “If you think your face is hurting you, it’s killing me!”

Throughout our laughter, I also started developing numerous new neurological problems stemming from pain to impairments of my vision, speech, and gait. There seemed to be very little if any explanation for my symptoms, except of course for the frequent suggestions of histrionic tendencies (that means I was looking for emotional attention). I think that histrionic tendencies as a diagnosis has its place in medicine where it serves as an explanation for not-yet-diagnosed disorders just as frequently and inappropriately as when drivers only come to a rolling stop at a stop sign.

Jeeze, I wouldn’t have to put up with any of this abuse if I would just keep my mouth shut and tolerate my pain in silence. It felt like I was repeatedly being punished for speaking of my pain. Spinal taps to determine the level of my intracranial pressure at times did not make sense and were inconsistent with other clinical observations. Medical explanations ranged from honestly shrugged shoulders to cowardly accusations of Munchausen’s (I was doing something intentional to make myself sick for attention). When it was pointed out that it was impossible for someone to do something to increase their intracranial pressure that much, the response was that I was so intelligent that I could figure out a way.

Although I appreciated the compliments about my intellect and creativity, I felt as if I was a criminal and my crimes included: (1) speaking of my pain and (2) being smart. It was during this period that my personal war shifted from battles with illness to battles with arrogant medical professionals and, very frequently, their equally arrogant clerical staff. I learned from a very wise person that even though everyone may stop believing in me, all will be lost if I stop believing in myself.

No one in our local medical community had any idea what was happening to my body and since it couldn’t be seen on an MRI, I was usually dismissed as some type of annoyance left to deteriorate both emotionally and physically. It was my husband and minor daughter who carried the entire burden during this time and to them I am eternally grateful. Without them, I would have stopped believing in myself. Oy, I hate to think of the issues my poor daughter is going to have to work out for herself over all of this! Well, at least she’ll have something to talk about with her therapist, right?

And so, I learned to scrape myself up from the ground and to keep walking forward, despite the degradation offered to me by others. It helped when I figured out that when doctor’s are stumped, many of them become frightened and cope with it through anger as an attempt to gain control over the situation. Unfortunately, their anger usually hits the weakest person available: the patient. You should see it when the doctors disagree with one another. Man, the sh-t really hits the fan! Instead of being angry with each other, it all feels like it’s falling on you as the patient!

I learned to stand clear of the doctors’ frustrations by recognizing their human limitations, giving them their space to work in the way that they each need to work based on their own personality, and walking out of the offices of the one’s who are inappropriately hostile. Don’t let my brave words fool you, I still go home crying every time there is an uncomfortable encounter with a physician or any of their staff. Shortly after my brain surgery and during the turbulent times of 2006, I became disgusted with doctors who would look at a lab report and run their highlighter pens across the rows of values that fell in the ‘out of range’ column. I consider that to be clerical work and not part of the practice of medicine. I searched endlessly for doctors who were willing to think outside of the box.

I am one of the fortunate few who have family financial support to be able to pay out of network fees which brought me into a very small world of doctors who are willing and able to spend time thinking about my situation. I found a neurologist who has one of the most brilliant minds I have ever had the pleasure to know. There is no question in my mind or the minds of my family that I would not be alive today without his quick, creative, and courageous thinking. As for my supposed history of Munchausen’s, my new neurologist said at an early meeting that he felt that this might be a possible explanation, but if I was willing to pay him, he was willing to treat me, although he did not think it was possible for me to have manipulated my intracranial pressure. I do not consider myself above mental illness and I told the good doctor that I didn’t care what he wanted to call my illness or how he wanted to treat it; I just wanted to feel better.

I think part of having the courage to master life is to accept whatever is thrown our way, be it illness, arrogant doctors, or the prospect of our own sanity. Somewhere along the line I figured out that it wasn’t the accusation of a psychiatric problem that bothered me, but the withholding of medical evaluation and treatment that frightened me. So long as I received proper medical attention with the prospect of a future including quality of life, I didn’t care what field of medicine the diagnostic code fell under.

My neurologist’s belief in me allowed him to bring my body from a dangerously inflamed, hypercoagualable state, to one where I was not as imminently threatened by clots, ‘…floating around in the blood vessels of my eyes.’ Oy. During the summer of 2006, I became so incapacitated that many times I had to rely on others to turn my head for me while I waited in bed. The pain was horrendous, like battery acid pouring down my body. It was suggested to me that this symptom might be from a condition involving my brain stem’s sending out of control pain signals. I was told that there was nothing that could be done about it and no medication would be able to relieve the pain. I was facing a fate worse than death. This is when I began my spirituality struggle. Oh no! Adolescence again?

Throughout my entire life, I have always identified strongly with my Judaism. I was born a Jew, and I have chosen to live a Jewish life. I never, however, even for an instance, would suggest to anyone that the Jewish answer is the final answer for everyone. Judaism is my comfort zone and it is how I choose to live. When faced with the idea of my mortality, either through the direct effects of illness or from a decision to end my pain by my own hand, I hadn’t a clue about my thoughts on dying. The Judaism I practiced focused on living issues. I never really talked about dying with anyone. I knew all about comforting people who experienced loss, and I myself have been through the grieving process. I never, however, really explored my feelings on the afterlife.

You can imagine how this latest diagnosis of inescapable and eternal pain thrust me into a search for spiritual meaning. I am grateful to the many Christian people who saw my physical and emotional struggles during this time, but it was the comfort of my Jewish community that I cried for at night. It is my hope that my people will also learn to embrace the quality of compassion and nurturance for the weak and sick. While my Jewish community is filled with many loving and compassionate people, it is unfortunate that we are failing each other in providing ourselves with comfortable mechanisms to deal with these types of situations.

By accident, however, I met a woman on the internet who I refer to as my Internet Angel and her efforts, along with phone calls from a few people in my local community gave me a feeling of connection to my Judaism. The lack of responsiveness to my humble requests through the proper channels, however, was a painful pill for me to swallow and it rocked the very foundation of my faith. Eventually, over many tearful phone conversations with my grandmother, I emerged with my faith intact when it comes to God, but not when it comes to people. This battle yielded more emotional wounds than those left on me from the mysterious ailment that felt like battery acid.

While feelings of bitterness and disappointment have left me somewhat hardened and somewhat sad, my spirit did not die. Nor did my body die! Through some really fancy techniques by an anesthesiologist, it was determined that the nerve roots along my neck were, for some reason, very inflamed and a bunch more medication and some nerve blocking procedures brought me back into the world of the living. No, I was not out of pain by a long shot. My face still hurt like hell and no one had any reasonable explanation for the inflammation. At least I was able to walk around and even ride my bike once in a while.

And so, my spiritual pursuit continued in a healthier body and a bit more individualized than before my previous battle. The dilemma of my spiritual growth without a spiritual advisor was complicated by the fact that I could not read very well. I could read recipes and message boards, but that’s about it. I certainly was not capable of unlocking the secrets of the universe by decoding Talmudic pages. Hmmmm. There’s no question that this was a job for Rabbi Glixman (עליו השלום, 1928-2007), my beloved Rabbi of several years ago, but I was afraid of the emotional flood that was likely to overly irrigate my path. I knew he himself had been ill, and I felt his time was coming. Indeed, Rabbi Glixman passed away in the spring of 2007, taking with him a wealth of knowledge which I longed for. I mourn his loss today very much and hold dear all that I remember of his teachings.

So, how does a Jew build up her emotional and spiritual faith without the luxury of books or a teacher? I’ll tell you how: She tries different things until she figures out a way! I tried Jewish message boards but they did me little good because no one was posting. I subscribed to several electronic Jewish publications, but almost all were too complicated for me to understand. One finally took hold of my mind though. It’s called Daily Dose and is published by the Chabad organization. Every day, a short message appears in my electronic mailbox and I usually can understand it. Each is oftentimes encouraging and frequently stimulates my thoughts to a higher, spiritual level (sorry if I sound a bit like I’m from the 1970’s, but I am). I keep an electronic notebook of organized Daily Doses for review, in case of emergency.

The remainder of 2006 was plagued by a myriad of bizarre medical difficulties such as inadequate adrenal functioning, overactive pancreatic functioning, and unusual presentations of inflammation. As my neurologist frequently experienced brilliant brain bombs resulting in creative medical breakthroughs for me, I found myself able to partake in life more and more. We knew that the tricks being played on my body were not necessarily getting at the root of the undiagnosed problem, but at least my painful symptoms were becoming more manageable.

The most incredible breakthroughs generally involved basic gifts from God in highly condensed forms such as vitamin B-12, bio-identical progesterone, and fish oil. Sometimes a natural substance can destroy your body, like my toxic reaction to vitamin A in 2005 and once I went into respiratory arrest from vitamin K in 2002, and then others like the B-12 brought my c-reactive protein down from 8.9 to less than 1 and the fish oil brought my inflammation under control when the maximum amount of prescription NSAIDS could not.

Together, my neurologist and I have learned medicines include those that are not being peddled around by the pharmaceutical companies. It was clear that I would have to be travel worthy in order to take advantage of more of our world’s experts in understanding this mysterious ailment that had disabled my body.

By the beginning of 2007, I was cleared for medical travel. My hypercoagualable state was under control and my shunt appeared to be functioning most of the time. Although the pain level was high most of the time, it was manageable. My first priority was to get to the finest neurological institute in the world where there were also physicians from other disciplines in hopes of gaining a multidisciplinary evaluation. Naturally, I chose the Mayo Clinic and after detailed letters from both my neurologists, they rejected my application because they said there was nothing they could do for me. Personally, I think they did not want to run the risk of having a ‘bad’ statistic show up on their reports. (Incidentally, they indicated their evaluations were department specific, suggesting that my dream of doctors from different disciplines sitting around the same table did not occur at this institution.)

Setting my sights a bit more basic, the first stop on my travels was The Bronx, New York, NY, to visit my mother’s oral surgeon. For the last 17 years, my mother has been battling bone infection stemming from improperly healed wisdom tooth extractions when she was 16 years old. There is no explanation for her difficulty in healing from this osteomyelites. Since some of my symptoms were similar to hers, we had all been suspicious that this disease might be playing at least a partial role in my problems. Indeed, this was confirmed to be true and, like my mother, I now travel back and forth to New York to undergo the grueling process of locating and removing necrotic bone and then packing remaining tissues with antibiotics. The results of these procedures on me have been nothing short of miraculous. My neurologist describes me as being substantially more animated and energetic. Biological explanations for why my mother and I are both susceptible to this type of an illness are being pondered and actively addressed by both the oral surgeon and neurologist. Weather or not they come up with the definitive answer, at least there are two doctors who believe in me and are actively working on my case.

Weather at home or traveling, I actively work on my emotional and spiritual state. Because I don’t read very well, I tend to watch more television than I used to. I pick my shows carefully and am sure to have fun. I watch Judge Judy a lot to laugh out my anger. I also like to watch a show called Mystery Diagnosis which is all about people dealing with strange illnesses. I find that this show encourages me to keep going and fight to find out what’s wrong with me and not just accept explanations from doctors that are unacceptable. Many episodes encouraged scraping myself up off the ground once again to use my brain in putting things together and figuring out which direction to go toward next.

As I casually watched one episode of Mystery Diagnosis from my bed at home in the spring of 2007, I lay there dumb founded by the similarities emerging from the story I was viewing and the one I had been living for the past two year. I must have replayed that TiVo recording 10 times to make sure I got it all right. I got the names of her doctors and looked them up on the internet. Their institute’s web site offered all kinds of information. I ran it by my neurologist and he felt it was worth a shot.

So, I sent my medical history up to The Chiari Institute in Great Neck, NY. I was NOT rejected as a patient, and received a two day diagnostic evaluation there during the summer of 2007. When I explained to the neurosurgeon at The Chiari Institute that while riding in a car I frequently speak funny and sometimes lose the ability to speak, his response was matter of fact and even imitated what my words sound like when this happens. He said that this is what happens with all people who have what I have. The neurological and neurosurgical team there diagnosed me first with Ehlers-Danlos Syndrome, which is a disorder having to do with how the body uses collagen in building and maintaining connective tissue. Hmmmm. Another orphan disorder. Oy!

They then pointed out that the many years of loosening connective tissue in my neck has left me where, literally, my head is not connected to my neck. Well, I must admit it was rather refreshing to hear my ‘head is not connected’ from a neurosurgeon as opposed to a series of doctors pretending to be perceptive psychiatrists! Precise imaging based on years of experience with patients who have experienced similar symptoms as mine yielded a primary map of my neurological problems which are partially based on my orthopedic instability. Jeeze. What was always considered to be impressive flexibility for a woman of my size was not necessarily the sign of a born ballet dancer but a symptom of a dangerous underlying genetic disorder. Amongst many painful results, my cranium was found to be settling down upon my neck, causing pressure on my brain, particularly when jostled around such as when riding in a car. Ouch!

Well, as of the end of the summer of 2007, the following is a list of credentials that I carry with me as my current badge of accomplishments: Ehlers-Danlos Syndrome (Hypermobility type), Craniospinal Instability, Functional Cranial Settling, Flattened Pituitary Gland, Cerebellar Atrophy, Spinal Anomolies including: Cervical Stenosis with decreased posterior flow at C4 to C6, Herniated Nucleus Pulposus from C4 to C6 and at L4-L5, Retroodontoid Pannus Conus at L1-L2, No lumbarized S1. Idiopathic Intracranial Hypertension, Chronic Migraine with Atypical Visual Aura and Cluster Features, Atypical Facial Pain, Fibromyalgia, Complex Partial Seizures, Possible Neurocardiogenic Syncope, Restless Leg Syndrome, Orthostatic Hypotension, Osteomyelites (facial bones), Hashimoto’s Disease, Hypoglycemia, Adrenal Fatigue, Dumping Syndrome (secondary to gastric bypass surgery and Ehlers-Danlos Syndrome), Hypercoagualable State associated with: B-12 Deficiency, High CRPAnti-thrombin III Deficiency, High D-Dimer, Heterozygous for MTHFR A1298C, Heterozygous for Prothrombin 20210, single nucleotide polymorphisms, Family History of premature cardiovascular disease. Not to mention Latent Strabismus and Monocular Diploplia, Temporomandibular Joint Syndrome, Obesity, and Gastritis.

It appears that my personal diagnostic list is longer than my professional publication list. Oy vey! I suppose that should stimulate some type of emotional crisis, but I think I’m tapped out of emotional ups and downs.

So, instead of another mid-life crisis, I reframed the whole thing. I looked backward and took out a copy of my abbreviated publication list, unfairly cut short by the items on my sick list. I grinned as I remembered how I struggled with my colleagues toward the final printing of each of those titles. In the same light, each of the labels I carry now has involved many horrendous struggles, both physical and emotional, tests of physical fortitude, love, perseverance, and even faith.

The irony hit me that while the world certainly celebrates my publication list much more readily than my illness list, I had to struggle much more with my illness titles than with the titles on my curriculum vita. Although I certainly feel a great deal of pride from those publications, I feel proud for surviving the many types of battles involved in the war of my illness so far. I can only imagine the battles in store for me in the future. This is where the faith part comes in and that can certainly carry me when nothing else can.

Have I won the war? Certainly not yet. But I have come out the winner in some very important battles. At least I have a diagnostic path to follow with the support of my family to scrape me up when I fall down. My plans include genetic testing to determine the precise form of Ehlers-Danlos Syndrome I have as some forms could affect organs such as my adrenal glands and uterus directly while the simplest form might have affected these organs indirectly through pressure on my brain. The groundwork is being laid for shunt revision surgery as I have been advised on alternative devices to control the pressure in my brain when my current shunt totally fails, as it apparently does at times. And once the bone infection is controlled, I will also be considering surgical interventions to stabilize the cervical area of my skeletal system to reduce some of my problems. This will all entail much creative work in that many systems are involved and none function independently.

God’s closing my eyes to books for a time resulted in leading to a better understanding of my condition through the entertainment of television and words of non-professionals, as well as a few professionals. I have learned that you never know who or where an answer will appear so long as you keep your eyes and ears open. I will continue to listen to people from all walks of life and frankly, if what they say makes sense, I will incorporate it into my spiritual life.

So long as God grants me adequate physical wellbeing, I will continue to pedal my recumbent tricycle waiting for answers to approach me through unsuspecting ways such as a peacock running across the road or from a stranger who I join for lunch. This is how I will continue to fight my war!

Thank you for reading my story. I hope that you will follow my travels through my entries as my family and I begin our new lives in a new land and I continue to stumble through this ordeal.

Susan S.


My Brains are in My

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(c) Susan B Spitzer, PhD 2019