Personal Stories

Hidden Answers


I walk alone in the mist
the thumping stomp of my shoes
jolts my spine
stimulating an unbalanced perception of my view.
The horizon tilts
and I grab at the air to support my stance.
I continue walking towards the spinning line
A teeter-totter with me as the fulcrum
supporting east and west,
past and future,
leaving my present strained from this tug of war of imbalance.

I cut off the stimulants to grant my mind’s rest,
realizing that externals stimulate enough.
Equilibrium makes me drunk
feeling of fine.
no more need of red wine
I am escaping into me, governing what was once stable
I have drawn another circle.
closed a chapter, opened my eyes, freeing the flight of my sight.
Like the dreams that occupy my head,
I freely waft in like the Hawk that lives in my soul.
Spinning furiously amidst the sky,
proving that nothing can hold me down
when I decide to fly.
I remember being held in my mother’s arms
hearing the maternal coo
we had reconnected the chord.
I feed off her again and she glows.
All pregnant situations do.
I smile in retrospect.
My hope to fly as love straightens the horizon.
The green spark highlights the setting sun
and I realize
that all the answers are hidden in the way you pose the question.

Jill Meine

Epidermoid Survivor

Bubba S

I have what is called an epidermoid tumor/cyst. It grows on the auditory nerve, but it is closer to the place where the cranial nerves go into the brain (the cerebro-pontine angle). Because it is not in a bony canal like the AN, its growth is less constrained (for example, my first one was estimated by the surgeon at about 13 cm.). Both the pre-and post-op symptoms are almost identical to an AN (it is considered a ‘cousin’ to an AN), but it has the unfortunate side effect that if all of it is not removed the first time, it tends to regrow. A small (5%) portion of mine is in a highly vascular area. If the surgeon breaks one of the almost microscopic blood vessels, I’ve had it, literally. So, mine has been removed and regrown five times.

I had it first removed (as much as they could safely do) in 1971. The only symptoms I had were short (several second) periods of double vision, only in the afternoon and evenings, and about 20-30 minutes apart. If I had anything alcoholic to drink, the interval would decrease to just 10 minutes. The CAT scan and MRI weren’t around yet, and nothing abnormal showed up with an angle myleogram (you’re put on a tilt table, a radio-opaque dye injected into your spine, and x-rays taken). So the surgeon said that operating was somewhere between optional and vital. A wide range! He operated, found, and removed most of the tumor. I had the facialparalysis on the side of the tumor, and after about a month of physical therapy, to no avail, he slit my tongue nerve and attached a part of it to my facial nerve. This worked somewhat, but to this day I can’t whistle, and have to hold my mouth shut when brushing my teeth.

When the CAT scanner became available, about 5 years later, I had one, and was misdiagnosed as OK. One about 2 years after that also missed my tumor. Finally, in 1983, I had some symptoms related to fine motor control, and went to a neurologist (I was in NC by then). He ordered a CAT scan, and this time the tumor was readily seen. I was sent to a neurosurgeon, who operated again. After this, I had bi-annual CT, and later, MRI scans. It grew back again, and the same surgeon removed it again in 1989. This time he tried to take too much out, and damaged the vagus nerve, which put a crimp in my swallowing, speaking, blinking, etc. I wound up with double pneumonia, a feeding tube in my small intestine, an ulcerated cornea and a trach in my neck (all now gone except for the dry eye). After 11 months at home, I returned to work.

In 1993, the tumor was pressing on my brain stem, giving me breathing difficulties. It was removed early in 1994, with few complications, and two weeks later I went on a trip looking for a place to move to in retirement (I had been made an offer for early retirement I couldn’t refuse, by my company, a year earlier). I have been following experiences in gamma knife or proton beam surgery, and I had asked the most recent surgeon about using radiation in 1994. He said that the tumor site was too close to the brain stem, and they would have to be precise to within a few millimeters. So it was out then, and he did a normal operation (I have since learned that the Gamma Knife is accurate to .1 mm!). When I had my MRI this year (1998), it was back again and was large enough that it had to go (according to the radiologist’s report, it was about 4 x 6 cm). Again I asked about using radiation, but the surgeon said that the layer of living cells was about as thick as a wet tissue paper, giving a poor target for any beam. I then used the Internet and made a search on epidermoid tumors. There turned out to be one article on using radiation of a recurrent epidermoid in Toronto. Talking to one of the authors, he recommended a doctor in the states (a Dr. Jennelle in Birmingham, AL). I saw him and, after reviewing a number of my MRIs and other data, he said that because of the tendrils of this tumor that are difficult to see on the images, that he would recommend regular microsurgery followed by regular radiotherapy. So, I’ll try it. Hopefully, this will finally stop it from coming back. Five craniotomies will definitely be enough!

(Dr. Steve Engle was instrumental in the publishing of our original web pages. He died several days after his 5th surgery due to a clogged “J” tube several months after we went public).

Karen

My name is Karen, a 46 yr. old woman married to a wonderful man, with two married sons and one grandchild. I also have 4 cats, 2 horses, and a dog. Following, is a brief overview of my experience with an epidermoid tumor in the brain. After many years of dizzy spells that I thought were allergy related, I nearly collapsed at work in June of ’97. I was so dizzy I could barely lift my head off my desk. I was also experiencing numbness of my lips and tongue at that time. I saw my GP and she put me on Meclizine HCL (a motion sickness drug) and ran some blood tests, with no positive results. She then referred me to an ENT who ran more tests including hearing and balance tests. I passed the hearing test with flying colors but the balance test showed a problem with the right side. Because of the hearing test, they ruled out a tumor or Meniers Disease so no MRI was done. He recommended Vestibular therapy for the balance issue, which I started immediately. All it did was make me dizzier.

By this time I was beginning to experience severe headaches so they referred me to a neurologist. She put me through a full neurologicalexam and found nothing. Because of the headaches, she was about to dx a migraine type condition but thought she’d have a few more tests done that hadn’t been performed yet. These included an MRI which led to the dx in December 1997, of an epidermoid tumor/cyst. It was located in the right CP angle cistern, tethering the 5th, 7th and 8th nerve branches, and with leftward displacement of the brain stem. I was then sent to a neurosurgeon. I was told that these are extremely slow growing tumors and it could be many years before surgery would have to be done. In order to try and manage my symptoms I was given Fioracet for the headaches and Valium for the vertigo. This dx was reached after over 6 months of tests and appointments with 4 different doctors and a physical/vestibular therapist, while suffering symptoms of extreme vertigo, nausea and headaches.

I heard about a friend of my husband that had a brain tumor mass totally reduced with acupuncture. With a referral from my GP, I began acupuncture treatment in January ’98. The tumor was not reduced but she totally eliminated my headaches and nausea, and controlled the vertigo to a manageable level. I was back to living a fairly normal life again!

Then, in March, I took a new position with the State of Washington as a New Appeals Examiner with the Board of Industrial Insurance Appeals. By the end of May, I was straining my eyes using the Microfiche for heavy research and was going home with sore eyeballs. I developed double vision over Memorial weekend, seeing two distinct versions of an object. I spoke with my neurosurgeon, and he said that I had finallycrossed the midline and surgery was likely. I had another MRI which was essentially the same as before. I was also beginning to experience increased numbness and tingling sensations on the right side of my face. He put me on a short but strong course of Decadron to try and reduce a possible inflammation of the optic nerve, and referred me to Dr. Winn, a world famous neurosurgeon in Seattle, for a second opinion. He concurred with my doctor. Surgery was my only option at this point, in order to try and save my vision and prevent further damage to the facial nerves which could have led to problems with swallowing. Surgery was scheduled for June 29, 1998.

Surgery lasted 12 hours. Harborview Medical Center is a teachinghospital so I had a “team” of doctors treating me, led by Dr. Winn. At times I felt like a number instead of a person but, the nursing staff was fantastic. My hospital stay was 10 days instead of the expected 5-6 due to fluid buildup at the incision site. During my stay, to try and prevent having to insert a shunt, I had a series of three lumbarpunctures. These were hell and I thought surely bamboo shoots under the fingernails would be much more bearable. There has got to be a better way to perform this barbaric procedure.

Since my return home, my condition has not returned to an anticipated freedom from symptoms. I’ve had good days and bad days and good weeks and bad weeks. As of today, 10-15-98, I walk with a cane outside due to balance problems, suffer from vertigo, nausea, double vision, tinnitis and headaches-from-hell. Most of these symptoms are worsened when riding in a car or just getting up too fast from a sitting position. Ihave gone through a depression because of the slow progress, but am now coming into a period of acceptance. Starting 10-20-98, I will be seeing my local neurologist, who initially found the tumor, for treatment of my symptoms. I don’t know what the outcome will be but, I am maintaining a positive attitude. I am trying to live each day to it’s fullest, in spite of my limitations. I find joy in totally unexpected places. I have discovered who my true friends are and how family can come togetherfor a common good.

DeeJay
Dec., 1988 I visited my family physician with a complaint of diminished hearing in the left ear, some vertigo and sinus problems. I was diagnosed as having allergies, given some meds and sent on my way. I visited the Dr. several times during the next year with the same complaints, believing things were getting worse, especially my hearing in the left ear and the vertigo. By the first of February, 1990 I made a request of my Dr. to give me a referral to an Ear Nose and Throat specialist. Feb. 20th I saw the ENT and a hearing test was administered with the results showing “reflex decay” (anatomy of the ear was fine but the signal was not being transmitted to the brain). MRI was done on March 6th with the result… “Findings are most consistent with a large epidermoid cyst exhibiting considerable mass effect. This extends from the suprasellar region posteriorly over the clivus into the prepontine and medullary cisterns with posterior and right lateral displacement of the pons and medulla with some resulting deformity. There is also a mild indentation upon the left cerebellar hemisphere.” Surgery (debulking) was done on March 19, 1990 with 95%+ of the tumor removed via a left suboccipital craniectomy procedure. A week in the hospital, feeling awful, horrible headaches, nausea, vomiting, irrational thoughts/feelings and sent home with a pat on the head, some meds, and “every thing is going to be fine. You will be back to work in six weeks”.

I did return to work where I was in a managerial position for an 18 bed residential treatment facility for emotionally disturbed teens. I had worked there for ten years and loved it. The job was fast paced, lots of detail and full of challenges…I thrived in this environment….and I couldn’t do it any more. I also had a stained glass business, established in 1977, averaging 8-10 commissions per year ( a nice side income and very relaxing). I stuck it out for nearly five months at the treatment facility, with my memory failing me, headaches, vertigo w/nausea and riding an emotional roller coaster. I requested a referral for a Psychiatrist and saw Lesley Schroeder M.D. (a very beautiful, empathetic and intelligent woman) in Sacramento, Calif. She worked with me and my Drs on medications and eventually ordered a neuropsych exam. Neuropsych exam was done June 26, 1991 at the office of Dr. Grant Hutchinson, Sacramento, and lasted eight hours. Dr. Schroeder went over the evaluation with me the following week. The report was 25 pages. The short of it was that I was diagnosed with ” AXIS l: 294.10 Organic Dementia, Mild, with obvious difficulties in memory, concentration, tracking, attention, and visual-spatial processing. Probable 293.82 Organic Hallucinosis.” IQ tests from my 5th grade and 8th grade exams were compared with the recent exam and it was found that my IQ had dropped from an overall score of 130 to the present 105. Dr. Hutchinson strongly recommended a “course of neuropsychological rehabilitation” stating that “considerable improvements in memory, attention, concentration, tracking and visual-spatial processing are quite likely to occur with treatment.” The insurance company refused my requests time after time. They even refused to pay for the neuropsych exam at $4500.00. Over 1 year later they finally paid $300.00….and continued to deny rehab. My Drs. recommended that I apply for Social Security and it was granted with out question.

My tumor was diagnosed as reccurent in 1996. The most recent MRI shows “residual epidermoid tumor seen in the prepontine, anterior mesencephalic, and suprasellar cisterns causing posterior displacement of the brainstem from the clivus. There is extension of this tumor to impress upon the right anterior cerebral peduncle extending laterally into the right perimesencephalic cisterm and superiorly to impress upon the base of the right posterior thalamus. There is also extension involving the left cerebellar pontine angle”. My understanding is that the site of origination for this leison is at the midbrain.

I have problems with balance, vertigo, nausea and memory. Also the frustrations of mild dementia. I am blessed in a supportive marriage of 25 years and we have two wonderful teenagers.

Meghan

I am the mother of Crystallin . Crystallin was twenty four years old and in her thirty second week of pregnancy. She found she was loosing her sight. An MRI revealed that she had a massive epidermoid tumor. Dr. Brooke Swearingen of Mass. General Hospital removed the tumor from around the optic nerve and the pituitary gland. Now her sight is fine. Crystallin and Keith’s daughter Rebecca was born a month later. Becky is three and a half now and bright as a penny with a kind nature. All our lives have been drastically changed since that day in March. Crystallin struggles with fatique, short term memory loss and general organizational skills tied to executive function in her memory bank. She had a second craniotomy in Jan. ’97 to address concens that the tumor was compressing the brain in the temporal lobe and that debulking would help improve her memory and org. skills. At that time Dr. S. was able to remove about forty percent of the tumor. The rest of the tumor is wrapped around the brain stem and all the cerebral spinal nerves.. He does not rec. further debulking until there is a problem. She has had three neuro-psych evals in last three years and seen a Neurologist, Dr. Peter Riskind. Now there is talk of doing a shunt because there is a feeling that the cerebral spinal fluid is building up inside the brain that this is what is impacting her memory. We see the surgeon in Nov. to see in which direction to head. Crystallin has come to accept her limitations. She has had cognitive rehab. in her home which appears to have really helped her to find some ways around her org. and memory issues. She seems happier than I have seen her in a long time. There are no more children in her future due to concerns that preg. may have contributed to the growth of the tumor. Fortuately they have Becky. Crystallin gets tired and needs to rest during the day. She can’t handle a lot of confusion and she and her husband have worked that out. They are going to Disney World next week and both Becky and Crystallin will nap in the afternoons. She isn’t able to handle this type of communication so I hope you all will allow me to be her representative in the “moids”. Your stories, information sharing, and just “niceness” is a source of help to us. Thank you all for being there.

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    Hi everyone,
    I was just newly diagnosed with an epidermoid brain cyst.My primary doctor said the MRI showed a 1.9 by 1.6 by 1.2 cyst in prepontine cistern. I originally went to him for fatigue, some memory issues, but mostly brain fog. Never a problem with vision hearing, headaches or facial pain.Ironically he said because the tumor is pushing on cranial nerves5,7, and 8he said he was surprised i wasnt experiencing those things. I have obviously spentthe last few days googling everyrhing i can abojt thses cysts. I am horrified and beyonf scared. I am a single mom with a three year old son. The thought of making a decision in anyway that wkuld essentially change his mom as he knows her, is more than i can bear. My app with the neurosurgeon is tom. If anyone has any advice i would live to hear from you. I am terrified.

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