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It's ridiculous -- mostly we are young and generally healthy, so looking for a brain or spinal tumor just isn't on the mind of these doctors we first see...
I was just thinking that maybe we (as non-medical folks) might be able to find a common thread amongst us - why we got these tumors anyway. So, I will start and mention all of my medical type history. Maybe one (or more) of you will say - hey! I had that too! But then, maybe not. It is worth a try...Bruce
I started compiling a list of common ependy symptoms, and some of the misdiagnoses of those symptoms contributed by group members. The idea was to eventually send the list to health professionals to educate them on the 'thread' of symptoms which might indicate an epenymoma. The list hasn't been finalised, but you may wish to incorporate some or all of the following info on your 'Symptoms' page Glenys F 4th ventricle ependymoma; surgery June 03; radiation Sep-Oct 03; last spine and brain MRI clear Aug 05 Based on the experiences of members of the Online Adult Ependymoma Support Group common symptoms of ependymoma include one or more of the following: balance problems limb numbness tingling and pain double vision visual disturbances (eg �zig-zag� vision) black outs low blood pressure headaches pressure and/or stiffness in neck and head seizures nausea vomiting hiccupping burping speech difficulties swallowing difficulties assymetrical hearing loss severe fatigue 'hung-over' or 'spaced out' sensations (also described as feeling drug affected or �stoned�) mood and/or behavioural changes (eg increased levels of panic, anxiety, irritability, attention deficit etc) sleep disturbances sensitivity to light and sound cognitive difficulties eg word-finding problems, maths etc. The presence of headaches or seizures is not a prerequisite for an ependymoma. The absence of headaches and seizures has been cited as a reason for not suspecting a brain tumour, and for medical practitioners not ordering appropriate scans. It also appears that CT scans don't always reveal a brain or spinal tumour, and that a MRI scan may be required to show abnormal soft tissue growth. Again, based on group members� experience some of the misdiagnoses eventually correctly diagnosed as brain or spinal ependymomas are: 1.. spinal degeneration/impingment/disc protusion problems (supposedly causing limb numbness, tingling, balance problems and pain); 2.. benign positional vertigo (supposedly causing dizziness, imbalance, nausea, vomiting); 3.. chronic fatigue syndrome (supposedly causing severe fatigue, vomiting, and nausea); 4.. myofascial syndrome (supposedly causing headaches, muscle stiffness/tingling in neck and limbs); 5.. meningitis (supposedly causing fatigue, headaches, and neurological deficits); 6.. acid reflux & gastrointestinal disorders (supposedly causing hiccupping, burping, nausea, indigestion & discomfort after eating); 7.. hypotension (supposedly causing tiredness, dizziness); 8.. hypertension (supposedly causing headaches, balance and vision problems); 9.. thyroid problems (supposedly causing tiredness); 10.. sinusitis (supposedly causing headaches, pressure in head and neck); 11.. allergies (supposedly causing headaches) 12.. asthma; 13.. migraine (supposedly explaining headaches, nausea, vomiting, dizziness); 14.. stress/post-traumatic stress disorder (supposedly explaining fatigue, headaches, indigestion, nausea, vomiting). |
Neck pain Rt. arm pain Rt. leg numbness Symptoms About a year or less before diagnosis: A feeling of being very cold, like my bones were frozen Headaches with eventual vomiting Unbearable neck pain Balance problems Diagnostics that showed nothing: X-ray of neck and spine Lab tests Evaluation by a rheumatologist 2 years of chiropractic care (a killer!) 2 years of physical therapy on my neck (another killer) Nerve conduction studies The winning test: MRI! Bingo! After 5 years!!!!! 2 years of neck physical therapy (a killer!) Phyllis B spinal cord at C5 April 1995 |
Slight hearing loss Sounds like Heather's story is very different from the rest of you. She went to an ENT for slight hearing loss, he sent her for an MRI and the rest is history. She never really had any other complaints or saw any other doctors. Do we trust doctors? Have never, have always done our own homework and brought our own info to the doctors. Carol B m/o Heather, 27 yo, ependymoma-4th ventricle w/brainstem & cerebellum involvement, dx 8/13/04, sx 9/8/04-100% gross total resection, no radiation, broken foot healed, strabismus surgery 8/25/05 last MRI 9/9/05-no tumor, next MRI 3/06, |
For 2 years....pain that was like "charlie-horse" pain....down my right leg, in the calf area. That was it. It was quite severe at times. Was told it was low potassium (even though the lab value was just borderline low-normal), then was told I was "working out wrong" and got referred to a personal trainer. Then told I was "working out too much". Pain continued but since I was in my early 30s, no one took it very seriously. Finally it escalated and a MRI was done (after Xrays were negative) and a tumor on L2/L3 was found. It was "100% resected" in 4/99. Then in 7/04, the pain returned but this time in my lower back, radiating down my right leg and in the thigh area. Had a MRI and found to have tumors at L1, L3 and S1/S2. I knew right away that it was back. You don't forget that feeling! Linda D. Spinal L1 - L3 April 1999 Spinal L1, L3 and S1 - S2 July 2004 |
Headache every morning when I woke up Single uncontrolled hiccup 20 times a day or so My situation seems to differ very much also. I didn't have a doctor so my wife forced me to schedule an appointment with her GP. After meeting with him and reviewing my symptoms (hiccups and morning headaches) he ordered 3 tests: a full blood screening, a brain MRI, and a body CT. Within a week the blood test came back normal and the MRI showed the tumor. They scheduled me for an appointment with a NS that day. In a weeks time from my first visit to a doctor I got the word. Mason D. 4th ventricle ependymoma 100% resected January 2003 Radiation February - March 2003 4 new growths around 4th ventricle and brain stem June 2004 Gamma knife August 2004 Chemo (Temodar) started January 2005 One tumor completely gone, 2 others smaller and one holding firm. |
Incredible headaches Nausea Balance problems Weight loss Some dizziness Jodi Elam Ependymoma 100% resected from suboccipital craniotomy and brain stem on September 8, 2005 30 radiation treatments completed Nov. 2005 |
Incredible headaches Nausea Balance problems Weight loss Some dizziness My primary doctor thought the whole thing was hormonal (I'm 55, was 54 then). Suggested an MRI, but I said too expensive, so he did lots of tests for menopause (don't I wish) -- said I was going through menopause. After headaches escalated, I insisted on an MRI, and it was discovered during the MRI (Wed. afternoon). I never went home from the MRI, had surgery Friday at around noon. They thought they'd be inserting a shunt, lots of brain fluid buildup -- didn't have to after resection. Ann H Subependymoma resected 10/15/2004 Last clear MRI 1/06 |
Pain in my right buttock (which radiated out through my hip and down my right leg)walked with cane or walker (resorted to wheel chair for any distance) Some balance problems Some dizziness I had no idea what was wrong with me...for a VERY long time! I had, over the years, several operations for unrelated illness's that were supposed to solve my problems. Following my gallbladder surgery (1987) I was plagued with hives EVERY day for over 5 years. None of the doctors I was referred to could come up with any reason I had them or any medications, ointments, creams or treatments to cure or stop them. There were times I resembled someone who had been in a fight and lost. Swollen and bruised. My complaints leading up to, finally, the discovery of my spinal ependy were pain in my right buttock which radiated out through my hip and down my right leg. It made walking any distance very painful. It got progressivly worse. My primary physician ran every test, for just about any illness on me, and when he had exhausted everything he could think of he called in specialists...after another 4 months of being poked and prodded and after ruling out everything they could think to check for, my Doctor referred me to a neuro-surgeon. Within a week of the MRI in which my L1 - L3 Ependymoma was discovered I was in the hospital. Following the surgery I asked about the chance of another ependy coming about. He told me that these are slow growing and that I probably had mine for many years. and...Frankly because of my advancing age I probably could go on and not worry about ever having this problem again. After surgery and a short recovery time (a couple of months) I felt pretty good. Walking was much easier and alot more comfortable. I began getting active again. Less then a year following the surgery I began having the same symptoms as prior to surgery. MRI's were taken and no new growth was found. At 76 the professionals agree it could (?) be just age. Dot H Spinal Ependymoma L1 - L3 August 2002 |
Severe Fatigue SEVERE Headaches My symptoms started primarily as severe fatigue. I was working, but had to go home and sleep on my lunch hour. And it progressed to SEVERE headaches in the morning and vomiting. During this process I saw my general doctor who told me I was suffering from stress and had an ulcer. He sent me for a CAT scan where they saw nothing. I saw an Ear, Nose, Throat doctor who said I had particles in my ears, a dentist who ground down my back teeth, and finally a chiropractor who did offer some relief from the pain. Judy W. 4th Ventricle Ependymoma Surgery/Radiation - 1996 Holistic Healing/Surgery/Holistic Healing - 2003 www.EpendymomaPeople.org www.Ependymoma.info |
Our Non Medical/Medical
Growing Up Histories
No real injuries, except I fell from a rope swing as a kid of 11 and landed on the back of my neck (tumor site) (I was/am quite the klutz!) Got mono (in the usual way) at 17 Heavy smoker (cigarette) for 10 years, 1982-1993 Cancer prominent on my mother's side. She died of it (breast/lung) in 1988. Her father died of some type of cancer in 1953 Generally healthy otherwise. Employed by the U.S. Air Force, where I was (as a supply tech.) exposed to several chemicals, and forklift truck exhaust . That's about it...I did not use a cell phone, although I used the microwave every day, I did not "hug" it, or stand really close to it. I lived overseas until 5 years before I noticed symptom onset. When I moved back to the U.S., we did not live under power lines or anything - I was the only one in the family to get it (I don't think it was environmental) What about you? Anything I wrote "ring a bell " with you? Let's hear your story. Bruce B 4th ventricle surgery & radiation, '95 |
OK here's my very short history: I had mono at about age 22 or 23. Otherwise, my illnesses were the typical childhood kind of the day, i.e., chicken pox. Measles, no mumps. I had the flu a few times. Several broken bones. No family history of cancer or tumors, but my father survived colon cancer after my tumor incident. I was not a smoker. I use a cell phone frequently and have been sitting in from of a computer screen ever since they were invented, not to mention a television. I never lived near power lines or factories. I did work a Ham radio for a few years where I was probably exposed to elevated levels of radio frequency. I cook with a microwave almost every day. I feed the cat and I take out the trash. Steve C 4th ventricle nightmare |
This is my background: General health is good No serious injuries No cancer in my family Surgeries include appendectomy, tonsillectomy, 3 "fatty" benign tumors (I don't know the medical name) under the skin were removed. I used to smoke I have a couple of small nodules (BB size) growing on my thyroid for which I get annual ultrasounds to monitor. I use a cell phone infrequently and only for the last year or two. I have lived near power lines for the last 6 years. If I think of anything else, I'll pass it along John L subependymoma, resected 12/02 no radiation, shunt 2/03 |
Val's info- Was a smoker for 10 years, quit 15 ago 1 child no broken bones I don't think she lived under power lines but I can't even ask for now... Usual childhood gunk-except we had the chicken pox together the first year we were married! Instead of a ceremony you should have to have an illness together and/or take a road trip...then you get to marry. ;) She has used a cell phone for five years or so...doc thinks her tumor had been growing a LONG time though.... She was in the Army-worked in supplies or food, I think. Family history of heart disease and some cancer-uterine, ovarian. And like Steve, she took out the trash-I feed the cats. :) She worked in a cave with a fork lift for a while about 10 years ago. She was raised in the St. Louis area Laurie Ann w/of Val 4th vent ependy |
Here's my info, had chicken pox as a child and had the regular vaccinations. Only one broken bone in childhood. Started having what they called migraines at about 18-19 years old. Had 3 children while also gestating an ependymoma. Tumor was discovered after my last child turned 1 when I collapsed and was rushed to the ER. After the tumor had severe pancreatitis and had to hospitalized for a week before I had surgery to remove my gall bladder. Other than that have always been very healthy and active. Didn't start using cell phones until 3 years before they found the tumor. Never lived near power lines. I live in Alaska where there is little air pollution or factories. Terrya G right lateral ventricle 100% resected |
I'm 55 Regular childhood diseases Active -- lots of broken bones Melanoma on wrist at 37 (no recurrences since) Had baby at 45 (!) Headaches (called migraines at the time) started at 52, diagnosed at 54 with BT Used to smoke Have used cellphones since 1995, not a whole lot, though Have used microwaves since 1989, not a whole lot, though Father died of rare Swedish form of emphysema at 36 Mother died of Lou Gehrig's disease at 76 Ann H Subependymoma resected October 2004 Finally driving Wonderful husband and wonderful 9-year old son Last clean MRI 1.12.2006 |
I had Fifth's Disease before my tumor dx, too. Anyone else? Mono? I, too, was diagnosed with meningitis in about 2001.They didn't do a spinal tap because they opted to treat me "as if" to avoid testing that would make me more miserable. Funny, if I had the spinal tap, it would've been negative for meningitis and more tests (MRI, CAT) would've ensued much earlier than they were. My tumor was later found/removed in 2003. I frankly think it was a misdiagnosis and my tumor was just "flaring up" at that time. Maybe it was blocking CSF and later moved. Amy K |
Very little in the way of childhood illnesses....not even the chicken pox but I did have the Fifth's Disease once in kindergarten. Dad died of gall bladder cancer at age 60. His brother died of stomach cancer. No other cancer in the family. Had other type of benign stuff....large ovarian cysts, removed at age 19 and then again at 35 when I gave birth to our first child. Non-smoker. No heavy cell phone use. I was pretty inactive as a child and when I initially developed pain in my legs and back, the physiatrist was convinced it was tight hamstrings from being a couch potato. She at first thought the spinal tumor was just an "incidental finding". I got mono after my 2nd recurrence. They said I could have had it along time but my immune system kept it in check. Linda D L2/L3 ependymoma resected 4/99 recurrence 8/04, L1, L3, S1/S2-resection of sacral tumor, followed by radiation Last MRI stable, no new growth 2/06 |
Normal childhood issues - chicken pox when I was 5, flu and bronchitis a few times, mild asthma and allergies (went through allergy shots twice). Had all of the usual childhood immunizations back then - I'm 37 now. 2 C-Sections - normal pregnancies, but BIIIG kids! I think I may have had my tumor during my 2nd pregnancy.....? Should I be worried? Never had mono, never had a broken bone, nothing major until this! Used a cell phone - on that side - for at least 10 years. I even remember getting a weird tingle in the area after using the phone once a long time ago. Never told anyone about that, not even my NS. When I asked him about cell phones causing them, he shook his head and said NO....so I never pursued. Other than that, nothing else dramatic. Christie S 4th ventricle ependymoma surgery 3/29/05 IMRT radiation 7/05 - 8/05 clean MRIs 9/05 and 2/06 |
Normal childhood illnesses Got sick immediately following my first polio vaccination and never receive the second booster as a child. Later had polio vaccinations completed in the 70�s Dropped on head when 2 years old and was told I had a pretty serious concussion Family on both sides live well into their 90�s Traveled a lot to Japan, Europe, and Singapore. Repaired ruptured disc in back in 1991 Appendectomy in 1993 Very healthy lifestyle (Never smoked, only an occasional beer, weight lifting and exercise) High stress jobs my whole life. Mason D 4th ventricle ependymoma 100% resected 01/03 radiation 02/03-03/03 reoccurrence with 4 new tumors brain stem and 4th ventricle 06/04 Gamma Knife 08/04 Chemo (Temodar) started 01/05 Two tumors gone, 2 others smaller (3/2006) |
I had mono sometime in college and got it again shortly after my diagnosis. I didn't seem to have any health issues at all growing up, but toward the end of college, I felt extremely fatigued and started getting headaches. A few years later, I had really bad pain in my legs that went away after a year. This was before my diagnosis and no doctor could ever figure out what it was. I was told I might have Fibromyalgia and that was the end of it. No real family history of cancer, although I just recently found out that a great-Aunt of mine had a brain tumor. No one seemed to know what kind, but she did die of the tumor. I did not use cell phones a lot. I think we may have lived around an electrical power plant for about two years when I was younger. I have another question--did anyone have a doctor that asked them any historical questions like this? One of my doctors did have me fill out a form, asking about electrical lines, cell phones, working around chemicals, etc. Not sure what was done with the information. Debbie H Dx 1/02 suspected subependymoma, left lateral ventricle |
25 years of rheumatoid arthritis (one of the auto-immune diseases) Osteoporosis Chronic bronchitis and sinus infections for decades (but no more) Endometriosis (asymptomatic) culminating in removal of cysts from both ovaries; never pregnant, altho I never really tried High stress lifestyle, including law school and some years working in law firms Life-long tendency to judge myself harshly (now I'm working to get past that) Nancy W 3rd vent subependy |
Paternal grandparents died of ovarian and bowel cancer; I was fit, healthy, and very fit until 6 years ago (ran marathons, track racing and triathlon) when I developed exercise induced asthma, followed by glandular fever (your 'mono'), cytomegalovirus (CMV - a member of the herpes family of viruses), shingles and fatigue 2 years prior to my diagnosis (all of which may have been symptomatic of my immune system weakened by fighting the ependy) I had chicken pox as a child Only medications were asthma preventer inhalers Only intermittently used a cell phone, but ran daily for around 8 years wearing radio headphones (which made my ears warm) Non-smoker (apart from a few experimental weeks of intermittent puffing as a youngster) I worked as a litigation partner & prior to that as an employee in a major law firm in unrelentingly stressful conditions for over 14 years, very self-critical and harsh on oneself, a 'driven' personality until now when undergoing radical reassessment and learning to quite like myself! Glenys F 4th ventricle ependymoma surgery June 03; radiation Sep-Oct 03 last MRIs brain & spine clear Aug 05 |
No kid injuries, dunno maybe dropped on my head as a baby or something. But just the usual bumps and bruises. My father died of bone cancer Only used a cell phone for about a year, and not regularly like people you see driving and walking down the street Basic use of a microwave Never lived around power lines I have had the chicken pox, but that's it, besides the brain tumors. Judy W |
Charting the Info Gathered
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Information obtained through this list is not intended,
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