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We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
Patients often wait weeks or months to see a specialist, or get a long-awaited for test. MRIs, CATs and numerous blood or neuro tests leave most of us feeling uneasy and eager to hear the results. But what if you don't understand the words, or the results? Just what does it mean if a doctor writes, "Reflexes grossly intact?" Or, how big is too big when a test shows "something" but no one explains what the "something" is?
Too often, doctors only say, "There's nothing to worry about" but don't explain WHY you shouldn't be concerned. Just when are test results "really something?" or "really nothing"?
Let people on this board help decipher and explain the medical terminology used on test results. Let us help you understand some reasons that doctors may not be as concerned as you think they should be. And, let us help point you toward other possibilities that you can then discuss with your doctors.
Post anytime. Someone will reply as soon as possible. Note, however, this is an unstaffed board so a reply may take a few days.
I just read through the web page you listed about Shelly's misdiagnosis and failed surgey. It offers nothing to your situation, I know, but I am very saddened and angered to read the story.
I have had a similar miscarriage of medical competency, although not on the operating table. But I am severely disabled from my doctors' smug refusals to remember that medicine is indeed an "art" in which each doctor must humbly hone his skills and learn to step back while putting himself in the patient's shoes. My doctors failed to be doctors. And so, I am left to live in debilitating pain.
I don't have any answers for Shelly. I do know how I have been left to "heal myself". I'm on my own to think of home exercises, to find needed equipment...and of course, I alone bear days and nights of unrelenting pain. From reading your story, it sounds like you and Shelly have also been left to figure it out on your own. How unfair!
As much as I am enraged by what my doctors did to me by their INaction, I also know my rage will only make it harder for me to cope. So I put my energies into doing what I can to make the world a better place, to help someone else when I can. I encourage you to help Shelly find what she truly loves to do, and to find ways that she can participate in life. I do know how it feels to be immobile; I'm in bed 99-plus percent of the time. But she has worth and her life has meaning, even if she can't be mobile or get around.
I hope you find professionals who will help. In my State, I couldn't even sue because I needed $10,000.00 before an attorney would take my case... needless to say, I don't have that kind of money. I've given up on doctors; I try only to get what I need (ex. meds) from them and in my head, I distrust the majority of what docs say. I know I'm on my own--- for better or worse -- and expect nothing now.
Please feel welcomed to come here to talk, to vent, and even to educate other patients about possible risks people can encounter from surgery. I'm interested in what you have to say, as someone who loves Shelly and has seen what can happen "in the blink of an eye". As you said, Shelly walked into the hospital with one problem, but left there with a far greater burden.
Again I can only say I'm sorry this happened to both of you.
Thank you for your kind words. I am sorry to hear that you too are a victom of doctors, and know the pain when they simply brush your life away along with your horror and pain. Let your family know you and yours will be in my prayers.
I will visit more latter, as right now we are mentally prepairing for the thought of going back to surgery to keep the problem they created from slowly killing her. new MRI's show Shelly's spinal cord is at risk of more harm than ever before, causing a hidius loss of function. I now control her bowels, and bladder, anlong with daily chores as her care giver, therapist to keep her limbs from freezing up.
We are thankfull not to have a "pain" problem, as Shelly can not feel her body to know if she should have pain. I have to watch her body for potential injurys.
bed sores, bumps, scratches can become infected as you know.
In an embryo, there can be a 5th and 6th cavity that resemble a ventricle but are not one of the 4 ventricles that all heathly/normal humans have. These two are: cavum septi pellucidi and Cavum vergae.
Cavum vergae is a posterior (meaning, seen at the back part of the) extension of the cavum septi pellucidi.
The fetus and neonate have a period of growth in which the extra cavities but at 6 months gestation fusion occurs in the back part and at about 6 months old the front part fuses (normal development).
Sometimes the fusion does not complete--it isn't 100% fused.
MRIs show that in babies, children, and healthy adults, the cavum septi pellucidi and cavum vergae exist, but as benigh status it should be a size less than 5 mm (milimeter).
If larger, there can be associated problems. For example: craniofacial syndromes that affect the hippocampus; congenital syndromes; fetal alcohol syndrome; chromosome abnormalities (like mental retardation).
One study of 11 people found that 8 MRI pts with schizophrenia had a larger cavum septi pellucidi -- but small studies are never, ever conclusive. Instead very small studies ONLY raise questions, give rise to further research questions, etc.
There are many other conditions researchers have investigated concerning these extra 2 cavities/ ventricles, but they are more & more afar from normal persons' lives. As one example, they studied boxers who endure a "punch drunk" type of dementia related to repeated head trauma.
So all that said, benign means inconsequential, of no clinical importance, non-problematic. Radiologists are required to note all normal structures and anything "not-completely-normal" (benign). Since these cavities/ventricles normally fuse between fetal month 6, and age of 6 months of life outside the womb, the radiologist would note it exists.
The radiologist would measure the size of the structure. Supposedly if under 5mm size, they'd list it as "benign".
As well, even if one of these 2 extra cavities existed at a size larger than what physicians have determined to be "within a normal range", the presence of the extra cavity/cavities would need to correlate with (match) the symptoms a patient has reported or that can be objectively observed.
For example, if a patient was a boxer and showed signs of "punch drunk" dementia, and the MRI also showed the two extra cavities at a larger size, that might be significant.
Basically, I guess you could say in your MRI that for an unknown reason your Cavum vergae did not completely close between 6-mo-in utero and 6-months of life, but why it happened has little importance unless you also have symptoms that relate to this structural non- or part-fusion.
Could there be a connection with me not being sensitive to certain pain. Last year I had fallen and broke my wrist and didn't know it was broken. Three weeks after having it surgically repaired, I had an open cholecystectomy too inflamed for a laproscopic, and had absolutely no pain to indicate a problem?
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