WHat is the prognosis of an adult with encephalomalacia? no.
WHat is the prognosis of an adult with encephalomalacia?JA: Have you seen a doctor about this yet? What medications are you taking?Customer: no. BP medsJA: Anything else in your medical history you think the doctor should know?Customer: Hydrocephalus, shunt, bleed, infection, shunt replacement, maybe a TIA, eye blindnessJA: When was the last time you had your eyes checked? In general, how has your vision been lately?Customer: last week. Bad vision, cataract which Dr. won't operate on due to present condition? Possible TIA Christmas Day, CT shows the encephalomalacia. wondering if there is a relation. Left eye totally gone, right one showing same symptoms.
Neurologist & Medical Dr
Neurologist MD (USA Board Certified)
This is my drastic and desperate attempt to seek some help
Hi there,This is my drastic and desperate attempt to seek some help and a second opinion. I live in Canada, so everything moves extremely slow and my choices seem to be limited.I have suffered headaches for as long as I can remember. My mother says I've had them since I was a child, dating back to even before I could remember. I'm now 22 years old, and I have worsened significantly over the past few years.I first reached out to my family practioner when I was suffering fairly severe headaches 3-5 times a week and I constantly had a lingering pain at the back of my head. The headaches were occipital, starting right at the base of my skill and radiated up and behind my eyes. I wasn't responding to any over the counter medications (ibuprophen, acetaminophen caffeine codeine, Excedrin, etc.). Over a number of years I took several migraine preventative medications (blood thinners, Gabapentin, SSRIs, Nortriptyline)Without any success, I asked to be referred to a neurologist. I waited close to a year. Before meeting with the Neurologist I had my first MRI and X-rays for him to examine.Upon our first meeting, I was given a diagnosis. I wasn't expecting this at all as I know there are so many varying sources and factors that contribute to headaches and migraines. The diagnosis I was given was Chiari Malformation. Although the low lying cerebellar tonsils were more subtle than extreme, I was told that the symptoms can varry for every individual. Many are symptomless, and others suffer severe neurological symptoms. So, I was referred to a neurosurgeon and was told that it was a fairly straightforward procedure - "You will wake up, and your head will be sore because you just had brain surgery, but that constant headache will be gone!"What amazing news. I couldn't believe I was one of the very few who had something come up on a scan explaining the source of my pain as I know it's a very rare occurrnce. I was in tears and in pain but smiling for weeks because I had a sense of hope.I was referred to a neurosurgeon as we don't have one working at either of the two hospitals in my city. I waited about another year to meet with this surgeon. The anticipation was huge. I couldn't wait to start living again.When we finally did meet, the surgeon walked into the room without making any eye contact, looked down at my file and just said "no". My parents who accompanied me, were confused, and so was I. They apologized for not understanding what he meant and he responded, "no, this isn't the cause of her headaches. She doesn't need surgery" and began to exit the room. I burst into tears because I couldn't even process the thought of having to suffer any longer. My parents stopped him and asked what our next course of action should be, and if he had a suggestion of any kind. He simply said I should be going to a pain clinic, maybe Botox injections. And that was it.I have continued to get worse and worse since that time. Now I know a lot of people say "I have a high pain tolerance" or "oh I get migraines, they're awful"...But I'm a really tough chick who has battled and managed these all my life and I was suffering. Badly.I was a full time honours psychology student, I worked as a head server and manager in the busiest diner in the city 30-40 hours a week, and somehow managed to find time for family and friends (even with the migraines).Today, the pain in so intense and crippling I vomit almost every day, I have fainting and blackout spells, I experience trembling and muscle spasms, the list goes on.Because of this downward spiral, I find myself barely succeeding enrolled in only 3 courses. I had to leave my job which I held very close to my heart, and I'm lucky to feel well enough to walk around for more than 30 minutes.Last week I broke my leg when I collapsed from being so dizzy. In a year I went from having 20/20 vision to needing glasses because the muscles in my eyes have started to deteriorate from constantly over working from the headaches.I have tried a few rounds of nerve-blocker injections with my Neurologist, and continue to take 100mg of Nortriptyline with no success. I am awaiting approval to try Botox injections as a form of treatment. The only medication I have responded to is Prednisone. It was a miracle drug. I had forgot what it felt like to not have a headache, but I was only able to take it for four weeks. As soon as I came off of it I was right back where I started.Triptans used to do the trick for some temporary relief (6-8 hours max) but again, the migraine came back full-force and I never felt full relief. They just dimmed the pain.I know medication-over use is a very common cause of reoccurring headaches. The idea of the Prednisone was to take it, break the cycle, and start fresh. I didn't touch anything for months after the Predisone and that was the hardest thing I've ever done. I would usually take something every couple of days, and it was always just a combination of over the counters or 2 triptans. Heavier pain killers always just made the headaches worse. I think there's only so much pain the body can take. I landed in the ER after not being able to take it anymore, and my symptoms were so intense the Dr's thought I had Meningitis. I was sent home after my spinal tap came back clear.Additionally, I eat nothing but clean, whole foods. Well sourced and cooked meat and veggies and fruit. That's about it. I haven't had a sip of alcohol in years, a spoon of dessert, a puff of a cigarette. I've cut anything that causes inflammation in the body. I also do light exercises/stretches every day, drink a butt load of water, and sleep 12-14 hours a night (crazy, I know).I know a lot of people suffer headaches and migraines. I know there are so many triggers. I know there are a lot of treatments out there. But I also know my body (he how often do you hear that one?) It's hard to understand or appreciate a person's suffering when it can't be measured or isn't visible. I come from a conservative family and have always suffered silently and been brave about this, but I've completely fallen apart and I need help. A second opinion or even a suggestion.I realize this was a short essay. So sorry for that, but it's hard to condense this whole journey. I'm using the Internet for Christ's sake. I don't even know if this works. But hey, like I said, I'm desperate and will try/take anything l can get...So thank-you.- Kelsey
Radiation Oncology Attending Director