Chiari Malformation :: Hearing Screeching And Loud Knocking Noises?
Dec 24, 2014
I'm 23 years old, I was diagnosed and had Decompression Surgery at 16. I have had nearly every symptom of Chiari that I have read about and this isn't new. Ever since I can remember I have seen and heard things that aren't really there. Although I always knew it wasn't real, most the time, it startles me. I have been treated with anti-psychotics and anti-depressants my whole life to no avail. Untill now I accepted the fact that it was just psychosis, but in the last year I have weaned myself off of all medication for depression, anxiety, and psychosis and behold! My depression and anxiety have diminished to nearly being non-existent. I AM HAPPY! But when I get a headache, the back of my neck/head swells and when it gets bad, I start hearing voices, screeching and loud knocking noises. It also feels as if there are people touching me, pulling at me, my skin crawls like there are ants inside of me. Also I see flashing lights, floaters, my vision gets blurry and distorted as if I am looking into those trick mirrors at carnivals.
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I am scared of being labeled depressed and psychotic by doctors so I don't say anything. I have been dismissed by the only neurologist I have seen since my surgery, she even said I was 'cured' by the surgery. ARE these symptoms of Chiari or AM I crazy?
I have a child recently diagnosed with chiari malformation type 1. His age is 4. It started with vision and hearing issues, then breath holding spells when hit in the head. All started at age 2. He has strabismus with esotropia. Recently started having spells where he will drop to the ground and cover his eyes (photosensitivity) complains of spinning, they last 2-4 hours followed by 24 hours of vomiting. The neurologist believes this is unrelated to the chiari. I have scheduled a second opinion with a neurosurgeon. He also is constantly smelling everything. Any thoughts on that part? I was wondering if this is all related to chiari and if he has the decompression surgery will it fix his vision and hearing?
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I had my decompression surgery and a cranio-cervical fusion about 8 years ago. I started to have headaches, dizziness and numbness again. I had an MRI and it shows a significant decrease in the flow to the back of my lower brain. Has anyone had this happen? Does it involve another surgery?
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Over the years I have been having issues breathing as well as chest pains and a host of other symptoms. I was diagnosed with another condition however recently doctor's at discovered that I indeed have Chiari Malformation 1 and not what I was previously diagnosed with. The past two days my breathing have been terrible, I feel as though I am struggling to breathing, which makes me light headed. I also find that I have to take deep breath in-between speaking. I also have been having mental lapse as well. Is this normal with Chiari?
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Opinions please, from people diagnosed with a reduced CSF flow. And from those who have had surgery because of it. Or anyone who had advice.
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I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.
I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.
I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.
I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?
I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!
Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.
I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!
Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.
So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.
I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.
I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?
One week post op. Anterior cervical disc fusion - 3 levels. Painful lump on side of neck with incision and Doctor is not answering questions until 2 week office appointment. What is this ?
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I've recently been diagnosed with Chiari Malformation type 1 and after reading up on the condition I found that lots of people with the condition either already have or develop syringomyelia. Does anyone know how likely it is that this will develop? Also, does anyone know if the symptoms will continue to worsen over time or will they improve now I'm on medication?
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I am an adult with ADHD, 15 months ago I had decompression surgery as I had a syrinx almost the full length of my spine and Chiari malformation. The syrinx has reduced massively but is still large. I have had many symptoms following surgery but am wanting to know if any chiari patients also have experience with ADHD as alot of the cognitive issues I am having now are similar to ADHD like lack of concentration and taking in information. From what I can find there is no official info about this so I was hoping to hear from anyone who has a personal experience of this. I don't know if I can expect to return to normal as alot of the cognitive symptoms I already had but on a much smaller scale.
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I have always had problems with bowel movements with my chiari before surgery but this is intense. I am going five days with no urges to go at all ever since my surgery, so every five days I go. I am doing laxatives to go at every five days. It is getting painful. Is this normal? I know that constipation is normal with pain pills but usually there is an urge to go and you just can't. But the feeling to go has completely left. I'm worried. My stomach is swollen I look pregnant and is nearly as painful as my recovery from surgery. I am taking everything they told me- stool softener, miralax, benefiber, milk of mag, and suppositories. The pa said to avoid enemas if I could. Has anyone else had this problem?
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I have Chiari Malformation and was told I have EDS as well, I'm in the process of getting an official diagnosis. Besides headaches and other symptoms, one of my biggest problems is nausea! I had the stomach bug back in January and it seems that ever since I have been extremely nauseous 80% of the time. I've been tested for GI pathology and food sensitivities and nothing seems to correlate. Been thinking of possibilities with sugar or salt/electrolyte problems? It's worst at night, I wake up an hour or so after falling asleep and I'm extremely nauseous, I feel as if I move I will throw up and my body is shaking, like tremors.
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Today I had a ECG stress test on a treadmill and after only two and a half minutes my BP went from 140/67 to 236/51. Has anyone heard of it being so high and with such a difference in systolic over diastolic? The diastolic actually dropped while still exercising. I am told to get an echocardiogram stress test now to determine if it is extreme hypertension rather than CAD. Has anyone else had this? Could it be chiari related. I am thinking my problems are heart related rather than chiari related now, but lucky me, it could be both I suppose.
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Was referred to a neurosurgeon to see a physiatrist which then referred me to 2 other drs - a neurotherapist and a neuropsychologist. also prescribed nortriptyline. i guess i shouldn't have said i was a little depressed. but man isn't feeling that way probably normal after a car accident, then chiari diagnosis, then possibly brain surgery, and finally after being told i may never again get to play the sport i love which is hockey because of all this? been to 3 neurosurgeons - 1st two say surgery is an option and come back when you're ready basically. 3rd one referred me to physiatrist and said basically surgery will be an option down the road. 26mm herniation with a CSF blockage (i had a cine study with 2nd neurosurgeon). jw if anybody else has been down this road. feels like im taking steps backward instead of forward...
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I am not diagnosed as of yet. I do know that I have a chiari malformation 1. About 7-8 days ago I started noticing some visual changes in my left eye. I do notice intermittent pain/ pressure to my left eye and forehead. The best way I can describe the visual changes are as an ocular migraine- everything looks really bright, some blurriness, flashing lights, and the black letters on the bright white screen of my phone look a little dull- however these symptoms come and go over the day, they are not constant. I do notice that the symptoms come on with activity, bright lights/colors, heat. I did have a sinus infection 2 weeks ago and continue with the sinus pressure. I saw my eye doctor who completed a dilated eye exam and said all was normal. Has anyone else had these symptoms with optic neuritis? These symptoms are very concerning to me- didn't feel the eye doctor took me very serious.
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Has anyone experienced a loud roaring low frequency noise in ear with hearing distortion. I woke up one morning in December of 2015 and felt like there was a gong in my head all sound was vibrating. I felt like I was in the front seat of a car driving down the highway with the back windows open halfway. I went to doctor and found I had lost some low frequency hearing in right ear. I was Put on steroids for two weeks. Got hearing back but left with this loud tuning fork/motor engine sound in my right ear and random hearing distortion in both ears. I am very sensitive to low-frequency sounds and any kind of motors, airplanes and low voices just don't sound clear. The motor engine stops when I speak and returns after my last word. When someone speaks to me loud enough the motor engine will stop also and than return upon their last word. Sometime sound drives the motor engine into the other ear and I feel a fluttering/vibration/rumbling sound in the left ear. If I shake my head back and forth quickly the noise will stop for a second while doing it.
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Had so many tests and scans that don't show anything wrong. My hearing test are normal now. It is driving me insane. Can't eat or concentrate. Severe anxiety. Went to audiologist and see if I could have it masked but it is to loud. I can't believe I can still hear over this noise and distortion that is going on in my head. Some days are better than others and I think I may be getting better but it gets worse again. I have no dizziness at all. Some doctors told me meniere's disease or virus. I can't stand it anymore. Does anyone have any suggestions?
Just spent 5 days in hospital with Asthma. Been Asthmatic for 64 years and never been in hospital before. Go figure that one. Wondering if it may be related to the Pred knocking off my immune system. What do you all think. Second question I had a CTPA which is a scan that is done when looking for clots in the lungs. As part of the report there was a comment made that the Adrenal glands were not enlarged. Does this mean that they will kick back in once I get pred down. Am on 9 mgms at present?
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Has anyone ever woken up to one loud heartbeat sound it usually happens to me when I'm falling asleep it's weird I can't really describe it but it kind of makes me jump
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I am now having noises in my ears, like an engine running etc. I use oxygen and a nippy ventilator so I don't know what to do. Its really getting me down, not sleeping much which I need to do.
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I am 49 years old. The specialist couldn't do AN MRI scan on my ears as I couldn't lie flat, don't know whether they can do a CT scan either, I thought he would have offered something when I couldn't have the MRI, I am a bit cross, I am worse since having the hearing aid, my hearing was going but at least I could use the phone which I can't now, that is really getting me down as I'm not always with my partner so we contact each other by telephone, that is the only way I communicate a lot of the time as I can't always go out with my breathing problems.
I am 16 and have had mild tinnitus for years, with an unknown cause and I could only hear it whilst trying to fall asleep. But after going to a concert last night, I woke up this morning with an extremely loud ringing in my right ear. It is loud enough that I am hearing it throughout the day, no matter what I am doing.
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I am also experiencing mild pain in my right ear, but not experiencing any hearing loss.
I would just like to know what I should do, how I can cope with this, and if it may go away, or subside mildly.
I am 17 now and I have had tinnitus for only about 6 months and I already think I is really annoying!! I'v got about 3 different ringing noises, one (the first) in my right ear, the second is a higher pitched one in the middle area, (I cant tell where that is coming from) and sometimes I get an extremely high pitched loud ringing in my left ear which comes and goes (It's so loud that when it comes I actually turn my head to see where the noise is coming from.)
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My problem is that I have no idea how what caused it. I ruled out loud noises because I can't think of a situation where I have been exposed to very loud music.
One day I just woke up with tinnitus. My hearing was reduced for the first few days and then fully returned.
Recently I think it has got worse.
I have seen my GP twice and now I will be seen by an ENT DR. Tinnitus doesn't stop me sleeping, but it is the only thing I can hear at night and that is extremely annoying.
The worst problem I have is that I find it very hard to concentrate when doing schoolwork as this is when I would normally need silence. I find it very difficult to concentrate with noise so tinnitus upsets me quite a lot.
I think I have been experiencing what I believe are sinus issues for almost a year. I have been to two ENT's and they put the flexi camera up my nose, advised a slight deviated septum and gave nasal drops.
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I also had a CT scan was they said was clear, slight inflammation on the right sinus, but other than than cleat. My nose is rarely blocked but I have terrible crackling, popping behind my nose and it even seems to be above my palate. I get phlegm/mucus at the back of my throat, often lumps of it, but not down my nose.
I have a constant pain up my right nostril.
The popping and crackling appears to be getting worse, almost a bone crunching sound. I often feel a painful pressure behind my nose or at the side of it, and then a horrible sensation of movement to relieve the pressure.
I get headaches above my right eye and often feel like I have been hit on the right side of my nose. The cracking noises come from both sides of my nose.
I am now also experiencing tooth and gum ache, and woke last night to popping sounds in my mouth, almost above my palate, but cannot be sure.
My ears frequently feel full too. As I previously mentioned my nose is never blocked, and its not full of mucus, so in that respect I do not feel bunged up!
I dont know where to go from here, ENT told me there was nothing more he could do on the results of my CT scan.
My problem started in 8th grade. During 4th period after lunch, my butt would start making noises. It would feel as if I had to fart or something. I don't even know how to explain it. Of course I couldn't try to fart because it was always quiet in that class. The noises came from my butt area and sounded like my butt was whining or something. I don't really remember having a stomach problem or anything near what I dealt with freshman year but that's when it all started.
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Summer passed and I started high school. During first two weeks, the noises started happening. It would happen in mostly second hour and sometimes in other classes too. It felt as if I was about to fart or something and then my bum would make a loud whining sound. Like I said, I can't really explain it but it was EXTREMELY embarrassing. I would always text my dad and BEG him to come get me. Nothing I did would stop it from happening. I thought it would go away and that it was just stress because I started high school but I was wrong. It started getting worse and worse.
I thought that this wouldn't happen if I didn't eat breakfast and that it was just gas. I tried that and every period until lunchtime, I would have REALLY bad hunger pains and it felt as if I haven't eaten in a week even though I only skipped breakfast. The stomach growling and butt noises happened regardless if I ate or not. It got so bad to the point where I started missing so much school. I dreaded going to class every morning and would always fake sick and always make my parents come get me from school. I even skipped classes and hid in the bathroom because of this problem and I would cry my eyes out because I couldn't go to school and be happy like everyone else did.
By the time the year was half way over, it had gotten to the point where I had no hope. I started dealing with a bad stomach growling problem along with the butt noises. No matter how much I would eat, or what it was that I ate, by the time second period came my stomach would be growling nonstop and very loudly. I had stomach cramps and hunger pains also. It was no matter what I ate. If I ate, then I would have to deal with the butt noises and if I didn't eat, I would have to deal with the stomach growling. I couldn't escape the problem no matter what I did. EVERY SINGLE DAY, all I would think about in all my classes is my stomach. If it was going to growl, if my butt noises would happen, etc. It ruined my life. My grades were terrible because I couldn't pay attention to the class. Usually I would get a feeling in my stomach before it would growl so I would know when it would. Please do not tell me that 'everyone's stomach growls' because it was not normal growls. It was SO loud and would happen no matter if I ate or not. Most of my classes were quiet and when it was quiet in class, no one else's stomach was growling as much as mine and no one else's butt was making farting and whining noises. Someone else's stomach would growl every once in awhile but it was very quiet and it only did once or twice. But it was different for me. It would happen ALL CLASS and in EVERY CLASS until lunch time.
After lunch time, my 6th hour wasn't very quiet so I didn't really have a problem in there. The butt noises still happened no matter what. In 7th hour, my seat was in the front of the class and EVERY DAY my stomach would growl really loudly and everyone would look at me weirdly. The class was ALWAYS quiet. I was always looking for reasons to leave and every time she said to work independently I would start to panic and would literally start to cry in the middle of class because I knew the noises would happen. I would stare at the clock the entire class period and all you could hear was my stomach and butt growls. Everyone in that class thought I was the "freak with the growling stomach and farting problem". It was so quiet you could hear a piece of lead hit the ground. It was horrifying.
I constantly had bowel urges and when I went to the bathroom I didn't pass anything out. Sometimes when I did (very rarely) I would feel a little better but the stomach growling and hunger pains would still continue. Before my stomach growls, I would get this feeling in my throat that felt as if I had to burp or there was something stuck in it and It was actually hard for me to breathe.
I was embarrassed to talk to anyone about my problem but I knew I had to because I couldn't deal with the embarrassment anymore. It wasn't only embarrassing but it was also really uncomfortable and distracted me. It's all I thought about. My body would make all kinds of noise and I began to have anxiety because of this. Every morning me and my parents would fight over if I had to go to school or not. I began going over the amount of absences allowed and would get letters sent to my house. My parents thought I was overreacting and that what I was going through wasn't serious enough to miss school. I would cry myself to sleep every night, when I got home I would break down, and I began having signs of depression. I used to play sports and go out and had lots of friends but ever since this problem started everything has changed. I have developed a phobia of quiet places. I know this sounds really dumb and unless you're me you won't understand. I was starting to become suicidal and it ruined my self esteem. I wish I could go to school with a smile on my face, I wish I could wake up every morning and say "I have a feeling today is going to be a good day" and not one day freshman year did I have a "good day". I wasn't bullied at all but I know people thought I was weird and gross because of it.
My dad finally made an appointment with a gastrologist. He had me do a couple stool tests and that didn't help. Everything came out as if nothing was wrong. He thought it was an physiological problem or that I had IBS. It was so frustrating because I knew neither of those were the case. I thought it might be a bacteria overgrowth thing but no one would listen to me or even consider it. I felt so alone and frustrated. I was taken out of school by my dad and did school at home for the last two months of school. I almost failed freshman year and only got four credits so now I'm going to be behind everyone with my credits. It literally felt as if I was the only one experiencing this. Every single day, I was always looking things up online. I've read countless amount of articles about different things it might be and read other people's experiences. Believe me when I say this, it basically ruined my life. I thought it would stop but it hasn't. Everyone keeps telling me that it's physiological and my dad got me a therapist. I tried explaining to him that it is NOT physiological because it would happen NO MATTER what situation I was in. I'm sitting in bed right now all relaxed and my stomach is growling and my butt is also growling. My butt not only makes fart noises and whining noises but it also growls a lot. I feel as if my intestine might be twisted or something but I honestly don't know. This has taken over my life and I'm TERRIFIED of school starting in the fall. All I can think about is if my classes are going to be quiet or loud.
While most teenagers are out having fun with their friends on a Friday night, I'm at home googling every possible thing looking for something that could help. It sucks because no one understands what I go through and how much it has impacted my life. Believe me when I say this, ITS ALL I THINK ABOUT! It happens no matter where I am or who I'm with. When the noises are happening I try to calm myself down but nothing helps no matter how relaxed I am. You have no idea how hard it is being told by numerous doctors that they don't know what's wrong with me. I get told that it's because of anxiety but ITS NOT! I have a bad anxiety problem BECAUSE of the NOISES! I have depression because of the NOISES!
I know what you're thinking. That I'm selfish and that I have no reason to complain because some people have way worse problems. You DON'T understand. All I want is to be happy again. All I want is to go to school and sit in a quiet classroom without my butt and stomach making loud noises all period. You have no idea how much I dread going back to school. My parents have no idea. No doctors have any idea. No one understands what I go through.
It's the middle of july and I've had this problem for over a year now. For the passed couple months, right after I eat I would have diarrhea no matter what it is. Sometimes I even get constipated and I can't pass anything out. My butt growls for about two hours and then the stomach growling starts immediately and I get really bad hunger pains. It never ends. I can't even smile anymore. I'm so alone and no one understands. No one.