Chiari Malformation :: Breathing Trouble
Mar 7, 2016
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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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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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.
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?
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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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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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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'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.
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?
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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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I've been diagnosed by my doctor three weeks ago. going to a specialist on the 22nd of this month. Just want to know what happens now? It's going on three years having trouble breathing. They said i had asthma.
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Anybody else feel like at times you have trouble breathing? Im almost 32 weeks. Im guessing its just the baby getting big making me feel this way.
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Hi ladies lately i have been having a lot of breathing problems I am always shortness of breath even when just laying around. I am 16 weeks and not even really showing is this something normal or should I be worried
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The other day, I checked myself into the hospital because I was having difficulties breathing and a slight chest pain. The doctors ran a plethora of tests, including an EKG, MRI, and X-Rays. All of the tests, according to the doctor, came back "100% normal". The ER staff said there were no signs of anything serious and it should pass. Perhaps it's a muscle being weird or something?
The chest pain is mostly gone but breathing is still a challenge. It's difficult to take a FULL breath. No coughing. No wheezing. Anybody ever experienced this? The other day I went to the grocery store and I was winded afterwards. It does not seem right.
I'm going to see the doctor for a follow up on Monday, and I'm monitoring the situation closely. Are there breathing tests they can have me do? It seems like cardiac-wise everything is fine, but something is still up. I know to go to the ER if it gets too bad, but I'm curious if anybody has seen / heard / experienced something like this.
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Anyone having trouble breathing?. Every Night when I get into bed I began to have trouble breathing even with pillows under my head or body , I just can't seem to position right and have a hard time breathing.
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I'm 33 weeks and I'm having so much trouble breathing and sleeping is anyone having this problem or had this problem ??
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For about 4 months now, I've been having trouble breathing at work. it started out as 15 minutes to a maximum 1hour. I'm thinking it came around the same time the air conditioning came on at work. Now it can start before my lunch(noon) and go on till I'm home(5:20pm). Which gives me 20 minutes of not being at the office and I can now breath normal that I'm out of the office.
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For the last few days its very difficult for me to take a deep breath, or to feel like I have enough air going into my lungs. I'll try to breathe deep and it's like I just can't reach that point. I feel like I'm breathing fine but I could be taking in more air. When I'm laying in bed I can take breaths better if I'm sitting up. It's really aggravating and hard not to notice. It's been staying this way since yesterday and today, other times it was just an off and on type of thing. Another thing I noticed was if I gently press on my chest I feel a slight pain, maybe like pressure, or sensitivity. I don't know what to do about this, and it's really scaring me. I can't imagine having something wrong with me.
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