Chiari Malformation :: Another Decompression Surgery?
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?
View 1 RepliesChiari Malformation :: Breathing Trouble
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?
View 1 RepliesChiari Malformation :: Reduction In CSF Flow
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?
Chiari Malformation Patients Develop Syringomyelia?
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?
View 3 RepliesChiari Malformation With ADHD - A Lot Of Cognitive Issues
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.
View 11 RepliesChiari Malformation :: Bowel Movements After Surgery
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?
View 1 RepliesChiari Malformation :: Extreme Nausea 80% Of The Time
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.
View 4 RepliesChiari Malformation :: Decompression Surgery Will Fix Vision And Hearing?
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?
View 7 RepliesChiari Malformation :: Blood Pressure 236/51 On Stress Test
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.
View 2 RepliesChiari Malformation :: Nortriptyline Helpful Or Is It Just Masking Pain For Now?
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...
View 4 RepliesChiari Malformation :: Hearing Screeching And Loud Knocking Noises?
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?
Chiari Malformation :: Optic Neuritis? Blurriness, Flashing Lights, And The Black Letters
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.
View 3 RepliesLump On Right Side Of Neck - Hurting Shoulders
I have a lump on the right side of my neck. I also have 2 others down a little further closer to my shoulder. The whole side of my neck is hurting from the base of my skull all the way into my shoulders. Its only been going on for 2 days so far. I am very worried is this something I should be worried about?
View 1 RepliesGlands :: Hard Lump On The Right Side Of My Neck
I have a small hard lump on the right side of my neck where it meets the jawline. It seems to be quite deep and I have had it for at least 2 months. It was bigger about a month ago, where it was visible on my skin but has become smaller although it does not seem to be disappearing.
View 1 RepliesLeukemia / Lymphoma :: Pea Size Lump On Right Side Of Neck
I found a pea size lump on my right side of neck in between my ear and collar bone but more close to collar bone. It does not hurt when I touch it but I have been touching it too much it causes the area to hurt. When I feel it it feels like it's on my neck muscle. I'm scared of what it could be. It's giving me anxiety and I just want to know if anyone else has had this or knows what it could be. I felt this a couple days ago I'm not sure how long I've had it but I did come down with a cold a couple days ago and a fever etc and I also had minor ear pain and my wisdom tooth seems to be a bit inflamed I can tell on my cheek. It might be from that but not sure. I'm taking antibiotics for the last couple days but ts still here. Not sure what to do I want to stop worrying.
View 1 RepliesLymphadenopathy :: Hard, Painless Lump On The Left Side Of My Neck
I am 39 years old. I have a lump about one and a half to two centimetres in size on the left side of my neck midway between my ear and collar bone. It has been there for at least over a year and a half, possibly longer. It is hard (feels like a round bone) and painless, even when firmly pressed. There is no colouration or abnormality on the skin above or around the lump. I have seen several doctors at the same hospital here in Japan where I live (they keep referring me to different departments within the same hospital), all of whom say it is either a schwannoma or a lymph node tumor. They also tell me that there is a high risk of performing a biopsy (needle or open) because there are a lot of nerves in the area of the neck where the lump is located. All of this has also been explained to me in either low-level English, or fast Japanese which I am not good at. It has been extremely frustrating, as I feel I haven't received a great explanation of any diagnoses or what my options are. I have been referred once again to another doctor, this time in the ENT department, by a doctor in the oncology department whom I saw today, my 4th visit (and department!) to date.
View 1 RepliesNeck Pain And A Small Lump In Neck
I have had pain on the left side of my neck for about three years now. About 4 months ago I felt a Marble size bump on the same side as my neck pain. My neck pain does not stop me from doing things. I can move it side to side and up and down etc. The neck pain is more like a pain that doesn't go away but like I said it doesn't stop me from doing things. What could this be? Can anyone help me with this? I have a doctors appointment at the end of September.
View 1 RepliesSinusitis :: Back Of Neck/side Of Neck Stiffness / Swelling?
I've had chronic severe sinusitis for a couple years now and now am bedridden from it from being too weak and toxic feeling. Anyway, Most of my infection is on the left side and I have swelling on the left side of my neck and swelling/stiffness on the back of my neck too.
View 4 RepliesLymphadenopathy :: Itchy Lump At The Back Of Neck (7 Yr Old)
my 7 year old son has had a lump on the back of his neck for a few months now. I took him to the Doctor and they said its nothing to worry about and put him on AntiBiotics but it didn't do anything.. It moves and can see it clearly. he says it gets itchy and it does cause him a bit of pain. especially when his shirt rubs on it.
View 1 Replies