Chiari Malformation :: Decompression Surgery Will Fix Vision And Hearing?
Jul 23, 2014
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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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 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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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.
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 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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On Dec 3 I had a decompression osteotomy on my right toe for hallux rigidus. My doctor told me I would be running at 2 months and completely back to normal at 3. It is over 2 months and I still have a lot of pain and swelling. Running is out of the question and I am still limping.
I am interested in others' experiences with this surgery. I am supposed to have it done on the other foot as well, but I am simply worried that my right foot may end up worse off than when I started.
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I am pregnant with my second child and 20 weeks into the pregnancy. I have had some really bad headaches this entire pregnancy so far but the dr told me that's typical as I had some severe headaches before pregnancy. Now the headaches have gotten worse, about a week ago I started suffering from blind spots in my right eye and every time I would close my eyes I would see this bright ring flash in both eyes. After about two days of this I went to my eye dr who said my actual eye is fine but it may be a neuro issue. Well it has continued but I don't have insurance nor a lot of money so I have been to another dr yet and last night and today I am also suffering from temporary hearing loss when my headaches get bad and my vision starts leaving me (now in both eyes) . I am scared out of my mind and just trying to figure out some type of explanation as to what might be going on.
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I'm not particularly worried about this but I'd rather know what it is. I quite commonly will get, after stretching or getting up suddenly, flying black dots in my peripheral vision. These tiny black dots just appear, fly in a direction, then disappear. A bit like a swarm of flies in the corner of my eye except they keep appearing and disappearing individually. It might last up to five seconds or so. Then it's gone and I feel fine. I'm pretty sure I've had this for years.
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I am nearly 6 weeks post op decompression of L4-5 and have severe nerve pain returned in both legs. Up to now all I have been told is it is early days, but as time goes on, it is getting worse. Has anyone else any experience with this problem. I can't get an appointment with the surgeon for another 6 weeks and am getting very frustrated.
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About a week ago, I was at home at the computer (I believe I was listening to music at the time), and I noticed that the hearing in my left ear had been significantly diminished (but not completely gone). About a minute (perhaps even less than a minute) later, it returned completely to normal, and so I assumed that it was just ear wax or something, and everything was fine now. However, a few seconds to a minute later, it went back to being diminished again. I can't remember for certain if I felt anything physically when all of this happened, but there may have been something that I felt in my ear - which led me to believe it was probably just ear wax.
I have researched on-line for possible solutions to this kind of problem, and I have tried every possibility that I could - peroxide, warm olive oil, blowing as hard as I can with my nose and mouth shut, blowing as hard as I can with my nose and mouth and other (good) ear shut, nasal decongestant (which successfully clears up my nose, but doesn't have any effect on the ear), hot steam bath, Similasan Ear Relief drops that are supposed to clear up water in the ears, jumping up and down with my bad ear tilted toward the ground, jogging, and of course trying to dig out ear wax with the ear wax curette that I have. Unfortunately, nothing has worked, and my hearing has been about the same ever since a week ago when it went out (diminished) for the second time.
I have been able to remove a lot of ear wax with the curette, and sometimes it seems to make it a little better, but it never restores my hearing to normal. Sometimes I feel like I am right at the spot where it is clogged up (if indeed clogged ear wax is the problem), because the curette seems to be hitting a spot that's clogged with ear wax (judging from what it feels and sounds like), but then when I dig out a bunch of ear wax at that spot, my hearing is still the same or perhaps only slightly better. Perhaps I am actually pushing the ear wax further inside, which was mentioned as a possible negative effect of trying to remove the ear wax yourself. Also, I am wary of not poking too hard or too deep, as that was also a warning given at the sites I visited in my research.
Swallowing never seems to do anything, but it's interesting that when I have a strong belch, I can feel pressure inside that left (bad) ear, and it really feels like it's about to burst out and expel whatever is stuck (if it's the case that something is stuck), but it never does. Maybe whatever is stuck in there [ear wax, presumably] is just in so tight that nothing seems to be able to remove it. However, the odd circumstance that occurred when the problem first originated - which is the fact that it got better right after getting clogged up, and then got clogged up again - would seem to suggest that there may be another reason for this happening, other than plugged-up ear wax.
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I have been experiencing the lower back pain which is local from last 5 years. My MRI reports says that there is a central disc bulge at l5/s1. Where outer annular tear is intact.
I have seen a chiropractor who has recommended spinal disc decompression sessions on Hill DT.
As per the doctor, it will relocate the disc back to its normal position and make the disc healthier as before.
Just would like to know if someone has gone for the similar treatment for the similar problem. If yes kindly share your experience.
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I am 45, Male ,married with a daughter. active in profession. My hearing is facing problem as I am unable to hear soft voices in meetings & discussion. Doctor has suggested to go for Stapedotomy. Another option is Hearing Aid. I am very anxious to know how much risk is there to go for Stapedotomy? Can It worsen the hearing? Instead of 45, if I wait for another 5 years, will it be same effect of Stapedotomy or surgery at that stage will not bring any result?
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I am frustrated and hope someone can help. I am a male in my early 50's and I am very healthy. I have never had any problems with my hearing but now my right ear is clogged and there is a clicking sound when swallowing, drinking, etc. This is a result of head trauma.
In late June 2013, 9 months ago, I did something very stupid and have regretted it ever since. I was using a Hi Lift jack, that is normally used for 4x4 trucks, etc., to jack a trailer up. I was stupid and leaned over the jack to look at something on the trailer. The leaning over meant I leaned between the jack handle and the lifting part of the jack, and I was not holding the handle. Just at that exact moment the handle sprung free and slammed back up right, hitting me squarely on the left side of my head. I wanted to pass out but did not. However, it hurt like heck and for the next 12 - 24 hours I could barely talk and eating was out of the question. My jaw and head hurt so bad. And, after this I noticed my right ear was plugged and clicked when swallowing, drinking, and so on.
I thought it would eventually go away as I was sure I had some swelling, etc from the jack handle hitting me but it has not. I finally went to my family doctor and he diagnosed me with TMJ and sent me to a doctor specializing in craniofacial issues and TMJ. He said my right side of my face hurting more than the left side that actually took the brunt of the jack handle force was correct because everything got shoved to the right. I started wearing a lower mouth piece in early Dec 2013, approx. 5 months after the injury. He stated my jaw was dislocated slightly and the mouth piece should eventually fix it and end the muffled sound and clicking. Well, here it is almost 4 months later and there has been zero change. He did add a water filled additional support for me to wear at night to see if lifting the mouthpiece higher will help. I believe the idea is for the jaw to be able to relax to allow any residual swelling to decrease without any tension on the jaw and muscles.
I was thinking if the mouth piece was to gradually reposition my jaw then perhaps I was out of alignment in that area and the chiropractor I had seen years ago could help. He could not find anything wrong and suggested I find a person who specializes in craniosacral massage therapy. I was unsure what that was exactly and after reading about it decided I would pass on it given it's reputation. I then thought that perhaps an ENT might be able to figure this out so I scheduled an appointment with one.
I saw him 3 days ago and he could not see anything wrong although he did think my right ear was interesting because he said the ear drum was not firmly attached to the bone, but that it was not a problem. He did refer me to a different office to a different ENT for a hearing test and a Eustachian tube function test and I had that done today.
The Eustachian tube function test showed that everything was fine and functioning properly.
The hearing test was fine and did not show any loss of hearing. What I did find interesting myself was that the test administrator's voice was louder I my muffled right ear although she said she had not changed the volume at all from when she was speaking into my left ear. Weird...muffled side was louder.
I go into another room and this different ENT doctor looked in my ears, throat, and nose, and said there was nothing wrong with me. I was asked if I had allergies of which I replied minimal issues since her colleague had done my septoplasty 6 - 7 years ago. In fact, most people I know are suffering with allergies the past few weeks and I had my biggest issues 5 days ago. I took two of those little red sudafed pills and 400 mg Ibuprofen and that took care of my allergy issue. This ENT prescribed me a steroid nose spray (nasonex?) spray and I was instructed to spray it straight back in my nose into the eustachian tube area and not straight up the nose like normal nose sprays.
This ENT doctor did not see anything interesting with the eardrum not being firmly attached to the bone, meaning she thought it was attached completely. So, there is a difference of opinion between ENT doctors. One sees something interesting, one does not.
This is so frustrating because there is something wrong with my right ear. When I plug my nose and blow like you do when you want to pop & clear your ears my left ear clears like normal but the right ear does not. It is plugged, it is muffled, and it clicks. There is no pain, and no discomfort, but it is irritating because it is not right. It should clear.
What is gong on with normal hearing, normal eustachian tube function, two ENTs look into my ear and do not see any infection, do not see any wax build up, nothing. They say everything is fine, even though it is not. They know of the injury to my head but cannot find anything wrong.
Another thing I did was back in December I was take 800mg of Ibuprofen twice per day, for a total of 1,600 mg, for probably two solid weeks, and that was after 2 days of taking hydrocodone. This was a result of a doctor doing an outpatient procedure on me, wait, did I say doctor? That is another story for another day but what I am getting at is since Ibuprofen helps with swelling I would have thought any swelling any place in my body would have been taken care with that high a dose for so long. But, there was no change in the muffled and clogged and clicking noise issue in my right ear.
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