Chiari 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 :: 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 :: 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 :: Lump On Side Of Neck
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 ?
View 1 RepliesChiari 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 :: 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 :: 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 RepliesHallux Rigidus Surgery - 2 Months Post Decompression Osteotomy - Still Pain / Swelling
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.
Sciatica :: Nerve Pain Returned In Both Legs After L4-5 Decompression
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.
View 2 RepliesDisc Prolapse :: Spinal Disc Decompression For Central Disc Bulge In L5/S1
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.
Achilles Tendon Surgery Blood Pooling - 7 Weeks Post Surgery
I am seven weeks post surgery for an Achilles' tendon rupture and still have intense pain from the blood pooling when I stand for even a minute to brush my teeth. After one minute I immediately have to lie down and elevate my leg otherwise it feels like it will explode. Has anyone else felt this 7 weeks post surgery?
I also can only bear minimum weight on the leg at this stage. At seven weeks does that sound normal? I had my tear at the connection to the heel and had haglund's deformity where part of my heel broke off. Anyone else have that and is minimal weight bearing at seven weeks normal for this type of tear.
Anything To Help Neuropathy After ALIF Surgery?
Has anyone found anything to help neuropathy after ALIF surgery? It has been 19 months and the pain is increasing. I cannot bear to wear anything except the loosest of clothing, I cannot walk without a cane or walker, I have new bowel and bladder function problems within the last 3 months. Is there anything that would even work temporarily to allow an airport ride? I buy even groceries online. I am in pain management with a respected doctor. I have have PT, water PT, massage, acupuncture, and narcotic medication. The fusion on L4/L5 and L5/S1 is fine; my life is not worth living.
View 3 RepliesPerilymph Fistula :: Is There Any Surgery?
Anyone out there had this surgery? I'm in week 3 and wondering what to expect going forward.
View 3 RepliesPerilymph Fistula - Surgery Or Not?
To cut a long story short - mid August 2014 I did a sinus rinse for chronically blocked sinuses. It went very wrong and I ended up with water trapped in my left middle ear. It didn't come out by itself and the pain and pressure was getting too much. I saw a GP and we agreed on using a nasal balloon to equalise the ears and try to get the water out. I also tried a few valsalva actions.
One day (first week of September), I was using the balloon when I felt a painful loud click in my right ear. This is where my real problems started.
I now deal with: constant tinnitus in right ear, dizziness, vertigo, some nausea, really bad head pressure, auras, vibrations and buzzy feelings throughout body, deep pain in ear - can almost feel blood or fluid in right ear.
Saw GP and it is a suspected Perilymph Fistula of the round window in the inner ear. I am seeing an ENT privately, hopefully in the next 2 weeks. Thing is, I am in England, UK and I am worried that they don't really deal with PLFs. Then I will be stuffed!
I am currently doing as much bed rest as I can as I read online this is best at this stage. I am however very very worried about what has happened. I am worried about leaking CSF fluid too. I certainly have enough head pressure.
Can this really heal with bed rest or do I need surgery? Also, I am scared about my tinnitus getting worse with surgery. Anyone who has had PLF repair surgery, what was the outcome? Did your tinnitus get worse or better in the end? Did the head pressure go? Has anyone recovered just with bed rest?