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 :: 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 :: 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 :: 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 RepliesNortriptyline For A Pain In My Leg ?
Just been given nortriptyline for a pain in my leg ?
i thought these were for depression ...
Neck Pain :: Nortriptyline Vs Gabapentin
I know we're all different but due to neck/shoulder/arm/face pain with radiating pain to my arms at times I was previously prescribed pregabalin, that gave me heart palps and rls, now tried gabapentin and I think I had some sort of adverse reaction to it as my side effects were quite severe so I'm wondering where to go from here re meds. I've tried amitriptyline but not for long however the short time I took it it did nothing. Was thinking of trying nortriptyline as an alternative as read side effects not so bad.
Does anyone have any experience with Any of these 4 drugs or an alternative and if you've tried nortriptyline how well it did work vs it's side effects.
Or if anyone has found a miracle drug please let me know. I think key for me is muscle relaxation and nerve burning reduction.
Pain Management :: Amitriptyline Vs Nortriptyline
I have suspected Piriformis Syndrome & SI Joint Dysfunction also causing sciatica, have also had some nerve pain in the back of my thigh, occasional calf cramps, foot cramps, and foot pain. Since my last Cortisol injection into my SI joint it has made everything horribly worse, I cannot sit now for very long without severe left foot pain that makes me feel nauseous it's so horrible. I have informed the consultant of this and am on a waiting list to go back and see him, this is the 2nd time the injections have caused me extra pain so have now lost faith in these and want to try alternatives.
My consultant previously wanted to put me on Amitriptyline but I have been on this before and was taken off it due to serious sedative side effects (even fell asleep eating in a restaurant) was on a small dose and still didn't improve with time. So I've read that Nortriptyline is an alternative with less side effects, can anyone advise if they have had less sedative side effects with this than Amitriptyline please?
Nortriptyline For IC And Generalized Nerve Ending Pain
I've been just prescribed Nortriptyline for IC, generalized nerve pain & Insomnia. My GP says it's a more recent form of Amitriptyline & better for nerve pain. she's started me off on 10 mgs x1 week, 2 x 2 weeks, & 3 x one month if necessary.
View 1 RepliesChronic Costochondritis - Cortisone Injections Are Helpful?
I was diagnosed with costochondritis when I was 14 and have had it for five years now.
I can manage the pain when it isn't flaring up but for the last few months it has been very bad to the point where I can't sleep. My job is quite physically demanding sometimes which causes the flare ups.
I recently went to my gp and requested x-rays as I haven't had any taken since I was diagnosed. Last year I had a bone scan but nothing showed up.
Last week the doctor said that I also have mild thoracic scoliosis curving to the left which may give a reason for the costochondritis, finally!
I have decided that the time has come to get cortisone injections as other medications/treatments don't relieve the pain. I will be seeing a specialist in a month's time.
Has anyone else had the injections? Did they help you? What was the whole procedure like for you?
Cervical Spondylosis :: Wearing A Soft Collar At Night Is Helpful
Good advice here on the subject of cervical spondylosis, apart from the wearing of a support collar maybe. I have found wearing a soft collar at night very helpful in preventing an attack of neck pain turning into a horrible headache by the time morning comes. And very occasionally, it's useful even in the day for severe flare-ups. But I completely agree that neither collars nor corsets should be worn for prolonged periods. My problem started nearly 30 years ago after a car accident, and I'm able to deal with it by the collar at night, Dihydrocodeine, and occasionally voltarol.
I'm sure it's important to keep as active as possible, but families (and GPs) need to understand that it can be a significantly disabling condition for a minority of us. It has stopped me working, and limits my ability to paint, which I love to do. If diagnosed with it, take all the physio and other help you can get as early as possible, and ensure you are not written off by the medics - badger them until you get help that works for you.
Ankylosing Spondylitis :: Back Braces Helpful In Maintaining Body Posture?
I'm started bending forward due to AS, my neck has also bent slightly rightwards. Will back brace assist in keeping my posture.
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