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 RepliesI 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 RepliesOver 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 RepliesOpinions 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?
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 RepliesI 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 RepliesI 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 RepliesI 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 RepliesI 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 RepliesToday 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 RepliesWas 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 RepliesI'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?
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 RepliesHi all, I was born with Kyphosis, never had surgery or treatment, apart from physio. Live in constant pain. Am on high doses of painkillers. 3 Years ago I was diagnosed with Syringomyelia. I was wondering if there was anybody else that has either Scoliosis/Kyphosis AND Syringomyelia, and would like some tips on how to manage.
View 1 RepliesI am 41 years old and was diagnosed with Syringomyelia and Intramedullary ependymoma tumors about 2 years ago. I have suffered extreme nerve pain since the biopsy of my main tumor at C7, to the point that I couldn't stand having a shower or my child touching me:yikes:because of the pain! Also increased neurological pain in the whole of my body.
I say thank God for Gabapentin... I take 1800 mg a day which enables me to function better than I would if I didn't take the drug. I get tired so I rest (I can not put this solely down to Gabapentin because my illness also has this effect). The only side effect I have noticed is 'claustrophobia' particularly in the MRI machine I never had it before I started taking Gabapentin ....
I always say 'If I could only choose one drug' Gabapentin would be it every time even before my pain killers.
However, what I could not find an answer for... is how long did it take for the choking sensation to develop?
Two days ago, I was sitting in front of tv, chatting with family... then all of a sudden I felt like there was something caught in my throat.... the feeling that usually would go away after u have a glass of water. I ignored the feeling and had a sip of my now cool cup of tea and it didn't help. the choking feeling was getting stronger and i ran to the kitchen and grabbed a bottle of water... I had the whole bottle and the feeling didn't go away... i thought that's strange...
I didn't think much of it.. and it stayed till the next morning (yesterday). I managed my day by drinking lots of water... it feels better when i swallow water... I hoped the feeling will go away by the end of the day.... but it did not and at night i went to my GP who said i have soar throat. he gave me Claritin and that's it. I took it... woke up this morning.... no change at all.
now its almost midnight... just four hours ago i felt like it was getting worse... i can no longer laugh hard or talk freely the way i used to. i feared that it might get worse and tomorrow i'll have trouble breathing or faint.
I went back to my GP, this time i was examined by another doctor. she examined me and said there is no sign of soar throat and referred me to a throat doctor... the appointment can only be arranged tomorrow morning but i guess it won't be sooner than a week or two. she also requested blood tests which will happen tomorrow.
now, my question again... if it was a nudel or a thyroid disorder... and you went through the choking sensation... did you just felt suddenly??! Or was it a thing that happened slowly over time?
I do have one note...
Before I felt the choking feeling, i was having weird sensation that a strange smell is coming from my throat. This started on thursday so four or three days before the choking started. is this relevant?
I seem to get rashes often from different antibiotics. My allergic to or sensitive to list is ever growing. I recently was taking clindamycin and got a "rash" that looks like little white and red pimples. It started just on my face. I haven't taken any in over a week, but it's still all over my face and back and front of my neck. Has anyone else experienced this, and is there anyway to make it go away. I've grown accustomed to hives, but this is different. I should also add, I had an infected tooth and my period. Could these have anything to do with it?
View 1 RepliesWhat is the effect of tadalafil in diabetic patients..
View 1 RepliesHello my mother has diabetes and she is trying to Control it, I was wondering what she is allowed to eat? cereals or any other things like that. I have searched online but unable to find something that she can actually eat. I know she's not allowed to have carbohydrates but I can't find things without it, I think 50/50 bread and brown paste are allowed but she can't live on this diet forever.
The past 9 weeks I treated with olysio and sovaldi. They stopped at 9 weeks. The test came back at week 8 still positive. Tx was stopped. Geno 1A, Past biopsies showed stage 1 mild fibrosis. In 2010 they didn't get a good sample but told me it was probably still stage 1, but not sure. Now after an ultrasound that's "suggestive" of cirrhosis I fear after failed tx the progression will bring me down even quicker. Anybody have any GOOD info that olysio/sovaldi speeds up the virus progression? Dr.says no. Have been positive for 50 years. Since 1999 I have lived a very healthy lifestyle. For most of the years I supplemented and took the herbs to keep my liver in as good of shape as I could until a "cure" came along. So much for that idea. I never did the interf/riba. The past couple years for some reason I stopped taking my supplements, (glutathione raising supplies etc) I used to be a member of a group that was alternative oriented, then I stopped that. I did the q80 variance test and it was positive, and so I went ahead with the tx. My question is: Is this new drug coming out only for those who weren't sensitive to the q80? Or is it supposed to take care of tough bugs like mine? Im hopeful I will be eligible for the new tx. Im 68 now. I am starting to experience symptoms, unpleasant symptoms. Good days/bad days. Sorry for rambling but I saw Blue Metals comment about disease progression after failed tx and it kinda spooked me.
View 3 RepliesI've suffered with chronic pain in groin area for over 2years now after a few tests and Mri exam my specialist Dr Chawla told me there's no cure for Neuropathy besides help with medication and pain clinic. None of the painkillers have worked, bad time with side effects! I recently had Acupuncture with Gp only for the pain to spread all over body.
I have had no help and as single parent to 2 children this puts a strain on my depression. I don't want this to take over my life.