Chiari Online Support Group

About the Greetings and Introductions category


#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


#2

Hi my name is Nicky I have had Chiari surgery last May, after being diagnosed initially with a Stoke they found it was my Chiari symptom causing the problem. I recovered very quickly and have had no side affects, my surgeon was brilliant at Romford in Essex. But since having a heavy cold and chest infection, my head neck and shoulders feel, like I did previously, sleep is overwhelming me and pain awful. Does anyone else have these problems from colds or generally exhausted (my gp keeps telling me it is the menopause as I am 52).


#3

Hello, I am Cassidy. A little over a year ago I heard Chiari for the first time. I was having extreme headaches behind my right eye and after some scans my primary doctor mentioned Chiari. After going in off and on for about two weeks the doctor did a spinal tap. The results came back that I had a high white count, their diagnosis was meningitis. They were never able to pin point the bacteria that cause meningitis. After my hospital stay the headache severity was lessened some, but the frequency and fatigue did not. Over the next couple of months I just dealt with the pain and irritating headaches with ibuprofen, but they never went away. In June I started with Topamax, which helped the severity, but not the frequency. In September severe headaches started again. About every two weeks I was in to get Toradol shots as I couldn’t go to work, take care of my daughter, or function. In late October I saw a neurologist for the first time. She put me on propranalol, which just dull the pain. She again mentioned that she saw Chiari on my scans, but didn’t believe that was my issue. In November I found out I was pregnant, the neurologist seemed to dismiss me after this. In late December I started to notice changes with my symptoms; EXTREME fatigue, dizziness when I bend down/sudden movements, stiff neck, pain across my shoulders, and the headaches are constant behind my right eye, down the back of my head, & in my neck. I have done some research into my symptoms since my neurologist has dismissed my symptoms and it seems as if Chiari may be what is causing them. At this point I just want some relief and need to know what I should do next.


#4

Hello. My name is Tina and I was told about a year ago that I have chiari 1. I go for preadmission in June 2017. My issues started about 2 years ago , I started getting a cough and it felt like my head was going to explode. I went to my doc and he told me it was a cold. I went about a year with it and had enough went back to the doc and told him it had to be more than a cold, so he sent me for a MRI which showed that my cerebellar tonsils have dropped down into my Brain stem 10 mm. So I was sent to see dr Lownie in London ont. he did several different tests on my motor skills and found that I also have tremors and some other side affects. He suggest I have surgery. I’m very scared of the surgery it’s a 5 hours long He also discovered a cyst on my Brain which he said he will pop. Advice anyone


#5

Hi, my name is Allyson. I have just recently been diagnosed with Chiari I Malformation with a 9mm displacement. I have not met with the neurosurgeon yet because of some issues with health insurance, but after speaking with several friends working in the neuro dept, it seems like surgery may be required. I have joined this support group because I have found that it is difficult to explain to friends and family what I go through each day. Actually I believe most think my symptoms are psychosomatic. Just by reading some of the posts on here, I have started feeling less and less alone. So thank you to all who have and are sharing their stories!


#6

Hello, my name is Shelley and I was diagnosed with Chiari Malformation type 1 in 2015. It was after I had slipped and fell on some ice and could not remember if I hit my head, so drs did ct scan and mri to rule out bleeding and/or concussion. Since then I have been trying to do research to find out more information on what to do and how to ease the symptoms because I know nothing about chiari and when I was diagnosed with it was the first time i ever heard about it. I am scared about it because i have 3 small children and do not know what symptoms are or if symptoms i am having are related to the chiari or something else and husband works and i am afraid to be left alone because i am afraid something serious is going to happen


#7

Hello…my 37 yr.old extremely active daughter was just recently diagnosed with CM…started with bruising on her right ankle and progressed quickly to paralysis of right leg and hand…is currently in a leg brace, neck brace and arm sling…surgery scheduled for end of month…she has had to prior brain surgeries for triennial neuralgia now this! Worried sick…hope and success stories or what to expect are greatly appreciated…tyia


#8

Two prior surgeries for trigeminal neuralgia***


#9

Hi everyone my name is Samantha and I was diagnosed with Chiari malformation when I was 27. Growing up I had all sorts of different help issues and nobody could figure out what was wrong with me until I was 27 when I ended up going to the hospital for what my doctors had thought was a severe sinus infection which ended up to be Chiari. Since then I have found out that I have EDS and POTS and so much more. Basically my entire world got turned upside down and inside out in just a few months. Since I found out about it I have been trying to find help which I did find one doctor that knew about Chiari but did not know much about EDS. That one particular doctor did a decompression surgery which helped a little bit but honestly that was about it, it didn’t do very much to help at all. Since that surgery though I have been trying to find a new neurologist that knows more about my condition to see if I can find some type of help. So the sad part though is it’s been years and still no luck. The one good thing that came out of all of it though is that I finally got excepted for disability so that helps out a lot with not being able to work because for me and my condition has disabled me. Anyway that’s little bit about my story I’m just trying to see if I can find help but also find others that can relate to. It would just be so nice to talk to others that know what I’m going through and have been what I’ve been through and still go through every single day. Well I hope everyone has a pain-free day!


#10

Hi I’m Julie, I have suffered from terrible headaches in the back of my head since puberty. About 11 years ago I had a fall where I hit my head and back, about two months later I started to have dizzy spells. I went to my doctor, but he didn’t take me seriously. After three more months I went to see a different doctor who then sent me for X-rays. On my return visit they did a few neurological test and decided to send me to see a neurologist. This took 9 months. By this stage I was having dizzy spells and blurred vision and numbness down one side of my face. I then had every test done, only for my neurologist to come back and say your brain has slipped down the back of your neck, don’t worry about. My husband was horrified by his answer, lucky for us my husband has a friend who is a head doctor at the Eye and ear Hospital, she listened to all of my symptoms and managed to get me in to an epilepsy clinic with in a few weeks, they ran more tests and a tilt table test which is horrible and I felt like I was going to die. By this stage my turns had become worse where I was not only dizzy, had blurred vision numbness down one side of my body and I couldn’t talk and this was happening everyday some times twice a day. Migraines most days with extreme pressure from blocked CF flow, I was then seen my a neuro surgeon and where I was told that if I didn’t have surgery this was going to kill me or I would have a massive stroke. My mid brain was squashed in half my head had dropped 2cm down my spine, when I turned my head I cut of the blood supply and herniated cerebellum. I have a fusion from C1-C6, titanium plate where they removed part of my scull and a brace to stop my head turning and they managed to raise my head about 1:5 cm.
I still have months where I have headaches everyday and suffer a lot of shoulder/ neck pain but I’m alive and around to enjoy 4 beautiful grandchildren.