Hello everyone! I am new at all this but was hoping to find some answers. I have been having problems for years, fainting at age 15, migraines at 19 and after the birth of my 3rd child, everything went majorly downhill. I have been diagnosed with neurogenic syncope,fibromyalgia, irritable bowel, tachacardia with arrhythmia, small nerve fiber and autonomic disease, along with so much more. I was being tested for MS and found out I have a Chiari in March of this year. My memory is not what it use to be, I actually have forgotten where I was at in a very familiar pace, and can't find my drink right after I set it down on a normal day, I am shakey all the time and have had problems swallowing also. I just went back and got another MRI and flow study to find out that it is 5mm but the flow was good. It hurts my neck and head to chew certain foods, laugh to hard, cry and sometimes just turning my head gives me a streak of pain up my neck into the back of my head. I am tired all the time, my fingers are always tingling, I am lucky to go one week without peeing myself and am really at my witts end. I use to be a CNA who works 12 hr shifts, and now I a lucky to play with my kids or do chores without a break every few minutes. The neurosurgeon said my chiari is small at 5mm and with good flow he doesn't believe that it is what is causing my symptoms but I felt that maybe it was being the nature of my headaches, and everything I read says the size doesn't matter and all my symptoms line up. I guess my question would be if anyone knows, is it possible to have a chiari give me all these problems with normal flow?
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Hey Reece! All those symptoms you have sound just like chiari symptoms and I also have many of the same symptoms. There are people I read that had good flow but still suffer from symptoms. One thing that comes to mind because i know this from my previous mris is that you can have crowding and part of your herniation can put pressure on your brain stem and spinal cord which can cause some of your symptoms. Also the size of your herniation has no factor on the degree of symptoms. I’m fairly new to this I found out I had chiari this January and just had decompression surgery 3wks ago but wanted to share a little of what I know. All I’ve done is research everything I could about chiari when I found out and this is the best support group to help you along the way. If it is possible try and see a chiari specialist. It’s also good to get a second opinion or more until you find a NS that you are comfortable with and you get all your questions answered. You have been suffering a long time and you need some relief never give up keep researching until you find a NS that will help you. Know that you are not alone and there are lots of knowledgable people here that will be able to help guide you in the right direction. Take care and keep us posted on how your doing!
thank you so much, I have always kept a clear head but this last yr every dr I have seen has basically told me everything I have is uncurable, or too far progressed and it is only pain control from here. I do appreciate the help!
Hi Reece.
I also have many of your symptoms and only 6mm herniation.I have benefited from Abby`s information and I hope it helps you as much as it has helped me.Hang in there,you are not alone .I don`t have any flow restriction, but I do wonder what is happening inside our heads.I only hope an autopsy is not the final answer.
Best of luck.
I do have dysatonomia, the Cleveland clinic did say that but never did an MRI. They did a hemodynamics test and found that 37% of my blood goes to my abdomen upon standing instead of to my heart, is that the same? The DR closer to home found the Chiari. My neck pain with the headaches specifically behind my eyes and in the back of my head is the big throw off for me. Is it normal to have a headache come and go within minutes? Thank you so much for the help!
Yes, my lower back hurts a lot, actually straight through my hips making it hard to walk at times. I have a birthmark but not on my back at all. I never researched that though. I was doing ok until about 5 yrs ago and that is when everything went bad, every year things have gotten so much worse, with more symptoms and the ones I do have worsening.
Reece, I had a small herniation with no serious flow disturbance. One of my vertebral arteries was compressed and the nerves were so compressed they grew there own tumors. Chiari is just not so cut and dry it can effect us all differently. Abby’s info about the dysautonomia is fitting I think, you may have some other issues too- and a lot of us do- but lots of your symptoms sound very Chiari to me. I think you should start researching and planning to see a true Chiari specialist. Please look into EDS too! Also, many of us have vitamin D, B12, and magnesium deficiencies. Supplementing has had a pretty significant impact for many of us with pain and fatigue. Some other issues that can come along with Chiari are: sleep apnea, tethered cord, EDS and cranio cervical instability. One hardest parts about dealing with Chiari is pushing past dismissive doctors to get validation. Remember you know what you know, you know you have Chiari and the symptoms fit.
Best wishes, jenn
Thank you all so much!! I can't believe how helpful you all have been! I am on vitamin D 2000 a day but regrettably still tired :( My husband mentioned finding a Chiari specialist also, he is so incredibly supportive, I am blessed! But talking to someone who knows exactly how I feel does help so thank you and bless you all!
also, I did have a fatty tumor the size of my hand removed that was over my spine in 2007 after my son was born.
Beeba said:
Do you have any lower back pain? Have you done any research on tethered cord? You mentioned some things that can go with that. You may have what would be called a sacral dimple or been born with a birthmark on small of back. Can even have a patch of hair. Any of this?