Just thought I would say hi to everyone. I am new to this group. I am also new to the whole chiari I malformation thing.
This is a little about what I've been through up until now:
I had an MRI back in 2004/2005 and this condition never showed up. I was told my brain was fine and there were no abnormalities. I have suffered with widespread pain since I was 21/22 yrs old, I am 36 yrs old now. I was finally diagnosed with fibromyalgia in 2010. I have been placed on lyrica for that which it does help take the edge off the pain. And then back in July I had a blackout. I fell in my kitchen and hurt my head, chest, arm and thigh. When I saw my primary care doc, she decided to send me in to a neurologist, ENT and of course have another MRI done. This time the MRI shows chiari malformation. Mine is at 7mm. I realize that a lot of the symptoms are like those of fibromyalgia. I found out about the chiari malformation yesterday when I went and picked up my MRI report and images. I am having a hard time dealing with this. Because for years I was told I had fibromyalgia. In 2010 I was diagnosed officially by a rheumatologist. I don't know if anyone else still has fibro and this. But in the exam 16 of the 18 points were very tender and made me want to jump out of my skin. I just feel like was everything they told me all this time a lie? I am feeling a lot of emotions about this new news. I also have problems with my ck levels and they have always said I had an underlying illness but what it is, they do not know. I am feeling so lost and confused.
Jenna, you are not alone. I could not say it better than Em, she hits the nail on the head. Just want to underline that vitamin deficiencies, dysautonomia, Ehlers Danlos Syndrome (google Beighton score and Brighton score), and sleep apnea are all common with Chiari. My advice is to pace yourself and research till you feel you understand your conditions inside and out- because as you seek treatment you will find that most professionals know next to nothing about Chiari, and what they do know may be incorrect. Finding a true Chiari specialized NS is hard! But is your best bet.
Thank you Emmaline, I will check those out. But I only blacked out once? Does that mean I could again? I hope not. I was really scared when I did not feel good. All I could think is I better go to bed, but I was really thirsty and usually I have a cup of water on my desk, but that night I didn't. So I made the mistake of thinking I could get water and hold on to the cabinets on my way to my bed. And then I was out. My hubby found me and said I was really pale and unconscious. But he found me sitting up against the wall in the kitchen. I don't even remember getting up off the floor into a sitting position.
Emmaline said:
Welcome Jennabug!
This disgnosis is very overwhelming! Fibro has become a dumping ground for a diagnosis that stops right there...instead of a diagnosis of where it actually belongs. Chiari is probably the culprit, but along with that is Vit D deficiency. Most with a chronic illness has deficiencies with many vitamins and minerals. NL in general tend to minimize the effects of Chiari, instead calling each symptom as another illnesses. Treatment will start with someone that is familiar with Chiari, most likely a NS. Doesn't mean you need surgery, but that is the main treatment for Chiari to stop the progression.
Your blacking out could also mean you have dysautonomia, or POTS. EDS is another that has to be screened for. Here is a couple of links for you to get started. Your best bet is to educate yourself to ask the questions that need to be asked prior to getting treated. The medical community have a long way to go in treating this illness.
A lady told me yesterday that there is other tests they can do to confirm fibromyalgia. One being a blood test. When I was diagnosed, I had the traditional test. Where they examine the tender points on the body. But if there is something more concrete with being sure, I certainly wanna know! :)
Nykki said:
Hi there Jennabug,
I too have been diagnosed with Fibromyalgia after suffering for years with Chiari. I truly believe that the years of pain with no relief creates Fibromyalgia. I know that it can be quite overwhelming, frustrating, and even depressing. Hang in there. And find the right doctors,
I will have them check my vitamin levels, I don't think they ever have before. I do have sleep apnea, was diagnosed in 2011. I use a cpap nightly and just had another sleep study done where there was no change, so they uped the air pressure on my machine. I have googled to see if there are neurosurgeons that specialize in chiari, there are three that I have seen. They are down in Tucson however and I live in Marana (a small little suburb of Tucson) but its not a big deal. I often have to drive to Tucson anyway for other docs.
jcdemar said:
Jenna, you are not alone. I could not say it better than Em, she hits the nail on the head. Just want to underline that vitamin deficiencies, dysautonomia, Ehlers Danlos Syndrome (google Beighton score and Brighton score), and sleep apnea are all common with Chiari. My advice is to pace yourself and research till you feel you understand your conditions inside and out- because as you seek treatment you will find that most professionals know next to nothing about Chiari, and what they do know may be incorrect. Finding a true Chiari specialized NS is hard! But is your best bet.
Jenna,I was diagnosed for 20+ yrs. with fibromyalgia and that was not the correct diagnosis.I am out almost 2 yrs.since surgery and I know now I never had fibromyalgia.In my opinion that is used by Dr.s when they don’t know about chiari not to say there’s not other conditions that cause the body to be tender all over but the term fibromyalgia means muscle pain we don’t need anyone to tell us we have muscle pain.In my case it was defiantly a wrong diagnosis,maybe a lot of fibro. patients may be chiari patients and because of a lack of knowledge in this field.I hope you can get to a specialist that is your safest treatment for this condition,in my own experience it was my only way out. I had almost a chiari 0 but was very symptomatic this means my herniation was almost undetectable,herniation is not a good measurement for the patients suffering.Best wishes that you get help soon.
Thank you Lynn, this is my first thing on my list to do. I was also advise to rule other things out as well. This is frightening for me with the whole surgical experience. I am going to wait and see. I am not ready for that step. My husband and I talked a bit about it tonight after reading about it and watching some videos on how its done. Not sure how long I had the chiari. But I do know now and now its time to arm myself with as much education as I can about this so I can prepare myself from here on out.
Lynn Messer said:
Jenna,I was diagnosed for 20+ yrs. with fibromyalgia and that was not the correct diagnosis.I am out almost 2 yrs.since surgery and I know now I never had fibromyalgia.In my opinion that is used by Dr.s when they don't know about chiari not to say there's not other conditions that cause the body to be tender all over but the term fibromyalgia means muscle pain we don't need anyone to tell us we have muscle pain.In my case it was defiantly a wrong diagnosis,maybe a lot of fibro. patients may be chiari patients and because of a lack of knowledge in this field.I hope you can get to a specialist that is your safest treatment for this condition,in my own experience it was my only way out. I had almost a chiari 0 but was very symptomatic this means my herniation was almost undetectable,herniation is not a good measurement for the patients suffering.Best wishes that you get help soon.