I just found out today that I have Chiari Malformation, and to be honest I'm not sure how to think, feel, or react to the news. My next step according to our primary dr is a neurologist. She thinks it may explain my years of fibromyalgia, ADD, sleep apnea etc. Is this true? How serious is this? Should my husband and I do anything, or prepare for anything? The diagnosis is from an MRI, and it states I am Type 1.
No, they haven't. I was just reading all over the internet about CM, it's all very overwhelming to say the least. I've come to terms with fibromyalgia years ago, and hearing this today kind of took me by surprise. I had an MRI because I was rushed to the ER with a suspected stroke about a week ago. I was sent home after the MRI, CAT scan, and blood work said I wasn't. The ER doc said it was caused by a migraine. Today was my follow-up from that ER visit, when my dr told me this from the MRI results. She made it sound serious and scary, but then was almost passive about it. I still have pain that I have always dismissed as firbromyalgia, but now its still associated with what sent me to the ER in the first place: left sided weakness with mild pain, occasional slurred speech, exhaustion, trouble concentrating, and an odd disconnected feeling from the world around me.
ChiariPT said:
I would see a neurosurgeon instead of neurologist. The real question is whether or not surgery is indicated. There is a great list of questions on this site for the MD. Yes the symptoms you have experienced may be due to the Chiari. Did they mention if you have a syrinx?
No, everything I've shared here is about all I know. I have been on a sleep apnea machine since my husband returned from Iraq in 2010.Never thought any of these things were connected. I hope I won't need surgery ever again. I have had 6 abdominal surgeries for endometriosis including a complete hysterectomy at age 28 (40 now), I have also had chest surgery similar to open heart surgery to remove a thymoma that was wrapped around my aorta, and pressing on my heart. Surgery would have to be a forced issue for me to even consider.
P.S.- Just looked, no recommended doctors close to me.
I know when I finally learned of my diagnosis (actually diagnosed 20+ years ago, but didn't know til early 2012) I felt a big sense of relief. Searching about symptoms and stuff I realized that it FIT me... from birth and I was relieved to realize that I'm not crazy (at least not about my health... lol) and not just lazy. There is something legitimately wrong w/ me and it does have a name.
Other than that.... I feel frustration because I am not a good candidate for surgery (I don't want surgery anyway though) and there really doesn't seem to be anything to do other than monitor my symptoms and pray that I get SSI approval and can continue to function on some level at least until my youngest turns 18 (13 more years). We have NO experts anywhere nearby and getting to an expert is 100% out of the question. I absolutely adore my MD, but.... I'm just in a 'pattern' of trying to exist and it's pretty crummy.
Welcome, i am sorry about your recent dx, but you have come to the right place. I am newly dx'd also Nov. 2012 and so far this group has been amazing. They all understand how you're feeling, physically and emotionally. Not all chiarians have the exact same symptoms but you will find that between all of us someone is experiencing a symptom you may have a wuestion about. I have learned so much here so far and the support i received has lifted my spirits on more than one occasion. As far as the Neurologist(NL), I agree with the others, a Neurosurgeon will, in most cases, have more answers for you. It's a process and can be frustrating trying to find a dr that takes CM1 seriously, but if you dont get the answers your looking for or dont feel comfortable, keep looking for another NS. Dont let it get you down. I got a bad NS the first time and swore that i was giving up, but with the support i got here and the insistance of my amazing husband, i did my research and have an appointment to see one of the best Chiari NS's in my area. Fingures crossed:) I know this can all be overwhelming, im still learning myself, but if we stick together, we will get through this:) You said you couldn't find a dr., where are you located? we have members from all over, im sure someone could point you in the closest direction. Take care.
I was diagnosed 3 weeks ago. I saw a Neurologist who was worthless though she did want to refer me to a Neurosurgeon. I live in OK but I’m seeing a NS 5 hours away from me first because he’s familiar with Chiari. Secondly I’m seeing a specialist in Colorado. Finally, I’ll see another NS in Texas. From there I will make a decision regarding how to proceed. My symptoms have come on quickly and my life is nothing like it was even a year ago. Nothing I’ve done has offered a solution. I wouldn’t waste time seeing a NL. Good luck!! Keep us posted.
Just wanted to say hi and glad you found this site. It has been a godsend for me. There is so much knowledge and support here, and everyone is so nice!
Sparky
Thank you for taking the time to check. My husband took me out to dinner alone last night so we could talk. He is in the Army, and wanted a plan of attack for this whole thing. Too cute. We discussed traveling to Milwaukee where I'm originally from to see a neurosurgeon my aunt recommended. (She is an RN at the big VA hospital there.)
Beeba said:
Just checked dr heffez is considered very respected in this field. With this travel is not uncommon. You are within a state.
That's actually how I am beginning to feel...relief in a sense. I am also a bit miffed that having underwent several other MRIs, this was never discovered or mentioned then. After looking into things around the web, I am not all too anxious for surgery. I have lived with what I thought was fibromyalgia for so long, it's become a part of everyday living for me. I somehow even managed to graduate college at 40, albeit with some good narcotics, but I did it. I must say that I am surprised to learn that my sudden need for glasses, a sleep apnea machine, and mild incontinence could all be related to this though. I am lucky that my son is now 20, bless your heart for having to be mommy and deal with this. ((hugs))
Teresa said:
I know when I finally learned of my diagnosis (actually diagnosed 20+ years ago, but didn't know til early 2012) I felt a big sense of relief. Searching about symptoms and stuff I realized that it FIT me... from birth and I was relieved to realize that I'm not crazy (at least not about my health... lol) and not just lazy. There is something legitimately wrong w/ me and it does have a name.
Other than that.... I feel frustration because I am not a good candidate for surgery (I don't want surgery anyway though) and there really doesn't seem to be anything to do other than monitor my symptoms and pray that I get SSI approval and can continue to function on some level at least until my youngest turns 18 (13 more years). We have NO experts anywhere nearby and getting to an expert is 100% out of the question. I absolutely adore my MD, but.... I'm just in a 'pattern' of trying to exist and it's pretty crummy.
I am all too aware of the doctor dance, and needing to be proactive about your own health. Long story short, I went through that for my endometriosis, and lost the ability to have anymore kids because doctors didnt take me seriously, and catch it soon enough. Thankfully I had my son at 20 (out of wedlock, as my mother pointed out back then, lol). I will definitely be pursuing a neurosurgeon, actually waiting on a callback from the nurse at my primary dr's office.
Thank you for saying that "i am sorry about your recent dx", you are very sweet.
Kristi W. said:
Welcome, i am sorry about your recent dx, but you have come to the right place. I am newly dx'd also Nov. 2012 and so far this group has been amazing. They all understand how you're feeling, physically and emotionally. Not all chiarians have the exact same symptoms but you will find that between all of us someone is experiencing a symptom you may have a wuestion about. I have learned so much here so far and the support i received has lifted my spirits on more than one occasion. As far as the Neurologist(NL), I agree with the others, a Neurosurgeon will, in most cases, have more answers for you. It's a process and can be frustrating trying to find a dr that takes CM1 seriously, but if you dont get the answers your looking for or dont feel comfortable, keep looking for another NS. Dont let it get you down. I got a bad NS the first time and swore that i was giving up, but with the support i got here and the insistance of my amazing husband, i did my research and have an appointment to see one of the best Chiari NS's in my area. Fingures crossed:) I know this can all be overwhelming, im still learning myself, but if we stick together, we will get through this:) You said you couldn't find a dr., where are you located? we have members from all over, im sure someone could point you in the closest direction. Take care.
Oh, bless your heart! That's alot of traveling, thank goodness you are able to. I will be looking into a neurosurgeon...definitely. Thanks for the tip, I will definitely be posting back here as I learn more. This place seems so warm and fuzzy. hehe
Patchoulimama said:
I was diagnosed 3 weeks ago. I saw a Neurologist who was worthless though she did want to refer me to a Neurosurgeon. I live in OK but I'm seeing a NS 5 hours away from me first because he's familiar with Chiari. Secondly I'm seeing a specialist in Colorado. Finally, I'll see another NS in Texas. From there I will make a decision regarding how to proceed. My symptoms have come on quickly and my life is nothing like it was even a year ago. Nothing I've done has offered a solution. I wouldn't waste time seeing a NL. Good luck!! Keep us posted.
It definitely seems that way! I never expected so many responses, and so many lovely people sharing their own stories. Like one person said...I'm not crazy! Atleast about my health. lol I find it interesting that this seems to be affecting more woman and girls. Atleast where I've been reading, more women, young ladies, and parents of young girls seem to be posting than men.
SparkyID7 said:
Just wanted to say hi and glad you found this site. It has been a godsend for me. There is so much knowledge and support here, and everyone is so nice!
Sparky
You have come to the right place with amazing people and resources. I went straight to the neurosurgeon when fluid showed up on a spinal MRI from a sports-related injury since the neurosurgeon would be the one who would do the surgery in the event it's necessary. Based on what I've learned here, I definitely saved myself some frustration by starting there (although I do have to see a neurologist for medications, but my neurosurgeon is in charge of the overall treatment approach).
I was stunned myself when I heard the news (I had to laugh at it by saying I was so smart that my skull was too small for my brain), but it is a relief to know that I am not crazy. The hard part is that there is still a lot to be learned about chiari malformations and its very individual specific - a person with a 4 mm herniation can have significant symptoms, while another person with a 12 mm herniation will go through life never knowing that they have it. There is also a massive gray area when it comes to recommendations for surgery. Most doctors agree that someone with significant symptoms and a syrinx should have surgery and that a chiari patient without any symptoms should not. However, you'll find lots of disagreement for the cases inbetween (like mine).
Depending on where your case is in the spectrum, you may have to keep trying meds to treat the symptoms and rule out other causes for various symptoms. I have been at this now only 2 months, and there are days that I can't deal with it. That's when I tend to post on this site because most of the people have been there, done that, and get it, so I never feel alone.
The best advice is to educate yourself. Start with Conquer Chiari, the book and www.conquerchiari.org the website. Excellent resources. Skip the neurologist and go directly to a neurosurgeon, preferably one with Chiari experience.
Were you diagnosed because of symptoms or incidentally?
Ask lots and lots of questions! I was blind-sided with my diagnosis this past January. Since then I've read everything I get my hands on and use chat rooms to rely on those that have gone before! Everyone with a Chiari experience is an invaluable resource!
Best of LUCK!
Sorry to hear about this. I would not wait honestly. I was told I had a micro-stroke, then I started slurring and stopped being able to even lift anything or walk. this took about 5 months. I am now 8 months post op and am doing way better. I am in the AF and still cannot run due to the pounding but I will one day lol. Find a great doc and have it before it is to hard to do anything.
I have a lot in common with you! I am 35, and also have Fibromyalgia, ADD, sleeping problems, as well as anxiety and depression. I had laproscopic surgery in 2001 for Endometriosis. I went to the ER in 11/12 because I went partially blind temporarily followed by my very first migraine. They also thought it could have been a stroke! They found the Chiari while I was there doing tests. Since then, I have been dealing with debilitating headaches everyday, as well as, balance issues, short-term memory problems, dizziness, slurred speech, and spotting in my vision. I have always felt like there was this huge pressure in my brain from time to time. It may have contributed to my anxiety attacks, I don't know. It sounds like we are very, very similar!
It was very bittersweet when I finally got the diagnosis. FMS is hard to prove. But actually having something that the doctors can see on a test result, gives you more of a leg to stand on, you know? Could the Chiari cause the kind of nerve pain that we get from having FMS? I'm just curious. I have pain everywhere, and have had it for the last 18 years. I wonder?
I would love to hear more when as you learn more! You can reach me though here if you'd like! Good luck to you, and stay strong! We are making progress, little by little!
You have definitely come to the right place! This group is full of wonderful and amazing people! While not all Chiarian's present with the same symptoms, odds are someone here has experienced exactly what you are going through. I agree with many others that have commented that you need to see a Neurosurgeon. Preferably one that is very familiar with Chiari. That will most likely involve some travel. Mine is 3 hours away, but I would make that drive as often as possible to know that I have the best possible doctor to deal with my condition. My NS doesn't feel I'm a candidate for surgery yet, so in addition to him and my primary care doctor, I am also treated by a neurologist to help me manage symptoms. I am very fortunate to have a great team of doctors. My neurologist is at least familiar with Chiari, and while my primary doctor isn't, he is learning about it with me. Good luck to you!