Hi everyone! I’m really confused about my diagnosis and my doctor’s reaction to it. I was diagnosed with mild chiari (3mm drop) with mild kinking of the cervical spine back in February. I was having visual disturbances and horrible migraines at the time and my neuro ordered an MRI. She called this an “accidental finding” but at my urging we set up another MRI for 6 months later to see if anything had changed.
I recently had the 2nd MRI, and she called to tell me the MRI was fine, same findings. But when I went in for my regular follow-up appt. she showed me the notes and I pointed out that the radiologist noted a 5mm drop. She said it is not a huge difference, that people live with this and don’t even know they have it, and that as long as I’m not passing out while coughing or sneezing I am fine. She said she wanted to see me in 6 months and another MRI in a year. I’m having less visual disturbances,but still have migraines. She told me that neither have anything to do with the chiari. She also told me the 2mm could be just radiologist error.
My questions are these: am I crazy to think another 2 mm in 6 months is kind of a lot? If we do the math on this long-term, it doesn’t sound so good! Also, don’t radiologists get paid to be exacting? How much can it really vary? Do you just sit passively by while it progresses or is there something you can do to potentially halt progression? Is it normal to have the diagnosis brushed off until you are debilitated? I’m kind of frustrated at this point and not sure how to move forward with my care.
Also, I was recently rushed to the hospital with supra ventricular tachycardia ( my heart started racing at 180 bpm) and am now in the care of a cardiologist. It came out of nowhere with severe lightheadedness and it scared the daylights out of me. Somewhere in the back of my mind I’m questioning if this is somehow related. I’ve never had anything like that happen until now, and just the other day it started again and went away quickly just after I had a hot shower. Could this be related to chiari?
The most important thing you can do right now is stay positive, and know that you are not alone, and you will get through this. You were led to this group for a reason :) I had a hard time (like many others) finding the proper medical care when it came to my medical diagnosis. I even had to write a congressional inquiry against the VAMC for not disclosing my medical condition to me for nearly two years after they found out what was wrong with me...during this time my condition was symptomatic and progressing along pretty fast. The first thing you should do is get a second opinion (by a neurosurgeon) and do your research on a good one in your area who specializes in Chiari malformations before you even make that call. My neurosurgeon is excellent! I was blessed to have him. Before he saw me, he sent me for a Cine MRI, reviewed it, then saw me the same day to review the results. He said he was looking for a few things, the MM which verified that I have Chiari malformation; and to see if I had a blockage of CSF fluid, and to discuss my symptoms. After this appointment, he asked me not to make a decision about surgery that day--instead he told my husband and I to go home and discuss everything, decide what was our best option, and go from there. I didn't really have much of a decision when I found out there was a blockage; I was symptomatic, and progressive. You need to find a neurosurgeon who is willing to give you the answers to these kinds of questions...wishing you the best of luck!!
Hi!(:
I'm so sorry you're going through all this. The same thing had happened to me. I've been suffering from Chiari and it's related condition's symptoms since I was 11, including the symptoms you listed above. I am now 15, and after 2 surgeries I am finally feeling better.
It's quite amazing how similar our stories are. When I was 12, my mother demanded an MRI of my brain from my GP. She wouldn't take no for an answer. When we finally got an MRI, the report said I had a 5mm 'incidental finding' herniation.We then took the MRI results to a well known children's hospital. I was losing my vision, having seizure-like activity, passing out, and having spells where I couldn't even move. What they told us, is basically that I was an attention seeking child and making it all up for attention. They told me it was all in my head(well, they got that part right haha) and that my problems were not coming from the Chiari. We spent the next 2 years going back and forth between at least 20 different hospitals, including specialty children's hospitals. None of them did any other tests, except when my mother demanded more MRI's from my GP. They all told me the same thing, I was faking and making myself have those symptoms. Who knows your body better than yourself? I knew the symptoms weren't coming from stress and I knew I wasn't faking them. Through those years, radiology reports continued to an increase; 5mm, 6mm, 9mm, 11mm, and 12mm. The larger the herniation got, the worse my symptoms were getting. Coincidence? I don't think so. It is true radiologist reports may vary. For instance, my NS told me himself; he requires all discs and no reports, due to the fact that every radiologist interprets the scan differently. Also because there isn't much known about Chiari. What I have learned, is that my irregular heart beat was coming from two things. 1, my brain stem was being compressed, which also compressed the main nerves controlling that part of my heart. 2, I was also diagnosed with P.O.T.S as well as E.D.S(vascular). Both of these are extremely common with people who have Chiari. Sorry, I know this can be overwhelming. I have a website that I am working on for Chiari and it's related conditions. Though I don't have information on EDS and POTS just yet, I have some information on Chiari. Feel free to contact me at any time and I promise to answer any questions you have, the best I can. I know I'm young, but I've learned a lot in the past few years battling with Chiari. The most important thing to remember is to always follow your gut instinct and never lose hope.
Hugs,
Macie.
This is a touchy thing for me,I spent 28 years living with so many symptoms that they can’t be explained, and that’s the problem.This is a hard condition to deal with,there’s so many problems that goes along with it,most Dr.s just look at us like they think that what we’re saying is not true.The only answer for chiari is to get to a specialist as soon as we can,don’t waste time with the reg. med. community.My experience has been a very traumatic one,and I am so against the Drs who will not listen,we suffer at their hands.They don’t mean to cause us pain but they do,the suffering of non treatment has cost me 28 yrs. and countless dollars but maybe God put me in this position to be able to talk to others to help them not make my mistakes.If only someone had told me ,
this is the place to gather info.In my case I knew for at least 5yrs. that I had chiari but not one NL or other docs.would listen even when I ask them to send me to a specialist.There was a wonderful chiari NS within 30 miles of my home and because the other Dr.s would not believe me I suffered on.The herniation is not a good measure for chiari mine was not very significant but my specialist after testing determined that surgery was needed not because of herniation but to relieve my symptoms,he listened when I told him I was in pain.He is my hero and he was God sent,after going in he found a lot of reasons I needed surgery the brain stem was grooved on both sides.I had a craniectomy,laminectomy,and duraplasty…excuse spelling.
Yes, my dear, it’s most likely related. The reaction from your NL is typical. My .02$ is you should find a neurosurgeon who specializes in Chiari so you can start to piece together what is really going on with you. Your not going to get any useful info info about Chiari from a radiologist or a NL who thinks the only worrisome symptoms from a Chiari is passing out… There are many knowledgable NS around the country and I urge you to find one.
Glad you found this site,
Jenn
Thanks everyone for the replies. I think I just needed to hear that I need a second opinion. I’ve also started reading about the POTS and am wondering if that isn’t what caused the tachycardia. I’ll be mentioning it to the cardiologist. I have about 18 symptoms that go along with POTS, which kind of freaks me out.
Hello & all the best with the second opinion. I was diagnosed in early July. It is such a confusing time, but I am grateful for the thoughts and suggestions on this site.
Warmest wishes,
Sonj