Undiagnosed symptoms...MRI shows Chiari malformation...doc brushed it off
 

Hi all,



I am a 26 year old female. I teach at a community college and have no health insurance. About three weeks ago, I started experiencing feelings of weakness in my right leg, only in the evenings. About two weeks ago, I woke up and the entire right side of my body felt weak--leg, hand, arm, and face (including my right eye, which FEELS droopy, but is not). I knew it wasn't muscular weakness, because I could still stand on one leg, lift weights, do yoga, etc. A few mornings ago, I began experiencing numbness on the right side of my face, to the point that speaking became difficult. I went to the ER and they did blood work (all normal) and an MRI, to rule out stroke and, possibly, MS. The doctor came and told me that everything looked fine, but that I had a Chiari malformation. He then told me it was nothing to worry about and NOT the cause of my symptoms. He thought perhaps some compressed nerves were to blame for my arm/leg symptoms, and that my face was going numb due to anxiety.


I came home and looked it up and was shocked to find that a vast majority of my symptoms are present with Chiari malformation!

I have been prone to terrible headaches for much of my life and have always chalked it up to stress/hormones (maybe it still is...I don't know). I have also had an odd "clicking" that felt as though it were coming from inside my skull when I ran/jumped. I don't know if that has to do with anything, but it always unnerved me a bit.



I guess I'm wondering...can Chiari symptoms present on only one side of the body?? My left side is completely fine. The weak feelings on the right side are going away a little, but my right eye feels as though someone is standing behind it trying to push it out of my skull. I'm also experiencing sensitivity to light and sound. My mother thinks it's a sinus infection (she had one that made her face go numb and messed up her eyesight) and told me to take some Mucinex D. I'm growing increasingly certain that my chairi malformation has something to do with this.



Was my doctor wrong to brush this off? Should I find a new doctor or go ahead an follow up with the old one? I would really like to try to find myself some health insurance before a firm diagnosis is made. If the only treatment option really is surgery...I...I just can't imagine.



I feel very alone and frightened right now. Will chiari kill me? Will the symptoms rapidly get so bad that I lose motor function or my eyesight? I'm terrified and poor and I feel a little angry that the doctor didn't even entertain this as a possibility.



Does anyone have any advice as to what I should do now?

new doc
 

Hi. I was just diagnosed through MRI with chiari malformation also. I think it is important that you see a neurologist. And if you were already seeing a neurologist (the doc that brushed it off) you need to see someone else. Some people will need surgery to correct a chiari and it seems that your symptoms are causing you a lot of problems. Find a different doctor and don't give up until someone takes you seriously! It is not a laughing matter. Good luck to you!:)

Hi, I too have chiari malformation, and just to let you know, do not let your doctor brush it off, its not ok. there are things that can be done to make the pain and pressure a lot better. there are medicines that can be prescribed to help, and now that prescriptions are so cheap, it is worth getting, next the only options are surgery and the way i see it is if we were born with it, we might as well keep it until it is just absolutely dire that we have the surgery. it is onset at birth, but sometimes is not discovered until late in life, i didnt know until i was 15 years old, and by then, i had been having migraines for years, but no one believed me, so dont let him brush u off tell him u want to know more and want to feel better.
Jessica

always trust your instincts
 

Hey. I just thought you should know that doctors brush off everything they are ignorant of. I went to 6 different doctors about abdominal pain on one side that spread. I had had kids and so many ultrasounds that I should glow in the dark! All those doctors told me that I had cramps - there was nothing to worry about or to do about it. My own mother told me that I was going to have to get used to having cramps this bad and just find a medication to work on them. I finally found a doctor that took me seriously. After throwing up before my period for years, several miscarriages, and 2 ectopic pregnancies later, at the age of 26, I had a hysterectomy. No more kids for me because nobody took the time to find out what was wrong. My miscarriages and ectopic pregnancies could have been avoided. I almost died with one of them. My only point is NEVER doubt your instinct. Some things don't seem serious until you find out the cause. I never thought that having menstral cramps would cause me to have lost babies or lose my ability to have them at all. After all, every woman gets them, right? Wrong! My doctors were swamped and unconcerned. I didn't have to lose those babies and you don't have to suffer. Trust me. Nothing that seems wrong to you should be blown off because the "experts" say it's nothing. Find yourself a doctor who cares and listens. It's worth the time it takes. And you might want to look into some sort of state assistance. They have programs that discount medical insurance for people who work and they might be able to help you pay for some of the additional costs like medications. There are a ton of programs out there. Ask around. Go to social services. Even if they can't help you, they can usually guide you to someone who can. It's worth the trip in to see them. Good luck.

To the first person in this thread.
It's true Doctors can be useless and trained to always know everything so when they don't they brush symptoms away and usually don't listen to the patient. Find one that will listen to you and is willing to tell you when you are assigning a symptom that doesn't connect to what your talking about but secure in themselves enough to question that symptom and dig for an answer to the problem.

Chiri Malformations can be caused by a lot of things one of which is a genetic condition known as Ehlers-Danlos syndrome and/or marafans syndrome. They can also be caused on their own completely.
I have been having weakness in my legs on and off for two years but not sure if it's from my back or a possible chiari malformation. I'm about to force the issue with my docs and make them do a mri on my brain and back. I have Ehlers Danlos syndrome so we slip out of joint with all our joints for no reason at all. Kinda annoying when you have to wake in the middle of the night cause your collar bone won't stay put. I hate it when that happens.


To the person in the reply: Ultrasounds don't use radiation to give you the picture so rest assured you won't glow in the dark. MRI's use magnets. CT's do use radiation to image and you could glow in the dark but I have had a few of those in my time and am disappointed to say that I don't glow in the dark despite working as a dental assistant for 11 years.

Please don't brush it off... get another opinion, It can't hurt.
 

Hi there, I'm new, and I really feel for you. Most Chiari docs will tell you that it takes about an average of 5 years for most of us to get a proper diagnosis. Unfortunately most docs right now don't have that much knoweldge of this dissorder, but they are learning. And we as patients have to help them, I have epxerienced "missed diagnosis" from Fibromyalgia to anxiety dissorder. I myself was diangosed with "panic attacks" and anxiety simply because I told them I had a burning pain in the back of my head and neck and shoulders. I have had the headaches all my life. I knew that wasn't right and went on to get a second opinion, who agreed with the first opinion, I still felt something just wasn't right so I chose a teaching college and got an appointment with a wonderful neurologist who decided to rescan my head and add an MRI of the neck, the neck wasn't done before this. Well, indeed it ended up being Chiari 1, a 7mm herniation and because they did run the neck MRI they also found the syrinx at c6-c7 and degenerative disc disease from c4-c7. He told me many of my vary unusual symptoms were probably due to Chiari and Syrinx and definitely not "anxiety" he told me that too many physicians take those and diagnose them because it's an easy all too common answer for most. I have had the pain, numbness, tingling, chronic muscle twitching etc. I also have autoimmune disease on top of it and Familial Essential Tremmor. He sent me to his NS and we discussed it, my case, etc. and are taking a watchful wait and rescans every 6-12 months but have elected not to have surgery at this time since I'm a pretty complex case with the autoimmune stuff in there too. But had I not listened to my gut instincts I would never have known this. The first neurologist had done the brain, but told me that my symptoms could not be from chiari, that there was just no way, that it just doesn't cause that. She also never told me that my pituitary was flattened from increased pressure (or born with it) on the MRI, it was the third Neuro that saw it and told me about it from the previous scan. Since this we have also discovered my daughter who is in her teens, having some strange symptoms very similar to mine, and my mother also have this Chiari 1 condition. Best wishes to you and your journey, pray all goes well, hope this helps, please if you feel something isn't right, then pursue it until you feel comfortable with it, you just never know.

Amen-
when you feel like there isn't something right with a diagnosis you have to be relentless till you get an answer that adds up to you. You are the only one that lives with your symptoms. Educate yourself and push till you get an answer that makes sense. Eventually you will get to a Dr. that will listen to you. You have to be like a dog with a bone till you get the doc and the dx that you feel right with.

Hope you guys get there quickly and with out too much hassle from the medical proffession. Those people are really there to help but are taught to limit themselves. There are the few out there that are fab and are willing to look outside the box.

Stephanie y0our best bet is to see Dr. Ellenboggan in Seattle . He is a expert. Roz

Hi there,
First take a deep breath...you can email me or others in our group anytime!
You are not alone!!

We hear symptoms presenting on one side all the time. I would suggest getting a 2nd opinion from a chiari expert.

If you email me privately your state I can send a list of doctors. azsyringochiari@cox.net

Blessings,
Debbie

Not something that should be brushed aside.
 

I am so sorry you are going through this. You shouldn't have to go through this alone! I too have just recently been diagnosed with ACM with an 11mm herniation along with syringomyleia and a kink in my brain stem.

You are not wrong to second guess your doctor. The first doctor I saw looked at the MRI results and said "you have something....I can't pronounce it... but its not anything serious. At least you know it can't get worse." Boy how wrong was he. Depending on your symptoms you can be a canidate for surgery but thats up to your doctor. I would say because you are experiancing muscle weakness, especailly in your face, that your nerves are getting compressed and its causing major problems. Chiari can be treated but you need to get moving on it. If you need someone to talk to please feel free to e-mail me. I would love a chance to sit and talk to someone who is going through something similar to me. I hope this helped!

Very similar onset
 

My onset of symptoms was very similar, except I fainted at dinner one night and in the next week was left with left sided facial tingling, rt hand and foot tingling and weakness, head pressure that felt like a sinus infection, and episodes of what seems like a panic attack out of the blue. My MRI ruled out other scary things but confirmed the C1M. One of my docs, upon my complaint of sinus pressure, said, "just out of curiosity, try a nasal decongestant or allergy med. and see what that does." Well, to my surprise, it took away the head pressure, and the tingling and weakness in my face as well as my hand and foot!! So, I reported back after 3 consecutive days of this and my doc prescribed Flonase, a nasal steroid, 100mcg one time per day, and even on the first day, I had longer lasting symptom relief. Now my symptoms are being very well controlled for 2 weeks, well with the exception of intermittent episodes of panic attacks. So, you can take this info, and atleast try the decongestant, over the counter, as directed, and report back on any symptom change to your doc. What it does, is it gives them the feedback that your symptoms are being relieved by taking pressure off at the brainstem area via an antiinflammatory pathway.
Hope this helps!

chiari malformation
 

[B]I'm sorry but I'm not sure if I'm posting this correctly. I had a stroke while driving to work in January. The problem is I'm still having problems with my balance. If I look up or to my right I become very dizzy. If I fall asleep and my head tilts back and to the right, I immediately wake up nauseated.

My neice was visiting me for the summer and witness something that terrified us both. My neice said that when I become dizzy she notices that my eyes move side to side very fast and then rotate. I also have severe headaches in the back of my head.

I have gone to several neurologist that said that they didn't see anything on the MRI. I was also diagnosed with chiari malformation. The neurologist said that the chiari malformation was so mild he wouldn't even consider surgery.

I am now suffering from depression and have seriously considered suicide. I don't know where else to turn. I can't continue living this way. Every time I place my head in certain positions I faint.

I have every test imaginable from a ENG to check problems with my inner ear, a doppler of the sides of my neck, MRI of my ears and a tilt table test. All of the doctors referred me back to the neurologist. The neurologist treats me like I'm a hypercondriac.

I don't understand if I had chiari malformation since birth why it is effecting me now. I don't even know how to find a doctor that specilizes in chiari malformation.

I would appreciate any suggestions. Please help me your my last hope.

Greetings all. I too was born with CM and experienced adult onset of symptoms. In doing research on the topic, CM can present some 80 symptoms and every one is affected differently. This poses difficulties to doctors in making a sound diagnosis.

The MRI is the test to determine CM, but does need to be read by a radiologist, neurologist, or neurosurgeon who knows about CM. Normally, doctors do not perform sugery to correct CM unless the desent of the tonsils into the spinal column are 5 mm or greater, this is their standard. However, blockage of cerebral spinal fluid can be blocked with a size of 5 mm or less bringing on symptoms. A CINI MRI can be used to determine fluid blockage and as a patient, you will most likely have to insist on this type of MRI to make a determination of the blockage.

Your best bet is to research the doctors available to you to find out if they are experts in the CM area. This is the only way to achieve better results in your body.

Peace,
David

I feel your pain!
 

Hi! I sent an email to the admin on here looking for a doctor who can help me, and any opinions would be greatly appreciated. I was diagnosed with Chiari 1 in December, after my Rheumotologist thought I should get an MRI after seeing her for almost 2 years for Fibromyalgia. I was sent to a Neurologist who told me that my Chiari isn't bad enough to cause any of my worsening symptoms, and said that I had 3 bulging discs as well, and that with the Fibro was causing my problems. He recommended an anesthetic block for the pain in my neck. I decided against that because of the low success rate, etc. My Rheumo continues to attempt to treat my Fibro pain with all the common Rx's (Lyrica, Cymbalta) that don't work, and treats my pain as minimal, and pretty much acts now like I am a drug seeker. I am in pain every day, I am starting to have trembling in my hands (which she treated with Nortriptyline), and many other symptoms. I feel helpless!

andi1978, greetings. Chiari is very misunderstood and you do need an expert in the field. I see you live in Bristol, VA. Being from VA, know you are limited in getting local quality medical assistance.

The hospital at UVA, Charlottesville has an excellent neurosurgery dept. that knows how to deal effectively with Chiari patients. In addition, Medical College of Virginia, Richmond also has an excellent neurosurgery dept knowing all concerns about Chiari.

These are 2 good resources for you. Your PCP may have to refer you to get in to either dept. And travel will be involved, but might be worth the drive.

Peace,
David

Newbe too
 

I am also newly diagnosed as well with a 12 mm chiari. Mine was missed by the radiologist but caught by the neurologist who just said "oh it's looks like you have a chiari but it doesn't look like it's bothering anything". I then went back to our radiologist and asked for a measurement. That is how I know how big it is. Since the measurement, I have only seen my rheumatologist and fam dr. No one really seems interested...

I too would consider my symptoms as mild and confusing at best. I have the headaches with straining, laughing or crying. The rest of what goes on was suspected to be autoimmune of some type but undiagnosed. They are treating me for fibro and hypothyroidism. I think they are making a stab in the dark. I had extreme fatigue and bilat pain in my fingers and feet. At this point I am on so many meds that I don't know what's real and what's caused by the meds. I am starting to choke more but my mouth is dry from meds...I am starting to loose by balance more, but maybe I might have a sinus infection...I have edema in my legs but that could be from meds... I had the "dropsies" for a while but it got better... I lost movement of the first three digits of my left hand for about a month, but it resolved itself... See what I mean?

I am unsure where to go next. Are there any chiari drs around west Virginia? I live where west Virginia borders Ohio and Kentucky...any thoughts on symptoms or specialists would be great.

Hello,

My name is Lhiza and I am diagnosed with Arnold Chiari too, I had an operation last October which seems to be successful. The problem was they left it too long that fluid accumulated in my brain called hydrocephalus so I ended up having s chunt fitted in which will be there for the rest of my life. But after the operation, im back to my normal activities as if nothing happend. I am happy now, but not very impressed with the way doctors mis diagosed my problem, now that the real problem was sorted out, Im am back to what I was before. Please go and see your doctor again especially if your symptoms are getting worst. Once damage is done in the spinal column there is no treatment. Dont leave it too long.

Kelsie g i suffered migrains spinal problems balance issues left side weakness last year at 46 they found chiari so low it was setting on spinal canal blocking the flow of csf this is very serious so many things can happen breathing issues heart rate you need second opinion an a neuro s i i had chiari decompression surg 7 m ago to give it some room keep asking until you get an answer this is serious

I am going through the same thing and I have tried neurontin and it did not take the pain from my face. I tried topamax now and I am severly depressed. I will call the doc tomorrow. My first opinion neurosurgeon told me there was adequate flow to the brain. I have 7mm-8mm. He said he would not operate. I am going to get a second opinion June 23rd in Philadelphia. It is very depressing. My daughter is 22 and has some similar complaints also.
\

I have never had headaches until Jan 2010 and it started with the clicking noise in my head like you described. Then, It was a continuous pain in a specific place in my head, a pressure pain like someone had their fist inside my head pushing to the top of my head, mine on the left top.I also experienced numbness in the left side of my face. After the Chiari diagnosis 11/2010 I then had a MRI with a study of the flow of Spinal Fluid and that is when I was also diagnosed with Arnold's Chiari 11/2010. My Chiari was causing my spinal fluid not to flow and causing the pressure in my head (Arnold's Chiari) Immediately 11/2010 they put a shunt in my head to let the fluid flow instead of being trapped in my head (immediate relief). It took almost a year to get the correct diagnosis and a different doctor to diagnosis it correctly. The shunt relieved the pressure pain but did not relieve all my symptons. Pain when I sneezed, coughed, or gagged. That was from the Chiari where my "brain tonsils" were pushed through the opening in the base of my skull due to my skull being too small for my brain. I then had Chiari decompression surgery 2/2011 where they make the opening @ base of skull larger and removed a part of my vertebrae to give my brain more room. This surgery helped with the remaining pain I was experiencing. I still have to have the shunt because the aquaducts that allow flow are small and have evidently gotten smaller with age. I was 48 when all this began. It usually effects people earlier since it's a congenital condition (born with it). No idea why it affected me at such late age.

I think that those of us with Chiari have going so many years with our symptoms that our body has adapted and we've learned to work around them.

Undiagnosed symptoms
 

Boy, it seems like a lot of us have gone through hell just to get a diagnosis.

I still don't have a diagnosis (besides Fibromyalgia), but I've been experiencing all these strange Chiari symptoms for years. The neurologist refuses to send me for a brain MRI. He insists that my headaches are migraines (although the pain is in the back of my head not the side) and that the neck spasms are spasmodic torticollis. I asked him about Chiari malformation. He said that he's only seen two cases of Chiari in his 30 years of practice, so it couldn't be that. I guess that he has X-ray vision! ;)

I am very frustrated and scared but I won't back down until I found a doctor who will help me. No one should have to live with such pain.