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

cseegersdc · 07-19-2009, 09:38 AM

Quote:

Originally Posted by KelsieG

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?

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!

stinkerbell61 · 08-18-2009, 08:04 PM

[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.

dtyree · 08-19-2009, 05:31 AM

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

andi1978 · 09-01-2009, 09:53 PM

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!

dtyree · 09-02-2009, 10:36 AM

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

Chiarimomma · 10-01-2009, 01:45 PM

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.

lhizadelacruz · 04-16-2011, 11:39 AM

Quote:

Originally Posted by KelsieG

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?

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.

cally · 04-16-2011, 01:19 PM

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

zecorvus · 06-01-2011, 07:40 PM

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.
\

Quote:

Originally Posted by semilesh

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!

res5562965 · 06-20-2011, 03:30 PM

Quote:

Originally Posted by KelsieG

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?

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.

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