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Could I have Chiari
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Could I have Chiari

I am writing as I stumbled upon this site while trying to figure out what could cause me to have stiff necks for weeks on end...........
Of course that is not the only symptoms that I suffer with alot, but it was prompted my search for answers TODAY!
Since the birth of my daughter in 11/2008, I have sufferred a multitude of symptoms. It all started with "stiff necks" though. I attributed this to breast feeding and the fact that I had a very large baby to hold (she was 9 lbs 9oz at birth). I would get these awful stiff necks that would last 1-2 weeks at a time. I cant move my neck in any direction besides looking up without being in agonizing pain. Then I started in with some right shoulder discomfort every once in a while. Then it seemed liked for 2 months straight, I woke with a "migraine" headache every single morning. So bad, I didnt even want to open my eyes, and the only thing that would feel remotely good, would be to bury my head under my pillow and not move at all.
My doctors of course felt that it was stress and depression/anxiety. (I was going through alot at the time, so I believed it)
Then all of a sudden one day, I had a random pop in my left shoulder and instant pain throughout the arm. This started a series of tests, as I was having really bad numbness/tingling and hot/cold sensations along with weakness. I had a cervical MRI, that said my neck was pristine other than some straightening of the spine. I also had an MRI of the left shoulder that was completely normal too. My symptoms seemed to progress more and more. My Dr thought I was "NUTS" when I walked in the office one day and suggested that my new symptoms of:  headaches, left sided facial numbness, slurred speech and ringing in my left ear only, where part of my so-called left shoulder injury. She suggested an CT of the brain. Which the radiologist and her read as normal. She then questioned if i could have had any ticks on me to contract Lyme Disease. She did ALL the Lyme testing and it was normal. I saw a Neuro, who was convinced that I suffered from Chronic shoulder pain, alongside with migraine headaches and put me on Gabapentin. This medication did nothing for me and all my "weird" symptoms continued for about another year or so, then slowly started to subside.
Then I started having a tight/sharp pain right over my zyphoid process (rib area). Thought I must have bad posture or something and tried to be more aware to sit properly while at work. Then I started noticing a squeezing type pain in my chest. Now , i was only 32 at the time, so chances it was my heart was slim. Nonetheless, i went to the Emergency Room, and was reassurred that it wasnt my heart.  From there, I was in the ER at least 2 x a week for the next month. Finally they did an Upper Endoscopy, and tried to say that I suffered from GERD. I told them, that this feels nothing like "heartburn". It felt like someone was squeezing my entire ribcage/chest and it hurt. So I treated with the medications that they gave me, and it seemed to work somewhat.
Then all of  sudden I got hit with a bunch of symptoms as once, migrain, shoulder pain, low back pain, stiff neck, sweating in middle of night, cant stay warm enough during the day. Ringing in my ears, vertigo, dizzy feeling, chest pain, shortness of breath feeling.
After a series of more tests, it was believed that I had Chronic Inflammation of my Gallbladder. I proceeded with surgery and had it removed. Only thing is, none of my symptoms disappeared and in fact, the shortness of breath and tight chest feeling bought me 2 additional trips to the ER post surgery in an ambulance, cause this time, I thought I was really dying from a heart attack. Of course all the testing was normal, and I was told that I had ANXIETY. I said "no duh, i have anxiety that my Dr's cant figure out what is wrong with me".
From there I was treated like I was a hypochondriac. My Dr office did a complete blood workup, thyroid testing, I was also tested for other hormonal imbalances and even saw my Gyno too. I then finally switched Dr offices because I was so frustrated. The Dr I saw said, "Its one of 2 things, you could have a "rare" thing called a Pheochromcytoma (tumor of the adrenal gland) or I had Somatization Disorder (basically a hyperchondriac). Of course the test for the pheochromocytoma was negative !! So I AM CRAZY then.
Since then, I still suffer from Stiff necks that last 1-2 weeks at a time, headaches (migraine intensity) at least 2-3 times a week, constant ringing in my ears, vertigo, balance issues ( I have fell down my stairs at least 8 times in the last year and I am constantly walking into walls or feeling like I am going to fall over when walking, I only get occassional facial numbness and it is typically when i have a headache, the headaches are intense, from the base of my skull all the way to the top of my head and my eyes ache so bad that they feel like they are going to pop out of my head (now my eye Dr did mention that I had high (normal range) eye pressure for my age but no signs of Glaucoma), numbness/tingling into my hands, left worse than right, numbness/tingling in my legs/feet, left worse than right, weakness in left hand, when gripping things my hand can get stuck that way, insomnia at least 3 times a week, tightness in chest and short of breath. I am also very very forgetful, and its gets a little annoying sometimes !! Whether it is forgetting where I placed something, or not being able to remember a certain word, or what I was about to do. (like right now as I am writing this....urgg)
Basically, I havent talked to my Dr about this Chiari thing yet, cause I just feel that I am being my typical "hyperchondriac" self and not take me seriously. But out of the entire list I presented, the 2 things that I keep coming back on is this.....If it is migraine headaches why doesnt Imitrex help them? And how do you get a stiff neck that lasts 1-2 weeks or more at a time?  Also the headaches are ALWAYS at the base of my skull, its like I cant even touch the area, cause it hurts so bad.
Sorry for being so long...... What do you think?
12 Comments Post a Comment
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

So many of us r told the same things u were told...depression, anxiety, all in ur head...duh yes it is...the problem is Chiari is not a rare condition as many reports online infer, but Drs well educated and experienced with is are !

It is very possible that u have Chiari, but there r several conditions out there with the same symptoms so u need to have the testing done,,,,,a Brain MRI w/wo contrast, a cervical spine, thoracic and lumbar spine MRI...a CINE MRI, rule out MS, lupus, lymes, and then check for related Chiari conditions.

Use the list of Drs to research Drs- http://www.medhelp.org/health_pages/list?cid=186
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I agree completely with Selma. DEMAND and MRI and try to find a Chiari specialist. I went to two neurologists who told me I had "migraines" and did nothing to help me. I spent months back and forth with Drs until I finally got a diagnosis. I know the feeling of "I must be crazy"
Stay strong and if you need to talk, I am here
Amanda
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Today is a BAD day. My stiff neck worsened overnight. i jus wanna cry. so when i move my neck i feel pain n tightness all yhe way down to my mid back. i wish this wud go away!
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Seems like just when all the symptoms subside...BAM ... it hits me again like a mack truck
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Hello,
The symptoms you have with balance and numbness is the ones that was my worst.  Like they have said get a MRI and havae a specialist look at it.  I was lucky the ER doctor caught mine.
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I called to make an appointment with my pcp. hopefully he will take me serious n not say its just anxiety/tension. im a little pessimistic cause he is the one who diagnosed me with somatization disorder. i just feel like im at a dead end. im only 33 and i feel like im 60. man to only imagine what i WILL feel like when im 60.... :-(
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620923_tn?1416285879

  I know it is hard and tough to move, but u do need to slowly move ur neck daily post op to help loosen those muscles....and help avoid scar tissue from forming....

Did ur Dr give u exercises to do?
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I am the aunt of 3 children with Chiari Malformation. There are 2 types of Chiari  and are usually found in much younger people. (my 1st niece to be diagnosed was 2, her brother 3, and her older sister was 8. (they only checked her because of 2 siblings having it) an MRI of the cervical spine, with a reading of the films done by a neurosurgeon  whom knows what they are looking at will tell you for sure. We live in Buffalo NY and my nieces and nephew are all treated at the University of Iowa Hospital. The MD there invented the surgery to repair the Chiari. Being that my niece was the youngest patient ever to have been diagnosed with a  Chiari Malformation he wasn't quite sure what the outcome would be, as until you stop growing the brain and cervical spine keep growing, therefore she has undergone 6 Chiari decompression surgeries. There are 2 types of  Chiari Malformations, and few MDs know what they are looking for when looking at the MRI. The neurosurgeon her in Buffalo was all set to do surgery on her at 1 1/2 years old, but when he told my sister well there really isn't a name for what she has, but I know how to fix it, my sister immediately got online, did her research and was in Iowa 1 week later. What someone should be looking for in the MRI is if there is good cerebral fluid flow from the spinal chord to the brain, both anterior and posterior. I suggest getting MRI from cervical spine all the way down to lumbar and that will show what you need to know. Johns Hopkins also has terrific neurosurgeons I suggest get the MRI and forward it to one of these hospitals for an accurate reading. I also think an MRI of the brain should be done, as your symptoms also sound like MS and you are right in the age where MS is most often diagnosed. This I know because I had alot of the same symptoms you are experiencing as did my sister and cousin and brother-in-law, and we all have MS. MS truly sounds much more likely then does a Chiari. If you have to travel to get the answers do it, fight for it, and don't give up. I was in my 30's with a sister who had MS, l was living in AZ. (low population for MS) and they told me that I had had a stroke. If not for knowing the signs and symptoms of MS I may have believed them, but I knew better and when home on vacation back to Buffalo NY I had another attack and saw my sisters neurologist and 1 MRI later was diagnosed. Certain parts of the US and around the world have a much higher indecent of MS then do others. 1st and foremost is to find a MD who trusts that you know your body, and know that something is wrong. Get the blood work and MRI and then you can go from there. Do not give up! You know your body and you know when there is something wrong with it. FIGHT FOR YOUR SELF. If you don't no one else will. If you need any further info on either ask me, I will help you find the answers.      
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I saw my dr yesterday and he thinks i am being far fetched to think it is MS or chiari. he was kind of rude and asked me why i thought that. i said i had been researching and he seemed to be fruztrated with this. he said that i have alot of stress which is causing my upper back to tense which in turn causes me migrainees along with a slew of other symptoms. he said my blurry and double vision were a migraine ( minus the headache) although i never had that before witb a migraine. he felt everyrhing else was benign issues and part of somatization disorder. he put me on amitryptiline to help. and said if no better in a month then he will order xrays to evaluate for arthritis. when asked about seeing a neuro, he felt y
my workup from 3 years ago... Which was mainly for my left shoulder issue ( which includez mri of brain, mri of neck, mri of left shoulser, mri of brachial plexus, ct of sternoclavicular joint, emg of upper extremities and a 1 x consult with a neuro) was sufficient and that the end diagnosis was migraine and he doesnt see thAt changing. i feel like i have been branded for life by doctorS... that i am a hyperchondriac. they NEVER believe me.
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620923_tn?1416285879

  Many times it is the Dr, Chiari and the symptoms being beyond their knowledge, and then the ego comes into play, they r the Dr, but they forget they work for us and we can fire them and go elsewhere.....

I am not saying shop till u find a Dr to agree with u, but look for a Dr that listens and tries to figure out what IS going on, not just what they THINK is going on.

Do u have copies of ur MRI? If not request a copy from the facility that did the study along with the report u can send these to Chiari specialists for review,
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I do have my mris. but they already were read as normal. i wound up in urgent care yesterday cause the left side of my face wemt tingly n numb. again they think migraines. just the aura, with no headache. maybe it is, she said i shud f/u with a neuro. so now we are gettin somewhere. at least i can go to him with ALL  my symptoms n hopefully put it all together. i dont know if its chiari, ms, or something else...or migraines. but at least i can talk to someone who hopefully knows about them and can at least rule them in or out.
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620923_tn?1416285879

  But were they reviewed by a Chiari specialist? Many of us have  had a Dr tell us we had a clear MRI only to find out later that was not true.

DO have it reviewed.
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