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Don’t know what to do..

My symptoms the lightheaded feeling, shortness of breath, and just feeling really unwell and disconnected are getting worse.. Is this signs of progression or worse? I don’t see the neuro until next week but I do have an appointment with my pcp this Thursday. I just don’t know if I can make it till then :(...
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Guess this isn’t active anymore?
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HI Sorry I was sick and wasn't onine......how are you doing?
Well I made a whole other post if you want to read it.
Just saw it
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The constant throbbing in my head just won’t go away. Could that be from the chiari blocking fluid?
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Would you guys go to the ER if you were having a really bad throbbing pressure?Please someone respond
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I'm sorry ive posted so much on here I'm sure you all are tired of seeing it. I'm honestly just unsure what to do anymore ive been to the er countless times and they never do anything. Ive had everything else checked out so I know most of my issues are from the chiari.. I see my PCP next week and I'm goona try to get him to refer me to a specialist I found in Nashville.
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Now my shortness of breath is really bad idk what’s going on :(
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Also has anyone heard of chiari causing shortness of breath? That’s been getting worse too
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Yes... It can. I try to stay physically fit. But certain things like  bending over, trying to go up stairs or hills too quickly.etc. leaves me unusually short of breath relative to other types of activities requiring simile exertion.

Bending over is be far the worst for me when it comes to feeling unreasonably out of breath and light headed.
It just seems like I'm getting worse quite fast.. The head pressure is basically constant and my head feels like its in a bubble.. When people talk to me and stuff its just weird like I'm in a bubble hard to explain. I fear I've developed a syrinix or hydrochepalus because its like fluid is building up in my head and I'm just terrified..
I’m having balance issues really bad today like my feet are disconnected:(
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Thank you everyone for the responses I really appreciate it. Is heart palpitations common in chiari? I’ve noticed my heart like skipping a lot lately and beating slow..
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Yes... This is a frequent problem for me, which sparked a major heart work up. Turned out my heart was fine, but it did turn me onto realizing my chiari symptoms had gotten significantly worse.
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And I keep getting really bad lightheaded spells..
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As difficult as it is and as easy as it sounds, you need to try to relax as best you can. Increased stress exasperates all the symptoms. I know from personal experience so I speak from the heart.

I’ve had 2 decompressions and was diagnosed with high ICP after the first. It’s deff miserable but I’ve just gotten used to it unfortunately.

Once you find the right dr it will put all the pieces together and you will at least have solace that you have the answers to your problems.

Just remember that even after surgery, you may still continue having symptoms. But hope for better than previously. You will always have chiari. Knowing that surgery is only done to restore spinal fluid flow and relieve pressure on the brain stem and nerves. It’s a sad reality that we all face and have to learn ways to cope.

I pray you find answers and peace
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Ok guys I’m really worried today. I’m having this really bad full feeling in the back of my head, my hearing is really muffled sounding and my dexterity in my hands is really bad and I’m just not feeling myself :(. I’m so scared this is something serious. Does any of this sound familiar or have you heard other members complain of these things? I’m feeling really like disconnected to....
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Please someone respond I hope this isn’t something emergent :(
I’ve also had trouble finding words and slurred speech off and on. I’m so worried :(
I’m also very like this weird throbbing in the back of my head and in my chest too.
I am currently experiencing every single one of the symptoms you just described.

I don't always go into the sort of detail that I am about to share with you, but I want you to know the things you are experiencing are common for our condition.

Admittedly, I don't know your pain levels, and I know people experience things differently, so all of this may well be more severe in your case.

I am having very regular bouts of feeling light headed, sometimes accompanied by dizziness. I'm definitely feeling light headed tonight, but thankfully not dizzy.

As I type this I have a tightness  across my chest, and a sensation of a weight on my shoulders.

Pressure at the base of my skull.

Pain in my neck and shoulder blades.

A dose of fog brain.

Partial numbness in my left hand and lower left leg and toes.

Tinnitus as always.

And, a lump in my throat, with some swallowing difficulty for certain types of solids.

All of this said, if it were not for the fact that I've been working through all of this for the past year, had work ups by my primary care physician, a cardiologist, updated MRIs showing the problem with my Chiari and small syrinx, if probably beas worried as you now are.

It sounds like from our prior exchanges that you are doing about all you can to get medical attention for this condition.

Is like to challenge you to look for activities, time with significant others, or other things you know that will help you get your mind off this for a bit, and take care of your emotional well being.

I ask this because when I was first diagnosed back in 2008 and my concerns were dismissed out of hand by the neurologist I saw at that time, I passed through a period were I was worried sick about what I was experiencing, and that took a massive toll on my own emotional well being, and I believe my physical health at that time.

And no, I'm not dismissing what you are feeling and the seriousness of our chiari malformations. It needs to be taken seriously, but over time I have just come to terms with my diagnosis and symptoms. (of course, that does not mean I don't take note of new symptoms and check them out, but it has just gotten easier to take them in stride.

I don't know how to explain it, but I'm happier this was, not down and out, more present for my wife and kids, more effective at work etc.

I'm hoping you can fi d similar peace in thus process, and stay engaged as much as possible in your other interests and pursuits. Staying engaged like this keeps my mind off my symptoms and helps me tremendously.
Do not accept that this is your lot!  Seven, yes seven neurosurgeons and five, yes five neurologists told me that yes I had Chiari, but told me and my wife that my symptoms where probably related to anxiety, and that apnea and constipation and breathing problems and brain fog had nothing to do with Chari.  WRONG!!!  Blocked CSF flow and compression of the 12 cranial nerves ARE what causes our symptoms: headache, numbness, apnea, brain fog, tachycardia, brachycardia, shortness of breath, memory lapse, motor skill lapse, photophobia, vision loss, numbness, dizziness, swallowing problems, tinnitus, etc.  So, I had posterior fossa decompression surgery, which although has about an 80% success rate at relieving symptoms for most, I found very little relief, and 4 short weeks later, back came everything.  But, I kept researching, and kept praying, and the Lord led me to: filum terminale dissectum surgery.  This 45 minute surgery slowly gave me my life back.  It is performed just above the intergluteal cleft (butt crack) and is a release of the filum.  This release removes the downward pull on the hindbrain and thus allows for gradual increased CSF flow and thus decompression of the 12 cranial nerves.  Our brains are collagen (think cottage cheese) and with the help of a safe form of inversion therapy (I stand and lean downward at the waste while reading a book for about 45 minutes a day) there has to have been an upward migration of the hindbrain (Chiari malformation tonsil).  My neurosurgeon, Dr. Miguel Royo-Salvador noted that said upward migration could take "several" years, and I am just shy of the three year period since such surgery.  Additionally, a multi-year study on hundreds of patients by Dr. Bolognese of New York, found and upward migration of the Chiari tonsil by an average of 3.5 millimeters!  If Chiari is medically diagnosed as 5 mm, then WOW!  The University of Alabama found an upward migration of said tonsils close to 1mm when the release of the filum was done on cadavers, obviously in rigor mortis, but if a cadaver can have an upward migration, think what it can do for us Chiarians.   Do your research on the 12 cranial nerves, CSF flow, filum terminal dissectum/release and realize there is hope and that much is still to be learned about Chiari.  Three US surgeons perform the filum surgery: Heffez in Wisconsin, Henderson in Maryland and Bolognese in New York.  Dr. Royo-Salvador in Barcelona, Spain performed mine.  God Bless, do your research, become your own expert and pray non-stop.  The longer a patient waits. the worse the herniation can become!
Edit: University of Alabama at Birmingham did the cadaver study.  Except for some apnea and fatigue, most of the 12+ symptoms I had before the filum release are GONE!, and said surgery got me out of bed after 3 years!  Godspeed
Holy smokes Washfeet. I've NEVER heard of this. While I need to research it more, your description alone has me visualizing the physics involved in this filum terminale dissectum surgery. I'm intrigued.

Though, at present bending over upside down is very difficult for me to sustain at length. I quickly start hearing my heart beat in my head, to a pounding sensation of my heart beat, to being light headed, and then if I don't get up to losing my balance and feeling like I'll pass out. So, I don't know how well I'd pull 0ff that bit of the therapy. Maybe slowly but surely I work myself up to it, as the tonsils continue to migrate upward.
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It just really worries me because the pressure and pain aren’t going away just makes me scared it’s serious :(
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Also I’m hearing a lot of of popping like fluid in my head with the pressure could that be from increased pressure?
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I have heard of others mention popping like this, but I have never experienced it. Most often it seems like I have heard this in reference to points in time where their symptoms became more pronounced or worse. It seems like those cases were sometimes associated with a trauma of some sort.
I’m just hoping it’s not like hydrocephalus or something because this pressure is like a intense crushing feeling from the back of my head around to my temples. Another reason it really concerns me is that it was never constant like this...
I’m theory of it was obstructed wouldn’t I hear these squishy sounds from fluid trying to go by the obstruction?
I definitely have an obstruction, but I don't hear anything. That said, I also have pretty bad tinnitus on a constant basis, so maybe I'm missing it because of that. The only popping I ever hear is normal cracking of my neck if I turn it too much in one direction or another (like what you would hear from a non-chiari person that purposefully cracks their neck to release tension... Something, by the way, that I would NOT recommend ANYONE with a chiari do on purpose).
Also, with regards to hydrocephalus. I jokingly posted elsewhere on these forms about a time I contracted viral meningitis while living overseas. Words cannot describe how horrible the pressure on my brain and associated headaches were.

Please keep in mind that I do NOT work in medicine, so you should follow up with your primary care physician on the prospect of hydrocephalus, but I would think that if you are truly experiencing hydrocephalus that you would be feeling intense, never ending, very difficult to treat headaches (versus the more typical pressure build up from cerebral spinal fluid in your brain due to an obstruction from your chiari, which also induces headaches, but unless completely obstructed sort of comes an goes somewhat, giving at least a degree of relief from time to time).

Another prospect is that the egress point in your brain for your cerebral spinal fluid could be mostly to completely obstructed, which would result in more and more fluid building up on the brain, and I suspect one or more syrinxes also building up along your spinal column.

I think Selma indicated previously, and I second her statement that ONLY a CINE MRI will verify the CSF dampening or complete obstruction with your chiari. Beyond that, an MRI of the neck, thorax, and lumbar sections of your spinal column will show any syrinxes (i.e. cysts).  You need to have your primary care physician or a chiari specialist order these MRIs so you can get a conclusive answer to your concern.
Well I had MRIs of my entire spine in February and they were all normal besides a little degeneration in my cervical spine but no syrinxes then but maybe I have one now idk. I also had a cat scan done like a week and a half ago that would of showed hydrocephalus right?
Hi...if you had hydro as  Matt mentioned you would have much more then the pressure headaches going on. MRI's will  only be reported on what they were told to look for....so if yoour Drs were only looking for how big a herniation that may be all they were concerned with....Did you get a copy of the MRI you just had?
It’s not just pressure it does hurt too... So your saying they could have missed hydro l?
I have copies of my mris of my spine but the mri of my head that I had in October I don’t have. So you guys think it’s just the chiari?
You should be able to request a copy of the MRI of your head. I would get a copy of it on disk no matter what you intend to do with it in the near term.

Next, IF YOU WERE EXPERIENCING THIS PRESSURE AND PAIN WHEN YOU HAD THAT MRI OF YOUR HEAD DONE, I would get it re-evaluated by your physician or give it to another neurologist or neurosurgeon for a second opinion.

Not being in your shoes, I cannot assess your pain and discomfort level, so it is hard to say that it is just your Chiari. It might be, but I don't want to point you in the wrong direction here.  I really think you need to get this assessed by a specialist.

Also, on your question about the CT scan, I don't know if it would pick up on hydrocephalus. But, I believe hydrocephalus is normally diagnosed using ultra sound. One of my sons had to be checked for hydrocephalus as an infant. They checked it by doing an ultra sound on his head. It was quick and painless. And thankfully, everything checked out for my son and he was fine.

I can tell you are very worried about your situation. I remember feeling similarly alarmed when I had viral meningitis. You know your body best, and I think the most important thing to do here (regardless of whatever push back you may get from medical care providers) is listen to your body, and seek out specialists who are most likely to get to the bottom of all of this.

Do me a favor and make a promise to yourself to call tomorrow to get a copy of your head MRI for this situation or future reference, and to reach out to your existing doctor ASAP (or a new one if you don't have faith that your existing doc is ready to help you figure this problem out).

I really hope you feel better soon.
I will get the mri copy tomorrow. I’m in the process of trying to get an appointment with a chiari specialist in Nashville so I guess I’m doing all I can....
I know it is difficult. True chiari specialists are far and few between. I also missed where you indicated that you don't have health insurance at the moment. I'm sorry, that's rough.

After my last response I looked online and saw that CT scan can be used to diagnose hydrosphelus. So, I would think that would have been apparent when you got your recent CT scan of your head.

Maybe try reaching out to the hospital where that was done and ask them to confirm that they did not see evidence of hydrosphelus.

I pray you find relief soon.
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Also do all neurosurgeons require a referral for consult?
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In my case yes. My health insurance requires a referral from my primary care physician. But, I have regular contact with him, and he is well informed on the situation with my Chiari, so he has not hesitated to give me referrals to see specialists as needed.
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Thanks Selma I’ll check it out. Does this sound like increased cranial pressure?
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As I may have said before it could be IIH OR it could be weather realted OR even how stressed you are at this time.....so many things it could be......unless you know you have a CSF obstruction I wouldn' t think the worst possible senerio.....I had similar pain and I did not have IIH.....try to relax.....until you know there is no reason to stress over it as it will only make you feel worse.I always said it felt ike someone was jabbing an ice pick into me.....so I know how you feel and I occasionally get one still......but many times it is when I am over doing things and over tired......
Not all NS require a referral...it really depends on your medical INS if they require it or not.....I did not have one as it wasn't required by my INS, I could choose any Dr I wanted.
The popping or sounds of fluid moving/rushing sometimes are the nerves reacting/engaging  not really fluids.....
Thank you so much as always selma. So this intense crushing type pressure that’s wrapping around my head is it more then likely just the chiari?
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No idea, it could just be the Chiari.....have you had a CINE MRI? Chiari headaches can cycle...meaning they can get worse or better...all depends on  you OR the weather....the weather is a hugr factor in how we feel....if you are having bad weather now or in the next few days your head can act like a barometer.....so do not stress over what it might be and try to find a Dr that is a true Chiari specialist and will test you for ALL related conditions and will look to see if you have a CSF obstruction.
Try to relax.....lay in a darkened room with your favorite music playing...or take a warm soak in the tub....I hope your feeling better soon.
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Just scared if I don’t go to the er something will happen..
I haven’t had a cine mri yet and that’s why I’m worried it’s hydrochepalus from the chiari... I’ve got the bad pressure in my head along head pains that come and go like stabbing pains.
Right now I have this intense pressure right at the base of my head we’re it meets my neck it’s like fluid is getting caught there.
I am so sorry you are havng such intense pain and that it is scaring you.......if you would feel better going to the ER by all means go, but just know you may get a Dr that has no idea what Chiari is....and may downplay the symptoms you describe....OR they won't know what to do for you but give you opiods....which won't help the pain....
They also won't do any testing, CINE MRI etc....they will refer you to your NS or NL.
Stroud5393... a number of the symptoms you mention mirror ones I've experienced as well.

Let me start by reinforcing several points selmaS has made in this thread, as selmaS is spot in here.

1) On the whole, size or depth of your herniation does not precisely correlate  with CSF flow, syrinx formation, and symptoms.

2) You definitely will want to get a CINE MRI. As far as I know, it is the only way to accurately measure CSF flow.

3) You definitely want to find a neurosurgeon who specializes in Chiari Malformations.

While my Chiari 1 malformation has been symptomatic since my later teen years, it is only in the last year that my symptoms have risen to an alarming level. Before this I only dealt with a fine essential tremor in my hands, classic chiari headaches, regular neck and upper back pain, occasional heart palpitations, on and off tinnitus, and migraine headaches.

However, in the last year, I have had long stretches of CONSTANT light headedness, along with occasional dizziness. More alarming have been the 3 serious episodes of straight up room spinning vertigo. And most alarming has been the numbness and tingling in my fingers and toes. Beyond that, I've developed some small associated symptoms and otherwise all of the aforementioned symptoms have each escalated to varying degrees, but generally remain manageable.

I mentioned in another thread on this site that when my chiari was first found back in 2008, a young neurologist completely dismissed my list of symptoms and concerns. Knowing close to nothing about the condition, I took that feedback and moved on with life. However, I'm now connected w/ a neurosurgeon that specializes in Chiari Malformations. My experience in working with an expert in this field has been night and day compared to what I ran into back in 2008. So please, get a second opinion from someone experienced w/ chiari malformations.

I too feel generally dull (but occasionally fairly significant) pressure radiating from the base of my skull and back of the head. It has changed my behavior in a number of ways. For instance, (this is small but) I used to always wear baseball caps when out and about. Anymore it is uncomfortable to wear them, and makes me feel like my light headed or dizzy feelings are worse when wearing hats. So, I go without.

My best suggestion for when you feel that pressure and never ending light headed feeling is to find a position (laying down, walking, whatever works for you) to maximize your ability to allow the spinal fluid to flow better. Anymore for me, I only get relief from that feeling after a good nights rest with an ergonomic memory foam pillow I have, or a substantial amount of walking.

Finally, somewhat on the topic of feeling pressure in the head, I have to quickly relay an experience that I now chuckle about from when I was 20.

This was before I got my original chiari diagnosis in 2008. I was living abroad in a country that was at the time in an economic crisis, and contracted viral meningitis during an outbreak of West Niles virus in the region.  As you can imagine with my then unknown (but definitely symptomatic) chiari, the pain was EXCRUCIATING!!! I was absolutely convinced I'd developed a massive tumor in my head overnight. :)

I could not think straight, I could not stand looking at anything even marginally bright, I could hardly move, I couldn't hold down food, medicine, etc.

And, of course, unlike bacterial meningitis, there is no antibiotic to give for a virus. All I could really do in that setting was fend off fevers, and 'try' to reduce the pain. The doctor could offer no real relief. He knew it was viral meningitis because they were seeing it all over the place at the time there. I just rode it out in my apartment, roiling from the pressure, pounding, and pain. Then after about a week, I woke up one day perfectly fine like nothing ever happened. So, I compare the pressure and discomfort I currently feel to that and it gives me perspective, and YES it makes me chuckle to myself when thinking about unwittingly going through that as a clueless 20 year old with a symptomatic (though undiagnosed) chiari. :)

Hang in there, and keep looking for answers and help. And if nothing else, know that there are a lot of us fellow chiarians that can relate to and sympathize with your journey.
Thank you for the long response. Unfortunately I can’t see a chiari specialist without insurance I work with my family and we don’t have insurance... I’m at the er again because this pressure in my head is excruciating like a vice clamping down... Should I maybe tell them I need a spinal tap? I’ve read this can be increased intracranial pressure in my head. I’m losing my mind I wish I could just get the surgery :(.  Please I don’t know what to do...
I can’t see my neurologist till August not sure she will do any good anyways :(
Hi..since you do not have INS maybe you would be interested to see if you qualify foor a clinical trial.....they do them from time to time...and they are Chiari specialists that do the trial.....can't hurt to look.
Here is a link to trials they are recruiting  for -
https://clinicaltrials.gov/ct2/results?term=Chiari+Malformation&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
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Is this still active?
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Hi Yes , sorry I didn't see your update....it soounds like this Dr is not a true Chiari specialist....may I ask what testing have  you had? A CINE MRI? The size herniation should never be a reason to have surgery or not, it should be if there is a CSF obstruction or not that should help decide about surgery....if you haven't had a CINE MRI then the Dr should not make the decision to just wait it out.....do find a Dr that is a true Chiari specialist.
Does this sound like it could be hydrocephalus? Or possibly unrelated to the Chiari like a tumor because my headaches are worse today it’s like a throbbing squeezing pain it has me so worried :(
Selma gives good recommendations.  Make sure the CINE MRI is vertically performed and not horizontally performed.  
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Just a little update I saw the neurosurgeon back in march. He reviewed my scans with me and showed my my chiari saying it was roughly 7mm. He said at this time he does not recommend surgery... He said if I were one of his family members he would tell them the same that its better to wait... I guess I was hoping he would say that I needed the surgery and I could end this suffering.. The past two days have been really bad ive been having horrible pressure in the back of my head. I'm worried its hydrocephalus or something similar. Does the severe pressure warrant a trip to the er??
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Does not recommend decompression surgery? Or does not know of other courses to take? Chiari decompression surgery's goal is to create more room in back of the skull, in the hope of creating more room for CSF flow, and thus/also decompress the cranial nerves.  However, this does not relieve/remove the cause.  Some 20% of Chiarians, we have been told in the US medical community can find a tight or tethered spinal cord (born with this at birth) to be the cause of the Chiari herniation due to the pulling down of the hindbrain by the said tightness.  However, Dr. Miguel Royo-Salvador and many in the European medical community state this tightness to be much higher than 20% and that most Chiarians due indeed find their herniation due to this tightness and downward pulling of the hindbrain.  Proof: whiplash victims and women who have given birth find to suddenly have symptoms that an MRI shows to be a Chiari malformation herniation, whereas before the whiplash and childbirth no symptoms were present or no herniation!  A puncture of the dural (birthing epidural) has been shown to cause a slumping of the hindbrain, which is thus a direct cause of Chiari!  Some antibiotics have been shown to cause an increase in intracranial pressure and cause a Chiari herniation!  So, whereas the posterior fossa decompression surgery creates more room, the filum terminale dissectum/release removes the CAUSE.  And, because our brains are collagen (think cottage cheese) said release of the tightness and thus release of the downward pulling on the hindbrain can lead to an upward migration of the herniated Chiari tonsils.  University of Alabama found and upward migration of 1 millimeter, Dr. Paolo Bolognese of New York found an average upward migration of 3.5 mm's on hundreds of patients over a several year period, and my neurosurgeon, Dr. Royo-Salvador has indeed, per follow-up MRI found upward migration of said tonsils over a several year period.  Also according to Dr. Royo-Salvador, the LONGER YOU WAIT to release the downward pull, the more herniation that is going to occur!  Do your research, pray about it, become your own expert, seek multiple opinions, and quickly research FILUM TERMINAL DISSECTUM/RELEASE.  Godspeed!
Edit, University of Alabama at Birmingham on cadavers.
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A little update. I saw my neurogist yesterday about the resumts of the mris of the full spine all normal besides some degenerative changes in my cervical spine. No syrinixs or anything like that so thats good news. I am finally seeing the neurosurgeon feb 26 i hope to get some answers. My lightheadedness has been so bad this past week but my neurologist said chiari doeamt cause lightheadedness is that true?
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She doesn't believe my lightheadeness is neurological at all but I've litwrally had everything elae tested with normal results..
I’ve had my fair share of neurologists dismiss me and tell me chiari wasn’t my problem. Even after my first decompression when my symptoms came back they were less than helpful. One did diagnose me with high ICP and put me on diamox for over a year.

Have you ever had a tilt table test done? I had one years ago and was diagnosed with orthostatic hypotension which causes dizziness and low blood pressure issues. Something to think about. Just keep pushing for answers
The weather can affect how you feel....so the light headedness could be due to the barometric pressure more so then the Chiari itself. A tilt table test is a good suggestion as it is best to rule out ALL related conditions and POTS is one  many with Chiari do have in addition to Chiari.
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Ok Selma i needs some of your great advice. This is gonna be kinda blunt but here it goes. Last week i noticed during sex right as i was ejaculating I got a severe pounding headache in the back of my head that I've never had before. Now every time I attempt to even have sex the pounding headache starts. I went to the er thinking maybe it was a aneurysm or something related. They did a ct scan which was normal. Can this be chiari related or probably something unrelated? Now i can even cough and i will get the pounding headache and its got me real concerned. Also yesterday I broke out into a sweat for no reason at all..
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Hi, yes it is a Chiari symptom.....any type of activity can cause this...even a BM.....a cough, sneeze or laughing....

Chiari can affect all functions in the body and during a flare it is possible to experience new symptoms you have never had before....and I know it can be very scary.

I wish I could say it will all be better tomorrow.....and I pray for you that it does get better....but the more you worry, the worse you will feel.....I know, trust me I know how  hard it is to relax when so many scary symptoms crop up.....but you need to relax to begin to feel better. Avoid activities that can cause the symptoms to flare .
Thank you so much selma for all your helpful advice. This has me so depressed.... Is hot flusing and high heart rate chiari related?
Yes, it can be...there are also related conditions which could also cause those symptoms.....a good Chiari specialist can help determine which symptoms are from which condition....but it can take time and continue to be very frustrating.......
Now I’m really getting concerned. The pressure in my head is constant now along with the dizziness and general unwell feeling... I just don’t know what to do... I’ve been to the er countless times and my gp nothing helps me!! I don’t k ow how much more I can take really :(
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Another thing that really worries me is that the headaches just started to get really bad everyday just a few weeks ago. Could it be something else causing the headaches like Intracranial hypertension? Or is it more than likely just the chiari?
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And I keep getting this fluid sound in my head could this be my spinal fluid being obstructed??
First Breathe.....try to relax, I know it is hard especially when symptoms worsen but you could be making yourself feel worse.....
As I said it could be weather related this time of year....my head feels like it will pop open any time now.and I had surgery 10 years ago this May.....I know mine is the weather, as I can see the pattern......I also know I have been overdoing it and I am taking time to rest up and recoup.....it's important that we listen to our bodies and react positively to it and make the right corrections to allow us to feel better sooner.

There are many possibilities but until you are seen and tested it is just speculation and something that will only stress you more.....again, try to breathe.

Keep us posted on if you get in sooner to see the Dr and then what the results of testing are.
It’s honestly so hard to say calm bring in this much pain. The headaches have been all day constant for almost 2 weeks isn’t that worriesome?
I meant to say stay calm being in this much pain.
No worries I can read Chiarian...I am one....lol....

I understand it is worrisome, and I also know how long these episodes can last.....Resting and keeping calm can help....even though it is not easy to do.....it can help, and until you have further testing there isn't much more you can do, sorry to say, and the ER will not do much and possible peg you as a med seeker....they do not DX, they only treat what they can see and send you on your way......this is not something they will be able to see, so they can't treat it.....

Hang in there.
But can’t chiari cause things like hydrocephalus from obstruction? Could that be why I’m hearing the spinal fluid popping in my head? Thank you so much for always taking the time to reply to me...
Chiari can cause a syrinx to form, which can block spinal fluid, and many times what we hear and believe to be fluids can really be the nerves responding to stimuli.
Hydrocephalus can be a DX, but I have only seen it post op, and I really feel it was more a reaction to the replacement dura and not an obstruction.....JMHO.....I am not a medical professional and I can't advise , but I do feel Drs that use anything other than the patient's own tissue for a dura patch will find excess CSF as a result. I have witnessed it too many times not to be the case.The reason I feel it happens is due to so many of us also have EDS and it is undx'd when surgery os done and precautions are not taken to help avoid the post op issues.
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Does anyone visit this board anymore? I really need advice..
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Hi , I am so sorry you are feeling alone and in pain.....The ER can't really do much for you even for pain.....I know that doesn't help you, but what you should know is Chiari symptoms do typically flare.so the more stressed you get the worse you can  feel.....plus the weather is a factor is triggering pain and symptoms.

The best advice I can give is to try to relax, call the Dr that gave the Feb appointment and ask to be on the cancellation list to get you in sooner.....that way you can have testing to figure out why the increase in symptoms.
Thank you Selma I will call now to see if I can get on the cancellation list. Every time this pressure in my head is really bad my ears get really red and hot have you heard of this?
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Just a little update, I saw the neuro in October about the results of the mri. She pretty much told me she didn't think it was bad enough for surgery, but she said she didn't know much about chiari. She said she was giving my scan and everything to a neurosurgeon and he would review it and decide if I need surgery.
Last I heard I someone one from neurosurgery would call after he read everything. I still have yet to get a call and my symptoms are getting worse fast...

The head pressure in the back of my head is almost constant now and feels like my head is in a vice and I can hear spinal fluid popping in the back of my head. I'm so scared that's it serious or something now.. I called the neurologist about the worsening symptoms and they scheduled me an appointment February 7th. I went to the ER last week because of the worsening head pressure and everything. They did a ct scan which was normal. Should I go back to the er since things are getting worse or is that pointless??
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I’m going on a family vacation to Florida and I’m so terrified everything will get really bad because I’ll be in the heat.
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You should get copies
Of the report and read it for yourself. Even if they say it’s “normal” something important could be written on it. I went 15 years being told I was normal and after being diagnosed and getting copies of all prior MRI’s saw chiari written in black and white...

Also I hope you can go to Florida and enjoy yourself instead of feeling miserable. Try to relax and take it one day at a time
There is a really good Chiari Dr near Disney...not sure where in FL you are....there is another Dr down in Miami......if you should need help. Try to relax and enjoy your vacation....and try to keep cool.....in a pool or inside during the higher heat of the day.
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Ok today I’m really concerned I’m feeling real out of it and confused it’s hard to describe but I find it really difficult to think clearly. The past couple of days I’ve been feeling off like something different is up idk. Could I have hydrochepalus causing these symptoms?  Or could this just be chiari causing the confusion and stuff?
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Please someone respond I don’t know what to do I don’t know if I should go to the er or what because I’ve been 4 times in the past month or so :(
I know that a lot of my symptoms can be caused by brain stem compression I don’t understand how my brain stem being compressed doesn’t warrant emergency surgery I’ve read people can die suddenly do to it... I’m sorry I’m just a wreck and don’t know what to do.
Hi...I am sorry I was not able to get on my computer and missed a few posts.....and I am so sorry as I know just how frustrated and anxious you are about these symptoms.

Sorry I can't remember  if you have had a CINE MRI? If you did it could indicate an issue with ICP or Hydro.
Are you keeping a journal to see if outside events/forces are triggering your symptoms...I know the recent weather here has been awful and will be  a major trigger for us Chiarians.
I believe it’s a cine mri I have scheduled this Tuesday I hope it reveals answers..
Good Luck Tuesday and I pray you are feeling a little better. Do let us know how the testing goes and remember to get copies of the MRI on disk before you leave....tell them  when you sign in and also ask for a report to be sent to your home ( you should have to sign a release for them to send the report.)
Unfortunately I was wrong about it being a cine mri.... It’s just a regular head mri o really need the cine mri now I may never get answers... I’m fixing to get the mri now I’ll ask for the copies and everything.
Isn’t there a chance that they won’t see the chiari this time and they think I don’t have it all of a sudden?
Chiari is the malformation of your skull...it can not go away....on the other hand, low lying tonsils is many times referred to as Chiari since the symptoms and treatment are the same...low lying tonsils can sometimes retract on their own, making it appear that it went away....this is not a common occurrence.

Regardless of what they see, you either have it or you don't, ,the MRI may help determine what you do have if Chiari is not the DX.
Well I have to wait till October to see the neurologist about the mri results my symptoms are getting worse by the day.... It’s really terrifying to know that this will never get any better even after surgery :(.
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For the past few days I’ve noticed a burning sensation acros my whole back it feels like it’s on fire or something. Is this a chiari thing or could that be a syrinix?
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I don't have a syrinx, so I can't tell you it is not one....but I get that sensation and mine is from my EDS DX.
I don't know what it is but its really concerning me.. It feels like a constant hot sensation in my neck..
Avatar universal
Well I saw the neuro yesterday and I believe I’m getting a CINE mri because she said she needed to speak with a radiologist about what type of mri I need and I just expect that to be it. Honestly from looking at my last mri it doesn’t appear to be any obstruction with my tonsils blocking spinal fluid I think most of my symptoms are from brain stem compression abs the fact it’s kinked.
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I’m afraid she will come back and say the flow is good and assume my symptoms are cause by chiari but that’s not true is it, it can also be caused by brain stem compression correct?
Chiari symptoms are deff due to brain stem compression and diminished csf flow. My brain stem was kinked and I had diminished flow also. I think with brain stem compression, it has to block at least some flow just anatomically speaking.

I pray someone can find the answer for you and you can find some relief
Thank you so much for your prayers I pray they get this took care of..
19681337 tn?1531695242
Hi, i'm 21 and I got decompression surgey 13 months ago and still experience shortness of breath, dizziness, and feeling disassociated all the time. i totally understand how unnerving it is but it's comforting to hear other people feel this as well. i don't have another MRI or appointment scheduled until october, so please let me know if you find out any more info on this from your doctor. good luck, praying for all of you.
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