What's the worse that could happen?

[Jwills133]

I went to the ER the other day and was told after having a CAT scan I have Chiari. I have been trying to read up on it. I have alot of the symptoms well all of them however when I was 8 years old I had two head injury so I blame most of my symptoms on that. I also smoke so the reat of the symptoms I fugure it's do to smoking to much.
I keep reading how this charges your life and you have to watch what you do know ect ect. I'm confused of why. If headaches, neck pain and dizziness is the worse and I've been living with this all my life why do I need to change anything? I know the headaches get bad I've had them for 20 years and I use to sit in a dark room for a week til they went away (my doctor figured it was from the head injury), also the neck pain has got to the point that it always hurts so I've learned to deal with. I get dizzy alot but just thought it's cuz I smoke to much and my oxygen levels were bad. I don't mean to sound rude or stupid I'm just wondering why everything I have seen says this will change my life. Also if there isn't nothing they can really do and I've already been living through the worse what's the point of wasting my money to see a doctor? I'm just confused and was hoping someone here could just give me the short answer of why I this will change my life or why should I even go to a doctor and get a MRI if there is nothing that can fix it?

[selmaS]

  Hi and welcome to the Chiari forum.

Low lying tonsils is not Chiari BUT the symptoms are the same, and can be treated the same way,,,,,

Also just bcuz it said low lying tonsils does not mean the radiologist was correct...if you have copies of these MRI's make more copies and send out for other opinions.....AND Chiari can change with time....so a more recent MRI ( last 6 months ) will be warranted to give the best idea as to what may be going on.

Keep in mind there are several conditions where the symptoms can be the same so they will need to be ruled out....MS, lymes, lupus...these are unrelated to Chiari, then there are related conditions that need to be ruled out as well....Syringomyelia, ICP, POTS,CCI,EDS, sleep apena........

Research on all conditions and Drs...having the right Dr is key !

[jamjam0102]

My name is Jamie my mom I think there is some what I'll on her avis with is an after care papers fromthe er the states after her ct they reccomended her for a MRI of possible chair I malformation. She had a stoke 10 years ago bells palsy her face kinda  sank down then a petic ulcer her lab work is rather crazy all highs and lows she is anemic takes iron 3times daily she complains for tingling ,back pain she states her back hurts she gets dizzy has had 6 blackouts at work in the past few years  she doesn't like going to the doctor I just want my mom to be ok  I know years back she got punched in her nose then she sneezed and her eye blew up really big and her nose was surely broken I would just like some in put my mom goes to an outpatient center to get labs and MRI of brain and lumbar and a ct of cervical  but all the symptoms are dead on I am just scared for her  last set of labs and the ct plain of head she had done was 2012 and the doctors what everything recent  so I guess so they can pin point  did I mention in the ct it states she has low lying tonsils  and something with her lameia is fractured I have to look over the papers but pretty sure. It about 3 in the morning and I cannot sleep thinking about this

[selmaS]

   Hi  and welcome  to  the  Chiari  forum,

  Many  of  the  symptoms  you  mentioned  can  be  considered  Chiari  symptoms....since  you  had  a  trauma  to  the  head,  yours  could  be  acquired,....and  I  wonder  if  your  cyst  is  a  syrinx.....that  can  form  as  a   result  of  an  injury  or  due  to  the  tonsils  creating  a  CSF  obstruction..,,.either  way  it  is  good  to  know  which  it  is  and  if  you  have  an  obstruction......do  I  think you  should ignore  it,.....by  NO  means.....if  you  can  afford  to  get  to  NY  then  go.....

[Bamagirl40]

Hello there.  I am new at this, and was diagnosed in 2012 having an arachnoid cyst measuring 10.25 mm x 16 mm.  I have been seeing a neurologist locally and he finally updated my MRIs this year.  He has discovered what he says as "Arnold Chiari cerebellopontine angle arachnoid cyst", and has recommended me going to the Chiari Institute in New York.  I have so many symptoms that started when I dove into a shallow end of a pool face first.  I misjudged the depth and ended up with a severely broken nose, migraine headache, and terrible neck problems.  I did not go to the doctor because I was quite embarrassed.  My symptoms have become so much worse over the years.  I suffer from six to ten migraines a month and a headache everyday.  I couldn't tell you when the last time I was pain free.  I have dizzy spells often and a month ago suffered from seven blackout sessions where once I ended up in the ER. They diagnosed me with Vertigo.  I just found out that three of my close family members have cyst on their brains as well.  Mine, apparently is located at the base of my skull and top of spinal canal.  My symptoms are; headaches daily chronic, migraines, extremities are always cold which sometimes make me shake uncontrollably, numbness and tingling at tips of fingers and third forth and fifth toes on right foot, hormonal issues, ringing or low frequency noises in my ears, muscle pain in shoulders and back pain everyday all day, vision disturbances, insomnia and chronic fatigue.  I can not bend over to pick up anything or to tie my shoes without immediate pounding in my head.  I have recently (past year) been unable to sit because I feel like my tailbone is broken.  I'm only 40 years old and scared to death.  I try not to tell anyone about my pain because they either don't believe me or think I'm lying.  My husband doesn't understand and may not believe me. I don't know.  We don't talk about it.  What should I do?  Should I go all the way to NY from lower Alabama or just ignore it and deal with the pain?

[girlinxile]

I would say also, to your original post, that most everyone on here seems to have had symptoms before they were diagnosed.. for years even. I used to have crippling headaches and have been treated for a sore neck for almost 20 years. Headaches would come and go at weird times but I never put anything together. A few months ago everything changed.. the headaches changed and went into my eyes where it would hurt to open my eyes, I couldn't turn my head, my neck was stiff and swollen.. once the symptoms started to get worse they all did until I knew something was truly wrong. I had been living with stuff for many years.. but no only do I not want to risk paralysis or something else bad by letting it go to long.. I literally started having quality of life issues. CSF flow study showed a block and surgery is recommended. I should be going next month. But the book I am reading also says that this is how it is for most Chiarians... they have some symptoms then BAM- one day the cascade starts and everything gets way worse way quick. Its super fun. But the CSF flow is important to find out imo... not that I am some expert but I have been reading books on this for a few weeks.. lol

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of activities to avoid with Chiari and Syringomyelia in our Health Pages.....these are listed to help avoid triggering symptoms.

A well experienced Chiari specialist is one that can tell u how to best treat urs as we are all diff in how this affects us and our overall health.

Chiari can be acquired from a blow to the head, a blow to the head can also trigger a dormant Chiari....so again u need a Chiari specialist to tell u if urs is acquired or congenital.

[carolynfish]

when you search,  Let me know what not to do to irritate the condition and what to improve the condition. Thanks Carolyn

Also can a hitting ones head  on hard surface cause chiari  or are you just born with it.?

[Viva001]

Well, beware of info you get over the internet, but my pcp told me that ibuprofen has been shown to be as effective as Rx for migraine (or accelerated HAs in my case).  The protocol she told me was:  1200 mg ibuprofen at "bad enough to go to ER HA", then 600, then 400mg.
(You HAVE to take it w/a lot of food; if you blow out your stomach on it, you wont be able to tolerate it again).

It's hard on the kidneys, but my NL told me that abnormality  shows up on bloodwork before actual damage is done to the organs.

[selmaS]

  Hi, I saw u asked about chiari healing itself...and there is a problem with what u read, the person had low lying tonsils not chiari...the difference is the low lying tonsils can be from blunt force trauma, they can have the same symptoms (George Clooney had this) so a fall with a hit to the head can create symptoms the same as chiari if the tonsils r forced out of the foreman magnum and block CSF flow....

Chiari the cerebellum is malformed and too small this forces the tonsils out...and a fall , cough or trauma cna help them  along but they can not retract as the space does not allow it...no room....

With low lying tonsils it has been documented that yes, sometimes the tonsils retract after they were forced out by a blunt force trauma.

But not when there is a malformation of the skull.

It is the verbage  that can get confusing....yes low lying tonsils may get the same treatment and symptoms but it is not chiari even if that is what they try to call it...and ur herniation is not chiari the malformation of ur skull is, the herniation is the result of it.

So if u have congenital chiari it will not heal itself.

[Jwills133]

Well mine wasn't so bad until two Fridays ago when something troubing happened to me and I ended hitting my head which is the reason for the ER visit that found the Chiari. Now my head hurts to the point I want to throw up and my hand won't stop shaking (more my right then my left). I don't have insurance so seeing a doctor isn't really in the cards for me at the moment. Does what over the counter meds would help kill the pain til I can go to the doctor?

When I was little I was so many different meds it wasn't funny and once I had my oldest son some how all the headaches and pain went away til now.

Any help would be great and thanks for taking the time to replay to my messages.

[Viva001]

As you will read many times here, Chiari malformation has to do with the small size of the skull, impeding cerebrospinal fluid flow,  and pressing on nerves.  The tonsils of some people are causing symptoms, while others have symptoms with no herniation.

There can be remission of symptoms (and I suppose retraction of the tonsils), but the Chiari malformation never goes away.  My symptoms waxed & waned for 16 years, until I crossed a point of no return last year--after pruning!

There's no way to know how many people live a full life even with the Chiari DX.  We know that many are asymptomatic and many don't require (or refuse) surgery.  Lots of room for research wrt to Chiari!

As my NS put it, we're "set up" for a downfall; it could be childbirth, a MVA, reaching in a cupboard, bronchitis, etc.

[Jwills133]

Don't feel bad for being blunt. That's the problem with all the research on the internet is everything is sugar coated. I'd rather someone be blunt and get to the point then to sugar coat everything and give me false hope.

Glad to hear that you feeling better.

I have another questions however, I seen that sometimes Chiari can heal itself. I seen a story of a person who 5 years ago had 15mm and now there is nothing. Is that even possible? I don't understand how that could even happen but praying that it could and mine will just go away on it's on.

[Viva001]

I kind of felt bad that I was so blunt, but really It's kind of like Russian roulette with many bullets in the chamber.

I was on the fence about surgery, especially because the run of the mill docs were dismissive of it.  But I had so many vision problems that the neuro-ophthamologist warned me that Chiari malformation could make me lose my vision completely.  I moved the surgery date up after that.  (i have a Chiari specialist).

My vision improved within a couple days after surgery!  

[tattie197635]

Wow this is new to me, I didn't know that having Chiari can cause you to have a stroke....that is very scary, or losing vision, I have been having serious problems with my eyes, where sometimes they just hurt for no reason even my glasses don't ease the pain.......I am going to research Chiari more indepth to make myself aware of what I'm living with....

[Viva001]

The worst that could happen is that it can kill you, from a stroke.  Other life altering issues could be losing your vision, being too dizzy to drive or read or even sit up,  ending up in a wheel chair, having no sensation in extremities, needing multiple surgeries due to underlying conditions, becoming disabled due to cognitive difficulties, and autonomic dysfunction in which everything from digestion to body temp to blood pressure goes haywire.

for many of us, we adapt, but our world becomes much smaller.

On the other hand, some people go back to work, exercise, and return to some kind of normality.
I hope you take good care of yourself.

[selmaS]

  Oh.,..it is a possibility....so, I would not jump the gun unless u see symptoms....knowing how u feel may help u identify them, but as children, even I did not know I had symptoms of something, I considered how I felt "normal" I had no idea that others did not get instant pain when having a BM or things like that ,,,,so, listen to how they may describe something as it may not fit a Drs description,.

  The thing is, may Drs view this as an incidential finding and do not report it for that reason...I had a MRI on my lower back my first MRI and it indicated I have tethered cord...I was still young , but I was never told until I was collecting all my MRI's to take to my NS once I was dx'd with Chiari and tight there in an old report it said TC and no one said a thing....

So it is not that they didn't see it, it was they do not understand how it can and does affect us....this is y u need a true Chiari specialist.

[Jwills133]

Oh I already have 3 children I was asking to see if I should have a CAT scan and MRI done on each of them.
I think I'm more confused then most because the ER Dr said I was born this way however from the ages of 8 to 10 I had a MRI done every month and sometime twice a month and then once a year til I was 16 . I just don't understand how I can see all kinds of Dr.s and have MRI's done without someone else not seeing this it first.

[selmaS]

  Yes, u can have black outs, or what is known as drop attacks.....

It can, alcohol can do many things to someone with out this, chiari affects our balance and vision with out drink, so adding it can make us feel even more inebriated....

  Well I have Chiari and have a child, she is full grown and married...but as long as u see ur Drs and follow their suggestions u should be ok....it really depends as we r all diff....there r some that may not be able to have children, but they do have more issues going on...this is y it is good to find out...it is best to have a C-section as the strain of a natural birth can cause more issues for us....I had no idea at the time and was in the hospital for 5 days with a CSF leak....so, it is best to find a good Chiari specialist and then discuss with them once they know what is going on, then share info with ur OBGYN let them decide what is best for u.

[Jwills133]

Thank you!  The ER Dr. didn't say much to me about it cuz I was there for a more serious reason and she was still upset with me about not seeing a Dr for the last 6 years. Next questions!!!  Does Chiari cause blackouts?  Does having a drink make Chiari worse? Also what are the chances my children will have this?

[selmaS]

  Hi and welcome to the Chiari forum.

  U have a lot of questions and I will try to get to all of them but if I skip over something please re-ask it....I will start from the bottom and work back to the top.

Why should u  even go to a Dr and get a MRI if there is nothing they can fix....bcuz they can restore CSF flow and slow progression, and if u leave it untreated it and u could get worse. Chiari affects all ur autonomic functions, that is ur heart, ur lungs...need I say more?

Chiari symptoms can  and do cycle....so, u may feel u have been thru the worst of it all now, but it could get much worst,.,many with Chiari have sleep apnea and have to use a C-Pap at night in order to keep on breathing....many times post op this issues resolves...u may still have Chiari and some of the HA's...but some of the more severe issues r no longer a constant threat.

Chiari is life altering....and it can change ur life just as ur continuing to smoke can.

Smoking can make ur chiari symptoms worse as smoking constricts ur vessels and veins...and with chiari u have compression and limited space for all the blood and CSF to flow so to restrict it further by smoking will just make u feel worse over all and is bad for ur health overall.

Many of us have dealt with this all our lives too, but a head injury can trigger symptoms to worsen by shifting the herniation and forcing it further into a tight space. So, yes head trauma can add to the issues, or awaken a non symptomatic chiari.

Once u know u have Chiari u want to refrain from doing things that will trigger the pain from getting worse or from causing the herniation to shift and wedge in tighter....

Once u know u have CSF flow obstruction u want to find out if u have a syrinx as well....a syrinx is a cyst like cavity that fills with CSF and blocks the normal flow in the spinal cord....as it fills it widens and puts pressure on the nerves, depending on where in the spine it is located depends on the symptom u may have, left untreated it can lead to paralysis.

There r also other conditions related to Chiari, the syrinx, known as syringomyelia, tethered cord, ICP, POTS, ehlers-danlos,disk issues, sleep apnea, low levels of vitamins and minerals and  autoimmune thyroid issues.

I hope this helps u understand this a bit more....many times those that seem worse post op many be dealing with more then just Chiari so I also suggest u rule out all related issues b4 as it can affect how u feel and heal post op.
  
If u have more questions I hope u ask....I believe in telling the truth, no sugar coating...it is what it is, but u can affect some change in how u feel with the right Dr,.