Introduction and help?

[googlebrains]

I'll try to keep my introduction brief, but my head's spinning a bit at the moment, so I apologize in advance...

I've been passing out and getting dizzy spells since I was eight (I'm now early 30s)...my dad thought it was low blood sugar and force-fed my orange juice (he's Native American and doesn't believe in doctors...).  Since then, I've had some weird symptoms: sort of POTS, sort of Addison's, sort of heart valve issues, etc...  I was diagnosed with multiple prolapses and vegetation when I was fourteen (and severely anorexic, which I think played a role in my heart's crappy shape).I had an echo last week and there is nary a trace of any prior issues--it's perfect again.  I attribute this to healthier eating habits and supplements.

Anyway, my consistent symptoms follow:

-Dizziness
-Fainting
-Throwing up (for no reason)
-Random intermittent numbness of face and legs (worse in mornings)
-Neck stiffness (I have the worst tall-girl pasture of all time...)
-Leg pain (muscular), but this seems to be very connected to my diet soda addiction...when I stop drinking those, my pain ceases.
-Increase in pulse by fifty points upon standing
-Intermittent bouts of blurred vision (worse in mornings)

This was all attributed to Hashi's/mitral valve/POTS...but last week, I had a bizarre visual problem (significant blind spot in both eyes).  The ER thought I was having a trans ischemic event, so they did an MRI and diagnosed me with Chiari I malformation (something about 5mm tonsils in my forearm or something...well, not that, but it sounded like that).  I thought this was a good thing until I made the mistake of Google-ing Chiari...

So, some questions:

1.  Is it totally strange that I don't get headaches?  Do I still fit the Chiari mold despite this?
2.  If I do have C1M, am I going to get worse?  Is it possible I won't?
3.  Is is possible that I will pass this onto a future child?  I want another child, but certainly not if I'm going to pass along some potentially bad defect!
4.  Do I need to be terrified that my life is going to be derailed?  Because I sort of am.  I keep reading about invasive brain surgeries and paralysis and the like...and it is scaring me to death.

I detest "specialist" physicians and mainly stick to acupuncture, nutritionists and osteopaths for medical care.  I don't eat wheat, sugar or any known allergens and my blood work is perfect minus one test that shows I'm wasting muscle (some kidney function test, I believe).  And I never take so much as an Advil and can totally manage the symptoms I have currently (although passing out and breaking my leg last year was not at all fun...), but I'm scared I'm going to turn a corner and be paralyzed or be in constant excruciating pain or something.

Any advice?  Should I just keep trucking along unless something gets worse or do I need to be proactive about this?

I look forward to getting to know you all :)

--Missy

[The_Marine_Corp_Brat]

You can never allow a condition to rule your life, you have to look at the dx's as an early warning to you to seek help that you may, or may not need should you start actually having problems related to it you will be ahead of the game and know what is going on and not blindsided by the condition. It may never affect you the way it does some of us but it's better to find a true Chiari specialist and know what you are dealing with and what to expect. It's all in how you look at the situation. It's not easy and yes like me many others have been and still are being tested and for many other conditions and have had to deal with nl's that don't know enough about cm to make informed dx's. They have no clue what they are doing, I am trying to find one that specializes near me as I have dealt with this all my life and my symptoms are only getting worse. I pray you never go through what CM can dish out, but at least get checked by a specialist and make informed decisions. Hope this helps, I am truly amazed and inspired by the others that have not only dealt with this but gone through the surgery and been willing to share their experience with the rest of us! Chiari is life altering it doesn't have to be devastating! Learn to lean on your friends and family, talk to them about your fears they may not truly understand but they need to know how you are feeling and what you are going through to help you get through the days ahead.

[STL5]

You have no control how your skull forms.  Sometimes it isn't what happens in life that is as important as how you handle it.  What you do in reponse often defines you more than what happens to you.  I guess that is why you will hear that chiari is life altering not life threatening.

[googlebrains]

"To the dumb question 'Why me?' the cosmos barely bothers to return the reply: Why not?"

--Christopher Hitchens

I guess that's what we're all left with.

[STL5]

Sorry, but I do not know why...  age?  small kids have chiari...size?  people of different sizes have it...lifestyle?  some are diagnosed after a car accident...  it seems to be more related to the flow of CSF fluid between your brain and spinal cord and crowding.  If there is blockage then you may develop a syrinx..  Much still needs to be learned about the brain and nervous system, research still needs to be done.  Some people have chiari and never have a symptom.  Others are symptomatic most of their lives- it doesn't seem fair does it?  

[googlebrains]

And, I agree...being misdiagnosed with a TUMOR is terrible!!

[googlebrains]

Okay, one more question I cannot find an answer to: why does it progress?  Are there any known triggers?  I can't understand why it gets worse when you brain isn't growing?  Does weight or musculature affect it?  Drinking?  Smoking?  Caffeine?  Riding roller coasters?

There has to be some rhyme/reason as to why it progresses in fully grown adults, right?

[STL5]

Give it a little time to sink in and ask questions.  Quality of life- plain and simple.  No doctor will make you have the surgery.  It is totally up to you.  The doctor you see may recommend waiting to see if you have worse problems develop.  You may never have anything more than what you have now.  No one has a cut and dry answer since everyone is different.  Most will ask you can you live with the symptoms or not.  When they did the MRI of my spine the radiologist put that I had a tumor on my spine.  Luckily the neurosurgeon looked at the actual MRI and corrected the radiologist and made her add an addemdum to the report that I had a syrinx not a tumor.  They are only human and also prone to mistakes.  Unfortunately their mistakes can impact your life in a big way sometimes.

[googlebrains]

About kiddies: there's just no way.  First, if this all pans out, I'm not going to put myself through pregnancy and delivery because it seems like that can make things worse.  Second, I'd basically be suicidal if I gave my child some disease that could derail his or her life.  Third, I say we all stop procreating and nip this thing in the bud.  No one deserves all of these health crises and I certainly don't want to perpetuate it!

I have a perfectly healthy son who is brilliant, incredibly athletic and socially gifted.  I won't roll the dice when the odds aren't in my favor.

[googlebrains]

Unlike you, I've had goofy health my whole life, but never anything painful.  Just weird stuff that didn't really raise any alarms to myself or my physicians.  

I don't get cramps, but I am nearsighted :)

Is this community mainly composed of those who've had a bad time with c1m or is everyone with this basically doomed?

[googlebrains]

Thank you for writing!  

Surgery just to stop any potential progress?  As in opening my brains and spine and sawing stuff out?  Welcome to a nightmare, I guess.  I am terrified because no one is saying that it's just a little weirdness sometimes--but then why do some neurologists seem so blase about it?

I've been passing out for years and when it was diagnosed as POTS, there was no mention of any treatment at all--basically I was told to take time getting out of bed, out of chairs, etc...and make sure I ate small, frequent, salty meals!  But the visual stuff freaks me out.  My ophthalmology guy said my eyes are totally perfect: nerves, retinas, everything.  They still think my little visual episode was an ocular (painless) migraine from some strobe lights I'd been exposed to earlier.

I'm very sad about all of this.  I'm trying to keep hopeful, but reading all of these comments is so daunting.  Basically, zero good news to a person who, at the moment, is fully functional and pain-free...basically a promise that my life is going to suck and I might need to get my skull carved into...literally, a week ago, my biggest problem was that I passed out once in a while and now, basically, I have no shot at a normal life.  But then why do so many people have this and have zero symptoms?

I'm confused and disheartened...and vacillating between complete denial and anger...I saw a neurologist a few years ago because of my vomiting and she gave me a full neuro exam and said I was perfectly intact and said I had food allergies.

Ugh...it almost seems like a life not worth living at this point.  I don't want my son to see my sick or with a huge gaping wound on my skull :(

[Viva001]

Im a big believer in TCM, but it just delayed the inevitable.  I didn't have the horrible pain that a lot of people have, but I knew I was suffering.  The bottom line for me was my vision being impacted; fortunately, it was resolved within a few days of surgery.

Other than nearsightedness & menstrual cramps, I had perfect health (which i did not appreciate) until my mid-40's.  You just never know what this condition will dish out.  
I wouldnt worry too much about the genetic link; i come from a huge italian family, and i seem to be the only one with Chiari.  (unlike our problematic feet, which is obviously genetic).  On the other hand, there's a lot to be said for having just 1 child these days, IMO.
I wish you the best.

[STL5]

It sounds like you want to make sure of your options. It is better than rushing into anything.  I don't think that anyone really wants surgery- it is the choice once you cannot live your life as you chose.  The only "guarantee" you get even with the surgery is that it may slow the progression of your symptoms- any symptoms that go away are a bonus.  Over the years I never had regular headaches- only the horrible head pain when I coughed.  I only sought out a doctor when my left side went numb.  I elected the wait and see approach.  I only elected for surgery when my balance was horrible and the final straw was when I "woke" at the bottom of a flight of concrete steps not remembering falling and had to go to the er.  I know that I most likely got this fom my grandfather's side of the family.  He is deceased so I do not know if he was ever diagnosed with chiari but I do know that he had fluid on his brain and had a stent.  I have a syrinx.  Live your life on your terms for as long as you can.

[googlebrains]

I'm going to go see two neuros and a neurological acupuncturist (he's a neurologist who also does acupuncture) and see what everyone says.  I'll get the MRI and see what it shows as well.  

Not being in physical pain is usually a good thing!  I feel like if all this stuff was wreaking havoc in my body and I had a bunch of other weird diseases, I probably wouldn't be able to take active vacations, rock climb, swim, hike, skate, bike, etc.  And when I am adjusted by my chiro for the numb patch on my leg, it's never painful, I just get feeling back.  

I am still hopeful that I haven't slipped down into some hellish abyss of horrible health!  :)

[googlebrains]

I've been fainting and throwing up since I was eight years old, so there was no luck finding this early for me.  Honestly, it doesn't interfere with my life a whole lot because I'm used to it and my fainting spells are very predictable, so my kiddie is always safe!  Have you given up driving?  With five children?  God, I hope not...  

I'm confused as to why you are sure your symptoms will progress?  Do you have other diagnoses that complicate the situation or just the tonsils?

The more I read non-anecdotal research and info, the more I think the anecdotal stuff is complicated, worst-case-ever situations (half the neurologists don't even think c1m a big deal at all)...and we can't all be worst-case scenarios!  Apparently, a zillion people have this quirky little brain thing and MOST are just fine.  I feel terribly for the ones who tangibly suffer, but all of those people seem to have, like, twenty other genetic diseases!


xo

  

[selmaS]

Hi, I was not trying to stress u out, but to inform u of all the info u should look at to be safe. Some feel the fact that they do not have pain with chiari that they r better off then those with pain, not so...if the nerve is compressed the signal for pain does not get thru for u to feel it...so that is not always the best way to go and y I suggest u  continue with  more testing so u know if a watch and wait is the best route for u and a true chiari specialist will not offer surgery unless they feel the benefits out weight the risks and then it is ur choice.

[selmaS]

  Hi and welcome to the Chiari forum and sharing ur experience.

It is so true that today younger people r getting dx'd with chiari , when I was their age MRI was not an option first bcuz it was not around, and then bcuz of costs, so I had to wait until age 48 to get a dx....

  A CINE MRI is the best nest step for neone with Chiari as we can tell just how it is affecting u, as u may not always feel the effects.

[ohwilkens]

Just a quick note to you.  I can totally relate to not wanting admit you saw the MRI, but you did.

As the mother of five children I can relate.  I don't want to admit it either, however after fainting earlier this year and doing some real damage to my own body, it occurred to me that the same thing could happen when I was driving my children around.  Then where would my denial have gotten me?

My symptoms are mild compared to many I've seen here, however they will progress.  I have come to the decision, that for my children's sake I can not afford a wait and see attitude.  

It sounds like you should at least have the CINE MRI done to rule out a CSF blockage.

Just a little advice.  I feel we are the lucky ones.  Our condition was diagnosed fairly early on.  Many people have to wait years.

Good Luck,

Shellie

[googlebrains]

Thank you for writing!  

As I don't have any life-altering symptoms, I almost don't want to open the proverbial can of worms, you know?  I'm so freaked out by having some health issue that isn't just a "lifestyle" or insanely common immune system overreaction (as are POTS and Hashi's) that I just want someone to tell me it's a non-issue...and not to compound it by telling me there is other stuff defective about me :(  

As far as having another baby, a genetic defect is an enormous consideration to me just because of the pain and expense incurred.  I see the scars from the surgeries (and read about the painand the ICU stays, etc...) and keep reading about people visiting doctor after doctor with chronic pain,  narcotic medications, etc...being generally miserable and getting on welfare and stuff because they can't work.  If there is any chance I would do that to my child, I couldn't ethically do so.  I feel morally compelled to keep any of my defects out of the general gene pool ;) All the women in my family have Hashi's and that a nothing of a problem, but it's still annoying and REALLY expensive!  

I'll ask this neuro about the different MRI and if that's clear, I'm just going to pretend I never saw that stupid MRI :)  I'm a pretty healthy girl with some quirky problems (my boyfriend refers to my fainting spells as "damsel in distress syndrome") and my doctor blames my tall, skinny frame for not moving blood around quickly enough :)  I can totally deal with those diagnoses!

Thank you again for reaching out--it's good to hear that I have no reason to panic!

xo

[RheaAnn]

Hello! First and foremost, try not to freak out! I have Chiari and have had the decompression surgery because I was very symptomatic. I also have dysautonomia. It is linked to Chiari. You can find out about it in the health pages. It's called lots of different things (like POTS, neuro cardiogenic syncope- every cardiologist labeled me with a different term.) however, they are very similar in the symptoms and treatments.

Not all those with Chiari are symptomatic. Some have conditions (like dysautonomia) that co-occur. Surgery depends on how your condition is affecting your daily life. Some with Chiari wait years to have surgery, some never have surgery. Some have to have surgery due to other issues with CSF flow being compromised.

Children: There is no one gene yet linked to Chiari. No one is sure if it can be passed down to children. Most updated research shows that there is a weak correlation in genetics. There is some data showing that is occurs in families, but it is not strong enough to prove that it can be passed down. It is a personal issue to consider. If you want my opinion- my decision to have children will not be in any way shaped by concern for passing CM on. There is a more likely chance for my child to end up with a more common genetic disorder, such as down syndrome. Also, should my child have CM, I believe that I would be the best possible person to mother the child from having so much expert experience!- This is my opinion!

You were probably diagnosed with CM because of the tonsil herniation. That is how most of the radiologists and neurologist find it on a MRI. A CINE MRI will tell you more about the flow of the CSF which is very important to know if you want to understand more about how your CM is affecting you.

Hope this helps! Keep us updated if you need us! :)

[googlebrains]

Oh, sadness...I already feel so genetically defective because my brains are falling--adding more "conditions" may throw me into a deep depression (and I just Wiki'd Ehlers-Danlos and have no signs/symptoms)...and reading that I could pass C1M on to any child I create is too depressing to even think about...  I really wanted one more baby :(  Huge bummer.

As far as invasive brain/spine surgery, I'm no where near symptomatic enough to even consider it.  I mean, had my vision not gone screwy, I'd never even have have gotten an MRI (which I'm sort of regretting now because I'd rather just not have known...).

I have an appointment with a "top" Chicago neuro next week (should I ask him to do a CINE MRI?)...after reading about Chiari specialists, I'm a little leery as they seem to be very pro-surgery.  I'm seeing a neurological acupuncturist this week who is very knowledgeable about C1M and he seems very excited to help me avoid traditional medical interventions.  Fingers crossed.

What about progression?  How is C1M diagnosed if not by MRI?  Is it possible that just because I have the tonsil thing, I don't really have C1M?  Because that would be AWESOME!  :)

[selmaS]

  Hi and welcome to the Chiari forum.

First, yes u may have chiari, u may have POTS, and ICP and ehlers-danlos.....

B4 u stress out get a CINE MRI and rule out all the related issues.....find a Dr that is well experienced with chiari to help guide u.

As for passing this condition on to a future child, it is possible., and it is possible that u may not.

I had surgery 3 yrs ago and I did not have those negative effects, as long as u get the right testing and find the right Dr u should be ok, keeping in mind there r risks with all major surgeries....so it is possible that u could have or develop a new or diff condition as a result of surgery.

We r here, ask questions, and know u r not alone