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Avatar universal

Are there different levels of severity?

So I have recently been diagnosed with this.  I have been plagued with headaches for about 3 years, although its really more of a unsteadiness/balance issue than actual head pain.  It was diagnosed as everything from hypoglycemia to migraines, to tension headaches, until I finally got the MRI and went to a neuro who was able to give me the Chiari dignosis.

However, this dizziness/balance is really my only complaint.  I get the occasional hand/arm tingles, but it doesn't bother me and it doesn't stay for longer than an hour.  Sometimes my muscles get stiff but I think that's more that I don't work out like I used to and have gotten a bit overweight due to the balance/dizziness issues.  My neuro has put me on klonopin to relax my muscles which should relieve some of the tension in my shoulders/neck and therefore, take away the dizziness he thinks is associated with the tense muscles and my brain not taking things in as it should.  I've been on it for about two months and while i"m not 100%, i'm nowhere near as bad as I used to be.

However, I've been reading these messages and people on here are saying how you can't strain, take meds to control coughs and sneezes.  I sneeze and cough all the time due to allergies and I don't feel anything when I do.  I can't imagine having to stifle that.  I read that you can't have natural childbirth due to the straining... I just got married in October and am currently trying to conceive.  

In other words, this board has terrified me that this is just the beginning of a horrible path I have to go down.  And it seems as thought things just get worse, no one gets much better.

So, my long winded point is, are there different levels of severity with this?  And maybe I just have a less severe case?  Or is this something that will just get progressively worse for me?



8 Responses
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555358 tn?1292532061
It sounds like you might have a spinal fluid blockage - Syringomyelia (seer-ing-o-my-all-ya). Ask your neurosurgeon about that. In a lot of ways a syrinx is worse than the Chiari - or at least can cause a quicker onset of problems.

As above mentioned, everyone with Chiari and related symptoms can be different. At the top of this page is a basic primer, read that and it may help to answer the basic questions.

Chiari is not generally considered Life-Threatening, but it usually is Life-Altering. A little fore-knowledge goes a long way. Avoiding overly strenious activities like natural Childbirth, extreme weightlifting etc and you might not wanna do a lot of full contact sports - football, boxing, or things like skydiving. :)
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Keep in mind, I had symptoms since I was a young child, and I was 48 when I was finally dx'd, and at the point I could not take it ne longer...we all progress at diff  stages , rates etc....and what u do and how u do them can affect how long u may stay in this current state.

Be mindful if u have a fall, or involved in a MVA or going to give birth how  u proceed and follow up or do not may affect u.

U have the education to help prevent situations that may trigger symptoms to flare....many of us were not that lucky.

"selma"
Helpful - 0
Avatar universal
"unfortunately that is not the case for everyone."

that exactly answers my question, thank -you....... i was reading everything thinking that i was on a downward spiral and at any minute one wrong movement or sneeze was going to set everything off like dominos.  I seem to just be lucky for the time being and have a very very mild case of it.  He said it was ever so slight which is why I don't get any of the back pain/shoulder pain/neck pain.  
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
A good NS will not do surgery unless the benefits out weight the risks...and there r risks as with ne major surgery...

And yes, it is possible for u to have chiari and go yrs with out need for the intervention of surgery....unfortunately that is not the case for everyone...and many times people rush into surgery thinking it is a cure and those r the cases u hear about more times than not.

Surgery is needed by many of us to restore CSF flow when it is blocked....otherwise we can face perm nerve damage...so, if u do not have that risk, no sense taking one.

I would consider options for childbirth to help prevent strain which might trigger symptoms to worsen....what ever can work to give u as much time as possible and not have surgery the better.

BTW I had natural childbirth with an epidural ...I did not know I had chiari at the time...I had a CSF leak, a awful HA and was in the hospital for 5 days as a result....had we taken other precautions who knows...just a thought.

Good luck to u and do keep us posted : )

"selma"
Helpful - 0
Avatar universal
Thanks for all your responses.  I'll guess I'll just have to see what happens after my second MRI.  The first was just for my dizziness in general so we kind of stumbled upon this.  However, I highly doubt at this point in my life I would even consider surgery.  I can function absolutely fine.  My NS actually said he didn't think the Chiari was causing my dizziness, rather I was just having tension headaches, espeically since now the Klonopin has helped and almost taken away that symptom.  I have no other symptoms really.  He also, told me that as mentioned here, the surgery is not a cure or fix, so he's seen it actually make things worse than any better.  Either that or the surgery just has no impact and symptoms are the same as before.  If I function well, surgery seems pretty excessive.  I guess I'll just wait and see.
Helpful - 0
1422823 tn?1287679280
I had 4 natural childbirths and was diagnosed before I had my first child.Had I knew then what I do now I woulD have opted for c-section. There is a special epidural they can use on chiari patients if you do decide to go the natural route.  
Helpful - 0
999891 tn?1407276076
Hi & welcome :)

Many people live out their lives with CM and without even knowing they have it. The MRI era has made Diagnoses much easer. It is better to know before child berth or having other surgery's or other things that may make your symptoms progress.

When your symptoms are mild it is best to watch and see if things progress and if they do then you can decide what treatment is best for you. In the mean time try and get a NS who deals with CM and has a good success rate, if things do get worse you can get treatment without too much delay.

Ray
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome.....

Yes, u can have a diff level of symptoms than someone else....and that can change, as chiari is a condition that can flare and cycles it's symptoms.When I first got on the forum I felt my symptoms were mild compared to what others were complaining of, but as time went on, my symptoms had increased...I began having drop attacks....

For someone with chiari it is advised to have a C-section instead of a natural childbirth to avoid that strain may help prevent or prolong the onset of other symptoms.

U do need to have testing done to see how the chiari is affecting u and if u might have other related conditions....if u do not have a syrinx, or a CSF blockage ur drs may choose to monitor u....

Many with chiari have surgery to help slow the progression, surgery is not a cure or a fix.

No one can say for sure , ur symptoms may remain the same for yrs b4 u see the symptoms get worse, so try to avoid some of the things that may cause strain and it may help.

Hope this was helpful : )

"selma"
Helpful - 0
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