Newly diagnosed - from New Zealand

[kiwijo]

Firstly, what an absolutely amazing site!  For years I thought I was the only person who suffered from those awful headaches.  It feels like a secret club.    It wasn't until I started googling 6 months ago that I diagnosed myself with Chiari, and got myself referred to be seen about it.  Last week (6 months later) I finally got an MRI confirming it.    I have now been referred to a Neurosurgeon, who hopefully can pronounce it as the Neurologist couldn't.  I see from reading some of the forums that this quite common!

Funnily, in those 6 months my headaches stopped, to be replaced by numb hands.  I figured that the numb hands was posture related and have been seing a physio for it (probably not the best thing to do).

From reading other peoples posts I feel I have got off very lightly.  I can cope with numb hands and I am so glad I no longer get those excrutiating headaches.      Anyway, what I wanted to ask from all you experienced people out there.  Do you think I have been pretty lucky or do you think my headaches will come back?  Do they come and go?  Will the Chiari progress and will I get other symptoms?    Sorry for the barrage of questions, but I think the Neurosurgeon I saw yesterday had just graduated and just read about it in a text book that day.  He wasn't really able to answer any of my questions and promptly referred me to the NS.  He did perform a neurolgical exam which he said was fine.

I look forward to hearing from you.

Jo

[kiwijo]

itsy1 I can definately relate to the carseats, when I was getting the headaches.  You've made me think about the nursing and weaning.  I think it is when I weaned my youngest that the headaches stopped.  Could be coincidental for me.     Interesting about the brain fog too.  I am notorious for forgetting things and not being able to find the right word to say. I've always blamed it on mummy brain, and was wondering how much longer I could use that for.
Thanks for your reply.
Jo

[itsy1]

I'm glad your headaches have settled down.  I hope they stay away.

Selma and jenshead are wise.

Sleep plays a big part in some of my symptoms.  In fact having 2 young children myself, I had to have a neuro who was experienced in CM tell me that I didn't have "mommy brain" that my chronic forgetfulness was a symptom of my Chiari called "brain fog".

For what it's worth, my Chiari symptoms also reacted to pregnancy, nursing, and weaning.  Believe it or not, nursing helped my headaches.  After each child weaned I'd go back to "normal".  I also had to learn creative ways of getting my kids in and out of carseats.

I wish you the best.  I hope my post helped a little.

[selmaS]

  Jo...sleep is everything...trust me...no sleep will cause u more issues regardless of a dx......sleep issues r a big issue for chiarians...as sleep apnea is a major problem for so many.

Just last night I was on a monitor to see how much oxygen is getting in my bloodstream while I sleep...next step may be a sleep study.....this is very important.

   "selma"

[kiwijo]

Many thanks to you both for your replies.  I don't think that I have any of the other things you  mentioned Selma.  I presume they would've been abel to tell me that.  Hopefully when I see the Neurosurgeon he will be able to tell me more.  I have another MRI booked of the spine.  the last one was only my head.

I don't think anything changed drastically in my lifestyle when the headaches sleep, except maybe more sleep.  My baby turned one and started sleeping a whole lot better.  I have 5, 3 and 1 year old.  Not sure if sleep, or broken sleep affects things at all.    

Thanks again for your replies.  It's interesting reading through the other forums too.

Jo

[jenshead]

Regarding your headaches disappearing, how much did you modify your lifestyle when you had the headaches?  It's very possible you removed the headache trigger from your regular activities without even knowing it.  Maybe you used to run but now you bike.  Or maybe something more subtle such as not bending over anymore.

However your headaches went away, congratulations...I would consider that lucky! But only from a symptoms perspective, you should still get checked out like you plan to...don't want to ignore a possible problem.

[selmaS]

  Hi and welcome to the Chiari forum.

Not that I hope ur  absence of pain right now is a good indication, it may not be,....Chiari symptoms do cycle...so it is not uncommon for them to come and go.

But more importantly u must keep in mind that this is all neurological....and a bcuz it is  it is possible to continue to have damaging issues but not feel it due to nerve impingement.
All of our nerves do not work properly...so the indication of pain may not be either.,....so press for more answers and testing.

  It is possible that u will get more symptoms, and it is also possible that u will stay just as u r.....there is no way to know for sure, this is y testing is so important to see just how the chiari is impacting ur overall health. DO u have a CSF obstruction and overcrowding...a syrinx, tethered cord , Ehlers-Danlos,intra cranial hypertension etc....

  U will need a chiari specialist and u can use the search this community to find more info  for ur area as we have had members from NZ b4, but we do not have a list of Drs for there yet : )

    "selma"