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10322227 tn?1409321510

What is going on with me please answer?

So I am 18 years old and I just started college. I was diagnosed with Chiari Malformation when I was a kid, my dad has it too. Over the span of my life I really didnt see any symptoms so I stopped getting it checked up on. but over the past year I have had two stiff necks and two massive headaches. The first stiff neck happened Oct. of 13 and it was my senior year of highschool and I woke up in the middle of the night because I had slept on it wrong and I turned my head and heard a distinct cracking poping sound at least 4 times in a row I felt this pain tense up in my muscles and i couldn't move my head either way without the most intense pain. I could sit up or move really and so I had to scream for my parents for about an hour before they woke up and came to my aid. They said it was just a stiff neck and nothing to worry about that it would get better but it took at least a week or two for it to get better. Then it happened again recently and this time it was different i was laying flat in my bed and only lifted my neck to look at my computer. Then I heard this terrible crackling kind of hissing poping sound and i felt it go through my neck and felt the pain seep in and this time i could turn my head to one side but not the other and it hurt extremely bad again. While I was recovering I kept hearing this crackling and especially when i lifted my arms. Its been at least two or three weeks since that and I am still hearing the crackling and hissing it sounds like sand or bones grinding together or rice crispies and I hear it all the time and it is scaring me. I am also starting to feel dizzy when I am laying down and it was hard to focus this morning when I woke up. Reading all of these posts about the surgery is freaking me out. I don't want to be paralyzed in any way. My dream job was to be a speech pathologist and help people communicate and if I can't do that because my speech is affected by the surgery than I am going to be super upset about that. I know I will learn to get over that though but I am scared I'm going to see a neurologist its not a constant crackling its only in some situations sometimes not even when i move my neck sometimes its when i move my neck or back or arms or anything though. PLEASE PLEASE SOMEONE telll me I am going to be ok. I don't want to die ( I know that is dramatic but its a stronger possibility now) im scared
5 Responses
620923 tn?1452915648
COMMUNITY LEADER

  We are all different in how our Chiari affects us....so you may not have that issue....so no sense in getting upset over something that has yet to happen.

No worries, dramatic posts are very common here and ok, as it allows you to vent how you feel as oppose to holding it all in...and that is the purpose of this forum.

Just be sure to research the Dr and see a few b4 you decide on one and if a Dr says he can cure or fix you RUN !! Chiari has no cure, and is life altering, but you can get some relief and have a good life despite it....

The thing is finding the right Dr for you....and keep in mind you may have to travel to find one...I went out of state and no regrets I would do it all over again....

Hang in there and ask as many questions as you need and vent as much as you need to too , we ALL understand <3
7489440 tn?1442008376
Hello and welcome. Its OK to rant we are here to support one another.

The first thing you need to do is get a new MRI, as you said you had quit getting it checked. Then you might want to seek out a Chiari specialist. Not just a regular NS, as not all NS understands this ccompletely. There is a list of specialist on this sight. They are not endorsed or have not asked to be on this list. These drs have been seen by actual people that are apart of this community. Use it for research purposes. You may also want to research this condition, all related terms and conditions that are related to Chiari.

Once you do this you will want to get a Cine MRI as well as a spinal MRI, be tested for Pots, EDs, check your thyroid levels, sleep apnea, as well as other conditions to rule them out. Once you find a good specialist they will know what to do with these test.

Chiari is not a death sentence. Though some have died its not considered a death sentence. Surgery is only used to help restore the CSF flow. If your CSf is blocked they don't consider surgery an option unless it is affecting your day to day life.

I'm not a doctor but it sounds like what your describing is that your bones are grinding up against one another. Which could mean that you have lost the cartiledge that cushions your bones. This can be very painful as I have read. The cartiledge allows your bones to not come in contact with one another and allows them to slide over one another with out pain. I dont know if its related to Chiari but it could be related to Chiari. That's my opinion. Wait to see what selmas has to say. She might be able to help you out.

I wish you the best of luck in your journey. Please keep us updated on how you are doing.
10322227 tn?1409321510
Thank you so much this post reallly calmed me down. I will take your advice for sure and thank you again. I feel alot better knowing I have support here.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

We all have had our Chiari our entire life...some are aware something is wrong, but not sure what, and others do not notice anything at all ...and that is bcuz many of our symptoms appear "normal" to us....as we have them all the time....so we may have had them all along, but sometimes we do not take notice until they flare to the point yours has.....

This can be very scary and many newbies do post  what they feel a dramatic thread....but it is very typical....

Not sure why you feel your speech will be affected from the surgery itself...most surgery set backs can be tracked down to an underlying related condition not found b4 surgery, for this reason I stress we need to test and rule out ALL related conditions b4 we consider surgery as they can affect how we feel and heal post op.....

I had surgery 5 yrs ago and my speech was not affected....

  The best thing you can do for your self is educate yourself on the related conditions and Drs...that way you will know if you have the right Dr for you....

We do have a list of Drs that is meant to be used to research only it is not a referral nor an endorsement of those on it....it is just a starting place for your research.

Know you are not alone <3
10322227 tn?1409321510
Thank you. Sorry for the dramatic post.  I was just really worried and I wasn't sure what was going on. I had seen someone say that it affected their speech in another post and I did not realize that that would be an underlying cause. I am going to see a doctor about this soon and again thank you so much for your advice and time. I will do some more research and try to better understand the conditions. I'll keep you guys updated.
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