What is my next step?

[Aries39]

Hello everyone,
I'm new to this website, I just joined the Chiari Malfornation because I had an MRI done on 2/3/10 on my
cervical spine and these were results....C2/3 level, there is a posterior annular disc bulge with indentation of
the ventral thecal sac. C3/4 level, there is a posterior annular disc bulge with indentation of the ventral sac.
C4/5 level, there is a posterior annular disc bulge with ventral cord abutment. C5/6 level, there is a posterior
central disc herniation with ventral cord abutment. C6/7 there is posterior annular disc bulge with indentation of the ventral thecal sac. Low lying cerebellar tonsils noted. AND other stuff.
I'm really concerned and afraid. What do I do next? My symptons are numbness, tingling, pain on legs,arms, headaches but not very often etc. I'm in New York and I hope that someone may have some recommendations.
I was afraid to sleep last nignt because I wasn't sure if this condition will kill me overnight. With prayer I was able to sleep for atleast 5 hours. Please someone tell me the truth of what I'm facing or headed. I don't know of anyone
that has this condition in New York. HELP!!!  Thank you

[shanmomof3]

Hi and welcome to our little family! First ... BREATHE! Chiari is not considered life threatening but is definately life altering. Because the report says low lying tonsils it probably means they are less than 5mm but that is still chiari. And you're in New York. Thats where the Chiari Institute is! Selma will be able to give you more info on them. Blessings, Shannon

[*Stormy*]

I sympathize...when I had all these weird symptoms and for 6 months I lived with it not knowing what it was!! There was many a night I spent the same way as you did b/c it is really scary!! The good news is, like Shannon said, it isn't life threatening but it does affect your life. I don't know anyone with this either where I live and I felt so alone until I found this forum. This is the best place to come to when you are scared, after seeing you are not alone you will realize that others are dealing with this and they will help you to too. I know it's easier said than done, but try to remain as calm as you can. I know with me as soon as I'd get worked up, my head would be a whirlwind!!

[selmaS]

Hi...make sure u find out if u r considered chiari...and if not y?....

I just posted in ur other thread and was confused by the symptoms...but here u do mention HA's ....can u tell us what type of HA u have?....do u get a HA when u strain?

Chiari is congenital and and many go yrs with no symptoms, while others have symptoms their whole lives , but never had a dx.

There is no cure for chiari , only treatment....u must look at ur quality of life now...and decide with a dr u trust what to do next. If it is found that u can get relief from treatment of ur disk issues u may want to start there...and monitor the chiari.

One step at a time and I must agree...u need to relax and breathe.

"selma"

[Aries39]

What do you mean HA? It's this for headaches. I have them on the back of my head.
They come and go. I do feel dizziness occassionally. Nausea occassionally.
Not hungry sometimes. Fatigue sometimes. No, I don't get headaches when I
strain. Yes, I do get relief on my C-Spine/ Lumbar spine at the physical therapist but it doesn't last all day. The physical therapist uses TENS machine and then provides heat. I will be careful however with the massage. She does it on my neck with a small machine. My activity level was pretty good before all this happened. I use to the gym 4-5 times a week. Working and going to school. But now, I get tired very easily and chores are done when I have good days (and these days they are not many). I understand from the forums this is from birth but after my accident (about a month and a half ago) everything went down hill.
It's a lot to deal with and I thank you for you for the support. Who do you recommend
to see hear in New York?

[selmaS]

Yes, HA is for headaches, u may want to look at the Health pages for the shorthand we use here...we tend to forget most newbies r not familiar with it.

I went to The Chiari Institute in Great Neck, which should be closer for u to go there, and there r other drs in Manhattan....Please see our specialist thread and research all drs to find one u r comfortable with.The list is not a suggestion of drs, but drs that members here have been to and liked.

Glad to welcome u aboard : )
"selma"

[cyberpyxi]

Aries,
it is very scary when we first hear that we have something wrong with our brains. We have all processed it differently, but in time (and usually, a short amount of time), we accept our conditions, and set out to learn everything we can about it.
About your sleeping, as long as you aren't having any bouts of random swelling (specifically located in the face or tongue area), you go right ahead and get yourself a great night's sleep. I lost my father to Chiari's, BUT, he was undiagnosed until afterwords, he had random swelling for months (angioedema, they said), including in his face, hands, feet, and finally, his tongue. He never went to the doctor's about it. His tongue was swollen for hours and he did not go to the hospital for it. This is what took him from us. I don't want to scare you, what happened to him was very rare, but it did come from his Chiari's. This is the only issue I know that I have to really watch for, other than the obvious (not driving if I'm having a bad vision day, careful on stairs when I'm having vertigo, no roller coasters, and the like) to protect myself physically from a fatal event.

I recommend to start researching the condition, doctors, and ask any and every question that comes to your mind. The group here is an amazing bunch. We don't know all of the answers to everything, but between the lot of us, you can learn a lot, vent your frustrations and fears, and make some fantastic friends that will understand what you are going through.

[Aries39]

Thank you so much for all the support. I really appreciate the advice.
This is the beginning of just dealing with it like you all said. AND it's not easy.
I also went to get some comfort at my sister's house and realized she has it too.
Now, we are going to go through this together. The difference is she's been dealing
with it for many years now and I never knew the name of it. I did informed her of this forum and how much I've learned in one day. She will look it over I HOPE!!! No, I don't have swollen tongue, hands or feet when I sleep. I will watch for that. Last night I kept reading website after website about Chiari being fatal, and death within 5 years etc.
So, after reading all that I freaked out I couldn't sleep. I was afraid to close my eyes
and that will be it. Thank God for this website and I hope tonight will be a better night.
I will keep everyone posted of my results. Now, I have to decide if I'll travel to Great Neck, Manhattan or just see neurologist's in my own borough of Staten Island, New York after my results.
Enjoy the rest of the Super Bowl everyone. Have a good-night.  

[selmaS]

Wow...that is good and bad all together...great u have someone to go thru this with and understands, but not so great that u both have to deal with this.


I hope ur sister decides to join us !!

Enjoy the last few minutes of this game : )

[rod44]

Hi, There is quiet a lot of contradictory information about Chiari on the web, it is trying to sort fact from fiction that makes life difficult. The criteria for a DX is problematic symptoms with a 5mm herniation however many here have the  problematic symptoms but a herniation of less than 5mm this is one of the reasons why you need to find a NS who has good experience of Chiari and it's related conditions, so many doctors dismiss people because they don't meet the text book criteria ....

Best of luck to you and your Sister, keep posting!....

Ray