Confused

[Frances1011121415]

I was diagnosed two days ago with CTE. Was told i've had it since birth. I have felt less myself these last few years... Balance issues that seem to be worse the more tired I am, Dizziness even sitting down, a bulge on one of the discs in my back, numbness in my apendages that come and go (once I couldnt feel my big toe at all for well over six months), daily nausea similiar to what I experienced during pregnancy, and mood swings. I have no idea if this condition has anything to do with these symptoms. My MRI was for migraines, and they found enough abnormal white spots in my frontal lobe to conclude I have been suffering from them most or all of life. I'm confused because my neuroligist said the migraines were not related. She does want to monitor for lesians with annual MRI's but I have no idea what a lesian is. She said that mild dizziness would be my only side effect. After reading comments on here obviously she played it down. How do I find out what is being caused by this? If I had no symptoms a few yrs ago and now I do and they seem to be getting progressively worse, should I be concerned? If I have had it from birth does that mean my skull isnt shaped right or the right size? Making it more chiasi? When I say confused I mean it. I know this is alot and I am sorry. I have four small boys... I need to know that I will be able to care for them as I do now five years from now. Thanks for any information you can give me. I have been on the internet since I found out and this is the ONLY site ive found where people are talking about this with one another. Thanks again

[selmaS]

  No worries : )

[Frances1011121415]

A couple of these Dr's are just a few hours from me. Thanks so much for the info.

[selmaS]

  Here are some Drs names in your area...keep in mind this is not a referral nor an endorsement for those listed, this list was compiled by the members here of Drs they have been to, treated by and liked....it is here for you to use to research Drs.
Many of us find we need to travel to get to a Dr as there are not many Drs that are well informed and experience with Chiari and ALL related conditions.

NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076

MARYLAND

Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390


Dr Marcella Madera
Primary Location:
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD  21287
Building: Meyer
Room: 5-109
Phone: [phone]
Fax: [phone]
Appointment Phone: [phone]

GEORGIA

Dr. Princewill Ehirim
Lawrenceville,GA

Dr.  Vidyadhar Chitale
Marietta, GA

[selmaS]

  Hi and welcome to the Chiari forum

As with any thing, those that are unhappy about results make more noise then those that are happy..so you may see a lot about people not happy post op....but there are many of us that had good results.....

The key here is to have the right Dr.....find a true Chiari specialist and have testing for ALL related conditions...as it is these related conditions if not known at the time of surgery that can affect the outcome....my Drs did the testing and  made sure to take precautions for those related conditions I was DX with.

I know this is not an easy condition to deal with, and it is a bumpy journey....but know you are not alone <3

[Charli90p9]

I have recently found out (2 days ago) that I also have Chiari. I recieved a letter from my neurologist saying it had been found after he sent me for an MRI. I am still waiting for an appointment to see him to discuss it though, so I have had to google to find out what it was and what possible symptoms were. I originally went to the doctors thinking I had carpal tunnel the beginning of last year. I had low B12 levels (although not severe) so I had those injections. I have had nerve conduction tests that came back saying I was ok, but I was in almost constant pain. My doctor referred me to a neurologist who sent me for an MRI and more nerve tests.

I have started to have other problems and was starting to think it was all in my head. My partner would moan at me alot about me complaining about things, and my memory is almost non existent now! If I don't write something down straight away I forget. I feel crap about myself as I cannot do things mentally I could before. I can't even read a book as I have to read the same line loads before it goes in, and that is on a rare occasion that I dont have a headache or my eyes don't hurt. I have constant ringing in my ears which is driving me insane too.

I am relieved in a way to know that there is a reason for all of these things wrong with me, but I am still very nervous about the things I read. I have no majorly debilitating problems, yet, although I am really stubborn and refuse to let my pain stop me doing things. I will be much happier when I have spoken to my neurologist about it though, so he can hopefully answer any questions I have. I think I will be posting on here quite a bit from now on though :)

[selmaS]

  Oh trust me...the last 2 yrs b4 my Chiari DX I said the same thing...." I feel like I am going crazy and I'm not sure how much longer I could keep on going like I was ".

It is hard to get the support 1- bcuz this condition is invisible
2- it is an unknown invisible condition.

This will be a bumpy journey, but you are not alone <3

[Frances1011121415]

I'm sorry. Chiasi was a typo. Yes this helps. It helps to be able to be honest about how I feel physically without being told I'm a hypochondriac too. In my family you aren't aloud to feel bad unless you have cancer or over the age of fifty. The last few years I thought I was going crazy, or that everyone felt like I do but I was just a big baby who couldn't deal like others could. So glad I've found this community.

[selmaS]

  Hi and welcome to the Chiari forum.

First let me start with your DX...CTE  is a form of hydrocephalus....which is related to Chiari...then you stated chiasi, and I am not sure what you mean?

Dizziness and balance issues are not easy to deal with....and you should start by making sure you do not have low levels of vitamins and minerals as they can add to these symptoms....Vit B12, D ad magnesium and potassium should be looked at.

Lesions are damage due to severe head aches or part of demylation.....

Symptoms can change due to stress, a cold...or a ride in a car on a bumpy road...and we may not notice symptoms when we have something since birth as we consider how we feel to be "normal" and once they flare we sit up and take notice..and once we get more info on the condition we never heard of b4, do we start to connect the dots and realize we may have had symptoms far longer then we really knew.

With Chiari, the skull  bones fuse earlier then they should in utero and as we continue to grow the cerebellum area of the skull is too small to hold that part of the brain and it is forced out onto the spinal cord and brain stem....this herniation can obstruct CSF flow and cause it to build up and  create pressure ICP or hydrocephalus....with an obstruction to this flow we can also develop a syrinx also known as Syringomyelia....when left  untreated it can lead to perm nerve damage....

Headaches . migraines . and many other symptoms are related and until you find a true Chiari specialist you may feel like you are not being helped at all...they send us to Dr after Dr and they all ignore what is there....and tell us it is anxiety , depression etc....

I knew I had issues when I was in high school...never got answers.....I had my daughter and worked full time until I had a fall in '07 that  fall caused injuries that required surgery to fix...my surgeon had me go to a neurologist for answers to why I fell....I was 48 when I got my Chiari DX and 49 when I had surgery....

There are things you can do to help keep symptoms from flaring...save energy for special days...etc...

Not everyone with these conditions need surgery....BUT until you have more testing to know what all is going on and how it is affecting you and your overall health.

Hope this helps.