I have Chiari malformation and associated symptoms (?)...Dr. brushed it off...what to do?

[Moonpye]

Hi all,



I am a 26 year old female.  I teach at a community college and have no health insurance.  About three weeks ago, I started experiencing feelings of weakness in my right leg, only in the evenings.  About two weeks ago, I woke up and the entire right side of my body felt weak--leg, hand, arm, and face (including my right eye, which FEELS droopy, but is not).   I knew it wasn't muscular weakness, because I could still stand on one leg, lift weights, do yoga, etc.  A few mornings ago, I began experiencing numbness on the right side of my face, to the point that speaking became difficult.  I went to the ER and they did blood work (all normal) and an MRI, to rule out stroke and, possibly, MS.  The doctor came and told me that everything looked fine, but that I had a Chiari malformation.  He then told me it was nothing to worry about and NOT the cause of my symptoms.  He thought perhaps some compressed nerves were to blame for my arm/leg symptoms, and that my face was going numb due to anxiety.  


I came home and looked it up and was shocked to find that a vast majority of my symptoms are present with Chiari malformation!  

I have been prone to terrible headaches for much of my life and have always chalked it up to stress/hormones (maybe it still is...I don't know).  I have also had an odd "clicking" that felt as though it were coming from inside my skull when I ran/jumped.  I don't know if that has to do with anything, but it always unnerved me a bit.



I guess I'm wondering...can Chiari symptoms present on only one side of the body??  My left side is completely fine.  The weak feelings on the right side are going away a little, but my right eye feels as though someone is standing behind it trying to push it out of my skull.  I'm also experiencing sensitivity to light and sound.  My mother thinks it's a sinus infection (she had one that made her face go numb and messed up her eyesight) and told me to take some Mucinex D.  I'm growing increasingly certain that my chairi malformation has something to do with this.  



Was my doctor wrong to brush this off?  Should I find a new doctor or go ahead an follow up with the old one?  I would really like to try to find myself some affordable health insurance before a firm diagnosis is made.  If the only treatment option really is surgery...I...I just can't imagine paying for it.  I work two part time jobs and my teaching job, and I'm still considered "poverty level."  Since the Dr. technically didn't find anything wrong with me, I can get insurance before seeking help, right?

I live in a smaller town with a fairly crappy hospital, but I'm rather close to Vanderbilt Medical Center.  Would it be wiser to go there?


I feel very alone and frightened right now.  Will chiari kill me?  Will the symptoms rapidly get so bad that I lose motor function or my eyesight?  I'm terrified and poor and I feel a little angry that the doctor didn't even entertain this as a possibility.  



Does anyone have any advice as to what I should do now?

[LG0526]

Hi Kelsey,

I am the same age as you and have thought all the same things that you have.  First I will say that we are all here and will help out as much as we can.  The best advice I can give it just figure out what you need to do to get health insurance (whether it be finding another job or what).  I too have a lot of education and maybe just for the time being, find a job just for the insurance (I know - easier said than done).  Most have a 3 month waiting period, but at least you know that it is coming.  As for MS, i have also been told that doctors think I might have MS.  MS is is tricky because usually you have to have had 3 "episodes" and evidence on an MRI before it is a formal diagnosis.  I have found that if you have tests and mris and even surgery and can't pay them off in full, write them a check for what you can each month.  They CAN'T turn you over to collections if you are paying something.  I have been sick for almost a year.  It took 8 months to figure out what was wrong with me.  I had many docs tell me that nothing was wrong with me, I was crazy, etc.  DO NOT LET THAT STOP YOU.  It is so hard to hear that, but you know your body and when something is wrong you know it.  I knew something was wrong and did not stop until they found it.  I was also told that Chiari would not cause all my symptoms, but just saw Dr. Oro in Colorado and he says that Chiari IS the cause of all my problems and well as one other condition that I have.  I am having neck surgery and then the decompression brain surgery.  I just want to go back to all the docs that said there was nothing wrong and that it was in my head and show them that indeed it IS in my head.  A large herniated brain...  That is the whole problem... it is in my head because it is a brain problem and that they brushed me off and there is something very wrong with me.  Don't give up.  We all understand how you feel.  We have been there.  I just lost my job and so my husband and I are struggling, but we will get through it.  Things are already looking up because I have my dxs and surgery scheduled.  This group is really great and encouraging and I know we all want to help out and get things looking up for you.


LG

[Shane99]

Hello.

I'm from Nashville. I recommend Dr. Carl Hampf at Baptist. He performed my surgery, as well as two other people on these forums - sissy and lovemygirls (lovemygirls is also a teacher).

I can also recommend a PCP if you're interested.

[chadry]

Hi,
I can't help out too much with all that is going on with you but I can tell you this. You will find a way to get done what is needed. If you have a little faith all things will be worked out. Things somehow  have a way of coming up and being worked out.
I know that when my daughter was diagnosed the NS said it is nothing so do not worry about it, that is not what is causing her headaches and dizzy spells. So like you I went home and researched it and freaked out. I was in a state of fear for days on end. I could not believe what i was reading and how they brushed this off.
So you are not alone at all in feeling scared. I am sure everyone on this board can relate to your feelings about this. It is normal to feel this way so please do not beat yourself about it. I do know from experience that anxiety can play all kinds of tricks on you. Even if you do not feel you are anxious somewhere in the back of your mind you are and it plays on you. It can make all kinds of weird feelings too.
Have you tried state aid for the insurance. You need to go to the state office and tell them you need insurance. I know here in my state if you have a medical condition that you can not pay to get treated they can help you out with insurance. Not sure how it all works but look into it.
People that do not know about this condition have no idea what is going on. It is not like you something visible to see like a broken leg or such. It is not something that gets talked about on the news like MS or diabetes so people just do not understand it.
Please take care of yourself and come back here to let it out. Everyone here will listen and try to give you help and advice. We all know the feelings that you are going through.
Take care
Chadry

[Moonpye]

Thanks, everyone, for your welcomes.  I wonder if it really is the Chiari causing my current symptoms?  Like I said, I have a history of headaches, but they're usually based at the sides of my head--not at the top of my spine, nor are they usually so debilitating that I can't function.  Is this a symptom one MUST have in order to be experiencing Chiari difficulties?  

I really, really wish I could get some insurance and get this straightened out.  I can't focus on anything else...

It's hard to think that this morning I was excited about baking a cake and now I'm sitting here weeping because I'm broke with a potentially serious medical problem.  

I'm really beating myself up for going to the ER like that on Thursday.  If I hadn't, I could have been approved for insurance ASAP and gotten myself sorted out.  

I don't have a PCP, so the only people that have the reports are at the hospital.  I was seen by an ER doc and a neurologist.  I'm supposed to follow up with the neurologist--I'm thinking of calling him tomorrow and asking him to have a look at my MRI images.  I'm also going to go to the hospital and get copies of all of my records and whatnot.  

All I know for certain is that I'm scared and I have no clue what's wrong with me.  Maybe it's the Chiari.  Maybe it's MS.  Maybe it really is a pinched nerve and a sinus infection.  Maybe...maybe...maybe.  

I feel particularly sorry for myself because I'm a Master's-degree-holding young person who works her butt off teaching and is held right below full-time status because the school can't afford to make me full time (read: give me insurance).  I know I shouldn't feel sorry for myself because it's bad for my health and the sanity of those around me...but...I somehow feel like this is my fault.  I should have gotten a better job.  I shouldn't have gone to the hospital.  Etc.

I don't want to be Debbie Downer, but I feel like no one around here is listening to me.  I'm so thankful I found you all, even if my problem isn't Chiari-related.

-Kelsie

[selmaS]

Hi and welcome!!

I see u have had the same brush off that we all have experienced.It is not u it is the drs ....they do not specilaize in chiari and r not up on it.They get very little intro in med school and the info is very outdated.

U need a chiari specialist...there r a few good ones out there.We have a thread here with names on it....please research ne dr u may consider.Meet them and ask ?'s...u need the right chiari dr and one that u feel comfortable with as well.

There is no cure for chiari....everyone is diff.The longer u wait u can risk perm damage.

U need to know if u have a CSF leak....a syrinx...or tethered cord.

Do u know ur herniation?...did u get copies of the MRI and the study reports...if not u can request them. As to being affected on one side...ur herniation can occur on one side, depending on which side and how far...it is possible to affect one side with symptoms.

Should u get insurance first?.....did ur PCP get the reports?....if not go for it.....but be prepared, it may come up as pre-exsisting.....not sure how that  will affect u.

I would deff check into the larger hosp and see if they have a chiari specilaist...I think I remember seeing that Hosp onour list...not sure tho, please check.

I hope to see u on the boards..it's a great place for info and support!

Good luck
Godspeed
"selma"

[edeneyes80]

Hun,
You can't think of that or let that consume or worry you until you find out the facts about ur case.

Go to conqurechiari.org and chiariinstitute.com and do a little research and learn a little on the condition.
Everyone is different and yes some people don't get better after surgery, BUT some DO!  That is why you have to find a good NS that specializes in Chiari. And follow your gut!

[Moonpye]

Does Chiari kill people even if the surgery is successful?

[edeneyes80]

Hello,

Well you just described all of my symptoms in your 1st paragraph when I had a TIA (transient Ischmic attack) also known as a mini stroke, the only difference between that and a full blown stroke is that there is no permanent damage and usually your symtoms go away within 24 hours.  
After the first TIA I had with the same symptoms you had, I sought out another NS and he reviewed my MRI's and ordered more. My chiari went from borderline to 3mm in 2 months.  
What you should do, is yes seek health ins, if you are poverty level there should be some sort of state aid, medicaid, something according to your income that should be afforadable to you. Second get your butt to another NS, a specialist in Chiari, and get another opinion.  Where do you live? What state?
This is a widely undiagnosed condition and unfortuantly not a lot of NS are educated enough on Chiari.
You need to know also that there is no cure for Chiari, there is only surgery to help slow the progress of the symptoms as well as medication to help with the pain.  Everyone is different, there symptoms are different, they progress differently, no one case is EXACTLY the same.  So don't get too upset before you know your own personal situation.
I know what you are going through and I am sorry, I know your pain and your worry,  Please keep in touch and let me know your progress and If I can help in anyway, i'm just an email away!

Tricia