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15486591 tn?1440886739

18m life ruined chiari?

my insurace has paid over $250,000 worth of medical bills over the past 4 years mainly concerning 1 troublesome symptom no teenager should ever have.

DYSPHAGIA. SEVERE.

I cough for ~6 hours a day... i can't imagine a day where im not pushed to my physical limits. I've been fasting for over a year. I get maybe 900 calories a day.
No ones considering a feeding tube.
I live alone.
I work jobs that aren't legal or illegal online.
I Make over 150K/yr.
I can't move.
barely^

so yea my 4 years of medical bills looks something like
150k ER VISITS
20k SCOPES ENT
20k GI ENDOCOPE/BARIUM

at least 10k paid out  to homosexual quacks (psychiatrists) they can ******* burn for all i care.


IM BORDERLINE CHIARI what does this mean. IF you help me expect help in return.
according to my mri's.

If its possible to post results so all you forum people with more experience than radiologists can give me accurate measurements let me know.
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620923 tn?1452915648
COMMUNITY LEADER

I found this very inspirational woman on FB and thought it might help you....

https://www.************/jordansbeautifullife/videos/614283205341506/?fref=nf
Helpful - 0
7489440 tn?1442008376
Keep your head up. My insurance paid a lot out for a lot of Er visits along with seeing a therapist. It seemed like every week I was in an Emergency Room for a headache since I was 15. I have just turned 28 and I found out what exactly was causing headaches when I was 26. So you can imagine just how much was spent.

Even though I live in a small town I do have access to a great Chiari Doctor. As soon as I learned I had this condition I found this group and boy did it prove to be helpful. Per their advice I found a wonderful Doctor who has actually got to know me as a person instead of just another dollar sign. He understands me and my fears of surgery and many have turned me away because I told them I wasn't going on more than 5 meds during the whole course of me being a patient with them. So I am thankful that this forum has lead me to find a doctor who truly cares and understands his patients.

Many also have said it was my hormones that caused my headaches. But come on how often have they heard someone tell them that they have a head ache that last 3 weeks straight? No end in sight for them. No matter how much medication I was taking. I was taking 5 bottles of Excedrin Tension Headache in one month. I couldn't deal with it. I have severe depression from this all as well as suffer from anxiety.

We all face the run around unless we know what we are dealing with from the gate. They tried to give me the run around or try to give big words that they thought I didn't know. But I was armed with my knowledge of taking Radiology Classes as well as information from this site. They couldn't suck me up a silly straw. Just me well informed on your condition and understand what you need answers to.

You are not alone. Best of luck to you.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many of us have been pushed off and told we had depression and anxiety issues, so you are not alone there...we have dubbed this treatment "The Royal Chiari Runaround" ...sent from Dr to Dr and no real answers and then when Chiari is found we are told that is not the cause....very frustrating to say the least.

There is a true Chiari specialist in that same area.....and I would suggest getting a few opinions as not ALL Drs are Chiari specialists..just like you would not take a foreign car to any mechanic for a transmission problem...you want a foreign car transmission specialist.....so, make sure your Dr is well informed and experienced not only with Chiari but ALL related conditions

BTW- I know we do not have anxiety issues being the root of our issues, but with Chiari it can cause anxiety issues to flare...just as with depression....so, it is possible to have it...for reasons like the Drs do not listen and we are not getting answers and still do not feel well.

The term borderline can be subjective....who determines when Chiari is borderline? Chiari is the malformation of the skull....but many Drs judge whether or not we have Chiari or how bad it is on how long the herniation is instead of how it is affecting our health and life.....

You can post your MRI pics in your profile page...a number of us can take a look....keep in mind....what needs to be done next is a full spine MRI as well as a CINE MRI to see if there is an obstruction of CSF or any other conditions present. .

  I hope this is helpful and just know you are not alone.
Helpful - 0
15486591 tn?1440886739
im seeing the mayo clinic in jacksonville fl currently.
Helpful - 0
15486591 tn?1440886739
if this gets taken down ill just repost it. i could care less.
Helpful - 0
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