YouTube......

[lu7997]

I happened to be playing around and found chiari on YouTube.   There are soo many videos. And than fuethur into my investigation I found most med students in basic med schools have to do presentations on chiari and related conditions now.    I thought what a huge victory this might be for all of us and for future suffers with med schools no longer throwing a few paragraphs our way.  


Go to YouTube and type in chiari. There are pages of videos

[n40066]

lol!  i was excited when i first looked too.  in the past year alone, awareness has grown considerably!!  i watched a video of an actual decompression surgery being done before i had mine...it was fascinating!

[niki3350]

Yes have looked on you tube myself, lots to be seen, if I google chiari it comes up with u tube clips, at first it frightened me senseless as when my NL wrote cm on a piece of paper back in August when my swelling was detected and sent me away to have further tests, it then lead me to this site.

Im so thankful it did, im not scared anymore, just pleased to have people to relate too and it has settled my mind, as at time I thought I was going crazy, as nobody was taking me seriously.

Niki x x

[MikeO31]

Unfortunately that happens to many of us, if doctors can't find an exact source of the issue (and are unfimiliar with Chiari or do not have all the facts on it) they try to just write you off and say its all in your head, when I was first diagnosed all those years ago, for a while I actually started to believe that it truly was all in my head and that I just must be wrong about the whole thing.  However sites like this forum are good, because it confirms that you are not alone, there are other people out there going through what you are going through and will stand by you until you are able to find someone who does know what is happening and can explain it to you

[niki3350]

Thanx Honey for your words of encouragment, I am again at the moment being led to believe it is all in my mind, its just awfull and now im beginning to doubt myself all over again.

My hubbie is outraged and is coming with me to next appointment, he says enough is enough, they dont live with you I do and I see it daily.  Bless him, he trying hard to keep my spirits up but after 3 yrs im nearly ready to chuck the towel in.  Put post on title, boxing gloves may be needed, sort of explains why im ready to give up.

I no 100% im not making symptoms up but will they ever believe me.........

Take care
Niki x x

[lu7997]

Niki I hear you 100%.  It is rough and than u get referred to another doctor and I can remember getting excited that this was it this was the doctor to give me answers and than nothing. He would just diagnos me with something off and untelated and not true and I would be right back where I started. Upset confused and completly down on myself.  

I did eventually find a good doctor that did understand and is helping.  And even though my diagnosis is mild chiari at least it finally fits.   Hey I will take what I can get and he is doing the surgery (even though my primary keeps calling it an elective surgery).


Good luck Niki and please don't give up it isn't in your head and the answers are out there. U will find yours as well

~Angela~

[redkim]

How would a hospital even authorize "elective BRAIN surgery".  Your PCP is dumb.  

[LisaM46]

That's a good one - "elective brain surgery"!!!  Yup.  And CSF flow studies are "experimental".  Do we have a thread listing all of the doozies we've heard?

They're so cute when they're stupid.

[lu7997]

The best is "asympomatic chairi".  Yeap I have no symptoms that is why I am here.......  My one replay from the NL read I was suffering from post tramatic stressed induced migraines with an incidental asymtpomatic Chiari............


I didn't even grace him with a formal resignation from his care.  

[niki3350]

Thank you Honey for your kind and understanding comments,  I just no when I see Nl on 22nd Nov im going to hit another brick wall.

Its already started with a letter recieved yesterday, stated developmental and you were born with it!!!!!

Have found 3 cm NS not to far away so after 22nd am asking for referral over here you cant be under to specialist for same condition at same time, so they can discharge me and will go see someone that has chiari understanding.

I am already searching internet for another cause of my symptoms as I 100% no they are happening.

Pray Im lucky and get answers soon.

Hugs
niki x x