Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[selmaS]

  In the Health Pages we  do have a list for the UK....the list is by the Ann Conroy Trust....I would suggest research the Drs on the list, but they are supposed to be Chiari specialists....I know nothing of them, so educate urself and visit a few and go with ur gut as u will know which  is right for u.

I meant to get her an appointment as well....I know what she is saying as I feel my dad has it and he said exactly what ur mom said...why bother at my age this is it....ugh...it can help understand how it gets passed along....oh well....

Who won't go mad with the attitudes Drs have along with the bad  bedside manor...ugh....they drive us there.

[KeyRee]

I am in UK so I get what I get given here . I have been searching on the net for someone in my county but there is only one . I will see how things progress . SelmaS I am so sorry you have had this terrible disease for all of your life ... at least I can say I had a normal life up until 10 years ago . Glad that the surgery helped you , Im not sure what I would do if they offered me surgery here . Like you said you need someone well experienced with Chiari .
Finding the right doctor is rather difficult here and if they were treatingme they certainly would not take the time to look at my mother too . She has resigned herself to the fact that ' this is it ' and dosn't wish to persue any help as most of the doctors and specialists , especially a certain neurologist , mad her feel like she was going mad .

[selmaS]

It is very possible a syrinx also known as Syringomyelia is a related condition to Chiari these form when the CSF flow is obstructed...this can cause perm nerve damage....

The biggest problem is finding a Dr well experienced with Chiari.....

I have had symptoms my whole life, and I had surgery 4 yrs ago ....I do have other related conditions so I still have symptoms and issues but I am better post op then I was b4.

Good to know u found something that helps...but finding the right Dr is key.....u should take ur mom along with u so she can get checked too.

[KeyRee]

CSF-filled tubular cyst ... this certainly sounds like what my mother was told she had . I wonder if she does have Chiari ???? We are both quite similar in build & looks etc so perhaps it is genetic in my case. She has pain and numbness in her feet and legs which is now starting in her hands . Mine is on my scalp and in my hands . Her head bobs far more than mine . We look like a pair of Russian dolls with our head bobbing when we watch tv . We both react badly to loud noise as well ... flaying out our arms like a baby when startled . The thing I hate the most is the face pain ;  I did read somewhere that if you have face pain try sitting down and putting your head between your legs [ like you are told to do when you are fainting ] this certainly helped me but lets face it how long can one stay in this position . It does give a brief respite though .

[KeyRee]

Thank you so much for explaining it .. you should have seen me doing it .. I was all fingers and thumbs ;)
So how long have you been suffering SelmaS ? Mine has been about ten years .. but I'm not sure if I have inherited mine from my mother as she had a brain scan due to her legs and feet having neuropathy .. she was told twice she might have a tumour but then twice they have said no she didn't . Then she was told she probably had MS but she dosn't have the symptoms of MS , more like Chiari really .  Some of her symptoms are very similar to mine and she has some extra problems which are on the other lists that people on here have provided .The docs have done nothing about it . She is just left to deal with the pain . Not that there is much one can do about neuropathy ; however mine might be to do with years of domestic violence I encountered or perhaps a combination of the both . Well I hope all will be revealed when I have my MRI . Again many thanks for replying to me ... it makes me feel I am not alone x

[selmaS]

  It is not uncommon for us chiarians to have GI issues like GERD so ur hiccups and burps  are something so many of us deal with too.

For EDS, I also felt like u do that I did not meet the criteria, but once eval-ed by the Drs I do have it so make sure u do get a Dr to review u for it,

A retroflexed Odontoid is the reversing of the position of the odontoid bone which helps hold up the skull....it has a natural curve to it just as the cervical and lumbar spine do....however, this is in a confined space and it is the same space that the cerebral tonsils herniate into making the space that much more crowded, so u may be told u have overcrowding.

To see how this affects not only the space but ur brain stem take the thumb and pointer finger of ur right hand and create a circle...with the first knuckles meeting.

Now take the pointer finger of the left hand and pointing toward u, slip it from the bottom up into the center of the circle....the finger should have a curve to it as it points toward u, and u will stop at the first knuckle resting on the top of ur other pointer finger...look at the space around this finger poking  up thru here...there is some ....imagine a cerebral tonsil in there too....u have less space...well take the pointer finger and slowly turn it so it is no longer pointing at u, see how it closes up that space u had?

The turned finger is a retroflexed odontoid and this is how it affects u....BTW- when it turns it points toward the brain stem and also compresses it....

I hope u can understand that....if not let me know.