Thank the Lord I have finally found this forum

[Regina41]

A MRI showed I had Chiari 1 Malformation...had a jerk of a doctor that said only surgery could fix it and my brain stem was streched..its 7mm and the headachs and pain control my life...im at my wits end...i will not go back to that doctore but I want the surgery...the pain is to much.
can someone plz tell me how or where I can go to get someone to listen to me..you tell the doctor you in pain and they think you want pain pills...wich im on vicodin and soma because all they say is we will treat the symtoms.
Im just sick and tired of being sick and tired.

thank you for your time...all advice is welcomed
Thank you
Regina Temples

[Regina41]

post this in the forum so they can help you...that how they help me....so sorry you are sick....as ive found out we are not alone...so listen to these nice people and they will give you the answers your looking for...blessings

[achyten108]

In September 7th, 2009, I had an MRI that reported as showing some mild tonsillar ectopia.. The cerebellar tonsils protruded through the foramen magnum for about 4.9mms.
There was no kinking of the CC junction and the forman magnum didn't look excessively ( this word bothered me) ,,,,,,,,as the neurologist says did not look excessively tight,,,,  to me it meant that it must've been tight....to say that...

For one thing, I did not like the Neurologist to begin with!  He said that this matter had been long standing,, and was of no clinical concern...

However,,,, I feel different,, with having numbness in my hands, my legs too and feel very weak, with lots of pain.. in fact I have to take narcotics to help with all the pains I have.
I also suffer from fibromyalgia, and have for 35 yrs or so..

About 2 months or so ago,, I awoke one morning paralized,,,, was alone, so layed there in horror....... but I did not go to the dr. to tell him this right away... as I don't have faith in my GP either. My GP, told me that I had a  tumor when I got these results, and never did bother to explain anything to me.. When I"d bring it up to him,, he'd act like i didn't say a  thing to him,,,, he was just so ignorant!!  I know he was sorry that he even said that I had a tumor....He most likely didn't know enough about my test result, to begin with...

So here it is March 2011,,, and am no smarter with this all.....although as I"ve read,, most seem to have headaches,, where I don't,,,, I only feel some pressure at the back of my neck...along with neck and shoulder pain...

I"ve had an MRI of my spine,, and it shows that I have mild levoconvex scoliosis.,,,,DDD at
L4 through S1 levels,,,,,bony lateral recess stenosis on the right in below the level of the exiting L5 nerve root,,,,,,grade 1 L5 spondylolisthesis with accompanying bilateral spondylolysis..................etc....whether these things have anything to do with Chiari 1 I don't know..............but could sure use some help with whether you think I should have another MRI or not, as I worry a lot.... so any help would be greatly appreciated.......

How wonderful it would be to have support from my husband,,but no, I never get any at all.
I envy the lady whose hubby is doing research for her,,,,,,,, she's soooooo lucky!!! Good for you!!! I forgot who it was,,,sorry.....

Hugs, achyten

[selmaS]

  Hi and welcome to the Chiari forum.

Pam did a great job offering info and the link to our drs thread...I did want to add....u mentioned ur brain stem is stretched....an elongated brain stem can indicate tethered cord...do make sure u r tested for this as well as other related chiari conditions....like  syringomyelia, Ehlers-Danlos, sleep apnea, DDD, bulging disks,and u want to know if u have a CSF obstruction and overcrowding. A good true chiari specialist will look to rule these out.

We r happy to have u join us too, but not happy with the reasons that bring u.

  "selma"

[pamk5]

Here you go!  This is meant as a place to start.  Please research any doc you decide to see to make sure they are right for you.  I personally see Dr Rosner in NC.  It does make a difference.  


http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

[Regina41]

Thank you so much...where may i find that link if i may ask?

[pamk5]

Hello and welcome!  We all know how that feels to have to deal with "jerk" doctors.  Most of us have been thru numerous NL's and NS's.  I cant even keep up with how many doctors I have seen.  I finally found a Chiari specialist and have my answers and am awaiting a surgery date now.  I recommend that you find a chiari specialist, gather your scans and go see them.  There is a list here in the forum of docs other members have seen and liked.  There is a difference between a NS that occasionally sees CM and a NS who devotes his practice to this disease.  There are other test that you will need to have done to rule out associated condtions.  

I hope that this helps... again welcome!