In a lot of pain with Arnold Chiari Malformation

[LG0526]

Hello.  I was diagnosed with Chiari Malformation with tonsils 5mm below the foramen magnum.  I was wondering what type of treatment should be considered.  I have been suffering with painful numbness and tingling, really bad headaches and bad neck pain/pain in back of head for a long time.  I was told that the herniation can be worse upon standing and I had my MRI laying down.  Would this make any difference?  This is really debilatating and nothing seems to help.  I don't know what to do.  
Should I consider surgery as an option?  thanks.

[WeddingJean]

It's almost 3:30 AM where I'm at, what time is it on your side of the world? Yes, being up this late is one of my Chiari issues...I'm either falling asleep at the most improper times or I can't sleep at all.

I am so glad you didn't have the LP...some of the research I have done says that spinal taps of any type can be very harmful to Chiari patients (oops, I almost said 'victims' because that's the way I feel some days).

It seems as though the dr's we like & are comfortable with end by not being knowledgeable enough about Chiari. And then because not enough dr's are experienced with Chiari, we end up w/dr's who have terrible bedside manners or are unapproachable (like the NS I saw earlier this wk). We need to be dealt with as a whole person, not just a mis-shapened skull w/our brains slipping out. Our symptoms effect our whole being, our lives & even those around us. Come on doc's get with the program!!!

If you already know you have a 5mm herniation, then I would suggest the MRI you ask for be a CINE-MRI, so the CSF flow can be looked at too. If the CSF is compromised enough it may make the next step easier for your dr & you to make.

There was a time when I thought that "being rare" was a good thing (my hubby & I collect antiques), but I'm not so sure anymore. LOL

The best advice I've gotten has been from these wonderful people here so continue to hang with us!! It was the same advice I got from my optomologist..."be your own advocate."   ***Jean

[toni31]

I know.  I spoze at the end of the day i am a big chicken with getting and LP after my last experience it has really frightened the **** out of me.  And the fact that NO one knew about chiari at all just blew me away. Im going to hunt around for a new NS my one is very old fashioned and stuck in his ways, and loosing weight cures everything, im sorry sunshine maybe sometimes but not in this case!! And whats worse is another NS came to see me in hospital whom was going to do the LP on me, she said straight up to me, toni I had no notes on you couldnt get hold of your NS and lucky you told me about your condition and I ordered CT (not that that showed anything) to see for myself she said, I would have gone ahead and done normal LP on you and may have ended up life threatening.  So I like her but once again she dosnt know anything about chiari and relyed on everything I told her.  I told them I wasnt a guinea pig lol.  And that I dont feel safe I would rather go home.  So from here I will see how I get on witnh the neuro surgeon and see what he has to say. At least she told me I was rare and complicated well i didnt need a diagnosis for that one ha ha. :)

[WeddingJean]

I know this is not easy, but you need to find a NS who specializes in Chiari. I am still searching myself as my dx was just made 5 wks ago. I have a PCP & have seen a NS who both are "passing the buck" back to a NL who feels I shouldn't be concerned & that my symptoms are not Chiari related. I have many of the 'classic' Chiari symptoms (with 10mm extension) & the NL ruled out MS 3 yrs ago, so I don't understand his attitude. He has me on Lyrica for the nerve pain, but no one has done anything else for my other symptoms. My husband told the NS he is worried about my tunnel vision & my driving & the NS just walked away. I copped an attitude w/the NS & asked him if I should wear a helmut to work so if I actually fell during one of my dizzy spells or when I'm off balance I wouldn't hurt myself & he just shrugged his shoulders. None of my med professionals want to deal w/my symptoms!!! I wish if they don't know enough about Chiari they would just admit it & I'll move on. Please try & locate a specialist so you can get the help you need. Good luck with your hunt & keep us posted.  ***Jean

[toni31]

Oh and also I cannot exercise now either because eveytime i get even a slight raised heartrate i end up in bed with a huge migraine for two days.  So this is why i refused to have Lumberpuncture because after being told to just go home ake meds and loose more weight, i wasnt going to go through the pain of having a week long aching stabbing migraine that follows, and chiari people are 10 times worse than anyone else after having these.

[toni31]

HI all,

I too am from australia.  I have a 5mm herniation..and im so bad at the moment i hardly get out of bed.  Two days ago I checked myself out of hospital, the day i checked out I was meant to have a lumberpuncture just before this my NS came in and told me to stay on my meds and loose more weight??? what the...im 5ft 10 and weigh 90kgs dont see that as overweight, the thing is I have lost weight and havent got any better, he seems to think loosing weight is the cure for everything.  I got diagnosed last DEC and since then have gone down hill,  Very unbalanced,dizzy,sore neck/shoulders all the time.  Uncontrolled moods. cant sleep but fatigued all the time,cant travel long distance. forget things all the time, and really just in pain 24/7 im to the stage where I think god I cant live like this anymore.  Anyway so I thought why should i have LP when im not going to benefit from it.  I was going to see a neurosurgeon whilst in hospital but being 4 hours from home and my family n kids I though I will just go home and wait to see someone and besides my NS had really gotten up nose with his advice for me.  Now back to square one. I think i need to change NS and find a specialist in chiari within australia.  Every nurse and student that came in my room would sit down and ask me to educate them on chiari, gee makes ya feel really safe, and they do brush you off like its all in my head. I had a CT done and I know a CT is not going to show the same as a MRI why didnt they put me in for a MRI man i could go on forever, im frustrated, confused and angry and want my life back. Where to from here????

[selmaS]

HI...how did ur dr appoint go yesterday??

please let us know.

Merry Christmas!
"selma"