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.

[selmaS]

first u need a chiari specialist...where do u live.....?.....there are sites on line that have alot of info...the chiari institute and ASAP d o t  o r  g ......ther r lists out there but not all the NS r experts.
...did u also have a CINE MRI?...this is a  flow study to check for a blockage of spinal fluid.....u also want to know if u have syringomyelia and a syrinx. My herniation is 6mm and I am waiting for my CINE MRI to be scheduled...I have been in contact with the chiari inst. in NY.....
There r plenty here with surgery and those that have not had it yet.

but u deff need to find a chiari dr.

Good luck
Godspeed
"selma"

[LG0526]

Hi Selma,

     Thank you for your response.  I live in Dallas, Tx, but I am willing to go to a good doctor, even if out of state.  I have not had a CINE MRI.  Is that like a cspine mri?  Sorry, I am new to all this.  My main concern is just that this will get worse.  I work retail and am on my feet ALL day and carry things.  I have heard two different things.  I have heard it CAN'T get worse and I have also been told that it most likely WILL get worse.   I just don't know what to think.

I had a spinal tap a month ago and they discovered that I had increased pressure in the brain (only 22 - normal is 18).  I have read that increased pressure in the brain can be from a blockage of spinal fluid.  What do you think?

I think I need to check into getting that CINE MRI.  Thanks so much.  I appreciate any advice that you have.  

LG

[selmaS]

A CINE MRI u would have a clip on ur finger...it is to watch the spinal fluid as the heart beats...to see if there's a blockage....TX...I just was talking to someone down there...if u can get to CO...Dr. Oro is one of the best out there!!

if u go to my profile page...in my journal...read the poem that a dr wrote....to know there r drs that understand that well just helps me get thru.....

different things can cause ur chairi to degenerate faster....stress, trauma to head or neck...age....or unknown, since u had it from birth , u should look back to see when u started showing symptoms....how long have they been "bad"......one person's herniation was 5 mm and in less then 5 monthes was 10mm...which needed susrgery.....as these herniations grow the possibility of perminate damage grows as well.

try the ASAP d o t o r g     site......there is alot of info as well as contact info for drs.

keep me posted!


Good luck
Godspeed
"selma"

[Shane99]

I agree with Selma.

You need to find a chiari specialist - most doctors have never even heard of this and most neuologists want to try medication or therapy. In my opionion; these things don't help much. They can slow the onset somewhwt for a time, but surgery is the best option - again, this is my opinion.

Find a neurosurgeon that is considered a chiari expert - if you could make it to Colorado, see Dr Oro. Check around online. I also seem to recall there's others on this site that are from Texas (not that they necessarily are anywhere near you :)).

I'm not trying to scare you, the tingling and pains in your back are suggestive of syringomyelia. That suggests the herniation is starting to effect the flow of spinal fluid, which can lead to paralysis.

Check out:

www.chiariinstitute.com
www.asap.org

Chiari is not normally considered life-threatening, but it is life-changing. Don't waste time on getting on top of this. This is congenital so you've actually had it all your life, but it's only starting to get bad enough to notice. It could take years for it to get much worse, or it could happen very quickly. I was first diagnosed with mine 6 months ago, but it was 20mm and I had to have surgery immediatly. Another person on these threads had a 5mm herniation 2 months ago and when the Doctor operated a week ago, it had increased to 10mm.

Make sure you find a good neurosurgeon and get MRI's as soon as possible. If you disagree with the doctors or they tell you that Chiari isn't a big deal - get a second (or 3rd or 4th) opinion.

Good luck and keep us posted.
Shane

[razzle5150]

Dr. Richard Jackson in Dallas is a excellant chiari dr. Call and check him out.

[Hursty48]

Oh Boy - I am in Australia however I am finding all this conversation very helpful and will now have a list of questions for after my MRI and when I see the specialist. I know he is not a "chiari specialist" but I dont even know if we have these in Australia. Do people die from this?

[Lovemygirls2]

I agree with Shane99 and SelmaS basically about being an advocate for your own health.  I am the one they were referring to that had the 5mm herniation that grew to a 10mm upon surgery.  I had surgery 2 weeks ago and the herniation had doubled.  My symptoms had progressively gotten worse, and honestly by the surgery date- I didn't think I could continue to function much longer.  I am so thankful that God placed in my path knowledgable people on this forum that pointed me to a knowledgable doctor.  Like I said- I am two weeks post operation and I feel better than I've felt in a year.  I had really started to deteoriate!  The majority of my symptoms are gone!  Of course I still have some head pain- but I just had 29 staples removed from my head on Monday.  So- I would suspect that I will have some head pain for a little while.  But, it's a different head pain- it's not the same as before surgery!

I am a huge advocate of the surgery if you find a great Chiari specialist!  All I can do is share my story- I feel TONS better than I did before the surgery!  God is GOOD!!!

[selmaS]

Have u located a chiari dr ?.....wondering how u were making out on researching one.
Did u look at the ASAP or chiari inst. sites?

Keep us posted

Godspeed
"selma"

[LG0526]

Thanks for everyones help.  I have sent my films to Dr. Oro in Colorado.  They should receive them tomorrow at 10:30 a.m.  I hope to hear something back next week regarding an appointment.  He wants to look at the films first and then schedule the appointment.  I am very hopeful with this doctor.  He can't get me in until January, but I will take it.  I am just glad to have some hope because I am miserable and nothing helps.  I have had so many docs look at me like I am crazy.  My primary care doc is so great and supportive in helping me to get better, but all the other doctors I have seen look at me like they have no clue.  I have just been referred out to ANOTHER neurologist because the one I am seeing now doesn't know what to do with me basically.  He does not believe in the surgery and that is fine, he does not have to.  He does not think it really helps. ( He has only had 2 other patients with Chiari and I am his 3rd....so I don't feel he has an educated opinion on the subject.)  I believe in treatment and that it will help and thats all that matters to me.  I have just learned that I can't lose hope.

If you don't mind me asking...how does the Chiari make everyone else feel?
Like I have terrible pain in the back of my head, neck and upper back, numbness, tingling, and the list goes on and on.  I was just curious if anyone wants to share.
Thanks.  The websites helped a lot too, so thanks for that also.

LG

[jyojlynn]

Hi LG!  I am still working on my diagnosis, but these are my symptoms: extreme pain in my neck, shoulders and arms.  Daily headaches. Coldness, numbness & tingling in my hands, feet and face. Scoliocis. Ringing in my right ear. Stumbling when I walk. Blurred vision in right eye. Slurred speech, forgotten words. Choking.  A really weird one - I don't sweat - ever, for any reason.  Not sure if it's connected but hey - why not throw it in for good measure? LOL!  So, That's some of mine.  The worse are the daily migraines and the constant pain.  I can deal with the rest, buy it would sure be nice to get some relief from those!

Joy

[selmaS]

....I am glad u trew in the no sweating for good measure....I have said for years...I don't sweat....never minded the heat ever.!!...But lately I have been having cold sweats...not sure but think that is related to my hashimoto's dx.

I 'd also like to invite u to view my profile pg to see a poem by Dr Oro....it's in my journal.
it is so comforting to know that there r drs out there that understand.

Good luck
Godspeed
"selma"

[jyojlynn]

Wow!  How weird is that!  I just thought that it was just me that didn't sweat!  I will try to find the poem.  I tried to find it yesterday but it wouldn't show up.  I will try again.  Thanks Selma!

Joy

[selmaS]

U were asking how we feel /symptoms of chiari:
I get severe headaches....worse with straining...coughing....laughing which causes me to cough, choke and gag...sometimes to vomit......gait problems ....balance issues....blurred vision....vertigo......hand tremors....jaw and facial pain...ear pain, like an ice pick jabbing in my ear....swallow issues.....heart palps....anxiety comes on suddenly and leaves just as sudden almost like butterflies in the stomach, but not....and falls.....bump into everything......trouble sleeping....always tired....

oh yeah I forget stuff too!

"selma"

[SRMo21707]

My MRI came back that I had this malformation but they said it is only slight.  I have been in pain for a year now and if I dont get this fixed I will loose my job, my family, etc.  Is there anything you can do to help until your drs figure it out?  I have dr.s that dont want to help or dont believe me as they say everything is fine and they cant find anything else.  I cannot take the pain anylonger.  I am getting referred to a neurosurgeon but they said it could take awhile.  How can I get help right away?  How can I get to someone that will help me if my dr. wont refer me or rush this?

[selmaS]

Hi,unfortunatly most drs and NS's are not educated on chiari and follow old ideas regarding them...I also have mild chiari....6 mm herniation and am very symptomactic...do u know ur herniation? The other issue concerning chiari is a relativly new term called chiari 0...with this form there is no herniation.....chiari specialists will look not only at the herniation, but also at symptoms and CSF flow!
Do u have a copy of ur report and the MRI disk?...if not request one and continue to do so going forward.
If u do have ur report, u could give more info from it....please check our thread on chiari specialists...most here r listing their drs on the list....please research all drs on the list, not all r necessarily chiari experts.It is not to be considered reccommendations just a place to start.

I hope u continue to post here, it's a great place for support!!

Good luck
Godspeed
"selma"

[jyojlynn]

Hi - I also have a "slight" case of Chiari.  My herniation is only 2-3 mm, but I have very severe symptoms. My CSF flow appears to be good, but I am still in agony everyday.  I understand this.  So far, the only dr. to really help me is my GP, who gives me my pain meds with no lectures.  I just went to a NS, who - of course said because it was slight it wasn't really causing my symptoms.  He told me to go to a phychiatrist and then join the Peace corp and all of my problems would disappear..... uh huh...  I really empathize with you!

[SRMo21707]

I do not know my herniation.  The dr.s just pass it off and like you say, say it isn't that it is muscle spasms in my neck.  I am going to a specialists on Dec. 22 here in Des Moines Iowa though.  I just had 8 steroid shots in my head and neck on Tuesday.  I just dont know what to do.  I am trying to do anything to relieve this pain.  My husband got me a neck brace tonight to see if that would help as I cant be gone from work anymore.  I cannot miss another day.  How do you get to the right drs though.  I have to be referred most anywhere and it seems like no one can help or suggest the right treatments.  I have taken almost every medicine there is and they dont work either.  I just cannot take this pain anymore and need to fix it now.  But no one will help me.

[selmaS]

HI....make sure u ask for copies of all ur MRI's and the reports!
U need to educate ur PC dr on what chiari is.This will help him/her understand the need for u to be seen by a chiari specialist. Most of us do need to travel to get to one.
I believe I may have mentioned Dr. Arnold Menezes Univ of Iowa, Iowa City, IA
he is a chiari specialist. Please check him out, research on the web.We also have a thread here called chiari specialists list....u may find a name there u may want to research as well.

I am not sure the neck brace will help...it depends on ur herniation and the size of the neck brace....

Make sure u have MRI's of ur brain w/wo contrast...of ur cervical spine, thoracic and lombar spine. Ur dr should be looking for is a CSF flow blockage and a syrinx.Then he/she should look at ur symptoms and ur herniation.

There is no cure for chiari.only treatments.it can get worse rather quickly too!

I understand ur feeling like noone is helping, but it's more like they don't know what to do...learn as much as u can....and find a chiari specialist u r comfortable with!

Good luck
Godspeed
"selma"

[Arevalo21]

I've posted on some other chiari forums-doctors seem to give you the"brush off" like Selma told me once. It feels as if you're suffocating because only you and all of us here know what this pain feels like...and EVERYTHING else. I feel everything you do Selma. It's unbelievable that these doctors don't know so they look at you as if you're crazy BUT we are blessed to have people here who can share their knowledge and guide is in the right direction. Hang in there. We know how you feel. Remember that God gave doctors their knowledge and if they can't do anything...you know there is a God up in heaven who will make a way for you. =-)

-Gina

[selmaS]

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

please let us know.

Merry Christmas!
"selma"

[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????

[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.

[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]

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. :)