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]

  Endometriosis is common in those with Ehlers-Danlos as it is a connective tissue disorder and scarring....so do ask them to rule that out for her..as it can be helpful to the Chiari specialists if she is considered a surgical candidate....

Keep us posted on this next MRI results....

[Tamara7958]

My daughter when to the two top specialist in the the country . We were told she had platybasia ( skull malformation ).  When we went to John Hopkins they told her it wasn't severe enough for surgery. We came home back to square one. The pain management kept giving her meds and shots.i had had it by then I started researching and decided first to pray and then take her to an upper cervical doctor. We are on the right track.Recently we found one that does an MRI standing up.The Chari didn't show up on the other MRI's.She also had 4th stage endometriosis.

[selmaS]

  I can not stress enuff to rule out ALL related conditions especially EDS B4 surgery is scheduled....and when u have a date, post it in the surgery date thread.

[Harmony32]

The tonsils are a little lower than before, slight crowding at the foramen magnum and  the flow study now shows a diminished flow posteriorly at the foramen magnum. And this was only a cervical MRI, when I saw the neurosurgeon and he aggreed that most of my problems are due to chiari I kinda forgot evertrything else. I was like a deer in headlights lol, I went in assuming that he would be like most of the doctors I have seen, so I forgot to talk to him about doing a MRI of my whole back seeming how it kills me 90% of the time and my spinal cord feels almost like a bungee cord and there is always a lot of pressure through my head,neck and whole back. So when I go in on Jan 13th  to discuss my surgery I will also ask about the MRI of my whole back. I know the last time I got a MRI of my whole back after my MVA in 2009 they had found some lesions on some of my vertebrae and they chalked it up to birthmarks (which was not there before on my MRIS). But anyway we will see what he says. The pain management doc thinks he might want to first take care of what they found in my cervical MRI then preceed with anything else.

[selmaS]

  Glad u found Drs to listen...and keep us posted on what u find out from ur recent MRI's/

[Harmony32]

Well finally after many doctors and things getting worse I have a neurosurgeon who believes me and listens. I now have a pain management doctor who is in contact with my PCP and neurosurgeon and plan is in motion and Jan. 13th I go back in to the neurosurgeon to discuss which surgery will be preformed and to schedule it. Now that I have a new MRI and a CINE MRI done as well. I am just happy that I now have a group of doctors listening and working with me. Its a very hard and long road just to get to this point (not that this journey will be over, but the relief alone of having doctors on your side is making this easier) and when things were getting hard for me to deal with between being in so much pain and all the other fun symptoms, it helped a lot to get on this site and read others posts.

[selmaS]

  Hi and welcome to the Chiari forum.

More testing is needed at this point...u may not know y, but I will try to explain....first, by severe he is only referring to the length meaning it is long, with more testing they can check to see if it is obstructing CSF flow...this is very important to do, as well as see if there r other issues/conditions going on as well. With a CSF obstruction a syrinx can form, so they need to rule out Syringomyelia (syrinx) this is a sac like cyst that fills with CSF, and if left untreated it can continue to grow...some grow slowly while others increase in size very rapidly.

Chiari can be congenital or acquired...knowing which one u have is also helpful. Many of us have symptoms our whole life, but since we have always felt that way it appears "normal" and we do not recognize many symptoms as symptoms until we learn more about Chiari and how it can and does affect us.

The pain u have is a result of the MVA and it triggered a flare....that is if ur condition is congenital....and with 18mm's I would think that is more the case...the MVA may have caused ur tonsils to herniate more then they already were, and also is causing the flare up of pain.

The EMG is a typical test as well are the xrays, do u know if they r flexion and extension xrays?

Were u dx'd with whip lash from the MVA, if so, that could be the main part of ur pain, I know as I also had whip lash and know how bad it can feel....u may need PT to help with that.

The 2 1/2 month wait was fast by many standards, and from Dx to surgery for me was more then a yr....u need to take ur time and know all that is going on or risk getting worse.

Ur Dr is doing what is needed, and we all need to learn patience as I know it is hard to wait, but if u rush into nething with this, u risk more issues and a lot more pain.

Look to ur daily activities if ur still doing them....and try to avoid those that cause the pain and symptoms to flare.We have a list of activities to avoid in the Health Pages.

Try and relax <3

[alscial]

Hey everyone,

I was recently diagnosed with Chiari in November after a MVA. Finally, I went to a neurosurgeon last week (after waiting 2 1/2 months for the appointment) and although he states my Chiari is severe, he won't discuss treatment options until I get more tests done. I have already had an MRI, but he is making me get 2 X-rays of my neck, a CT scan, and an EMG. Did you guys run into the same problems? My herniantion is 18 mm according to the MRI report. I didn't like how vague he was about treatment, especially after telling me mine was severe and I had already waited 2+ months for this appointment. I am afraid by the time I get all of these other tests done, it is going to be unbearable. I already have to take muscle relaxers and pain pills everyday that basically do nothing. The pain is unbearable already, I can't wait that much longer. It is so frustrating.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask who dx'd u? Was it a Chiari specialist? The reason I ask, is Chiari II is something that is noticed at birth and not something that would not be detected until u were older.

Take ur time to find a true chiari specialist and see a few to compare to find the right one for u, as log as u do not have life threatening symptoms there is no need to rush.

Have u had a CINE MRI, a MRI of the thoracic and lumbar spine, checked for ICP, POTS, ehlers-danlos,syrinx.....????

  Try to relax as ur symptoms will increase with the more stress u have.

May I ask what other symptoms u have had to date?

[Jaime1583]

Is surgery the only way to treat chiari 2. i was just diagnosed.   The pain behind my eye is so bad all I can do is sleep.  I am extremely nervous and waiting to go to a chiari doctor. Also one pupil is larger than the other.

[Speedy2056]

I am actually horrified and disappointed with myself after reading the causes of further herniation such as head and neck trauma. Some years ago I did a lot of clubbing with friends (I love my metal music) and head banged to the tunes!

How silly was that? I am amazed that I am okay at this point. *shakes head in disbelief*

[selmaS]

The list of drs we have, is a list compiled by the members, drs that they have gone to and liked, and not all may be  true chiari specialists and y I say research the dr u choose to go to, that the list is not meant as a referral......and u may need to see a few drs b4 u find one that is right for u.

I may like one dr, but u may not...even tho he is good...personality plays a role as u have to be comfortable with the dr.

Well the way u were treated unfortunately happens far too often.....I pray this next dr is the right one for u as well.

Please keep us posted on ur progress.

  "selma"

[Harmony32]

Actually I have been reading on here for a month or so now. And I got the NS from the list you posted. He was the only one on there for AZ, and I tried looking specifically on my insurance since a gave the option for a CM specialist. I had called and talked to Dr. Mark Ercius NS office and they assured me they knew all about CM have dealt with many cases. But he was a jerk, and when I brought up the fact that people can progressively get worse. That I have read almost everything I could to educate myself. He told me everything I read was wrong, so I dropped it.

My last MRI was actually yesterday, it was of the brain, but my 1st one where they discovered CM and that I had a slight reversal of the cervical curve was a cervical mri. Now that said with the MVA they did a CT and MRI of my lumbar  where they found a lesion at the in my L1 Vertebral. But that is all. And I should also inform on the L1 they said was a birthmark, and the cervical curve thing "military neck" said it was a spasm.

And with the CINE MRI havent even gotten the chance to ask for one. They dismiss me after just a few minutes and interupt all the time. So I zip my lip and go to the next. Hoping that one way or another someone will figure something out.

I am hopeful that the NS that my primary is sending me to will figure something out one way or another. Now this NS actually specializes in CM did my research on him so finger's crossed.

[selmaS]

  Hi and welcome to the Chiari forum

May I start by asking when u had ur last MRI?....u should deff get another one if it was more then 6 months ago and u have new symptoms.Chiari symptoms can cycle, and can flare depending on ur activities...so u have to avoid certain things like lifting nething heavy, like a gallon of milk.....laundry baskets, children.....

Some with CM may never experience symptoms except for a trigger like a MVA, a hard cough or a fall...sometimes, they had symptoms all along, but bcuz they had them for sooooooooooooo long, they considered them "normal" and not symptoms...or bcuz the symptoms come and go, they saw them as separate issues and did not associate them with chiari.I am sure as u go along u may find u did have symptoms, but they were not as bad or consistent as they r since the MVA.

May I ask yet another question, where sis they look for ur syrinx?.....in the cervical spine only, or did they look in the thoracic and lumbar as well?

Have u researched the NS u r going to?...we do have a list to help u in ur research, it is not meant as a referral....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Check to see if the dr u r going to is on the list....not all drs will be, but u never know : )

And lastly, u should get a CINE MRI to see if u have a CSF obstruction and overcrowding.....it is important to know how ur chiari is impacting ur overall health.

  "selma"

[Harmony32]

I was diagnosed in 09 with a 7mm herniation after a MVA. Now for quit sometime I have had medical issue's, especially after I have had my 2 children. But within the last couple of years I have had:
Extreme Headaches
Neck pain/stiffness
Dizziness/vertigo/feeling like I am swaying at times
My hands tremor
Heart Palp's
Hands and feet tingle
Ringing in ears/hearing loss/sensitivity to loud noise's
weakness in hands( to the point where I have can't really open jars anymore)
Back pain/shoulder's/arms
forgetful/foggy
Eye's twitch/spots/blurry
Nausea
Stabbing feeling in my ear, sometimes at back of my head (to the point that I drop what I am doing because of the pain)
Fatigue/problems falling asleep

Now about 2-5 yrs ago they diagnosed me with Menieres Diease, and IBS.

After my MVA all the Neurologist's said that none of my problems was with the CM. So I just stopped going, all they wanted to do was put me on pain pills and muscle relaxer's. But this last year has gotten pretty bad with all these symptoms. It's very hard and painful to work or do much of anything. And with these symptoms it's like being on a roller coaster. Some day's are good and some are horrible. We finally got insurance again, so I went to the NS that was listed on this website (which I would never go back) anyway he did the usual neuro thing then looked at my MRI(which he said was the same from 09 but when I looked at it, it was different it was pointed now and just a little past the place it was in 09. Sorry anyway he told me that none of what I am complaining of is CM and that people don't just get symptoms when they get older, that if it was CM it would have started when I was young, and that herniation's don't get worse they stay the same. I was done at that point I started arguing with him at that point then gave up. He said that I don't have a syrinx.
I am just at a loss! I'm worn out, helpless! Can these be my CM even though I can walk fine and feel when they poke me in the hands and feet? Because every time I have seen a NS and they do those they automatically say it's not CM. If this isn't what is causing my problems, fine I just need to figure it out so I can live my life again!
No one has ever done a CINE MRI on me, just reg. MRI's. My primary doc has a friend who suffer's from CM and he suggested that I go to the Doctor that he sent his friend to. He actually does specialize in this, so I'm sending him my MRI's and report's to see what he say's. But I just really wanted to know if it can be CM even though the Neuro's test (walk,can you feel this and so on) is I would assume normal and him saying that the brain MRI show's no syrinx?
Sorry for this being so long winded, just very frustrated right now, just got back coming from the NS. Any help would be great!

[selmaS]

If u use the seaarch this community feature and type in Hursty48 u will get threads with her name....click on her name and it will take u to her profile page...u can send her a private message (PM) or a note.....her first name is Sue.

"selma"

[toni31]

thanks for this would be good to be able to track hursty down and find out what info she is able to give me, feel like i have a huge battle on my hands.  I dont know if they have CINEMRI but i sure would like to find out as the last experience i had with my last LP was terrifying I thought my head was going to fly off...lol.

[selmaS]

Hi and welcome to the HCiari forum.

We do have a few members from Australia...Hursty48 ....she had surgery and may be able to help u locate a chiari dr.

Glad u r part of the forum.

"selma"

[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"