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.

[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"