possible chiari?? not sure, plz help

[alexiwildchild]

hi everyone! i'm new to this board, but i'm hopeful your knowledge can help me out!  i have been having all kinds of problems since june 2007.  Symptoms include: CONSTANT jumpy/shaky vision--never goes away, overall dizziness, headaches/migraines, tinnitus--has gotten worse, heart palpitations, tingling in hands/feet--but has kinda gone away, but instead my feet get extremely red, burning and are painful just when stanging or hot (was dx with erythromelalgia)--but now i'm thinking it's connected to this.  i've seen tons of docs, had so many tests run, etc.  just so happens that i needed to pick up an MRI cd/report to take to my ENT doc (for unrelated deviated septum) that I saw on the report, "cerebellar tonsillar ectopia".  This MRI was done last July, and nothing was done about it, cuz I guess my primary had no idea what that was.  Well, I read in the notes that it is a 6mm (below the foramen magnum) cerebellar tonisallar ectopia.  I just so happened to look this up, and came across all of this.  I AM SHOCKED!!!
Can anyone tell me if this is what an Arnold Chiari Malformation would be? From what i've been reading, I'm guessing it is??  I am set up to see my primary doc and hope to be sent to a neurosurgeon to discuss this further.

I am so excited to just maybe have an answer to my 2 years of no real diagnosis. I've heard migraine associated vertigo--took 1 yr of meds, mild concussion from Six Flags trip, and I also tested positive for Lyme disease--but was not formally diagnosed due to my presentation of problems.

Please let me know what this means, or what I should expect? Am I on the mark, or way off with this? Thanks everyone!!

[Dawn1214]

No it is not related to the chiari. I am just the lucky one to have 2 very rare issues.lol

Yes it helped some symptoms.. I know where auburn is.

I think you should see your moms surgeon and see what other tests he wants to run. If he is knowledgable with chiari then you should be fine.

I wish you a lot of luck and make sure you let us know what is going on.

Best wishes

Dawn

[alexiwildchild]

Hi Dawn, Wow! that's crazy that you had to have surgery for the other issue, has it improved your symptoms at all?  I do hope you are getting some relief, as it sounds like quite a condition you had.  Is that related to the Chiari?  Buffalo, huh?! Well, my dad's side of the family lives in Auburn, about 30 min from Syracuse.  My mom's neurosurgeon is here in TX, but we'll see how he is.  She had surgery with him, and was really impressed with how he handles his patients and his bedside manner.  I didn't see a chiari specialist on the list here, unless i just overlooked it...it was late last night when i was searching lol.  I'm trying to stay within my insurance, I have Scott & White, which is mostly just through Scott & White hospitals, clinics, etc, but a lot of outside docs take it from what I've heard.  I'm not too knowledgeable with all that, cuz I just got the insurance end of 07.

Anyway, thnx again for the info and I do hope all is improving for you!! :)

[Dawn1214]

I have a chiari but mine is supposedly a non issue. I just had surgery to remove a cavernoma from my spinal cord. It was a tumor that bleeds and it was starting to cause paralysis in my legs. My neurosurgeon is wonderful and he is also very familiar with Chiari so I had all my disks with me and I had him review them. He is the third surgeon who feels the chiari is a non issue so he no surgery necessary. I was thankful as this surgery I just went through really took a toll on my body.

I have had all the tests for the chiari and then some. A Cine test is sometimes also called a Q flow study. It nothing more than an MRI with and without contrast where they monitor vital signs and watch the spinal flow to your brain. Mine is fine.

There are a lot of different things that can cause chiari symptoms. I think mine is a combination of that tumor in my spinal cord, anxiety from them not being able to diagnose me, and tightness in my neck from being so stressed out all the time. Things like this can really cause a lot of neuro problems so please try to stay calm and not get too worked up about the chiari until you have more definite answers and see the right doctor.

You said you are going to see someone whom your mom knows. Is that in Texas? You also said that you have family in Upstate NY. May I ask where exactly? I live near Buffalo and my neurosurgeon is at Millard Filmore Gates hospital. He is well versed in all neuro issues as well as chiari's.

Dawn

[alexiwildchild]

Thanks so much Dawn!!! yeah, i def know about feelin like a lab rat with those tests...they're horrible. i hope all is well with you, did you get diagnosed with chiari then? i'll have to read more posts, i've read some, but haven't had enough time lol.  what is the cine??  sounds liek i'll be pursuing those next once i hit up the neurosurgeon, that is, if he's not an idiot.  have you had those done already too? thnx again for the help :)

[Dawn1214]

6 mm below the forum magnum means the tonsil hangs down 6 mm lower than it should. I don't know the medical lingo but basically if you look online you will see pictures of the tonsils in the back of the head hanging down. Yours hangs 6mm (which is small on a ruler). Mine is about the same as yours. Supposedly 5 mm could be symptomatic but some people have larger ones that aren't and some have smaller ones that are. It just depends on the individual.

The Eng is a big tell all. Neuros look for the nystagmus and the csf flow.That is your next step to get the cine or q flow study done. I have a problem with my right inner ear. I didn't get dizzy at all with that ear. Yes I have been through all those fun tests too. I felt like a lab rat but they are all necessary...

Please keep us updated....

Dawn

[alexiwildchild]

hi everyone!! i just wanted to say thank you all so very much, and i agree totally with everyone being so very helpful and knowledgeable!! it means so very much, and i think it is such a wonderful thing to find people who can relate--even though it *****!

chadry, i'm sorry your daughter is having to deal with this.  it is nice to know a doc that doesn't dismiss it as being crazy lol!! i'm glad to read that it can be a possibility with this. i have it constantly, haven't had one second of relief for 2 years now, it's making me crazy!

Dawn, thnx for the input!  I have actually had the ENG and the other torture tests they put you through with thinking it's a vestibular issue.  mine was not, i had no nystagmus, and no vestibular dysfunction as far as bilateral or unilateral, i actually got extremely dizzy after the water in the ear torture, which told them i had no issue with that. i've pretty much had every test imaginable done lol, with NO results, and just stunned faces. they thought it was migraine associated vertigo, as they had nothing else vestibular to go off of---the ENT's anyway.  i've seen a neuro-opthamalogist as well, and they are the ones who gave me the diagnosis of a possible mild concussion from six flags--which i went a few weeks right before this stuff started....but that wouldn't cause all my other issues.

i want to thank everyone again, so much, for being so helpful with this!! i live in texas, and have family upstate NY, where i see is somewhat close to the Chiari Institute.  my mom had a neurosurgeon work on her here for neck surgery etc, and she wants me to talk to him. she called his nurse and she said he deals with it, and so i guess he'll be my first stop after my primary gives me a referral.  if he's not cooperative, then i guess i'll keep searching, or take my butt up to NY lol!!

ok....so can someone tell me....if it says 6mm below, does that mean the same as a "herniation"?  i'm kinda confused with the lingo.  and i still don't know why the MRI report didn't say anything about chiari, and just the tonsillar thing.. UGH!!!

[Shane99]

Yay for us! :)

I think it's sad how Chiari is so misundertood or even not understod at all. I mean, I get that there are many many medical issues, and a doctor has to narrow it down (just watch Dr House and his team :) but, it infuriates me when you tell a doctor what you think it might be and they just dismiss it, because they're the doctor.

But with this, we have to learn quick. And we have to be our own advocates.

[Dawn1214]

Hey Peachy....  You fit right in here with everyone else. I usually only help out here when selma is away as I had other medical issues I was dealing with (had surgery last week to correct that).

I see your posts and that compliment you gave everyone in your last post includes you too. You are just as awesome as the rest of them This is a great forum and I have always noticed how quick the posts get answered and how knowledgable everyone is.

[ThePeachy1]

Hey guys, I am just sitting here reading all of your responses, how caring and understanding you are to everything and helpful. I have watched people come in at the end of their ropes after being shot down time and time again, we all have been there and time and time again I am so impressed with how knowledgable and helpful and understanding ech and evey one of you are with each person that comes in, what a wonderful community we have. I think only special people are touched with chiari. You guys are so awesome, just had to say so.

[Dawn1214]

The problem with your eyes that you are describing can be confirmed by a test called an eng. I had one of these and it is a long test done usually at a hospital. It is painless. They will hook probes up and test your eyes and brain at the same time while watching lights. They will also test vestibular in your ears which will make you a bit dizzy.

Most neuros will order this test if there are problems with vision. This would give them a good idea about what is causing the problem.

You will also need the MRI with and without contrast and the cine or q flow study.

[chadry]

Just thought I would let you know as far as your shaky eyes go, my daughter gets that also. That is how she describes it. She says her eye balls shake.
Her doctors have not been able to see them shake because it is not all the time but he did say that it is a conditioon that does go along with the chiari. He was not surprised when she described the feeling to him. Find a chiari specialist, it will make all the difference in the world in your quest for answers.
Let people know what part of the country you are from and they may be able to help you in that department. You may have to travel a bit but everyone here will say the same thing, that may be the only way to get your answers. Most people here have been through years of not finding the right doctors until they finally have gone to specialist for chiari.
Take care
Chadry

[alexiwildchild]

Hi Shane,
Thanks for the reply.  Well, I haven't gotten an "official" diagnosis of Chiari from a doc yet.  I just have discovered this last night and picked up the report of the 08 MRI today.  This is what's confusing me...It says "The cerebellar tonsils extend approximately 6mm below the foramen magnum".  But then under the "Impression" section of the report, that's where it just states "cerebellar tonsillar ectopia".  So I don't understand, if it extends past 5mm (from what I've been reading online), isn't that considered to be Chiara???? I'm SOOO confused!!!!  I must say that the place I went to have this MRI was not the most impressive as far as staff.  They couldn't even do one with contrast cuz their nurses couldn't get a vein after 4 attempts. But of course, maybe that was just the nurses.  Even my primary doc, who read me the results (last July) had no idea what this was and thought it was like a third tonsil or something lol.  and so i've thought that this whole time, when this could really be the answer to all my horrible daily symptoms.

Please explain what the diff is with this? I'm lost lol!! thnx again for the reply :)

[Shane99]

I'm a little confused as to the diagnosis. Cerebellar Tonsillar Ectopia is generally used to differentiate between Chiari 1 and Chiari "0". Chiari 1 is generally used if it's more than 3-5mm. Why your MRI would call a 6mm herniation a tonsillar ectopia I don't know. Unless whoever wrote it didn't know what a Chiari Malformation is.

I'm not sure about all the symptoms being related, but most can be Chiari symptoms.

[alexiwildchild]

Hi there!! thank you both so much for your replies and information!! it definitely helps!  well, as far as the lyme disease, they didn't give me the diagnosis because the second test i had, although positive, came back positive for the initial stages of lyme--not the chronic--and i have had these symptoms for 2 yrs, so that wasn't right.  i took meds just in case, but nothing helped, so when I came across this last night after reading my report=---i was like, WHOA!!!  it seems i've had every single test known to man, and this is the first to make sense...but I will definitely be checking out more info, and seeing to get the proper further testing done.

As far as the vision, the best I can describe it is grabbing the corner of your upper eyelashes and jiggling it.  that's what my vision is like every day, every second. it's even like that with the blackness when i close my eyes...AHHH!!  This is the worst part of it.  I can kinda also describe it sometimes as being like looking into a mirage, if that makes sense. It's just shaky, wavy, wobbly.

Thank you again, so much for your understanding and info.  I will definitely be haning in here for questions and see what comes of my upcoming doc visits...sounds like it can be quite tough though. yikes!

[Dawn1214]

Hi
Peachy is right you will need more testing to see if your symptoms are caused by the Chiari or by the Lyme disease. A cine or q flow study will be needed to check your spinal flow to the brain and also an mri of the spine to check for a syrinx or a tethered cord.

Someone who is familiar with chiari is your best bet as a lot of the neuros are not up to speed on a chiari because they just haven't seen them in the past like they are now.

This is a great place for information. Everyone on this forum is very knowledgable and always willing to help so make sure you post with questions and concerns and keep us up to date on what is going on.

Just curious can you tell me what is going on exactly with your vision. What do you mean by constant jumpy/shaky vision? Do you get blurry vision or what is it like?

Thanks
Dawn

[ThePeachy1]

HI and welcome, first let me start by saying I am not a doctor nor a specialist in chiari I am just somone with it. Second let me say, uhm,  my neuro didnt' actually say the word I read the 9mm in the report just like you just did and found it here just like you just did I strongly suggest you read the very top post on this board, makes it all pretty clear, but you have some other things going on too, like the lyme disease?  I had some consussions in my past, mine was 5mm in 2005 and now it's 9mm I have my first ns apt on friday but like everyone will tell you, and it's the BEST ADVICE you have to see a chiari specialist to really get it all put together and have it make any sense at all.  there is a post on here that is actually a list of chiari specialist I think it's on page 2 or 3 now you may need to dig but it's worth it. The shocked will wear off you will get mad, then determined and then frustrated, hang in there, yes your dizzy, yes  on just about every single symptom you mentioned it all fits the bill but on the same toke so do other things so you really need a good chiari specialist to nail this down, you will  probably need some other test to check other things also. There are some really smart people in this group so check out their posts and go with best advice dig up the specialist list and get to one, get a copy of your mri and radiology report print out a chiari info sheet and start carrying it with you. Good luck, your at the begining !