chiari 1 malformation

Question

i'm a married 30 year old mother of 3 and i have recently been diagnosed with chiari 1 malformation. my tonsils extend 10mm into my foramen magnum. i've had migraines (common, classic, complicated) for the last 10 years. i get very dizzy and lightheaded, my balance is not what it should be, extreme fatigue, dysphagia, weakness, and probably a few more i can't remember (did i mention bad memory). from what i've read and researched, 3-5 mm is bad, how bad is 10mm? i've also been seeing a cardiologist, and is there a link between my heart issues (murmur in aortic valve, palpitations so far) and the cm? surgery was only mentioned for the cm if compression happens, but isn't compression what brings the symptoms i have? any info or help and support would be greatly appreciated. thanks so much.

selmaS · Answer

Hi and welcome!!

I am glad u popped over....please be patient...this is not as active a forum as the others here on medhelp....I am sure someone will answer....if it takes too long.Please consider starting a new thread....this is an older post and may get overlooked.


"selma"

tomsmom11 · Answer

My 2 yr old son just had surgery in oct and prior to surgery had no symptoms that we know of, it was found during a mri looking for something else but now he is getting headaches often and it upsets me to see him in pain now, i have got to our doc and he wanted to put him on a migrane med and also call the doc that did the surgery (who is 5 hrs away) so i am waiting to hear back from her tomarow and looks like they will do another mri sooner than what was planned, i guess im a little lost right now all the posts that i read all show older people not someone this young and im hoping that i did the right choice getting the surgery done, thanks for listening

Aussie1222 · Answer

Definately see a neuro-opthamologist about your eyes.  And have another doc. read both MRI's.  12mm may not sound like much, but that is a pretty big growth - so if it is not chiari, it is something else.  I think it would be hard to mistake a 12mm herniation.  Mine is 7mm and I can see it clearly on my MRI.  Is it possible that there was a mix up with one of your MRI's, I mean let's face it - people make mistakes all the time.  One of your MRI's could have actually belonged to John Doe, in which case they would not read the same.  But you need to know whether or not you have any problems even if it is not chiari.  

Go to the Doctor neurology forum on this site, ask what that doc thinks and Post your MRI's online if you can.  Just get another opinion, something is not right here - you need to get to the bottom of this - because any neurological damage caused by chiari or the formation of a syrinx is irreversable.  Be careful with your health, don't settle for an answer that doesn't "settle" with you.

rosemary67 · Answer

I wa having visual problems and headaches, so i was sent to see a neurologist by my Eye Dr who saw swelling behind my eyes. Had   an MRI, showed the Chiari malformation with 12mm lowering of the tonsils. So i was sent to a neurosurgeon who looking at my mri told me i would need surgery but he wanted another MRI done. That MRI did not show the malformation and i was told i did not need any surgery , I was very delighted but also confused because i still have the same problems which i stated with. So what do i do from here on, please guide me if you can, i feel lost, which MRI results are correct and who should i believe.

ngraham819 · Answer

i just found out that i may have mitral valve prolapse, i have a leaky mitral valve.  my cardiologist wants me to have an mri of my heart.  and i'm getting a cervical spine mri today.  maybe they should just do a whole body mri lol.  i'm also going to see a neurosurgeon on the 8th of sept to get some more info and options for my chiari.  i'm glad everything has gotten better for you, and hopefully you will continue to heal.  thanks for the info.

chiarichris · Answer

Oh I forgot. I had a full blown Myocardial infarction (HEART ATTACK) in April 2004. After every test imagineable, normal blood pressure and good cholesterol it was determined that it was the Chiari that caused the heart attack. Chiari can put pressure on your basilar arteries which can cause a heart attack due to constricted blood flow.

chiarichris · Answer

I have had Chiari my whole life and just presented with symptoms in April of 2006 I had decompression surgery June 2006. Every one of my symptoms went away almost imidiatly. I am just now having some issues due to a cyst that has formed. I was at a 8mm herniation and had headaches that literally stopped my life. I was also legally blind in my right eye could not feel my feet and the hands were going too. Even now with this cyst I am so much beeter than I was before. I also have Hydrocephalus and Spinabifida ocultta. My doctor told me that the longer I waited to have the surgery the less likely the symptoms would be fully reversed.

Shane99 · Answer

Since the surgery my numbness and issues with my legs and hand have gotten a lot better, but are still present to a certain degree.

At this point, you should seriously reconsider a different neurosurgeon - for that matter; are you seeing a neurosurgeon or a neurologist? If you aren't seeing a surgeon yet, then you may be able to keep both - as long as one is an expert, but try to find experts all around. You may feel comfortable with your current, but if she's not thoroughly informed about Chiari, then she can do more harm than good. At least request an MRI of your spine - specifically looking for syringomyelia. That could explain your back pains - but so could other things. I know that I have a tendency to want to explain every ache and pain I get as a Chiari symptom because I have it, but the funny part is, if I bring something up to my doctors, they tell me most of the time that it's at least possibly connected.

Doctors are taught to relay information to patients in a manner that is soothing - or at least in a way not to cause panic, but I could tell when my neurologist informed me that he was very concerned about how far along mine was.

ngraham819 · Answer

that must have been really scary.  i can't even imagine being paralyzed.  was the paralysis reversed?  

i have no idea if i have a syrinx problem.  they only did the mri on my brain, so i need to get my spine checked too.  i have noticed that some symptoms are getting worse (or am i just paying closer attention?).  i have some pain right in between my shoulder blades, have no idea if that is related or not.  i hate to think that my neuro just is not informed enough of this, but i'm starting to think thats the case.  when she told me, she didn't even specify it was chiari malformation or that it was 10mm.  it was kind of like she was telling me i had a cold.  i picked up my mri report, and thats when it was finalized.  i really like my neuro, but if she can't get me the answers i need, then i definitely need to find someone who will.

Shane99 · Answer

Yeah, surgery is never something you want to chose first, but sometimes it's necessary. The problem is, often you can't treat the symptoms. All the problems start getting worse and, in my case it was caught so late, that they pretty much rushed me into surgery. But I can't complain about that. I was starting to show signs of paralysis.

Do you have a syrinx problem? 

I'm not aware of a connection between chiari and heart issues, but as mentioned above, check with a chiari specialist.

ngraham819 · Answer

Thats funny we share a last name and symptoms.  I'm hoping surgery is not needed, as I've read most sites stating that surgery may not be the best option, many may be required, and they may not alleviate symptoms or they come back.  I think I would rather focus on treating each symptom.  The one bothering me most right now is the muscle weakness.  I have a 2 1/2 year old that is hard for me to pick up and hold, and stairs that are no longer my friend.  My husband and I are looking into seeing a neurosurgeon to figure the best treatment.  I don't think there are any Chiari specialists in MD, but we have Johns Hopkins Hospital, so hopefully that will yield something.  Good luck on your recovery, and I hope you find relief.

Nicole

Shane99 · Answer

"migraines (common, classic, complicated) for the last 10 years.  i get very dizzy and lightheaded, my balance is not what it should be, extreme fatigue, dysphagia, weakness, and probably a few more i can't remember (did i mention bad memory)."

Yeah, I have all those also. I was diagnosed in April and operated on in 3 weeks, but my herniation was at 20mm and showing signs of paralysis.

You seriously need to get a Chiari specialist - most doctors have never even heard of this and even neurologists and neurosurgeons aren't necessarily specialists.

Oh, and my last name is Graham :)

rain2112 · Answer

Any herniation with symptoms is bad.  The reason many docs. say less than 8mm is nothing to worry about is because USUALLY symptoms do not present until about that point.  And the majority of docs believe you do not need surgery if you do not have symptoms.  However, if you have symptoms (which you do), you have a problem - no matter how big your herniation.  There have been accounts of people with a 0mm herniation that need surgery right away, while somebody with a 15mm herniaiton has no symptoms, and no need for surgery.

I don't know if chiari can cause your heart problems or not, but the best thing for you to do is - see a chiari specialist.  Really, I can't stress that enough.  Docs know very little about this affliction, you must see a specialist.  At least consult with a specialist, just to see what you think.  A specialist will take you seriously and will better understand your symptoms - all of them.

Good Luck.