Mild Chiari Malformation

[greybeh]

I was told that I have a mild chiari malformation and some degenerative disc disease in my cervical (and lumbar). I also have fibromyalgia.

I'm having frequent (almost daily) headaches at the base of my skull. It is uncomfortable for me to look up (I'm a bird-watcher). My left arm goes "heavy" and feels like it's uncomfortable hanging at my side. I have weakness in my wrist so that I can't hold a book in that hand and sometimes it is hard to hold a cell phone or iPod. My wrist just wants to "give out." I have fine muscle coordination problems -- took 5 tries yesterday to pick up a sugar packet. I have spasms in my forearms, wrist pain and tingling in my fingers (in my left arm but they also began to occur much less severely in my right arm after a car accident in which my head was pressed into the seat in front of me).

I do have some balance issues. I have problems with my vision (I've been told by an opthamologist that I have problems with focusing and convergence). I am very light-sensitive. I have difficulty reading now, because I am distracted by faint black spots in my peripheral vision and I don't know if the whiteness of the paper is hard on me. I will often make errors because I read one line of text and mark a response in the line of text below it. I have problems tracking from one line of text to the next.

Ultram helps with pain, with the "tightness" in my arms that feels like muscle contraction, helps with my fine motor skills.

It was so confusing to be told I have Chiari malformation and then walked out the door and told to come back if I have "more symptoms." Are these symptoms consistent with chiari malformation? At what point do I decide to come back? I sometimes wish I had a standing MRI. How often do chiari symptoms not progress?

Thank you, could use any guidance you can provide.

history: I had surgery through my nose to drain a Rathke's cleft cyst that caused a 2 week long migraine in 2007.

[selmaS]

and twogirls,

Welcome to both of u!!

Unforyunately we do not have a dr that posts to this forum as of yet....but it is a great support forum.

Greybeth - many times chiari is mis-dx'd as fibro.....I was given that dx prior to getting my chiari dx.I was also dx with Ehlers-Danlos Syndrome which can cause some of the same pains as fibro.

U asked if there r thos with chiari and no symptoms...I am sure there r those that have no idea they have chiari....since most chiarians have it from birth since chiari is ciongentital, we may not be aware that the symptom is just that a symptom...we have had a feeling all out lives and look at it as normal.

But, an event like a MVA , a fall or a bump can trigger the tonsils to herniate....or to cause the symptoms to flare.

As for the cyst, it seems there r many that develope the cysts as well....not sure the %....

A syrinx is a type of cyst and called Syringomyelia....it is a related condition to chiari...so do ask if ur cyst is a syrinx.

U also want to be checked for a tethered cord and IIH......

Now for ur questions on the diff types of surgery.....most issues will come down to who did the surgery and ur condition ....sometimes nerve damage has occured and surgery is not a cure...it is a treatment to prevent the progression of the symptoms and condition.
The type of surgery, will depend on ur symptoms and condition...how much overcrowing and blockage u have as to what the surgeon will choose to do.This is also y we will stress u see a chiari specialist....ne NS can do the surgery, but to get one that has chiari as the focus of their practice gives u the experience u will want and need.

But once u have chiari u always have chiari. I am still recovering from my PFD and experience new things daily...some of my HA's are coming back as I do more.....I am trying to keep things slow, but I am impatient.

Overall, I am glad I had the surgery and I do feel better.

"selma"

[twogirls]

Any surgery is scary!  I honestly did not know that you could have the tonsils removed.  There are people that only have some symptoms and they don't bother them that much and it never gets worse.  Unfortuantly there are some of us that the symptoms get worse and we have no choice but to have the surgery.  The cyst does cause some achiness but it will slowly go away as the spinal fluid is no longer restricted and flowing normally.  I would ge a second opinion and ask her a "cine" MRI.  That will show how restricted your spinal fluid is.  Feel free to ask me anything.  Good luck

[greybeh]

I meant to ask you about the cyst. Where what it on your spinal cord? Does it hurt? I have one in the lumbar spine that I thought was un-related.

This doctor acted as though I shouldn't have any pain at all, even though I have a cyst, I have a torn disc, I have degenerative disc disease (bulging discs and some arthrosis) and mild Chiari malformation. I guess I'm just confused because I have symptoms when the neurologist says the MRI doesn't explain your symptoms.

Thank goodness my rheumatologist gave me Ultram.

Heather

[greybeh]

Thanks for your reply. I thought I was posting to a doctor, but after I posted, I realized I was posting for other patients. That's OK, though. I just want to hear from somebody.

I'm sorry you've gone through surgeries. It had to have been very scary. I remember how frightened I was when I had surgery on my pituitary gland. It wasn't as invasive as a craniotomy or laminectomy but it still made me feel very vulnerable.

I am so sorry to have to ask this but I read about people who said that they wished they'd gotten a tonsillectomy first and they have no ill effects. That seems so extreme but then again, I see people having to have the "patch" surgery re-done. I know with fibromyalgia (which I have), there are people who are on the more severe end then there are people like me who are still able to work, even if it's a struggle. So, can someone help me understand why people have a few of the "patch" surgeries? Why the tonsillectomy isn't more standard? I know the tonsillectomy is obviously more invasive, but of course, I hear from people who say that they're doing fine and should have done a tonsillectomy first. It's confusing, when I know so little.

Are there people out there who live with this and never need surgery? The neurologist frightened me by telling me I have this condition, and then not explaining ANYTHING more about it... just excusing it by saying it's "mild." Telling me none of my symptoms are explained by the MRI, and patting me on the back as I mechanically walked out of the office... He told me to come back if I have more symptoms.

Of course, I end up thinking things are going to get worse and still walking around with a fear that I'm going to lose the use of my left arm. I don't know what to think. So, I'm trying to get a more balanced viewpoint so I feel less frightened.

[twogirls]

I was diagnosised with Chiari back in Feb of this year.  I had arm weakness,headaches,dizziness,slurred speech,neck pain and I could go on and on with symptoms. At first I thought that I had a pinched nerve in my neck. The doc that I went to sent me for the first MRI that showed the Chiari and a cyst on myspinal cord(a result from the Chiari).  I researched this and went to Dr.John Tew at the Mayfield Clinic in Cincinnati,Oh.  In May I underwent a posterior fossa craniotomy with laminectomy C1 and duraplasty.  I still have dizziness and some neck pain other then that all my symptoms went away.  Good Luck