Newly diagnosed with Chiari I

[2GApeachy]

I just got a diagnosis.  When the doctor told me, I was so nonchalant; however, having done more research, this is rather serious, right?  I have seen Chiari support groups, etc., so that got me rather scared.  Also, I was reading some of the posts that said that their cerebellar tonsils extended 8 or 10 mm into the foramen magnum.  Well, mine says that it's 1 cm.  How bad is this?  What should I expect?  

[Ksand]

Hi, thank you for responding so quickly, as this as been one of my hardest days by far. They have not done a CINE MRI and I can't tell if my neurosurgeon is a specialist. It says he performs these surgeries along with many others, which makes me uneasy. I know there is a center an hour from here though and am wondering if I go there instead. The only other diagnosed issues I have is the the nerve damage and the brain tumor. I've had extensive blood work done and I know he ran more today but just for the tumor. However, for the past month every doctor has been attributing my pain and increasing symptoms to the stress of the trauma or being unable to to walk for two months and this is the first time a doctor looked at it from the opposite perspective...as if my ankles both breaking were a symptom. I don't know much about any other related disorders and by now I have so many confusing symptoms I feel like I'm crazy. They believe mine is congenial, and if I'm honest with myself, I've definitely had all of these symptoms but they came and went and when they came no one could find a reason or relief for me so I figured this was just something I had to live with or that it's normal and everyone feels this way...are there specific symptoms i should try to be mindful of? I have a hard time deciphering what's normal and what's not and frankly I've had SO many symptoms that I've almost convinced myself that it has to be in my head. I struggle with intangible symptoms outside of pain...my brain feels like mush, I'm confused 95% of the time. And I've grown to really dislike and not trust doctors through all of this...

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u have this condition and for someone as active as u have been I am sure it is not easy to deal with...not that ne of us find Chiari easy to deal with.....

Have u had a CINE MRI to see if u have a CSF obstruction? Checked for related conditions?

Do u know if the NS is a Chiari specialist? Did they tell u if ur Chiari is congenital or acquired? Many times those with Chiari deal with the symptoms as they cycle and we r so use to them we r not aware how we feel is not "normal"...so, u need to know is this acquired from ur accident or just triggered it from it.

Length is not as much an issue as the obstruction of CSF, long thin tonsils do not block the flow, but a short wider one can....so flow is more the issue as well as related conditions.

[Ksand]

Hi, I was recently in a traumatic snowboarding accident in which I broke both of my ankles and received a concussion. As an avid snowboarder, this is not my first concussion though. I have had horrible neck/shoulder/back pain dating back about two years, with no successful meds or therapies. I also increasingly was becoming more and more fatigued. About a week after I began to start walking again after the snowboarding accident, my symptoms began progressing very quickly and new ones (numbing and cognitive symptoms). I got cervical and thoracic MRI that just showed degeneration on the thoracic and slight herniation in the cervical. With no relief with therapy I went back for an EMG test which was positive for nerve damage on the right side. A couple days later I ended up in the ER after I lost sensation in the left side of my upper body...even my tounge and throat. They did an MRI and found the chiari malformation 1, tonsillar ectopia, tonsils decending 22mm. While I know everything I've read says length doesn't matter, I have yet to find anything as large as mine...it's also says the tonsils are pointed? And no evidence of syrinx (which would have explained my symptoms). It also says distortion of the medulla with clava being displaced inferiorly. With prominent encroachment upon the formen magnum with marked impaction. THEN It says the report was later read by an additional NL and notes that with contrast, there is an active lesion of 7mm on my pituitary gland. I am a 26 year old female that has gone from the picture of health to basically a total body and mind deterioration (not an exageration this is really how i feel) with a brain tumor?? I feel it in my gut that this is not the full story, I can't explain it but I know something is not right. I was referred to a neurosurgeon, who (shockingly) said I need surgery after he tests my blood for the brain tumor. I have no doubt that I am past the stage of having a non surgical option, given the fact that I've been in therapy for months now and on several medications, with no pain relief...the cognitive issues are progressing every single day and I'm getting so scared that my surgeon is missing something. I feel helpless and hopeless at this point....I can barely even make it into work anymore. I don't know where to turn :( please help.

[selmaS]

  Hi and welcome to the Chiari forum.

many of us r told that it is an incidental finding...bcuz the Drs do not know much about Chiari and how it can affect us...even our sinuses ....there r some many issues and Drs look at them individually instead of connecting them.

Do u have or can u get copies of ur MRI and the report? This will help u get the 2nd and 3rd opinions from Drs more experienced....having the right Dr is key....

We do have a list of Chiari drs, these r names of Drs the members went to and liked...u still NEED to research them the list is NOT a refferal.

What u do in ur daily activities can affect how u feel...listen to ur body and do not push when u r tired or sore.

Chiari cycles...and until u know just how urs is affecting u and ur overall health it is hard to say what might work, except do not over do...we have a list of activities to avoid with this dx.,..that can help some.

[imhisjoy]

hello I am new here really need help the last time i seen a doctor he told me there was no need of surgery, and it was just probaly found on mistake.
i have bad sinus problems so really hard to tell which is affecting me! cause apparently sinus issues can have you off balanced as well. so is there any tips to get the days better?

[selmaS]

  Hi and welcome to the Chiari forum.

First, I have to say Thank you for your service to our country, I truly appreciate all the men and women in the armed forces.

Most Drs do not understand how and y Chiari affects us....many of us have had symptoms all our lives but when u live with something all that time it is "normal" and u do not see it as a symptom and u adjust to it, and move forward, the more u learn about Chiari u may find u have more symptoms then u think u do now.

The MVA can be a trigger to set in motion a flare up of symptoms....sometimes it can be a fall, a sneeze or a cough....even stress can trigger it....

Chiari also cycles so u may be in a flare, and if u relax u may be able to get out of it, but with the stress of the dx many times that does not happen like prior ro getting a dx....we may have had flares but not knowing what the issue was we r able to relax and feel better...

Once u have a DX of Chiari u need to find out how it is affecting ur overall health....a CINE MRI is needed to see if u have a CSF obstruction, then MRI's of ur thoracic, and lumbar as well as the cervical spine to rule out syrinx's,. disk issues,tethered cord, scoliosis..etc...

Then u need other tests to rule out related issues like sleep apnea, ICP, POTS, ehlers-danlos, vitamin and mineral issues and u already know about the thyroid,,..that is linked to Chiari.,....and that fibro dx may be EDS instead....so many of us get a misdx of that....

Do look for a true Chiari specialist, I know being in the military it may be difficult as they want u to see their Drs, but not too many members here that have been military have found the Drs in the system well informed on this condition.,

Always glad to welcome a newbie, but so sorry for the reasons that bring u.