Just diagnosed

[Kowen1986]

I had an MRI done 3 years ago for chronic headaches. I had a continuous headache for 2 weeks without any relief. At the time they didn't find anything. I was sent to the ER from urgent care yesterday for severe facial swelling with cold and flu symptoms. I had an MRI done to rule out a clot in my sinus veins. They couldn't figure out why my face is swelling, but they did find the chiari malformation with a 12 mm tonsil. I am a nurse on an acute care neuroscience unit. I have been there for four years and I have seen a few patients will chiari malformations, but not many.

It's a small relief to know that I'm not just imagining things. I wake up with a headache everyday, I am nauseous frequently and I have neck pain that I just call my stress spot. I have just lived this way for the past three years. My Dr. said they are tension headaches, I have a sensitive stomach and I do too much lifting at my job. Maybe this is true, but maybe something else has been going on too.

This all comes at a difficult time because my primary care Dr. retired unexpectedly 6months ago, so I need to find a new Dr., so I can actually find someone to follow up with.

Of course being a nurse I've been on a 24 hour research binge and I've totally panicked myself. My family has just been laughing it off that my brain is too big for my small head, and they think I'm overreacting. It's nice to be able to write this all down.

Has anyone had the a negative MRI before finding the malformation? I am 26, so I'm wondering if it was just starting to develop and it was missed on the original MRI.

[Kowen1986]

Thanks for all the advice and words of encouragement. I have an appointment with a new primary care this week which is the first step to jumping through the referal hoops. I am  planning on requesting the old MRI when the office opens tomorrow. I am grateful that this forum has put together a list of chiari specialists. The more research I do the more I am beginning to realize how crucial it is to see a chiar specialist.

[selmaS]

  Hi and welcome to the Chiari forum.

Finding a Dr that is well experienced with chiari is key...just a NS or NL is not enuff u want a true Chiari specialist. We do have a list of Drs that members here have been to and liked, it is not a referral and some may not be Chiari specialists on the list, but did successfully treat the condition...so do research, visit a few and see which one is best for u.

Educate urself on all related conditions as they can affect how u feel and heal post op should u be considered a surgical candidate.

I doubt that it was not visible b4, it is just that too many Drs do not feel it is something that will create an issue and feel it is an incidental finding....so they may not report it...negative means nothing they felt of consequence....

Get copies of all MRI's old and new along with reports and request these going forward when u go for ne and all testing...this way u can get other opinions much easier.,

Next get a CINE MRI to see if u have a CSF obstruction, and MRI's of the thoracic and lumbar spine to look for syrinx's and tethered cord, disk issues......

Hope this is helpful : )

[czpdx]

In answer to your question, I too had several (supposedly) negative MRIs for severe headache, dizziness, etc. over a seven year period. When I finally did receive my CM diagnosis, I had old MRIs pulled out of the hospital archives, and my Chiari malformation was clear as day. Lisariu's suggestion of getting a copy of your old MRI is a good one.

As I'm sure you will see if you explore this forum at all, finding a Chiari specialist is crucial. Many (maybe even most) of us have seen neurosurgeons and neurologists who initially tell us that our headaches and neck pain aren't Chiari-related. My sister, who was recently diagnosed and who has classic Chiari symptoms, is going through this right now. It's great that you're a nurse with neuro experience! It puts you in a good position to advocate for yourself.

[playboy953]

i have mirgraine since i was 4 and iam now 44 i wake up everyday with a sore head, had mri and cat scans , i go to the chronic pain unit every 6 months get injections into my throat , the bk of my head and my neck you would try anything but my head is sore 24-7 now my dr took blood of me last week and iam waiting to see if it is temple arthritis , as my temple is always sore , you would think they would no by now the mri scan showed up mucus retention cycst so god knows my sister never got any test done for her headaches and she died 2years ago she had a brain tumor , i no you are a nurse and its not nice to say this but some drs do not care , but iam glad you have got test done and yours is clear some people think we just make the pain up x

[LisaRiu]

Hi. I am also a nurse and was diagnosed with CM & syrinx 3 years ago so i understand the research mission you've been on. I did the same and also scared myself to death and also discovered along the way that some of the professionals don't really know enough about the conditions (unless they are chiari specialists). It's more likely that the person who looked at your mri 3 years ago missed it or didn't think it was related to your headaches. The malformation itself would have been present from birth. It is also possible that the herniation has increased since then and become more noticable. Do you have a copy of your mri from 3 years ago? If not, now that you have a better idea of what you're looking for, maybe you should get it and take a look yourself. I know my fellow chiarians will tell you how important it is to inform yourself and make sure you get a chiari specialist. Also get checked for related conditions too (a chiari specialist should do this). Good luck