My nightmare

I'm a very active person. Well I still like to think of my self as a very active person even though I haven't done much lately.

In 2009 I road the wounded worrior project 26 mile bike ride and finished in the first 1/3 of the group.I felt great.Two days later I went for a casual 8 mile ride and flipped over my handle bars and broke my wrist.Following the surgery I couldn't get better and was diagnosed with full blown lupus.Was always getting sick growing up but never knew why now I know.I started gowing to pulmonologist and went to a new nurologist for my epilepsy and asked if he could do an MRI because I never had one so he did it.I always had horrible headaches but I always blamed it on my neck injury from previous car accidents and skiing and bike falls.I always wear a helmet.My MRI showed Chiari Malformation 1.This past August I got into a car accident going under 30 and my airbag didn't go off I hit another truck with mine and now I feel worse than ever.I can actually feel my head swell.My ear starts to trob and feel it actually swell.I go to acupuncture 3-4 times a week.

What meds to people find work? Help?

Before this I love to garden I have about 200' of flower beds and bike ride and watch my kids play sports now I just sit and get depressed and watch everyone around me get frustrated.My husband is a retired senior chief and he can't handle to even look at me sooo.

I’ve had two wrist surgeries every time I have surgery I get sick because the Lupus fights my own good antibodies.I have stenosis in my cervical and thorasic spine.I have impingments in two parts of my cord.I do like my Neuro-surgeon I’m just terrified of having surgery and then getting sickwith any sickness that lingers in any hospital can get me in serious trouble.

Hi Donna,

You wrote your NL looked at the MRI and told you it showed a Chiari Malformation, am I correct?? Did he have you go for a full spine MRI after the Chiari Dx???? This is important b/c many folks with Chiari develop a fluid filled cyst on their spine due to the obstruction the Chiari is causing?

Did the NL tell you to see a NS(Neurosurgeon) for his input....there is no cure for Chiari..however many of us have benefited from the treatment ..which is called a Posterior Fossa Decompression.

Under "Resources" on the top of this will find site that are wonderful...filled with medical info, ect...

Did your NL tell you the size of the herniation???

Good luck..keep us posted on whats going on.



Hi Lori,What do you mean by size of herniation?What wording are you looking for? I have all my reports except my most recent brain MRI.

Right now the NS wants to do surgery to decompress in November because of all the pain I'm in.My surgeon is Dr. Michael Brisman I would have surgery in Winthrop hospital in Mineola Long Island,NY.But I'm of course still looking into all my options.

Thanks Donna


By herniation , I mean far down does the cerebral tonsils go...for instance my MRI reads tonsils desend 5mm past the formen magnum...that is the hole where the spinal cord starts..the 'tonsils' should be in our skulls...with Chiari the tonsils go outside of the skull..toward the spinal column.

hope I described it right...hopefully others will chime in and give you their input.


Considerbly greater than 5mm below the foramen magnum biladeraly.There is also rereversal of the cervical curvature with disc degenerative disease most pronounces at c4-c5 where it compresses the spinal cord.