Questions about chiari

[annekline_9981]

I have recently been noticing a sharp pain in my thorasic spine.  It doesn't go away and it spreads like electricity to both sides.  I have also had an upset stomach for about a week and half and the low nagging headache that sits on top of my head and in my neck for almost a month.  I have hydromyelia and chiari malformation type 1.  I have been told that I could be at risk for a spinal fluid leak because of the syrinx and I don't know what is goin on.  Anytime I sit for an extended period of time (like at work) I loose feeling in my feet and legs.  I was having such bad chest pain that I had to go to the ER three weeks ago and they told me that my heart is healthy and then told me that the chest pain is completely independant of the chiari although I had to spell chiari for the dr.  The chest pain has not gone away although I am learning to tollerate it and I am pretty sure that fofr someone who has never had chest pain really before than something is causing it. They put me on a high dose of Naproxen to help the pain and that was all that was done.  I am always tired but the headache and back pain keeps me awake at night sometimes.  I am not really sure what to think and I cannot talk to m neurologist becuse his gatekeepers won't let me through.  It seems like it is getting harder to get through the work days just to get to the appointments.  I have more questions than answers and I was hoping that someone may have some advice for me

[dana_8142]

It is possible that your problems are unrelated to Chiari, you may have a simple vitamin deficiency.  Low B-12 can cause fatigue, cognitive fog, achyness, and even stomach pain.  Relax, go to your pcp and ask for blood work.  Specifically, metabolite panel, B-12 levels, TSH (thyroid stimulating hormone), CBC (complete blood count) with automated diff, Sedementation Rate (measures inflamation, infection, and even cancer cells in the body), RPR (for syphillis), an ANA (checks for autoimmunes diseases), and a Lyme Disease Antibody test.

I am not a doctor, but I have Chiari and a wonderful doc. who knows a lot about my disease.  We work together very well documenting my symptoms to evaluate what is Chiari related and what is not.  The reason I know what specific tests to ask for is because I keep all of my blood work orders and mark them according to my symptoms, so that I can help other people with similar questions.  I think it really helps when you know exactly what to ask of your doc.  especially when you have been so disappointed in the past by docs. I hope I have been of some help to you, and I also hope that your problems are as simple as low B-12 levels!!

P.S.  If your chest pains presist, I would recommend a chest x-ray and/or an EKG, just to be sure.  Good Luck to you, don't wait to long to see your doc.

[youngwife]

I would recommend that you seek a Chiari specialist...a real one.  Not one that *thinks* he's one.  It will make all the difference!! :-)

www.chiarione.org
www.conquerchiari.org
www.asap.org/forum

The Chiari Institute - NY
Dr. Oro - Colorado
Dr. David Frim - Chicago, IL
Dr. M. Rosner - Hendersonville, NC

(There are a few more, but these are just the ones off of the top of my head!)