Long overdue update

[aiMelissa]

No surgery yet.  :-(  I met with the neurosurgeon Dr T on Sept 18.  He had to wait to get my films.  Once he got them he decided to do a Cine MRI.  That came back normal although, according to his words, it was "not a complete study but showed the sagital view".  Whatever.  So he thinks there may be something else going on in addition to the Chiari but is perplexed.  I had an MRV, mri to check veins in brain, October 10 and am STILL waiting to hear from him.  I have a history of multiple pregnancy losses because of a clotting disorder and my PTT is slighly elevated.  So he wants to rule out a vascular problem.  He also thinks I have pseudo tumor cerebri, which is just a fancy word for increased intercranial pressure for no apparent reason.

I also started to have what seem to by partial seizures.  I contacted Dr Oro's office today and am going to overnight my films to them tomorrow.  I am getting worse by the week (or day) it seems and the doctors in Nebraska are not taking me seriously.

I saw a pain doctor last week and he said that there was nothing he could do for me except suggest my primary care doctor try methadone for pain management.  That scares me so I'll just suffer.  I KNOW that I will feel better after the surgery, I just need to get a doc that will listen and help me.  Dr T is nice but he jsut doesn't know enough I don't htink.  And I am quite a complex case.  Oh well.  

I also moved.  We moved into a cheaper place, small apartment, because either way my husband will have to take time off of work.  He works a job where he is gone Monday thru Friday and it's getting to the point where it's not safe for me to care for my children alone.  

Feel free to reply and let me know how you are all doing.  I will try to catch up but I am burried in emails, lol.  I also started a website to document my medical problems.  it is....

www.
caringbridge.
com/
visit
melissahall

I hope that shows up.  Hope you all are doing well.

:-)

[razzle5150]

Remember there areno experts in Nebraska . Dr. Menenez in Iowa city is your best bet. He is a top Chiari NS .

http://uiphysicians.healthcare.uiowa.edu/physician_profiles/MenezesA.htm

[youngwife]

I am really glad that you have contacted Dr. Oro.  He is a chiari specialist, and should be able to help you.

Hang in there, and don't give up!

Thanks for letting us know how you are doing,
Rebecca