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[Guest guest]

Dear TCS friends,

After a three-year search, I was diagnosed with TCS on February 4, 2009 and

underwent surgery February 16, 2009.

My search began with an appt. at the urologist where I was diagnosed as having

interstitial cystitis - even though my problem was retention.  I was given a

variety of meds, instillations, bladder stretching surgery, physical therapy,

etc., but the problem remained and worsened. 

In addition, I have seen an internist, neurologist, rheumatologist,

chiropractor, accupuncturist,etc.  I have had blood drawn, taken many vitamins,

minerals, and herbs, and been detoxified.  I have been prescribed neurotin and

cymbalta.  

I told each doctor that there was a connection between my bladder problems and

my burning, aching, increasingly numbing feet and legs.  Each time I was

politely dismissed.  My internist thought the numbness and burning might be due

to hypothyroidism, as I was somewhat low.  After 5 months of thyroid meds, my

internist decided that hypothyroidism was not responsible for the burning and

numbness.  That same day, I had an appt. with the urologist (same group I

started out with) for a urodynamics test. 

I went through my story one more time.  Suddenly, as the doctor was conducting

the test, it was like a lightbulb came on.  She told me she thought she knew

what the problem might be. She made a call to a neurosurgeon, helped me get an

appt. and the rest is history.

It has just been 9 days since surgery, but I'm feeling confident.  The burning

and numbness are still present, but I had this awful sensation of my entire legs

falling to sleep every time I lay down at night.  That has gone away, and I

honestly feel as though my bladder has already improved. 

I would very much like to converse with another adult who has had the surgery. 

I truly wish everyone well.  This has been a most difficult journey for me, and

I would love to be able to help someone else along the way.