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Author Topic: Hydrocephalus, anyone?!  (Read 1032 times)

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Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Hydrocephalus, anyone?!
« on: April 29, 2008, 02:25:18 PM »
Ive rambled about this in the LTS forum, and I figured I should reach out to the larger audience here.

For almost 30 years I have been living with a series of 21 CSF shunts to treat obstructive hydrocephalus that presented during adolescence.  Three weeks ago I had what I hope will be my last procedure, an endoscopic third ventriculostomy (ETV), in lieu of taking on more plastic which my body would reject in time.  During the six-week wait for surgery and the days since, I have been exploring online communities for people with hydrocephalus and their families, and I have been stunned by differences between those groups and the activist HIV community of which I have been a part for over 20 years.  There's been so much about self-determination and challenging the medical establishment (substituting Big Pharma with shunt manufacturers) that I've found myself transfering for life with HIV to life with hydro, now that I have had the condition become more present in my life.

I'm particularly looking forward to attending the annual meeting of SF-based The Hydrocepalus Association in June in Park City, UT.  As atypical as my experience of multiple shunt revisions may be, so many of the parents of hydro kids and all of the hydro teens I've encountered are refreshed to know that someone can have the condition and so much work to manage it, yet still lead a productive and fulfilling life.  I caution using the term "normal" as I have been careful to avoid mention of my queerness and my HIV status so far, though I am eager to let those I meet face-to-face know that my life and health are a lot more complex that just living with hydro, and that I am exceedingly happy and freely contribute to all of my communities.

"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!


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