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New Princess-Longshot-Anyone with rare Brain Disorder too? (No really, I'm serious!) New Princess-Longshot-Anyone with rare Brain Disorder too? (No really, I'm serious!)

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  #1  
Unread 05-07-2004, 05:34 PM
New Princess-Longshot-Anyone with rare Brain Disorder too? (No really, I'm serious!)

I'm a princess as of April 28. I'm 42, and a laprascopy in January identified massive adhesions of all of my abdominal organs to my uterus which was heading south. An Ablation and some lasering helped until my TAH/BSO and other procedures last week. Doing pretty great I think. I'm not yet saavy with all the abreviations - but I had everything (uterus, ovaries, cervix) removed abdominally due to severe adhesions, cysts, endometriosis, etc.; everything else (stomach, intestines, bladder, vagina, etc.) moved back to where they belong. Started estradiol 2 mg and testosterone today.

I also have a couple of other rare disorders and know it's a longshot, but was wondering if any of my new sisters had any of the same disorders...I had brain surgery four years ago for an Arnold Chiari Malformation and also have Behcet's Disease, a rare rheumetological disease.

I'm trying to sort some of my odd symptoms and would love to connect with anyone who might have some similar issues.


This site, and others like it, are a saving grace to those of us new to this process. Thanks.

Sheree
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  #2  
Unread 05-07-2004, 08:27 PM
New Princess-Longshot-Anyone with rare Brain Disorder too? (No really, I'm serious!)

Sherri
Sorry to hear about your disorders , will be praying for you , glad to hear your surgery went well please keep taking care of yourself and go slow. Lots of ((((hugs)))).
  #3  
Unread 05-07-2004, 09:00 PM
Try another site

Most conditions even rare ones have a website these days and often have boards like this one. Perhaps you could go to one of those site and find others who have the same condition and have had a hysterectomy to compare notes with.
Good luck!
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  #4  
Unread 05-07-2004, 09:34 PM
New Princess-Longshot-Anyone with rare Brain Disorder too? (No really, I'm serious!)

Hi Sheree,

There are some support sites you can check out: (the sites have links for online support or links for support groups)

World Arnold Chiari Malformation Association

NINDS Chiari Malformation Information Page

American Behcet's Disease Association

NINDS Behcet's Disease Information Page

I hope that you find HysterSisters supportive and helpful for your hysterectomy recovery. Rest and pamper yourself.

s
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