OP  Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | It has been a while since I have been here. A lot has happened, I found out that I have Ehlers Danlos. I wish my mom would have explained that here and mine "double jointness' HAS MUCH MORE OF AN IMPLCATION THAT A WIERD HYPERMOBILITY OF MY FINGERS. It can and does cause fluid to very easily move from intravenous to subcutaneous area. My neck dissection back in 2012 would took away one of my jugulars, the left. Noqw my head is the size of a basket ball (it also causes cartalige and bone to be hyperstreachable. my working jugular, somewhat working is leaking into my head. sloswly. Luckily my spinal fluid is leaking from my nose from all the pressure. this is keeping me from dieing from cranial pressure. One of the worst things is that when I cry it just makes it worse (the pressure, somehow. I don't want to tell my mom that the birth defect that she gave me is going to be my demise. But cant a good hospital put in a drain or something. My HMO (Kaiser) will do nothing but give me mesds. should I go to CTCof A thanks for any replies
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
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