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
Shawn, my heart is just breaking for you. I am so sorry that things have taken this turn, and in less than a year! How I hate this %&! cancer for what it has done to you.
I don't have an answer to your question about CTC of A, but the UC Davis Cancer Center is very highly regarded. The specialists you need may not be oncologists for this Ehlers Danlos syndrome, but they would know who to refer you to. In fact would it be possible to just go to the UC Davis emergency room? I agree that it seems crazy that Kaiser isn't offering you any options.
I am praying that you stay strong, no matter what comes --
(((HUGS)))
Lynn
I'm so sorry to read your news sunderwood. This disease just sucks.
I have no idea of exactly what you at going through but my heart is with you.
Have you got adequate pain killers? I imagine you must have severe headaches with the pressure build up. If they have told you that you only only have a short time left have you contacted Hospice for help..
In my prayers,
Tammy
Wow... I am speechless and so sorry.
I wish there was something more they would do for you... Perhaps they're worried about putting in a shunt or something as that could leave you open to infection and cause another whole host of problems. I know that makes no sense, in light of what you are facing but the medical establishment sometimes does nothing as a course of treatment. They could possibly have prolonged a friend's life two years ago by simply putting in a peg to help maintain her weight so she could go through a third round of chemo, but they dallied about until she'd lost too much weight for the treatment. They deliberately did this. I understand that sometimes they think they are helping by not prolonging the inevitable but this should be the patient's choice. I am hoping for a miracle for you and that you are comfortable. Please know that you are loved. Hugs.
I'm very sorry to hear this Shawn, and your suffering. I wish they could do more for you, if not Kaiser, maybe another hospital can, besides CTCA. My thoughts are with you.
Shawn,
I am very sorry to hear about the problems you are now facing. I never heard of Ehlers-Danlos before, but I did a quick web-search and there is a Ehlers-Danlos National Foundation and some info on the Mayo Clinic website.
If it was me, I wouldn't take no for an answer. You need to advocate for yourself and seek treatment elsewhere even if you have to travel. If you haven't done so already, do research and make lots of phone calls. Perhaps a family member or trusted friend could help you with this.
Wishing you the best.
I was wondering how you were, Sean. I'm so sorry to hear your latest news and the prognosis. I can't imagine how you must be feeling, both physically and mentally.
I don't know what I can do from here but if there is anything you think of, please message me.
Ed
Glad I pm'd you, something inside must have prompted me to do so. Wish I had the perfect words. Praying for a miracle. Praying for peace. xo
(((Shawn)))
Thinking of you
praying for you.
Peace
The only thing I can say is that I have heard that CTC of A is a very expensive (for-profit !) corporation, and I have heard nothing good about them.
If it were me, I'd go to a CCC. They are not in any way the same.
Good Luck!
Bart
This was the last day Shawn posted and logged one the site 3-15-2014
What a shame! Usually someone from the family or a close friend will notify me or another OCF member to pass the word.
Rest in peace Shawn.