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Going to Bethesda...


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#16 GiaCat21

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Posted 20 April 2011 - 01:35 PM

Hey!
I know I've been absent alot... Feeling pretty puny atm.
Still manuvering through the BAD_WORD storm that is life atm. We just heard from neurology and he is going to talk to my nsg and possibly try to get me in sooner (I go May 9). We have decided to discontinue the bi weekly lumbar punctures as they aren't helping to lower my pressure (as of friday it's 42... almost 3x the cut off and yet we wonder why I was having sooo many seizures!!) and I feel it's probably contributing to the "aseptic meningitis" and I only get relief post LP for MAYBE 12 hours before I'm back to putting Linda Blair to shame (I'm majorly projectile vomitting... If I'm in bed and don't get the trash bin in time it hits my wall, about 3 feet of nastiness). We are discussing ways to get me more nutrition (I'm going back to GI) as I'm losing 10+ lbs a month... Possibly giving the PICC another go and doing some TPN (my last PICC lasted all of 5 days before being pulled to a 102* fever and high WBC) I'm thinking this is all going to end with my CONTAMINATED bovine pericardium dura patch (MOOOOO! I've only said that it needs to come out since I had bacterial meningitis post decompression, July 2006) being yanked out and getting a VP shunt.... We've also found out that I have MAJOR papilledema (swollen optic nerves) which means that my head pressure has been high for quite some time... My ONs are off the charts swollen and have no clear defination. At least we have an answer for the constant tunnel vision that I've had for 5 years (we kept getting the depression line... Betcha didn't know it can cause BLINDNESS!!).

Lycan-
My mom and I have decided that I'm going to have the shunt placed and then we are going to wait a year after my pressure has stabilized to see someone about my cervical instability... I know that a cranial cervical fusion is in my lifetime but I really want to put it off for as long as possible (when you fuse your spine, because it is a flexible joint, the areas above and below the fusion become more unstable and since I have instability throughout my entire spine that's an issue) because I'm hoping that in 5 years time the surgery will be a bit more evolved. I'm so scared of ending up with a totally fused spinal column by the time I hit my 30s (which would mean no more really cool party tricks). If you are still wanting to sell your jewelry and donate some of it I think it would be neat to donate it to the "Ehlers Danlos National Foundation" (the collegen disorder that I have which is why I have so many health issues).

Hope all are doing well... Or at least better than me!
Lex

Edited by Redhead, 22 April 2011 - 10:18 AM.

Love life.

#17 Redhead

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Posted 22 April 2011 - 10:23 AM

I'm sorry you have to go through all of this baby girl. My heart really goes out to you and I'll be saying extra prayers for you today, Good Friday.
"Never wrestle with a pig. All you get is dirty and the pig has all the fun." ~ Anon.

#18 GiaCat21

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  • Interests:I love to sleep!!! I also enjoy reading, some of my favorite authors would be Stephen King, Anne Rice, and Edgar Allen Poe. My favorite tv shows are Ghost Hunters, America's Most Haunted, I Shouldn't be Alive, anything on the Discovery Health Channel, Myth Busters, Desperate Houswives, Grey's Anatomy, House, American Idol, Trading Spouses, The Simpsons, Family Guy, King of the Hill. But I obviously don't watch any tv. I also enjoy making new, pretty medic alert braclets, and earrings.

Posted 27 April 2011 - 06:51 PM

I saw neurology today and the first thing we have to do is remove my intrathecal diluadid pump and see if my ICP and WBC come down any. Neuro doesn't think it will (neither do I), but apparantly I cannot have a shunt and the pump as the shunt will end up draining the pain meds into my abdomen. We are thinking that this is all going to end with the "icky cow" patch coming out of my head and a VP shunt placment. Neuro says we cannot wait for my pressure to come down any longer as permanent damage from the constantly high pressure is starting to take place (and I'm started to hemmorage behind my eyes.... Spent over ten hours in the ER on Monday because I was 4* above my average temp and the whites of my eyes were totally red along with an increase in head pain).

Not happy to be losing the pump but I do understand that this is a necessary step. I am going to have to learn to live without pain control unless my pain hits a 9 or 10 on the pain scale.
Love life.

#19 Shadowperson

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Posted 28 April 2011 - 02:52 AM

Hey Gia. I hope you well in the future. My own sister is going through some of the same problems with her rheumatoid arthritis. It kicked in early for her due to a car crash and she has to have her spine fused as well but doesn't want to be put under due to her seizures.

But anyways. There's a couple of options if you need money. Just bleed people's hearts. My old applebee's would do a fundraiser night for just about anybody and would donate a percentage of the profits to the person, most applebees will do this if you ask them cause they'll make a huge profit anyways if they say it's a fundraiser and will even advertise for what night it is. Ci-ci's pizza also does it so you could ask them. Also, going and leaving the change collection jars at gas stations can score you a few bucks if people are feeling generous those days. There's all types of ways really, you just have to look and and be creative.
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