18 replies to this topic

[GiaCat21]

Hey Gang-
Looks like my mom and I will be driving to Bethesda come May... There is a surgeon out there who wants and thinks he can help me... He feels I have a bony deformity (well duh, that IS what a chiari malformation is) and cranio-cervical instability/settling. He wants to see me for a consult and then he would do the necessary surgery in one shabang (very likey a cranio-cervical fusion, and dural graft replacement). Ijust have to come up with a way to pay for him... My friend is coming over this week andshe was going to help me brainstorm fundraising ideas... I'm thinking silent auctioningoff the jewelry that I make and contacting the area paper to get donations sent in, like stuff from local vendors to sell and raffle off. Till I get out to Maryland looks like I'm stuck on a kabillion pills (actually counted and I take over 20pills a day) and in the neck brace (big whoop there... had that sinc 2006) and chair. But am very excited about the potential that this has for me... I'd like to start up college in the fall and earn a degree in French and a PhD in pyschology... But atm that's not really possible (not even online school d/tmajor brain fog). Will letyou know what develops as May draws closer...
Lex

[MoonChild]

Good luck Gia.

[GiaCat21]

Thanks moonie... We're going tohave my PCP write a letter to a guy in Iowa that I've seen three times and he said he would fuse me then changed his mind... A last ditch effort to get someone in our insurance to do the surgery. But my gut is telling me he'll say no (again) as I have a big red "lawsuit" stamped upon my head...

[GiaCat21]

And the saga continues.... I go to the neurosurgeon who put in my pump tomorrow because it is flipped and rotated and the tubing is kinked... They'll have to open me back up and redo the whole pump... Oh joy... NOT!

[MoonChild]

Sending healing vibes and get well soon prayers!

[GiaCat21]

Thanks moonie... I should get a surgery date for the pump revision next week... Cigna and medicaid have to approve it first (because with my health issues it's not just a simple outpaient but they have to admit me over night). Will let you know when I get my date.
In the meantime I'm working on collecting letters from my docs to send to Iowa City so that guy will fuse me... I'm even willing to redo the dreaded Tilt Table (it provokes a faint in people with autonomic dysfunction) with the collar and without to prove to him that this drastic measure (fusing my skull and neck together) is necessary.

[Seer]

Good luck Gia,

I just saw a fundraiser that might work. People will gladly donate their pennies. A penny fundraiser can bring in more than you would think.. Get your friend to help organize it.

[GiaCat21]

Thanks for the idea Seer... I'm waiting on gathering doc notes to send with my letter to Iowa City before I attempt fundraising to get to Bethesda... I want a firm no out of Iowa first.

[GiaCat21]

So my neurologist is going to talk to the interventional neuroradiologist and see if we can't get the flexion/extension scans done with me totally sedated and paralyzed... If that would be safe. My guess is no, because it'snot good to have the blo supply to your brain cut off. I go to cardio on the 16th and I'm having her the TTTs in my new collar and out to show that my orthostatic tolerance is GREATLY improved when my head is up where it belongs.

[LycanGhost]

Stell, I'm more than willing to donate the money from the jewelry I sell if it'll help defray some of the costs. Let me know if your interested.

[Cryscat]

Best Luck to you! I hope you really get the help you need!

[GiaCat21]

ThanksLycan but now I won't be having surgery for probably another 6-12 months... I've been in the hospital for 2 weeks. I'd been having ALOT of convulsions and ended up admitted the last week of February as they wouldn't stop and my PCP had given me 4 mg of ativan IM and 30 mg of valium... So she called 911 (I was in the nursing home for respite care).
I am (finally) getting to go home tomorrow.... I've now been diagnosed with Pseudotumor Cerebri (my intercranial pressures have been 40+ with my 3 lumbar punctures and should be between 7-15). I'm supposed to go to University Hospital to have slits cut in my optic nerves to try and relieve the pressure.... If that doesn't work then I have to get a shunt... I can't take any of the meds used for this as they are all duiretics and bottom out my blood pressure.
Obviously this now takes precedence... Looks like I will be putting off going back to school for another year..

[Night Star]

You poor dear. You've sure been through a lot already. You have my prayers honey. Hang in there!

[LycanGhost]

Ouch, Stell! My thoughts are with you. I'll ask my coworkers to keep you in their thoughts and prayers as well. I've already told them a little about what's all been going on, since I wanted to bring in the jewelry for the fundraiser to work.

[LycanGhost]

Stell, is there anything you'd like me to put on the sign I'll have with the jewelry? Background info? Just curious, since my work is a tad persnickety as far as fundraisers/selling things goes.