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Fuckity Bye 2013

title says it all

so here is the deal

Remember when I went to the ER on Monday night and the ER doc gave me Zofran? ENT flipped out this morning. Dr Warren (my Neurotologist) was in surgery, and the other ENT was going to have me cancel my test, and reschedule. I totally understand his reasoning. IF there was a postive result, there was a high chance that they wouldn’t have a clear picture of what side of my body the issue was on. HOWEVER- We were almost postive we knew what waswrong- I have SCDS- which has a very unique set of symptoms unlike any other vestibular disorder. So, the audiologist and I decided to go ahead with VNG – and it was perfectly normal – which means I don’t have a fistula, BPV, or Ménière’s disease – which can be concurrent with SCDS. BUT- they wanted me to wait and see Dr Warren when he got out of surgery. So- I read Bujold’s newest “Cryoburn” – and decided to get my flu shot- and a few other vaccines that I have had orders for for a few months, but never wanted to trot over to Kaiser Mt Scott to get. Got my Chai bought for me by a cute man from South Africa, because I was able to place his accent (Thanks Chris and Mick.) 2 o’clock rolled around and met up with Dr Warren.

What I was told was done, and what he is currently seeing on the CT are not the same thing. As far as he can tell from the CT, my superior semicircular canal was “plugged” with the putty, but he does not see any evidence of “paving” – that the actual holes were spackled with bone cement. So, when I went I started going to the dentist in early August, the vibrations from the drill started knocking loose the putty that was plugging my canal, and fluid started moving through it again.

He is going to do everything in his power to see that I have surgery before the end of the year

There are some details that I am going to leave out of the “public” version until after I have received legal advice, but I definitely need surgery again. Dr Warren recommended I speak to my lawyer, and is going to very carefully document everything that happens during this second surgery, and is going to very carefully compare it to my pre 1st surgery CT, and my 1st surgery notes.

Read between the lines there if you would like.
I guess I'm going to be back posting here for a while. I need a space that is more permenent than facebook, and for some reason, I'm having a really hard time with wordpress on my website.

I haven't posted on my LJ in over a year, although I have been reading, and very rarely commenting.

I'm going to be randomly adding posts and comments from a forum that I am on, so things may look a little disjointed, I'm just trying to gather everything in one place.

I also have my LJ set to autopost to FB,

***


Most of you don't know that I was deaf in my right ear until I was 22, and although I could hear music, I was never able to decipher most speech that was accompanied by music until March of this year. Which is probably why I usually like music with no lyrics. I had 7 months of being able to understand the lyrics to music. It was gone by the end of September.

The risk of my losing my hearing permantly has gone up drastically with this second surgery. I don't want to hear in mono again. I've been listening to music, and that kazoo whistle sound is back, but I would rather have that, for 8 years, that was simply amazing. I don't want to be pessimistic about the whole thing, but I would rather think about it now, and have it be totally awesome when I wake up and everything is normal again.

Surgery

I got my phone call from Douglas County. The Powers That Be have agreed to pay for my surgery. My surgery is set for March 3rd, at 12:30pm.

I am asking people to donate a dollar to my surgery fund, if they are able. The bulk will be paid by the local county health program, but there are odds, ends, and additional testing that will have to be paid for out of pocket.


Since my pockets are already turned inside out, I am asking the world for help. Real healthcare reform is needed in the US, and I am living proof. If everyone I know chips in a buck, I will be that much closer to recovery.


After this is all finished, I will have a 2" titanium plate above my right ear, and symptoms that I didn't even know I was having will be gone. I will finally be able to know what "normal" feels like. I have most likely had this hole for decades, but it took inner ear infection I had in June to expand it to the point where I was extremely symptomatic. 6-8 hours of surgery, 1-3 days in ICU, 10-14 days in the hospital, and 6-8 months of recovery. Let the countdown begin :-)

Please, feel free to pass this along... every $ helps.

Dec. 8th, 2009

In the middle of a blizzard. A real one- "Blizzard Warning" Earlier, the 10 inches dropped were noted as "Winter Storm Warning" - tonight and tomorrow, wind gusts of up to 50mph.

Finally saw the Surgeon yesterday. Now I just wait for approval from the county, and can schedule surgery. It looks to be that the earliest that it will be is the end of February. I will end up with a 2 inch square segment of my skull, and a titanium plate. I forgot to ask Dr Moore if he would take a picture of my brain while he has me all open. I think that would be really cool. I will get to keep the section of my skull, and I am thinking of having it made into some sort of jewelry. Maybe skeletoncrew has a neat idea floating around. I believe that there is someone in portland who does carving in bone- perhaps a pendant would be nice.
Doctor Moore was not present for my appointment. A new appointment has been scheduled for Dec 7th. I am more than a little upset, as I canceled an appointment with another doctor so that I could attend my surgery consult.

Update-

I sometimes forget that there are people who are not on facebook. :-)


Letsee- Last Post was at the beginning of September, the day after my birthday.


Thorn and I saw KMFDM and Angelspit here in Omaha- that was part of my birthday celebrations. I discovered that I can't attend concerts anymore - the music was OK, but the crowd noise was awful. Due to this discovery, we did not attend Lacuna Coil as anticipated.

My father few out to LA to have a bilateral hip replacement. He flew out on a Saturday, with a surgery date of that Tuesday. Sunday, he had a microstroke. He called me several times, and did not know where he was, or what day it was. I finally was able to get through to my sister, and she took him to the ER. The episode lasted almost 10 hours. He had had a few instances where he lost track of place/time awareness, but they only lasted for under 45 minutes, and we were unable to get a brain scan during an episode. I flew out there Monday morning. After consultation with the surgeon, we decided to go ahead with the surgery, as the blood clot had dissolved on it's own, and we felt the risk of surgery was less than the risk of another blood clot from not doing surgery. So- Tuesday my father had a both of his hips replaced, and they had him take his first steps 5 hours later. It is amazing how much the technology has changed since my mother had her hips done back in 2002/2003. Wednesday night, I stole away, and headed down to San Diego for a few days while my father was still in the hospital. It was wonderful to see Xavier, and he provided Sushi, Beach, and "Good Book Talk" - three things that have been lacking in my life these days. On Friday, my dad was released from the actual hospital, but we planned on staying through the weekend at the "family center" and fly home on Monday. Sunday night, I fell, and hit my head really hard on the corner of a reinforced wall. St Vincent's doesn't have an ER, so they called paramedics to take me to Good Samaritan hospital just down the street. I ended up with 2 stitches in my forehead, a third concussion, and some major neck trauma, so we postponed coming home until Wednesday.

For Halloween, Thorn and I dressed up as "normal people" and went to a Texas themed steakhouse, listened to country music and watched football before seeing a movie.

On Nov 2nd, I was accepted by the Douglas County General Assistance Program. This means that my medical care is covered by the county, and that they will most likely be covering the majority of the cost of my surgery, as it is not considered an elective procedure. They will also be covering a portion of my rent and utilities. This Thursday, I see the surgeon to discuss my surgical options. As it looms closer, I am more and more freaked out about having my head cracked open. St Vincent's (where my dad had surgery) is also one of the only places in the country to do surgery similar to what I will be having. Canada sends all their people with cochlear cancer and other inner ear surgery needs to LA. I watched patients walk around the halls, and it was very upsetting. I have no clue how fast things are going to be moving at this point...

I did speak with Dr Moore at the end of September, and he no longer does the trans-mastoid approach, and I am a lot more confident in his abilities to perform the surgery.
I've been 30 for over 24 hours now.

I feel old. Not as in, now that I am 30 I am over the hill, but in a wow- I'm 30 and I have no control over my life, and time is slipping away from me.

My second cousin Steve died of liver cancer over the weekend, his funeral was today. My branch of the clan is close to his branch of the clan, we often do holidays together - his son Nathan is closest to me in age of all the kids of our generation.

So, I drove to Des Moines this morning for his funeral, and got back in time to go out to dinner with a few friends and family members. The service was wonderful- the processional was Peace in the Valley, as sung by Elvis, there was a slide show of pictures to Hallelujah by Lenard Cohen, and the recessional was Soul Man by the Blues Bros. The "funeral food" provided by the church wasn't very good. I've become something of a connoisseur of "funeral food" over the last several years. In the past 12 months, I have attended 7 funerals. In today's preachy bit by the pastor, I learned that we can leave all of our baggage with jesus, and he will look after it for us. There is no need to go to baggage claim and pick it up again. My first thought was "heaven is an airport? - wow- what is hell, riding greyhound?" - and my second thought was what do I say when the TSA asks if my bags were out of my sight at any time, did I pack them, and did anyone ask me to carry anything on to the plane.

I was joking around with my great-aunt Marce, Steve's mom about being 30, asked her about her memories of turning 30 - what was she doing with her life, and so on. She said 30 was hard- then 50 was the magic number. She is now 80ish. I hope I end up as awesome as Marce.
i feel like i only post the bad things that happen over here. that is not my intention, just i really need to dump out my brain.

i have a consult with the local surgeon who might take over my case at the end of september. he has done this procedure dozens of times, though most were transmastoid, while the dr's who i have consulted via the intertubes think that a transtemporal approch would be better due to my previous prosthesis replacing my r incus, but it requires a neurosurgeon to be present as well as the otologist. There are less than 3 dozen surgeons in the world who do this procedure, and i am damned lucky that i went to UNMC's ER rather than any other hospital in town, as they are one of the only hospitals in the midwest with the diagnostic equipment necessary. And damned lucky that the ENT on call decided to admit to run those tests since he worked work with the surgeon in the past and was familiar with the symptoms. I went in because i thought i fractured my wrist. instead, i'm missing a very important piece of my skull.

I'm currently standing at 38 grand owed for the last 2 months.

that is all moot, as i am uninsured, though the wonderful people at douglas county health and human services have done just about all in their power to work the system as fast as possible. the amazing social worker at the hospital opened a preliminary case with social security while i was still in the hospital. this means that my "start" date is that date, rather than the day i get the actual application in, which looks to be in about 2 weeks. my phone interview is scheduled for next week, and i don't even have my app in, or any records sent other than the prelim findings from the hospitalization, although i have had several tests done since.

official findings are dehiscence of the superior semicircular canal, with possibility of "swiss cheese," or multiple holes - basically, the CTs don't show there being a bone between my inner ear and my brain. there may also be a dehiscence of one of the other canals in my right ear, and the bone is very thin on my left. i am not symptomatic on for the left side, but some of the test results that show that there might be a pinhole there. We are not going to worry about the left side. I only have about 60% of my vestibular system working. That is 50% on the left, and 10% on the right.


if you thought that i had dizziness before- ain't nothing like what has been happening since i got back from san diego. i am currently using a walker to get around, as a cane is not stable enough. it comes in waves, and thorn yells at me for moving around the house when i am feeling ok, and then getting stuck when it hits. he is being wonderful. he signed up for bipolar and kooky, maybe a migraine here and there, not vertigo, vomiting,almost deaf, and falling all over the place.

I am so fucking pissed at the universe for throwing this at me now. i need to be functional. my dad goes in for duel hip replacement surgery in september in LA. My mother is very ill with a staph infection in her leg, and there is talk of hospitalizing her for treatment. My favorite cousin is dying of liver cancer, and has less than a month to live. i want to be in 3 places at once, and am stuck here. I can't hardly read, as the words jump around the page when i move my eyes. if i close my right eye, i can see- but that is not a long term solution. i've been watching a lot of back-logged tv and movie I'm currently sucked into Bones and Numb3rs, but sometimes cant handle the sounds. i do better with headphones, and filter out all background noise. yakvomit once joked about writing music only using frequencies that i cannot hear. it would be an easier project now.

ok

/pity party.

updates

I'm currently on Xavier's couch, where he has high speed internet, and neighbors playing Journey at top volume. I fly home to Omaha really early in the morn.

lettsee---

Comic-con was this past weekend. It was pretty ok, the addition of girlracer made it awesome, as usual, even if she did give me her germany cooties. Cash was made, though Money was not, but we will see what shakes loose in the next few weeks from deals that start on the con floor. I was not able to attend the torchwood/dr who panels that I had anticipated crashing, because anita and I took a little longer than anticipated to get going in the morning, and the booth was slammed all day.


Umm... in health news- not so good news-

so- I had a really bad ear infection about a month ago. I fell in the hallway, had a seizure, and Thorn and my Dad took me to Urgent Care. Really bad infection, lots of vertigo, and nausea - doc was surprised that my ear drum didn't rupture. The infection went away with 2 z-packs, but the vertigo and nausea didn't.

Two weeks ago tomorrow, I fell really hard in the bathroom, and hit my face on the radiator, and landed really hard on my wrist. Thorn took me to the ER about 6 blocks from our apartment. Being silly folk- we walked. After a CT scan and X-rays, my cheek and wrist are not broken, but my R thumb is all sorts of fuckered that it can be without the bone actually being broken. About 4 am, we thought that they were bustling around to send me home. Nope- admitting me and sending me to the Neurology ward. Thorn went home, and I went upstairs to the 6th floor. After a few rather awful vestibular testing bouts, a contrast MRI and another CT scan at fry your face off levels of super skinny slices, it turns out that there is a little problem. A .4mm problem to be exact. I have a Dehiscence in my Superior Semi-Circular Canal - which is doctoreese for a little hole in the bone between my inner ear and my brain. http://is.gd/1PkgV- (wiki page)

This is serious. There is only one way to effectively treat this, which is to remove a section of my skull behind my ear, and slap some bone putty on the dehiscence, in much the same way that one patches a nail hole in the wall. I asked if they could paint the walls lime green, and install a flat screen and a wii while they were in there.

They are pretty sure that the hole has been there for several years, which would account for a great many things that I have been dealing with, and that I passed off as just being my klutzy self. - or as another symptom of the fibromyalgia ie: walking into walls, tripping over dust motes, the vertigo that I have around bright lights and loud sounds, not being able to stand the sound of other people chewing, hearing my own voice in my head, really wonky pressurization issues in my middle ear, duel and tri toned tinnitus, constantly hearing my heart beat in my head. I thought that these were normal, or at least, caused by my previous damage in my R ear. This is the ear that I have had 7 surgeries on in the past, including two attempts at an applebaum prosthesis to replace my damaged/nonexistent incus bone.

Photobucket

Red is where the hole is, blue is where my prosthesis is. The entire area is about the size of a dime

This syndrome wasn't even discovered until 1998- after I had my first surgery, and just before the second successful bone graft, so I don't blame my previous ENTs for not noticing it. The imaging equipment needed to see it still isn't standard in most hospitals. On top of this, I still have my normal blood-pressure induced dizziness. I really am looking forward to cyborg brain transplants sometime in the near future. "They" think that the pressure from the infection forced the membrane in my semi-circular canal into the hole, which is what is causing all the vertigo, since the three semi-circular canals in each ear make up the internal gyroscopes that the brain uses to figure out where one is located in relation to the surrounding environment.

In the mean time, I am on a bunch of drugs that help with the vertigo, and am not allowed to walk without my cane for support. I am allowed to drive, if I feel comfortable with the concept. I am also allowed to fly- it just really really sucks. I'm ok if I remain in one position, but every time I change the altitude of my head, I have really bad vertigo. I not only get the spins, but also the sea-wave feeling that is almost worse than the spins. Total awesomeness points for girlracer for being my personal assistant this weekend when I was falling all over the booth.

I have a meeting with a county agency in Omaha on the 7th to see if they will allow me grant moneys to have the surgery- otherwise, well, I'm screwed. So, wish me luck, and write/call/telegram your congresscritters and ask them to support any legislation that calls for a public option, or requires insurance companies to cover people with pre-existing conditions.

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