Surgery 16 update, ER trip, seizures & such

I made it through my 16th surgery about 6 weeks ago. I had a post-op check today; it was originally 2 weeks ago but they said I hadn't made enough progress and made me come again this time. Thankfully two weeks made the difference though! My incision is behaving well, contrary to what Ehlers-Danlos would like for it to do.

My seizures over the last year have done nothing but worsen despite getting up to 600mg on Topamax. After things seemed to even out with the surgery, I had Keppra added on to my medication routine a couple weeks ago. I quickly noticed my headaches were increasing, and badly. I developed a low-grade fever and had bruises all over, more than normal anyway.

They hit a peak earlier this week on Monday morning. When I woke up, I immediately noticed the noise in my ears was bad enough I couldn't really understand what my husband and children were saying. I couldn't eat, was dragging, and in tears all day. My husband that night tried to get me to go to the ER and I would have agreed but for the 7:30 a.m. dental appointment both of our children had the next morning; we are losing our insurance this month and this appointment was to lead to dental work, so it couldn't be delayed. He knew though when I didn't fight going in after they were done, it must be bad. I usually save hospitals for surgeries and cut arteries. Our plan was for me to accompany them to the dentist, find somewhere to take the kids right afterward, and take me in.

By morning, the vomiting hit. There was no way I could go along. My friend came over and took me to the hospital while my husband and children were still gone, and stayed at the hospital with me the entire time. I didn't even have to sit down in the lobby, when I told the girl through the window that I'd had multiple brain surgeries and it felt like my ICP (intracranial pressure) was up, that I'd had 24 hours of hearing loss and vomiting, they instantly brought me in to triage where it showed my heart rate was wonky, then straight to the windowed room in front of the nurse's station.

I got the usual lines for fluid, pain control, and nausea control. I went for a CT, had the usual blood and urine tests. In a nutshell, I don't agree with the Keppra and stopped taking it. I also have a urinary tract infection, which of course didn't cause this whole thing, but they said it's severe enough that they wouldn't be surprised if it was adding to the pain. So I'm on 1500mg of Keflex for the UTI as well.

As for the seizures, the thought has always been that they are due to the fact the right half of my brain is tangled up in scar tissue from my 9 month bout of meningitis from the fiasco of a brain surgery at THAT place in Phoenix.

Now though, after a year of not only no response to anti-seizure medications, but continuous worsening of the seizures has my neuros now believing they are originating not from my tangled up right half of a brain, but instead from my equally scarred up brain stem. It does make sense, but it is not really news we want to hear.

That's pretty much all I wanted to update on today. It's been a long week and I'm tired, still dragging from the events of two days ago (my children actually ended up having three teeth extracted between the two of them at that appointment when I was at the hospital, it was bad enough the dentist wanted to deal with it right then and there) so I'm going to sign off for now. There is a whole lot more going on than this, boy is that the understatement of the year, but I'll leave it at that for now. Prayers or thoughts would be tremendously appreciated for our household.

Anxiety

As Monday looms I'm getting nervous about this week, anxious about the dates for the two surgeries. I suspect like last time they'll be sooner rather than later.

Today has been rough. Thankfully a friend from the church I went to is bringing dinner for us. I think my muscles have twisted around the hardware up and down my spine.

Shelby has been very clingy to me the last few days. She refuses to go to bed unless I go as well. She'll walk back with DH, turn around and look to see if I'm there, and then come back out to the living room. She never used to do that before. I really think she can detect seizure triggers, which is good for us to know.

I am very excited for September to come along so we can start our training process for Shelby's certification as an assistance dog.

The kids start the new school year (grades 2 and 1) on July 14, so I will be able to start taking advantage of my ADA-approved eligibility as a VanTran passenger. Shelby and I can go to town on our own and I don't have to be cooped up here all the time. It will be great! I have some eBay stores marked that carry extremely inexpensive tags to put on the assistance dog vests, the tags being marked as assistance dog in training, please do not pet. That will be very helpful.

Speaking of dogs, Wolfie is kicking the stove, i.e. he is telling me he is hungry.

Think brain surgery is scary? Try the medical bills.

It's no secret we owe thousands in medical bills. My husband's insurance wouldn't cover me once Medicare started 12/06. Since they wanted to gladly accept our money despite getting busted for putting a microfilm in my file saying to never pay any of claims again (and to be sure to not tell me about it), the state department ordered them release me from our family's plan.

So, I've had solely Medicare since then. It's great because it's a national plan so I don't have to worry about the fact I receive care in 3 states. The bad part is that Medicare only pays 80%.

Right now I can't think of how many of my 14 surgeries were under Medicare, but I'm thinking it's around 5, including brain and spine work, and some odd work for a majorly squished artery.

Most of my neurosurgeries have run about $160,000 just to stay in the hospital (each time). The surgeries are another story, around $150,000 (each).

Now if you have more functional brain cells than I, do some quick mental math.

See the problem with paying 20% of costs? Every surgery, every admission, room and board, doctor visits, fluid drained off the hip, cortisone shots, MRI's, CT's, DEXA scans...this is the reality of not only my life but that of my family's as well.

We go without to pay off as much as possible. Are we making a dent? Not a chance. But we are doing the best we can. We pull off some great creative meals using whatever is on the shelf. Recently I discovered a Big Lots and their wonderfully cheap ($1 and $2) brand-name cereal such as Honey Bunches of Oats (about the only cereal I can handle).

I have been trying for months now to find a Medigap (aka Medicare supplement policy). What a frustrating journey! I sought assistance from the AZ Dept of Insurance, Medicare, and various other sources. There are plans GALORE for SSDI folks. In this state, there are 10 Medigap policies for people under 65 on SSDI. How many of those 10 have a program in my county? ONE.

Well technically, 2. Both are with the same company. I should theoretically be eligible for a no-deductible Medigap policy but it's $345 a month. YOWZAS!

Option 2 they offer the same coverage but it's $184. The deductible is $1900.

There really isn't a choice there. Things are tight enough as it is and there is no way we can have $345 withheld every month out of my SSDI payment.

I meet on Tuesday with an agent from this Medicare supplement company. I pray it will work out. There is no way I can have my CCF surgery redone without it. Now with this Tornwaldt business etc etc, I've just really got to get some help.

It stinks to have to go without even more around here, but beats adding to the astronomical bills already haunting us.