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.

Post-Op Update, awareness items vs the economy

Later this week I'll be 2 months post-op from the artery surgery.

In terms of surgical healing, it's going pretty well. The incision is closed and looking good. The left side of my neck, jaw, shoulder, that entire region just aches all the time. It's not anything that is concerning and I'm sure will continue to improve, given adequate time with the Ehlers-Danlos.

My pain issues, artery region aside, have not changed. I am taking more measures immediately after I get off work at 10 a.m. to try to prevent the pain from becoming completely over the edge by evening since it always worsens as the day goes by.

I am due to have an MRI next month to check on the growth that's pushing in my cerebellum and shoving it back down my spine. It can't be done any earlier since I'm not far enough out of surgery to get a real accurate look.

For the last two months or so, I have really noticed the impact the economy is having on my Chiari/SM awareness items sales. My CURE CHIARI awareness embossed wristbands sales are definitely low. The website sales (Chiari, Chiari 0 (zero) Herniation, and Syringomyelia awareness items) are low as well BUT things are still moving, just at a snail's pace. I know things will pick up at some point but I feel badly for not being able to donate as much to the American Syringomyelia Alliance Project and Wishes & Rainbows. It will get better though!

DS's Babette blanket is coming along well. Today I began work on Panel 9 so if I round up any amount of self-discipline, the rest of the squares should be completed in about two weeks. The contest is going well too; as of now I'm in the top 10 (out of 307) for vote ranking, though not quite as high in the page view rating. I just keep thinking of all the preemie and newborn caps I could make for little NICU babies with a prize gift card from the yarn manufacturer! Thank you to everyone who has voted so far! The contest goes until February 25 or so.

I'm attaching some pictures I've taken the last few days, just thought I'd share.

One NY update

I was talking to a good friend today about the conversation I had with one of the neurosurgeons in NY who called earlier. He couldn't believe about yesterday. He said the thoracic outlet surgery has to be done, but that if the cardiothoracic doctor said he wouldn't do it wouldn't of the Ehlers-Danlos, then maybe he was doing us a favor and we'll just find someone else.

He emphasized that leaving this alone is completely not an option. He said the two of them that I saw the last NY visit were "impressed" with the symptoms I had from it. (All they told me then was they were sure I had it and I needed to call a surgeon when I got home; if I knew the extent then I wouldn't have put it off for 2 months.) Hee said leaving this untreated is serious enough that it alters the vascular, arterial, and the neurological system. He said it's the first thing that needs taken care of right now. I didn't expect that.

Today's Brain Droppings

I seem to have fallen into the black hole of sleep-ville the last couple days. I hate when that happens, when I go to nap and just can't get up again for 16, 18, 20 hours? At some point I moved from my bed to the couch but not sure why or when.

The kids started baseball. This is DS's second season, DD's first. She is doing fairly well, considering she doesn't have a clue how to play. Coaches A and J will get her on track REAL quick. I requested them for a reason. Now to just try to get her a nap on baseball days is another story. Practices are twice a week and boy does she ever need the naps, especially those days. She is having a hard time getting through the last 20 minutes or so of practice. She got a good hit on a coach-pitch that surprised me.

DS seems to have held up well over the summer. Due to the heat, he didn't play at all. He got a really good hit in and I'm sure he'll be back in gear in no time. His arm is looking pretty good, typical Gumby-boy. He ankles, knees, and now elbows are joining in on the rest of his pops.

His orthopedist had offered to do an MRI immediately a few months ago and said he totally supported it, that there was good reason. I asked to wait. He agreed but said to give him a call in 3 months and check in on how things have been.

What is sticking in the back of my mind is wondering if I should let the ortho go ahead and do the MRI. If he does have am CM+EDS combo instead of "just" (just? sheesh) straight EDS, we could get someone lined up to monitor him. If not, it would certain be fantastic, I love his orthopedist and am comfortable keeping DS in his care for ortho monitoring.

My concern is admittedly personal. If I won't be around, I won't be here to get him to the right team, etc. That's not something I want left for DH to deal with. If there is something to address, and I find out now, I will feel more at peace knowing he is in good hands and there aren't unanswered questions.

Thoughts?