Return of the Tethered Cord; Identical to Stay-Puft Marshmallow Man

I did go to the ER as I discussed in the post below, and as is typical, everyone was clueless. The two triage nurses, the nurse assigned to me, and the doctor, not a single one of them had ever heard of Chiari Malformation or Ehlers-Danlos. It is absolutely absurd that this is still occurring. I have been to this ER many times, as has a fellow patient that lives nearby. Jeez between the two of us, the whole dang hospital should know all about CM & EDS by now. The doctor checked the reflexes in my knees, then told me that because my "...spine was not sticking out of..." my back, that he was releasing me. Yep. There's some brilliant detective work for you. I bet he went to the same medical school as my first neurologist, who told me that because I was in my 20's and female, nothing could be wrong with me and that I would be fine if I just went out and did something nice for myself, like dye my hair.

The Tuesday following I had my appointment with the spine surgeon. He hasn't worked on me before but I see him from time to time because I respect his opinion. He checked my reflexes at the knees and feet, and was very concerned because I had none. Zip, zero, zilch. So he knew I was right and that something was really wrong. He had me in the MRI on Friday. The results were a bit of a surprise.

DH and I returned a few days later to discuss the MRI and I think we were expecting to hear something more along the lines of an injury, since I have fallen so many times lately. Instead, it turns out that everyting recently is revolving around my 2007 Tethered Cord surgery. Dr asked if I'd had a CSF (cerebrospinal fluid) leak after the surgery. Of course I did! I have Ehlers-Danlos, I always leak after surgeries, silly question! He showed me this pocket of CSF next to my L 2-3-4-5. It's been there this entire time. It was at least separated from the spine, so it is not doing any harm. It just kind of upset me that put up with all that pain after surgery from having a spinal headache for six months, when it obviously should have been dealt with. Instead, the team had me do an MRI every month to watch the size of the leak for six dang months. At that point, my appendix ruptured and I didn't know because I thought the pain was just the usual CSF leak pain. (By the time I went to the ER, they were shocked at both the condition I was in, and my demeanor. Not a good situation.) So what's been going on with my spine is not due to my falls, but it's actually because my spine is tethered again.

Yes, it's the return of Tethered Cord Syndrome. For those unfamiliar, the spine floats a little. That floating is what allows us to bend, to reach outward, and to stretch. If the spine was not able to float, we would stop being able to move our torso. We could not bend forward a couple inches to grab a dish on the dinner table; the remote control would stay just out of reach on the couch because we couldn't stretch over to get it. When the spine is tethered, the nerve roots and other tissue grows out from the spinal column, where it belongs, and adheres itself to other parts of the body. Then, when you try to move normally, your spine stops you because it basically is like the spine is trying to be ripped apart. It no longer is free floating. It is chained down and any stretching or reaching movement can cause tremendous pain. TCS can be progressive, often causing problems with bladder and bowel function, syringomyelia (if it isn't already present) which of course a debilitating illness in and of itself, sensory and mobility problems.

That is enough to deal with here. My next post will deal with a new problem, something I've never had before: my feel and ankles swelling up. My kids are calling them "grool," for "gross" and "cool." They're like a train wreck, that freaky looking.

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.