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.

Just Walking is Hard to Do

While the vast majority of my spine surgeries have been on the c-spine (cervical), I did have surgery for Tethered Cord Syndrome (my form of TCS is also referred to as tight filum terminale) that was a bit difficult to fix thanks to a benign tumor getting in the way of everything.

For the last week I have been having excruciating stabbing pain in my lumbar region, and it has worsened daily. It has become severe enough that my DH took the last two days off work without telling me beforehand because he could see how badly things were. These last two days have been extreme in terms of pain and limited mobility. If I try to move my upper body just a couple of inches in any direction, the screaming pain makes itself known. Leg movement does the same, so walking must be done with great caution and only with small and the slowest of baby steps.

Yesterday I called the spine doctor I see here in Tucson for an appointment (I see him when I want an opinion on what my neurosurgeons in NY say) but he cannot be seen until Tuesday. I called back today and there is just no way around the wait. In the back of my mind I am afraid of there being damage to the area that was worked on for the TCS. Will I do permanent harm if I wait until Tuesday? I hate going to the ER but in the back of my hole-y head (must maintain humor, & thx to my permanent craniectomy I DO have a hole in my head) I can't help but think this time it might be warranted to make sure the EDS isn't making the spine deteriorate any further.

Ehlers-Danlos sucks.

MRI Results

I went to the doctor yesterday and he already had the MRI results from the day prior. The same as most docs, he does not view the images himself and simply goes by what the radiologist says. For that reason, a cd of the MRI is being sent to NY today for review since local docs often can't tell their head from their ass end when it comes to things like this.

My L4-5 are out of place and pushing into the spinal column, thus the referred nerve pain in my left leg. I'm not a surgical candidate as I barely have any L4 left after last year's detethering which involved not only cutting the filum terminale (sending my cord flying up an instant record 2 inches), but also extensive laminectomies on L 2-3-4-5 to get to FT, first requiring removal of a tumor directly on top of the area getting in the way.

I also started a sleeping pill for the first time. I told doc lack of sleep is nothing new for me but I can't much longer handle the 2 hours a night, that I find myself way too emotional and on the edge in the day time any more and I can't keep doing this. I took the first one last night and what do you know but I slept until 4 a.m. today! Sure beats 12:30 or 2.

Pincushion day

This morning I had my lumbar MRI. I haven't heard otherwise so I'm guessing the x-rays ruled out tumor etc. since I got the call to come in for an MRI. They ordered it without contrast but once the people at the imaging center saw how many spinal surgeries I've had, they showed the doc in charge and he did an override. So, contrast it was.

We headed over to my clinical trial check-up. I didn't realize visit 4 was a labs day. So, there went some blood. The lady didn't do as nice a job as the MRI girl, constantly shifting the needle around, wiggling it, pushing and pulling, trying to get me to bleed. Anyone who knows me knows I bleed like a stuck pig and my draws are notoriously easy...if you know what you're doing.

My chair is going to take longer than expected; it has an expected ship date of July 2.

I hate being stuck in this situation. I need all my brain stuff replaced, need my right subclavian artery fixed, and God only knows what I've messed up in my lumbar where they did the L2-3-4-5 laminectomies, tumor removal, and filum terminale release (followed by 4 month leak).

And of course I was denied a Medigap supplement by the only company that offers one here. Screwed. We can't pay 20% of all of those surgeries, not again. Not an option. Just doesn't seem right to live in America and not be able to get the care needed to live.