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.

Emergency prayer request

Hi everyone. I know a lot of people that read here pray, and for those that don't could I tap into your positive thoughts for a bit?

I just got the call that my dad took a really bad fall while working on their pool and is about to go into emergency spinal cord surgery. I was able to talk to him for just a moment a minute ago. He dislocated a shoulder and did some pretty bad damage to several vertebrae immediately above where he's already had his spine worked on.

He's over 6'4" so not a small man, and he falls hard! I am confident my CM is his from his side of the family and yet he refuses to be checked. He has had multiple failed surgeries (spine, nerve damage, etc) and also will not have my 11 year old sister screened despite being an obvious EDSer. Denial can be ugly and I'm concerned about the potential for complications with this surgery because of lack of accurate diagnoses and understanding.

Thanks. I'll update when I can.

When we fall behind

I planned to spend the weekend in Phoenix as a friend was being thrown a surprise baby shower. I made the trip up on Friday, and I couldn't tell you the last time I drove that distance so it was tiring to say the least. I knew it would be, but I really didn't want to miss this.

I got there, drugged up, and watched a couple of movies with S and her husband (in college, the two of us were roommates in the dorms and the guys were roommates as well).

Yesterday (Saturday) her mom came up and the three us went out. By 11:30 we had been to Babies-R-Us, Target, Dollar Tree, and Costco.

*YELPS*

Thankfully I took my disabled parking tag out of my car and gave it to S's mom to use while we were out. I can't imagine otherwise, especially at Costco (warehouse club).

It became abundantly clear neither of them had any understanding of the extent of my limitations. It was frustrating but what was most difficult to handle was inside, the emotions. S and I used to go dancing nearly every weekend. We would get up at 2-3 a.m. and start snowfights. We played mud tug-o-war. We did several-mile walk-run races, and won, landing us as the town's top 5 o'clock news story.

After all the shopping, and not long before the secret shower, S's mom took us to lunch. Before we left the restaurant, I started getting sick. Literally. I had to force myself out of the restroom for us to leave. The problem?

I couldn't go to the shower, and I couldn't explain anything. I also knew they would be late because of me, though S didn't know about it. Her mom did, which is why she came to town as well.

In tears, I had them drive us back to S's house. I said I didn't want them to miss out on the rest of their "shopping" because of me, but I have this admittedly-weird thing about being sick in other people's homes. It's bad enough and one thing to get sick in your own bathroom but another thing entirely to do it at a friend's. Worse yet, I didn't know S's friend hosting the shower. Sick at a stranger's home? No can do.

I think S's husband was pretty upset and frustrated with me. I could tell by his eyes, though he is too nice a person to ever say anything like that.

And so, I left Phoenix a day early, and missed the baby shower. I feel terrible about it but I know there was no other option. I hope S understands. I wrote her an email a couple hours ago (around 3 a.m., sheesh).

It had been a year and a half since we'd seen each other. I've had I think 5 surgeries since then, most of them pretty serious, involving brain, spine, artery, a ruptured appendix, etc.

Should I have said something during all the running around? I don't know. I don't regret that I didn't. I didn't want to mess up what was supposed to be a special day for her. I wanted to keep my situation as low-key as possible.

S's life has moved on while mine is at a standstill. I just wish she knew, and I don't know how to tell.

Lately I've been feeling strong
And you've been falling behind
Oh tell me what went wrong
'Cus I can't read your mind

-Divinyls, "I'm On Your Side"

Checking in

Thank you everyone for your support lately. If you've known me for awhile you probably know I don't usually just let things out like that and it apparently startled a few people. I really appreciate the kind comments, stories shared, and understanding shown. It's touching and reminds me I'm not alone.

There isn't one certain thing that is getting me down. I just find I'm so overwhelmed I can't think straight. While my arterial surgery 5 weeks ago definitely improved my arm function (what a shock after only having 31% use), I am struggling greatly with the ever-increasing pain throughout my spinal cord. While not 24/7, my head is terrible and my hearing is really off this week again. Yada yada yada I'll shut up.

I'm taking way more meds than I should, but am so desperate for any degree of relief I don't care about potential consequences. I'm going on the theory that if anything happens, God will understand my heart's desire and true intention. Am I getting that out right? I don't know.

I suspect work is going to call me bright and early to give notification on whether or not my position will continue, so I ought to get to bed. Not sure why, don't sleep worth a darn even with all the meds, but curling up under the covers sounds mighty nice.

Checking in

Thanks friends for the emails. Sorry I haven't been keeping up-to-date here.

I'm 12 days post-op. I'm hanging in there. I took my sutures out on the night of day 10, should have left them in longer like I was supposed to. I was impatient and true to being an EDSer a bit of the incision was open the next morning. (Isn't Ehlers-Danlos fun?) It's covered, clean, etc and I'm not worried. The scar will just be worse and at this point it's just one more anyway.

I've been keeping up the happy face pretty well I think. The surgical healing is going well but I've had frequent spinal cord pain that's been kicking my butt and wearing me to exhaustion.

Add to that this cold that I hate to admit I have but after sneezing half a zillion times tonight, it's hard to deny it any more (dang it). I feel like hammered crap. Being in denial somehow doesn't keep colds from getting worse LOL.

Oh, about my 5 year old daughter's CPAP progress: This whole thing started in March, she had sleep studies in August and Oct 1. After the doctor's office sent a partial script for the machine, the home care company had to track down the rest of it herself. The problem? She said our insurance will probably not cover DD's CPAP. I was shocked. She was submitting it anyway to take a chance but she was about to call the pulmonologist and request another prescription. This time, the script will be for oxygen at night; she is sure insurance will pay for oxygen. DD's oxygen saturation levels were around 69%, horribly bad. I am so aggravated. It's unbelievable she may not get the CPAP, as bad as she is. And with a 69% sat level, no wonder she turns blue. The kid needs help and now we are back in the world of insurance idiots.

It's not the end of the world though and life will go on. I will keep sticking with it and she will get the help she needs!

Waiting and spines

I should be hearing back from Dallas any day now. They have been really on top of things but I'm trying to not get my hopes up because I know that doesn't mean they are going to be able to treat me.

My spine in its entirety is wreaking havoc since last night. Around 8:15 I had not had dinner yet and knew I should. I went to the kitchen 3 times and looked in the fridge and pantry but thought to myself, "I can't. I CAN'T." By 8:30 I was in bed. I've been sleeping off and on though from the pain radiating outward from my thoracic spine, grabbing hold of my lungs making it hurt to breathe.