Spine in my Esophagus

I thought I'd heard it all. I didn't think there was anything left a doctor could tell me that could surprise me any more. Wrong. I have been seeing a spine surgeon because of my hands having difficulty gripping and picking up things again, especially the left one. My c-spine hasn't been checked in a little while so it was time for a look anyway as that's the area that controls the hands, though there was the possibility of it being scar tissue growth blocking up the arteries and nerves again for the Thoracic Outlet, so one step at a time to rule things out.

This group of doctors has their own MRI so I was able to get in pretty quickly, and get back in for results a few days after that, which puts us at last week. Let me explain just a little of what you are seeing: you will notice that the spine consists of vertebrae that basically look like little square boxes. Sure, the lines are a wee bit sloppy, but squares all the same. You with me? Now look underneath the hardware. There are two squares there that are WAY out of whack. Both of those squares have one side that is nothing like a straight line. Instead, there's a huge pointy object sticking out of each vertebra. That's not normal, nor is it good. Those points are shoving straight into my esophagus. Directly on the other side of the vertebrae, my spinal cord is being shoved into. That isn't news, but it has definitely gotten worse.

I now have an explanation why my hands have progressed. I hate it but having Ehlers-Danlos and so many surgeries means when part of me isn't working so well, whether due to EDS or because it's been worked on, I've learned to use others to get by. There is no use wasting time whining about it.

The progression in the spine doesn't surprise me. That my esophagus has pointy pieces of bone pushing it in, yeah that came out of nowhere. The surgeon and the PA explained this is why my voice cracks so much, why it's scratchy and has to be cleared a lot, etc. It makes sense, given I have a spine in my esophagus.

The spine surgeon is calling one of my other doctors to set up a spinal cord procedure. We'll see. I don't know what to think. It's really a temporary band-aid but I have to try because I can't keep like this. I don't know how long my esophagus can stay like this though and that's another big concern.

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.

Doctor and x-rays

I finally gave in to my leg pain from the last couple months and called yesterday for an appointment with my PCP. I expected a couple week wait but they said to come in last night. I left at 8:30 p.m. with a script for femoral series x-rays and for an MRI.

They suspect either a) I injured something in a fall or during a seizure, or b) like the doctor earlier this week said, a tumor or other such problem with the bone itself.

Now the waiting game.

Pics

Here are the pictures I've been promising people lately. Sorry it took so long but we got a little sidetracked by the unexpected week in-patient.

The Shawler I made. The pattern is courtesy of Shelle Hendrix Cain .


Me after I got home from my tv makeover.


Gizmo wearing a baby cap I crocheted.


Shelby, who has obviously become quite comfortable in her new home.


My son's birthday, decked out in Harry Potter Gryffindor attire.


Cap and booties recently made.


A teeny teddyghan from the pattern found at http://www.angelfire.com/ca2/Jeanaries/Teddyghans.html


Daughter's kinder graduation.


Meg's kinder graduation.


A pic a friend snapped of me after waiting 3 days for an MRI. Turns out I'd been "lost" though I didn't know it.

Tornwaldt cyst update

I saw the ENT this morning and we can leave my Tornwaldt alone! He ended up scoping my nose and throat while I was there. Boy that is one funky-feeling test that I never want to repeat! So he got a much better look at it with the scope on the screen than on the MRI's. It actually looks to him more like a cluster of adenoid tissue that has grown back and for whatever reason is retaining fluid right now. It should be ok.

I had a hearing test immediately at his request and it went fairly well, nothing big enough to do anything about. I knew my hearing was different since the meningitis but that's a really common side effect.

I'm being scheduled for an ENG, where they'll put fluid in my ears and intentionally make me dizzy. I don't know yet when it is as they said they are booked out for a month for this test. That's fine with me since they said I'm required to have someone drive me as I'll likely be extremely dizzy and nauseated the rest of the day, and Sterling will need some warning to take the day off.

My grandma and my aunt Debbie flew to AZ due to my aunt Cyntitha's death on Monday. They came to spend the day with me today, which was wonderful. I love them dearly.

Off for now.

Testing, testing 1, 2, 3

I have my tests tomorrow. It will be a several-hour affair, given the two MRI's, the bone scan, and the type of x-rays that are being done. I have an appointment for all of them except the x-rays. That's a take-a-number thing where the wait can be an hour to get in.

I dread the testing but I know it's just the way things are. Since I had my original craniectomy expanded, MRI's are very painful. It feels like my brain is setting directly on that hard table. A brain MRI can wipe me out for the next couple of days, let alone two in a row plus a bone scan. The x-rays, while not too painful, is more of a problem with the Ehlers-Danlos. My x-ray series always includes checking my retroflexed odontoid, which is imaged by them taking the shot with my mouth open as far as it gets so they can see the positioning of the bone better. However, having EDS, it makes my jaw dislocate on one side and is very painful to do a rapid reduction/get it back in place.

I called my urologist's office today twice but the lady at the front desk didn't return my call. I really need to get this taken care of before we leave on Friday morning. Not returning my call doesn't bode well for that.

New York, Chiari Institute, Testing

I spoke with my NY nurse yesterday and today. On Tuesday I'm going to my local radiology facility for a DEXA bone scan, x-rays of the cervical spine, MRI of the c-spine, an and MRI of the brain.

Two days after that I will be 3 months post-op from my arterial surgery, so the imaging should be good and accurate. A bonus is I have to stop taking vitamins and minerals for the rest of the week!

Other than that, the situation is just lousy in general. I dread the whole darn thing and what will come afterward.

Son's MRI; Babette blanket

My son's MRI is scheduled for next week. I'm glad to have it done before I go to Baltimore for surgery a few days later. I admit to being unnerved and fearful last night when he came out of his room to tell us matter-of-factly about having pain in his chest. That was a first, at least he has never told us before of chest pain.

I had PT this morning and am glad it's almost done. On the other hand, that also means surgery is around the corner.

I finished crocheting all the squares for the Babette blanket---well over 100! I marked the progress chart toward the bottom of the blog to 95%. The other 5% I am reserving for the process of attaching them all together. I am putting a picture here but it's a little misleading. It only shows panels 1-8 because my dinner table isn't big enough for 9 and 10, the final two panels. I'll post another picture when they are all connected, and another after I add a small finishing border to complete it.

Son's doctor appointment

I took my 6 year old son to the pediatrician this morning. His headaches used to be occasional and he didn't need anything for them. Lately they have been occurring more often than not, waking him up, and asking for something to make it go away. That says a lot to me because he gags it down, it tastes so bad, but he's now willing to do it.

The pediatrician was less than thrilled and is rush ordering an MRI under sedation. Hopefully insurance will approve it without a fight and we can get this over with as soon as possible. If it's CM we need to know, and if it comes back clear then she said she will treat as migraine. I will of course get a copy of it and ask my NY RN if she can run it by the NSG's for me.

Universal health care. Dying for an MRI.

http://tinyurl.com/2epo4y

Girl dies of brain tumor after doctors tell her 'headaches are just stress'

This 22 year old in the UK died after waiting 13 weeks for an MRI. She didn't make it to the test, never found out about the brain tumor that would take her life.

I am not saying I am for universal health care. If you know anything about my situation, then you know things in the United States aren't so hot either. There has got to be a better way, something better than both of these. I'm not pretending I have the brains or skill to pull this off. There are just so many things wrong on so many levels with both systems, and I fear it will get far worse before it gets better.

In any case, it is inexcusable.

So long old Chiari blog

The entire site where I had my blog is going to shut down. They are switching the blogs to another location entirely and I do not like it whatsoever. Instead of copying and pasting hundreds of posts over to here, I'm basically starting over--no worries though, I have a copy of everything I wrote!

To get things started, here is my last entry from the other site, done yesterday.

Wednesday, May 16, 2007 at 3:03 PM PDT

These were all done this morning.

We are having quite a downpour right now. What a nice change.