2nd procedure

Wednesday I had the other procedure done. I had some diverticulosis, which surprised the doctor since apparently it's rarely seen in someone so young. Another area had a 'cobblestone' appearance to it, which is a common sign in Crohn's disease, so it was biopsied to check for that. I'm to call the office on Monday to go in and see her this week to get the result of the biopsies from this and from Friday's thing as well. I'll post some pics & descriptions below.

Just a reminder from those newer to the blog, but I have had a CafePress site since Christmas Day 2004. Wow, time flies doesn't it? There are lots of things to pick from to spread awareness for Chiari & Syringomyelia, for both patients, family, and friends. 100% of profit goes to American Syringomyelia Alliance Project, a 501(c)(3) who awards a $200,000 research grant every year, and publicly releases its findings. As you are likely well aware, the government has fallen far behind in helping fund a cure; more people have CM and SM than MS, Parkinson's, ALS, and Huntington's Chorea put together, yet those disorders (which certainly need as much research as possible of course) have had a couple hundred thousand research grants funded by the government, while CM & SM have had ELEVEN. Not eleven thousand. 11. And those were completed by the same 3 researchers (no fresh minds or ideas brought in). This is where ASAP has stepped in; they are funded largely by the public, so projects such as patient fund-raisers like my own, going strong for 5 years now, are critically important and support from people like you mean the world.

When you shop at my store, not only do you spread awareness when you wear or use the items, you directly fund a cure for these disorders, as I give the profit to the Research Fund. All you need to do is look at the side of the page and click on the graphic for CafePress.

Diverticulosis


Cobblestone Appearance, possible Crohn's


Esophagus Rings, sign of food allergy disease


Gastritis, red inflamed tummy

As the stomach churns

Dr results from Fri p.m. appt: said if I was his daughter, he'd be worried. In a nutshell, he ordered colonoscopy, endoscopy, h. pylori breath test, CT w/iodine, abdominal ultrasound, blood draws, referral for gastro doc. Not a happy camper. Speaking of which, scout camp starts in a few hours. Hopefully we'll find it. Never received directions.

Brain & spine hardware rejection, depression & denial

Earlier this week I was to be seen by a neurosurgeon on his very first day in this town, but he unfortunately did not make it to town yet. So I am seeing someone Monday instead. It is in regards to how my brain is rejection of its 5 inch titanium plate, my spine's two 18 inch rods, and the 36 screws. The rejection has caused my 3 inch loss of height in a six-month time period, which at least shrinking doesn't hurt; the problem with it is that my shrinking is because my loss of 3 inches is because the 3 docs that have reviewed my imaging have determined the only way to lose 3 inches is to lose every bit of space between all vertebrae in the entire spine, from head to tailbone. In other words, they were all able to see that every single vertebrae in my spine is sitting directly on top of one another. From top to bottom all of the vertebrae are rubbing on each other instead of having the usual disc space that allows the spine to flex with the body's movements. So every time I move, all of my vertebrae just grind together, which is the reason I now have so many bone spurs throughout, from the constant bone chipping.

We're also going to discuss the increasing problem with my ICP (intracranial pressure). I'm having more and more episodes of high ICP; for those unfamiliar with it, having high ICP results in problems such as hearing loss, pulsating loss of vision, and vomiting if you move your head as much as two inches slowly in one direction. High ICP puts a huge amount of pressure in the skull, in the brain's blood vessels, crushes brain tissue, shifts the brain out of place, restricts blood flow to the brain, and worsens Chiari herniation (which of course can then impact brain stem responsibilities such as pulse, blood pressure, etc). Normal ICP is 0-10 mm Hg on lumbar punctures; on my 14, I've always fluctuated between 12 and 26. NY was going to do an in-patient monitoring for 2-3 days but that went out the window when something else came up. I've only had instant access LP readings, not the 24/7 intracranial monitoring, where they surgically implant a probe in the brain for a few days to have that 24/7 access to CSF (cerebrospinal fluid) levels. Obviously my levels have never been normal but I'm guessing before moving on to correct my ICP once and for all, that will likely need to be done.

Tomorrow evening I see PCP for stomach junk; this week puts me at a 28 lb loss, so I know I can't avoid it any more. This scares me more than the rest. It's unknown territory. I have no idea what it could be. Have I screwed up something with the piles of meds I've taken the last 5 years? I've already gone to the PCP twice about this but he pretty much brushed it off (this was a couple months back and not quite as severe as it is at this point) as the Chiari, or the meds. That makes no sense to DH or myself since I've had CM for years and been on the meds for years as well; people don't just lose this much weight in a couple months, have vomiting, inability to eat, abdominal pain, etc. And PCP just had to make that passing question about wondering if I'd had a colonoscopy before, saying if it kept up that'd be the first thing he'd personally check, so that's been in the back of my mind, wondering about colon cancer and God knows what else.

Honestly though, I think with everything that's gone on the last year, part of the reason I haven't addressed the health stuff, is with everything added together, that and the frustration of the other ongoing situation, I can finally say I know I should accept some help with it all. But I don't know if I care enough to take that first step and do something about it. It's not like if I go on anti-depressants I'll suddenly be free of disease, surgeries, intractable daily pain. So it's hard to find motivation to admit the need.