Professional Patient

P Is for Sjogren's Being a Major Problem

My Sjogren's has really been acting up lately. So I've been doing a lot of homework. All focused on the letter P:

1. Periodontist. My gums have gotten so bad that my regular doctor referred me to a periodontist. A periodontist is a special kind of dentist that focuses on the roots of your teeth (the part of your teeth that rests just a little bit below the gumline). He's expensive. And he's got me trying all kinds of new things to keep my gum disease at bay: WaterPiks, Sonic toothbrushes, special toothpicks... It takes me 10 minutes every night just to do my teeth!

2. Parotid inflammation. Sjogren's causes progressive destruction of the parotid glands, which are salivary glands that sit between your cheekbones and your ears. This fact sheet on mumps includes a great image showing where a parotid gland is. In Sjogren's, your immune system attacks the parotids, causing localized infections and chronic, progressive scarring. Saliva cannot flow easily through the scarred, inflamed glands. The immune system doesn't destroy the parotids all at once, but does so a little at a time, in flare-ups that cause swelling and pain. I had a terrible flare-up a few weeks ago, as a little, hard lump formed behind my left earlobe. I couldn't sleep. Eating hurt. So off to an ENT I went. He gave me some antibiotics, which can sometimes ease the pain and puffiness (if there's an infection in the gland, the antibiotics wipe it out). It helped a little. But I have a new to do: go see an ENT who specializes in head and neck cancer and can offer me routine ultrasounds to keep an eye on my pesky parotids. (Sometimes, cancer cells can develop.)

3. Prednisone. My number one problem with Sjogren's is that it wipes me out. So much so that I can only work a few hours a week, and need ridiculous amounts of rest in between activities of any kind (even riding in the car). My doctor hunted for other causes of fatigue (there is no blood test that will magically tell you "Yes, she's exhausted and yes, it's because of the Sjogren's"). She thought about it and ordered tests for months on end. We haven't found anything else that would obviously be making me so freaking tired. So she decided that a short course of prednisone might calm down the Sjogren's and allow me to feel better. It's working so far, which is terrific. But it's not a long-term solution (long-term use of steroids like prednisone can cause serious problems, such as osteoporosis, weight gain, and diabetes). So now I have to figure out what I'm willing to try next. A stronger immune-suppressing drug? Those can have nasty side effects, too. I guess I will find out at my next doctor's appointment. 

X-Rays: My ACDF/PCDF Journey

I have wanted to post xrays of my various acdf/pcdf surgeries, but hadn't figured out how. Until today! (Place printed xray on doctor's light box or similar, take digital photo, upload photo to blog.)

So here's my neck story, in pictures. The diamond/webbed texture you see in some of the xray images is there because the light box I was using to display my xrays had a textured top. My bones don't actually look like that!

You can click on any photo to view a larger version.

In 2003, I had a 3-three level C5-C7 ACDF (anterior discectomy with fusion) to relieve pressure on my spinal cord from a ruptured disc, along with some nerve impingement from spondylolisthesis (one of my vertebrae had slid forward, out of place) and stenosis (I have a skinny spinal canal). You can clearly see the three sets of screws and plate that were inserted during the surgery.

This is the view from the back of same C5-C7 fusion. As you can see, the plate is held in place with 6 screws, only 5 of which went in (for me - I had a blood vessel in the way of the 6th screw).

Then, in April 2006, over the course of 4 days, I developed severe neck stiffness and muscle spasms that left me nearly unable to move (I couldn't hold my head up... it felt terrible). All the docs I went to assumed it was residual nerve involvement from my C5-C7 surgery, gave me pain meds, and sent me to PT. 

Only in August 2006, after I dragged myself to a new orthopedist, did I get an answer, when that Dr. took the xray above, which showed a complete collapse of the spine above the fusion plate. This swan-neck alignment (this was me holding my neck as straight as I could!) is called cervical kyphosis. My case, having been ignored for four months, had gotten extremely severe (this degree of kyphosis is very, very rare). The doc measured it as being upwards of a 65-degree kyphosis. No wonder I couldn't hold up my head, or move my head side to side or up and down... the muscle spasms had been holding the weight of my skull up for me, as best they could. This is called a protective spasm... when your muscles freeze up to try and hold an injured bone/spine/joint in place.

For comparison's sake, this photo shows what your neck should look like (left), compared to mine as of August 2006 (with the terrible kyphosis).

So, in September of 2006, I went to Johns Hopkins University for two surgeries. The first was an ACDF again, only this time, the doctor had to drill out the old C5-C7 fusion plate and screws, remove them, and put a titanium cage (that cylinder-like thing) in place instead to hold up my neck for me. He then put a larger plate overtop of the cage, and screwed that down.

The second surgery was a PCDF (posterior cervical discectomy with fusion). The surgeon went into the back side of my neck and put in rods and screws to provide additional support for my neck. You can see them more clearly in the picture below. I have to say that the PCDF is the most painful thing I've had done in my life... there is nothing that can prepare you for the sensation of waking up after surgery and realizing that you are laying on your back, feeling all of this new metal sandwiched between you and the mattress.

This is a rear view of the same ACDF/PCDF hardware. You can see two long vertical rods, one short horizontal rod cross-bracing them, several screws, and the rear view of the titanium cage. My doctor would have inserted even more screws than you see here, but I apparently have very thin bone in the location where they normally insert the screws. Too thin, in some places, for them to be able to do it. You can also see from this xray that I have a fair amount of scoliosis in my neck, too... I kind of curve off to the right. That is just my body, and does not have anything to do with the surgery.

Catching Up After an Illness Time-Out

I've been under the weather for nearly 3 weeks now, after catching a bad cold. In spite of this, I've been working my regular schedule and trying to exercise regularly, while handling essential household tasks like cooking and doing laundry. Accordingly, my life has been in "just get through it" mode for weeks... which means I have a heaping pile of "things to do" waiting for me. Ack. Bills, bank statements, a list of doctor's appointments to make, orders for medical tests to take, mail-order prescriptions to send, overdue birthday cards waiting for stamps, my car's overdue oil change, etc. I'm sure you have been there, too. When your health demands most or all of your attention for a while, things pile up. If it's not bleeding or on fire, it has to wait.

So how do you catch up/dig out after being sick/in a flare for weeks? Some tips I've learned:

1. First, stem the tide. If it comes in the mail today, deal with it today (pay that bill, record that bank statement, write down that test result, etc.) If it calls you today (a reminder of an imminent doctor's appointment, a collection call from your mortgage broker, a friend looking for an RSVP), deal with it today. Everything else can wait. (And if it can't wait, it will come to you again in the mail or by phone, at which point you can deal with it.)

2. Gather everything else in one place. I have a deep tray that I pile stuff in. So right now, I need to grab the stray mail off my dining room table, dig receipts and doctor's appointment cards out of my wallet, and put it all in that tray. 

3. Sort through the pile. Divide into categories: things to file, things to read, calls to make, etc. I typically wind up with five piles: read, call, buy, file, do. Things in the "do" pile are all the things left over after the read, call, buy, and file piles are sorted out. 

4. Do the quick stuff as you sort the pile. This is a David Allen/Getting Things Done rule... if it takes two minutes or less to do, do it now (that way you don't have to write it on your to-do list during step 5).

5. Record items onto some sort of to-do list or similar system. I have one list for the items I need to buy. I have one list for medical tasks (things like getting bloodwork done, mailing in records request forms, etc.). I have a set of index cards for calls to make (one card per needed call, with reason for call and phone number to call written down). And then I have my "do" list for everything else. 

6. Arrange lists by priority, if needed. If you have 25 things on your "do" list, you might want to rewrite it in order of urgency/importance. Or if certain tasks depend on one another (I need to start taking prednisone, but first I need to get my flu shot while I'm prednisone-free), you can spell out the correct sequence on your to-do list.

7. Go for it. Start tackling those lists. You will make progress in time. Just continue to remember, the really urgent stuff will find you (in the mail, on the phone, via email, etc.). Everything else may seem urgent, but isn't life threatening. It's waited this long, so it can wait a little longer. 

8. Keep up with step 1, too. At least until you feel reasonably caught up.