Posts Tagged ‘Spine’

Medless

Thursday, December 15th, 2011

No medicine

I will explain the title of this post in a minute, but there’s so much else to catch up on. Where do I begin?

This year has been so full of change that it’s hard to know where to start. Those of you who read my blog regularly know that my family and I moved across the country back in September. So far, it has been an incredibly positive change. I can’t even begin to express what a difference it has made in our lives to have supportive family around. I can bring my son over to my parents’ house and go have a long, luxurious lunch with girlfriends. My husband and I can go out on dates. We can get to my doctor and hospital visits without bringing our son or worrying about who we can get to watch him. Best of all, my son is thriving, and his bond with his grandparents is a truly beautiful thing to see. There are negatives, too – we miss our old friends, and the cold weather has been a rough adjustment. But on the whole, it’s been wonderful.

My health has been confusing. For a long time, the only real symptoms I’ve been having are terrible headaches and some weirdness in my fingers. I finally had an MRI and they found damage in my cervical spine, which may or may not have anything to do with the RA. I had two cervical epidurals, a month apart. The first one was amazing – I was totally pain free for almost a month! I really couldn’t believe it. When the pain started coming back, I had the second one. Then, unfortunately, I fell down the stairs a few days later and was so banged up that I couldn’t really tell if it had helped or not. I did know that I was having headaches again, though. I went to the pain management doctor who had done the procedure, and he checked my range of motion and nerve function. He concluded that the epidurals had done their job – the problems in my hands were completely gone – and that the headaches were coming from something else, most likely muscle tension. So I’m going to see a headache specialist in January. On the bright side, he prescribed some Zanaflex to tide me over and it really does help when the headaches hit – looks like his theory is probably correct.

Next came a good news/bad news kind of situation. For the past week or so, I have been experiencing terrible pain and a new level of fatigue. My feet have been killing me, and pain radiates from my back all the way down my left leg. It was frustrating to find myself limping around again – it’s been awhile since I had lower body symptoms. So I saw my rheumatologist yesterday. The good news: my bloodwork looks great, and he couldn’t find any joint inflammation at all. The bad news: he thinks this may mean that I have now developed fibromyalgia. I am very resistant to this idea – I really, really don’t want another chronic condition! Anyway, we are holding off on drawing any definite conclusions for now. After all, I did fall down the stairs a few weeks ago, and we both want to see how I do after some more time passes. In the meantime, I want to see what massage, gentle yoga, and good sleep can do for me.

Okay, so now on to the medless part. My husband and I have decided that we would like to try to have another baby. We talked to the rheumatologist about this yesterday, and he approved. My RA seems to be in a really good place right now. It’s possible that it’s been in a good place for quite awhle, and that the headache and muscle pain were confusing the issue. So right now we are in the process of stopping all of my medications, with the exception of Pulmicort for my asthma, and seeing what happens.

Being medless is weirdly exhilarating, like hang-gliding. I push off from the cliff and hope that my remission-like state holds me up, at least until I become pregnant. (I went into remission when I was pregnant with my son, so I’m hopeful that it will happen again.) The freedom is dizzying – no more med side effects, no more panicking if I forget my pills. There are still vitamins to take, but it’s not the same. My med-free body feels great, healthier. At the same time, I know that like hang-gliding, it’s risky. It’s a race against time, and one that I can’t be sure I will win.

hanggliding

When Necking Just Isn’t Fun Anymore…

Wednesday, September 7th, 2011

Spine

Cool, huh? You can see my BRAIN! (Unfortunately, you can also see the fat rolls on the back of my neck – thank you, prednisone!)

So this is one of  many MRI shots of my neck. This one is pretty cool because you can really see the problem, which is right here:

Spine copy

C5 and C6, right in the middle of the picture – out of alignment, with bone spurring, and bulging a little bit into my spinal column. You can also see the problem in the X-rays, although they don’t show the spinal column issue:

Xray copy

There’s almost no space between those two vertebrae, and they are rubbing unpleasantly against each other and pinching nerves when they do. The spine guy said that he sees two different problems – one with the space between the vertebrae, and another involving arthritis of a facet joint. They are manifesting as two different sets of symptoms. The facet joint arthritis is apparently the culprit behind my miserable migraines; he was able to duplicate the problem in his office (which, unfortunately, meant suffering with the headache all day yesterday – ah, science!). The  nerve being pinched between the vertebrae is causing sensation loss in my right hand, which I hadn’t even noticed until the doctor did some tests yesterday. Ironically, I’ve been noticing a loss of function and dexterity in my LEFT hand when I play the piano – no clear explanation for that – and problems with my left wrist, mostly from a ganglion cyst. I guess they caused me to overlook the issues in my right hand!

Anyway, all of this isn’t that terrible. There are much worse things that can happen to a neck, and the doctor says this is pretty normal stuff – not even necessarily caused by the RA, although the RA certainly doesn’t help the situation. He has two different solutions for the two different problems and is going to start with the easier of the two - an epidural steroid injection, done in the OR under fluoroscopy. This doesn’t sound like a lot of fun, but I know people who have had them, and they really seemed to help. He thinks that this will take care of the hand, arm, and shoulder symptoms I am having.

Taking care of the headaches, however, could involve a facet joint injection, which might mean cauterizing some of the affected nerves to kill them off. This doesn’t sound like as much fun. Right now he’s planning to hold off on this – it’s possible that the epidural steroid injection will also help the headaches, so we’re going to give that a shot first. (No pun intended.)

I’m really not thrilled about any of this – shots in my spine don’t sound like a ton of fun. I’ve had steroid shots in my sacroiliac joints, feet, hands, and wrists before. But my neck? Ook…

I would love to hear from any of you who have had this sort of thing done!

And, just to leave things on a more fun note – one of my favorite MRI pictures! Is it me, or an alien? You decide!

alien

Changes

Saturday, September 3rd, 2011

There have been so many major upheavals lately that I don’t even know where to start. This has led to a kind of writing paralysis, and therefore silence on the blog. So let me try to push through it:

We have, at least for now, relocated to the East Coast. My family is out here, so we have much more support, help with childcare, etc. I don’t know how long we will be here – it depends on several factors. We came out here mainly because of issues with the RA. I have some nasty little things going on with my cervical spine, and I wanted to see a really great spine specialist to deal with them. There’s also a great rheumatologist out here, and I’m hoping that he’ll change things up and maybe get me closer to that elusive remission.

Also, Remicade Dream now has a fan page on Facebook! I am clueless about how to use this page and how to get people to “like” it. If you’re a regular reader, maybe you can “like” it, and let me know if you have a page too!  My page is at:

 http://www.facebook.com/#!/pages/Remicade-Dream/142092942551992

I’m seeing the spine guy and the new rheumatologist on Tuesday, so I’ll check in after that and let you know how everything goes.