Friday, April 11, 2008

Yet Another Weird Twist ...

The twists and turns of trying to figure out my mystery illness just started veering in yet another bizarre direction.

As some of you know or may remember, I was in a car accident in August 2006. I was rear-ended while stopped behind a car trying to make a left turn. The car that hit me was going at least 40 mph. I suffered back and neck injuries that still plague me.

After an MRI to see if there was damage to my spine, we discovered that I have a tethered spinal cord, a congenital birth defect usually discovered during childhood. (Although I've found one research study -- there's so few about TSC in adults -- that says that it can be caused or aggravated by trauma, such as giving birth or being in a car accident. That's their examples; I would never compare giving birth to being in a major car accident. :)

My internist sent me to consult with a neurosurgeon about it, one who I later discovered was rated by his peers as one of the top neurosurgeons in Portland. My internist assured me that he was a conservative when it came to surgery and would not recommend it unless he really thought it was necessary.

At the time, he confirmed that my spinal cord was clearly tethered and was pulled down (my memory might be foggy on this figure...) at least 1 cm, which he said was a definitive amount. Sometimes its a lesser degree and it's not clear on the MRI whether the cord is really tethered, but he said mine definitely was.

I also have a lot of degeneration at the L5-S1 joint of my spine, which is pressing on the nerve both there and the joint above it.

The question then became which problem was causing my back pain and leg symptoms. He sent me to an anesthesiologist, who first did facet joint injections of cortisone to see if I would get any relief. If the injections had been successful, they would have burned the nerve causing me problems which would have left me pain free for up to 3 years, I was told. But it's me we're talking about and I never seem to resolve medical problems the easy way. We did two rounds of facet injections without any improvement for me, and then he did two rounds of epidural injections of cortisone, which also was unsuccessful. At that point, the anesthesiologist said that my options were essentially to take large doses of long-acting narcotics (he mentioned methadone as one option!) or go have surgery. (I had, by this point, had five months of physical therapy with no relief and quite a bit of aggravation of the problem.)

I declined the major narcotics and said I would wait it out as long as I could.

Well, in the midst of dealing with all my other health problems, I need to settle things with my insurance company because the statute of limitations expires in August, just a few months away. (Did I mention the driver who hit me turned out to be uninsured and driving on a suspended license? I'm so happy the accident was in Beaverton, where police respond to every accident, and not in Portland, where they only show up if there are major injuries.)

Anyway, I've hired a lawyer to help me with those negotiations, but on these days when I've had less pain elsewhere and therefore taken much less pain medication, I've discovered that my back problem has not gone away and has simply been masked by the meds I take to cope with my other problems.

Ok, that's all background material. Sorry it's so drawn out. (Obviously I miss having a good editor to help keep me concise!)

Today (Friday), I saw the neurosurgeon again. I wanted to let him know my lawyer would be in touch (which I forgot to do!) and to see if there was anything else he recommended that would help me heal without requiring surgery.

As an aside, I mentioned that my medical history had become a lot more complicated since the last time I saw him. And then I explained it as best I could, from the hospital stay in July on, including the positive parvovirus test. I also detailed all my weird symptoms that have sent me to see just about every possible specialist I could be sent to. Or at least it seems like that.

"You know, all those symptoms could be caused by your tethered cord," he said. "And it's a very easy surgery to fix, 2 to 3 days in the hospital and most people bounce back entirely within two weeks."

I explained I'm not a bounce-back kind of patient under the best of circumstances and asked for a conservative estimate of the recovery period. He said maybe four weeks, six weeks at the absolute maximum.

He said it was impossible to know whether my tethered cord was responsible. But he says there are numerous case studies of patients who have bizarre symptoms and fluid diagnoses and have turned out to all be related to a tethered cord, and he's had a number of patients like that too. Apparently, when the spinal cord is involved, it can affect almost anything.

It really sounds too good to be true -- the idea that a "simple" operation would take care of all my health problems. We're not jumping into it. I had a bunch of x-rays taken today, and he's ordering both lumbar and cervical MRIs. We're going to talk again after he has those and discuss his recommendations. I'm hopeful that Scott will be able to attend that appointment with me so he can ask his own questions and get the information directly from the source rather than filtered through my fuzzy memory.

The tethered cord definitely wouldn't account for my elevated SED rate or positive ANA. But I've also been told by multiple doctors that those can happen without any illness/disease causing them in some people. The positive parvovirus test could be yet another red herring, like the monoclonal proteins that got me sent to a hemotologist oncologist to be tested for cancer. (Which reminds me, I'm supposed to have another blood test to check those levels again ...)

Sometimes I think I'm destined to remain a medical mystery for life, but I sure hope not.


SharonMV said...

Hi Aviva,

This being a medical mystery can be a real pain. Good that you're having more tests - definitely more info needed. Hope Scott can go with you to the next appointment. Maybe you can ask your rheumatologist what he thinks.

I continue to be a bit of a mystery too. Have to have more tests on my low adrenal function. Seems there is no way to know if it is secondary (caused by constant infections or other on-going illness) or auto-immune (addisson's disease). And now I need more tests to try & found out what is causing my high white cell count for the last 2months (resistant/ hidden infection or worse things). I vote for auto-immune for the adrenals (have already racked up several AI diseases) and infection for the high WBC. Hoping new blood test on Mon will show WBC is back near normal.


PS : re the injections I get for fibro are marcain (a local anesthetic similar to lidocaine). There has been some research/studies showing that Cymbalta can be effective for fibro pain. It has not been approved by FDA for this use, so it is an off-label use. So you get two benefits with one med.

Laurie said...

Since I am "clinically interesting" myself, can I just tell you, you are clinically interesting! Wow. Definitely keep us posted on this possible connection.

Shari said...

I continue to be amazed at all our similarities. I guess it is good not to be alone, but wish we had something else in common! I had a similar back issue which was treated with facet injections-and they didn't help me either. ALso had about three other kinds of injections/epidurals.
I also had a car accident a few years before being diagnosed with the fibromyalgia. So far the only conclusive blood work has been the positive ANA and sed rate.

Jen Rouse said...

Maybe it really will be something a single surgery can fix. Back/spine issues can cause so much pain. My mom dealt with chronic pain in her neck and shoulders for years and was diagnosed with everything from fibromyalgia to depression. Nothing helped. Finally she heard about a sports medicine specialist in Eugene who did nothing but neck problems. After one visit to him and one to a chiropractor that he recommended, her problems were practically cured. Here's hoping that yours could be too.

Stef said...

It would be cool if some of your issues could be solved by a surgery. It's a big hard decision though.