Okay, scratch that bit about the IUI being scheduled for this month. We decided to put it off for at least one more cycle. Not only is it horridly expensive, and out-of-pocket since our insurance bites (and will no longer pay one penny toward our IF treatments!), but Brian wants to see what his neurologist has to say before we do this. Neurologist,you say? Yep…
Some of you may know that Brian has degenerative disk disease in his cervical spine. It’s pretty bad, to the point that his chiropractor will no longer touch him and the last neurologist to see him said that any good blow to the head or fall from any height at all would either paralyze or kill him. Such fun things to have hang over your head, really. This seems to be a family issue — one of his sisters has some back issues, I believe, and his mother had major surgery (two years ago?) on her spine. MAJOR surgery. So, we’re not surprised. When you add in the fact that Brian played football until he was about 19 (offense and defense, woo hoo!), you have one seriously injured back. Unfortunately, that degenerative disk disease leads to pinched nerves and muscle spasms, shoulder pain, migraines, and numbness in his hands and feet. Or occasionally arms and legs. His migraines are nearly constant, and are atypical in presentation. So he may not have the blinding pain that I deal with when I get a migraine, but he has horrible dizziness (he’s been treated for vertigo for years), nausea, numbness, inability to see clearly, and something extra-fun called “brain fog”, which is exactly what it sounds like.
A lot of his symptoms seem to stem from his vestibular function; if you turn off the lights, Brian will fall over. He has absolutely no balance when the lights are off or his eyes are closed, and it’s not just a clumsy issue (that’s me). Finally, all the symptoms that he’s experiencing have just gotten out of control. Yesterday at work he was unable to read. This is a literate man, folks. Who was completely unable to make sense of any words on a page. Or numbers. Have I mentioned he manages a retail store? A few numbers are involved. Apparently at night, the numbers on our clock jump, too. Tons of fun, I’m sure. He perpetually just feels off, and it’s gotten old.
So, about a month ago, he went to see our family doctor(s). He was given a referral to one of the best neurologists around, and finally had his appointment at the beginning of March. Dr. Perdue said that he thinks the migraines are the first thing to address. He gave Brian a beta blocker. Brian then proceded to not sleep for four days. Instead, he’d sit bolt-upright in bed and talk nonsense, scaring the crap out of me. Just as fun as it sounds, really. So, after four days of no sleep, Brian went off that particular pill, thank God. And immediately got a migraine. He had an MRI this week, and we’re waiting for the results of that. Unfortunately, his next neuro appointment is in early April. At this point, the questions are these:
- Is his degenerative disk disease to blame for everything, or totally unrelated?
- Are his migraines atypical and causing all this, or is there something else?
- Is this an injury-related/disk issue, or is it a congenital problem?
- Is this a one-time thing, or can he pass these issues on to our children?
- Will this get worse, and is there any treatment that won’t make him feel even worse?
Of course, we’re both terrified of things like brain tumors and such, and we’ve definitely thought about MS. Dr. Perdue doubts both of these things, though, so we’re looking at either he has a really bad neck and is headed for surgery, or he has some manner of disorder/syndrome that is getting progressively worse. And, being such tech-savvy people, we’ve of course turned to Google for all our answers. Brian’s best defense in such trying times is to be totally informed. This led to being tested extensively for Meniere’s Disease earlier in 2008, which was ruled out. Which is strange, since several doctors thought that this was the exact answer we were looking for; he has all the symptoms, but not the necessary inner ear structure to diagnose Meniere’s. And the doctor he saw is considered an expert in Meniere’s, so we’re pretty confident in that lack of diagnosis.
Unfortunately, if you rule out Meniere’s, what we’re looking at may be Vestibular Ataxia. He has failed his Romberg’s Test, most recently last night while demonstrating it for Cousin Mike and myself…..and again just now when I asked him to do it again. When you couple his symptoms with the fact that his mom has a few inherited things that can be scary (Alpha-1 Anti-Trypsin Deficiency and heterochromia being our main concerns), we afraid that a “sydrome” of some sort may be to blame. If you follow the heterochromia links out, you’ll find that there are a host of sydromes that can be indicated by this simple sign. A simple sign that Brian’s mom, his sister, my father, and my grandfather have. We’re not playing with this. At this point, degenerative disk disease caused by a healthy highschool football career will be most preferable.
Now we have to decide what to do about having children. If it’s not genetic, woo hoo and we go on with IUI as soon as we can. If Brian has something genetic, we will have to decide if we want to risk taking a chance to pass this on to our kids. We most likely will not, since we feel it’s just irresponsible to pass on things that you know full well will comprise a child’s quality of life or will shorten it drastically. Please do not flame me if you have, will have, or have had a child that inherited a genetic condition that you knew you had. It’s our personal choice, and it’s been prayerfully made. That said, we’re continuing with Clomid and The Old-Fashioned Way for this cycle. If God wants us to conceive this month, we will, and we’ll deal with the consequences. If Dr. Perdue feels that Brian’s issues are genetically linked, we’ll both seek genetic testing. We’ll go from there. We’re both completely open to adoption, even though we so deeply want biological children.
We’re not worrying about much of anything at this point, and just praying that this week’s MRI shows nothing life-threatening. Chronic, degenerative, or genetic things we can deal with. A brain tumor or such would be devastating. We’ll deal with it, but of course would prefer not to. So a lot of time is being spent on our knees these days. Brian is still dealing with all his symptoms and never knows what a day is going to bring. If you see him and he looks positively exhausted, distracted, or downright foggy, you’ll know what’s going on. He’s been in chronic pain for a long, long time and things are progressing from bad to worse at a pretty fast clip. Please pray as you feel led for knowledge, strength, guidance, and God’s will. Oh, yeah — and a clean MRI and football-induced neck injury!!! 🙂