We have a diagnosis, finally!!!

This is it! Yes, this is it!!!! WHOOHOO!!!! I'm so happy today, I can simply just dance! We saw the new neurosurgeon today, dr L, and he is simply just marvellous! No other words, just marvellous! He's young, dynamic, energetic, to the point, efficient, and best of all, he knows, believes in and has studied occult tethered cord!!!! And...he believes Boeboe has it! He said we cannot loose anything to operate for it. We can hopefully, just gain! He says he sees a tethered cord patient about every 2 or 3 years, so it's a rare condition. But he's never had an occult tethered cord. My daughter is his first (scary thought!). But, he's done tethered cord operations before, so I trust him. He said when he studied it 5 years ago, he only read about studies consisting of 6 or 8 children, so he asked me to send him all the research I did on bigger studies. I know of one study containing 60 children with occult tethered cord.

He said that he works very closely with dr M (they're at the same hospital) and he would not want to just go and operate on a patient of dr M without first consulting with him. So he's going to speak to him once dr M comes back from holiday (which is unfortunately only around mid Jan!!) and then he'll call us. Hopefully he can convince dr M that it won't be a huge mistake to go and operate on Boeboe. That she indeed has an occult tethered cord, and that it indeed really IS a true condition, and just because you studied 30 years ago, you shouldn't be so opposed to new things in your field that has started to prop up in the past 10 years. I just hope dr M can be more open, and won't try and convince dr L not to operate! That would be a serious step back for us. But, dr L looked 100% sure of his case, and sure of himself. What I liked about the visit, is that he didn't expect Boeboe to have serious neurological deficits. What people seem to forget, is that having an occult tethered cord, is NOT like having a tethered cord, though of course very similar. But, an occult tethered cord could be much less serious. Now, Boeboe does NOT have neurological deficit, like most tethered cord cases. And every time someone tested her, they expected her to have it, else it can't be tethered cord. Well, it's not tethered cord, it's occult tethered cord. THUS, the signs are more subtle, not as clear cut and obvious. Except of course, with her bladder and bowels. So dr L knew this. He didn't even test her on all types of neurological tests. Because it honestly doesn't really make a difference to his diagnosis, now does it? Even with the neurogenic bladder. He diagnosed her with an occult tethered cord, after listening to her symptoms, and how it progressed. Only after diagnosing her, I mentioned the bladder being neurogenic, and he was happy/surprised about that, and nodded his head. Clearly, because it fits.

He also didn't expect to see anything on her MRI's. He did not look at it, wondering what they're missing. He glanced at it, remarking “it's clean, just as we would expect it to be”. He gets it! He really gets occult tethered cord. I can't tell you how relieved I am. How good it feels to know that we're in the hands of someone that tells US that it's occult tethered cord, and that we must operate. And not US telling THEM what we think it is, or what should be done about it. I am so so so relieved, and happy tonight...:) I must be the first person ever, feeling relieved once their daughter has been diagnosed with a tethered cord. Gosh, I feel silly, but after this long hard year of fighting for my daughter, I really am just relieved. Her disease has a name. We already know the symptoms, we already LIVE the disease, we just needed its name. To know what to do about it. I refuse to sit and wait, hoping she'll outgrow this thing, and in the meantime it's just getting worse. I want to tackle the cause, and not just throw botox at the symptoms. So for now, I'm relieved, and I'm looking forward to the operation. Though, I'm sure within time, I'm going to get very, very nervous!

In the meantime, Boeboe is only now getting better from the UTI. Took her a whole week of a/b's...:( Poor little thing, it really was a terrible one. Oh, and the urologist's office phoned. Her botox has been moved to the 22^nd of January. But now we're not sure if we should still do it, or not?