Surgery date!

We got a date for the untethering! The 14th of April. Less than 2 months. 7 Weeks. 50 Days.

Tonight, I'm so very scared. The neurosurgeon, dr L, was again very sweet and kind and assertive. I really like him, and he instills confidence. BUT. He said the reason dr M, the previous neurosurgeon, doesn't want Boeboe to have the surgery, is because of the high and dangerous risks. Dr L said he explained to dr M that he studied the condition (occult tethered cord), so it's not that dr M does not agree (with Boeboe having an occult tethered cord). He just doesn't know if it's worth the risks of the operation. So dr L asked us to really think about it before committing.

He said there's a very real risk (guestemate of about 5-8%) of paralysis after the operation. And he said it's not only going to be awful for Boeboe, but for us, and even him as her doctor, too. If that happens. He explained it like follows:

Apparantly there's little blood vesels that goes up along the spine from the bottom. It goes all along the filum (which is the part that tethers Boeboe's spinal cord too tightly, and that needs to be snipped). If one of these blood vesels are severed by mistake, the area which it serves with blood (and oxygen) will die off. This could cause paralysis or other problems. He says these blood vesels could be so tiny, it can easily be missed.

The other consideration dr L mentioned, is that if there is a blood vesel wrapped tightly around the filum, and he can see it but not remove it safely, he is going to abort the operation. He won't cut the filum, and will just close her up again. So Boeboe could go through all the pain of the operation, and have none of the gain!

It was really a difficult moment for me. A doctor looking at you very sincerely, very seriously, and then telling you that the risks are not just insignificant. Not to be dismissed. That it's real, and you have to think carefully about it before making the final decision.

Would I forgive myself if Boeboe ends up paralysed? Probably not. But should I just leave her be, and one day tell her sorry, we didn't want to take the chance? Would she forgive me then? Probably not.

I told the neurosurgeon that if I do not do it now, Boeboe will do it herself in 10 years time. He nodded, and added "But then it would be too late. The damage would be done." So I think we're on the same page here. The surgeon, and me and Boeboe's dad. We need to take this risk. We need to do this for Boeboe.

Dr L said it may already be too late, some damage could already be permanent. But we could potentially be looking at a 50-70% improvement. Maybe even more.

So there you have it. We have a date. But we're scared beyond belief. I don't know if my nerves is going to hold. My husband thinks 8% is so much. But I don't know hey, could we just leave her? Tell her we did everything we could, except try the cure? She's suffering already. We can't ignore that, can we?

I researched this condition extensively, and of all the people I read or heard about, none who had this operation, ended up paralysed. I do not want to brush it off as nothing, because it does scare me. What a position to be in!

The other thing I think we need to remember as well, is that if we do not do the operation, what will be in her future? It's not "just" incontinence. With incontinence comes alot of issues. One being that the bladder gets damaged from the constant spasms it has. It shrinks, and this would most likely lead to a bladder augmentation. A very, very big operation with risks of its own. So do we then just trade the one operation for the other? Cutting the filum does not guarentee that we won't need the bladder augmentation operation one day. But it at least gives us a chance. A chance of a cure, or enough improvement that she could be continent one day with the help of things like botox or a neuro modulator.

So we have a date. And lots of worries.