"Suffering the Slings and Arrows of Outrageous Fortune"

The Maze

Saw the neurologist this morning. The x-rays were normal (still want someone other than the radiologist to look at them) but none of the headache meds have helped and would have if it were simply migraines. Since the DHE didn’t do anything for Em’s headache, the dr has concluded that it probably isn’t a simple migraine and that the headache is secondary to the neck issues.

No big surprise there – I could have told her that – but it is a necessary step in the ruling in and ruling out process. So, we are pretty much at the end of what she can do for us and she is leaving in May anyway. We agreed to bounce the whole issue back to Dr. Tinkle and let him guide us to the experts he feels are best. She was very nice about it and I agreed with her approach completely. I knew from the beginning that she wouldn’t be able to help us much.

Her suggestion is to get to a pain specialist – probably not at Reid, someone at Cincy would be better – and have some injections to deal with the neck pain. I believe she said radiofrequency neurotomy/ ablation. I will call to double check on the terminology before I email Dr. T with the info but, if I am correct about the term, I am less than thrilled with the suggestion. In fact, I am whole heartedly against it after looking it up. I can see how it might be the answer for some people and certain types of pain, but I think in my daughter’s case it would only be masking the pain and would likely make the symptoms (and thus the damage) worse. Killing the nerve, inducing more weakness and possibly make her worse? No, thank you. I highly doubt that Dr. T would think it is a good idea but we will run it by him.

It is frustrating because I feel like I know exactly what our next steps should be. We need a number of specific MRIs and/ or CT scans and a neurosurgeon who is an expert in cranial instability/chiari/ tethered cord syndrome needs to read them and diagnose my daughter. My ideal is to get enough scans to send to The Chiari Institute and get their opinion. Then if they see something, we go there. If not, well, I’m not sure but we will figure something out. I don’t want it to be cranial instability but if it is, we have to do everything we can to’ fix it’ as soon as possible.

All of this jumping through hoops is a bit ridiculous. If only we could take a straight path to our destination – I think I know the way but I cannot guide the doctors. It is a little like being in a maze where you can see the goal over the walls. You can see it but you have to take a left, then a right; there is a dead end here and you have to back track there. And on and on. All the while you see the end and cannot get to it until you complete the maze.

So, the bottom line is Dr. Parnell has done everything she can for us and is turning us back over to the expert. She did fiddle with Em’s meds a bit. Increased the tramadol and prescribed a new muscle relaxant to see if it helps her sleep. We will contact Dr. T to get his opinion and referrals to someone… I am fine with a pain specialist but not for the suggested injections. A neurosurgeon would be nice. Hopefully, he will get the ball rolling on the positional CT scan and order a MRI of the spine – a CINE MRI would be nice too. Throw in flexion/extension CT scan and I would be a very happy camper…

In the meantime, we can get PT started  to cross it off the list. None of us are terribly hopeful that PT will drastically improve her neck, but will give it a try anyway – one more piece of the maze. We will see about transferring Em to whoever replaces Dr. Parnell but she implied they probably won’t take kids. Which would mean we might end up at Cin. Children’s for neurology care. Not a bad thing in all likelihood.

Today we took one more step on a very long journey through the convoluted maze. And I consider that a good thing. Sigh.

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