Next stop - neurosurgeon

[cassrox]

Good evening friends,

I saw my MS specialist today to go over the results of my latest brain MRI and the neck x-rays. I definitely have myelopathy - the question is why...

She is not ruling out MS, but she said her primary concern is that the problem is more likely a craniocervical junction abnormality that's cutting off the spinal fluid flow in the area where my skull and spine join. She said it was out of her field of expertise and wants a neurosurgeon to take a look at it. It is an MS mimic that is usually overlooked and leads to misdiagnosis.

The cause of it - not sure. Either I was born with it and it's just started rearing it's head with age; it was caused by a wreck I was in as baby where I suffered a severe head injury, and it's just now cause problems with age; or it's caused by some disease process, like Padgets; or a tumor.

Usually, she said it's seen in patients with Down's Syndrome or severe Rhuematoid. And I don't have either one of those. She's concerned that the junction of my skull and spine may also be unstable because the of it. When someone dies in a car accident from the "hangman's break," she said this is where it happens.

So, I'm waiting on an appointment with a neurosurgeon to see what he or she thinks of the abnormality - what it is and whether or not they think it's the primary culprit. Then we'll go from there.

She said she didn't think the small spur or the bulging discs were the cause of the problems. And with this abnormality, she think's it's more likely to be the culprit than the brain lesion that popped up on this latest MRI - but again, she can't rule out MS at this point.

What's sad is, like I noted in a previous post about this abnormality is that is was blatantly obvious on the brain and c-spine MRIs I had done 1.5 years ago - and evil neuro #1 didn't even see it. Meanwhile I've gotten progressively worse. If this is the cause, I just hope it can be fixed and that the damage already done is not permanent.

I see the MS specialist again in January to follow up.


Cass

[cassrox]

I got my appointment with the neurosurgeon for Tuesday. If I hadn't been in court covering a murder case and had gotten to talk with them directly, I could have gotten in to see him tomorrow..Oh well, I just need to stop dwelling on it so much over the next few days.

I've been reading up a bit on the various surgeries for "crainocervical junction abnormalities," and on one site I read that many of the surgeries that are unsuccessful end up that way because it's later determined that MS or some other process is also involved.

With that said, along with having that new enhancing lesion, I'm glad Dr. H. hasn't shut the door on that possibility yet. She seems very sharp.

When I told her this was the first time I felt like I was getting somewhere, she cautioned me about waiting to see what the neurosurgeon thinks about that malformation - whatever it is. She thinks it's possible that it's causing my problems, but she also admitted that it's not her area of expertise and wants someone who knows more about it to make that determination.

She's still calling me her "mystery patient." I guess if I'm going to be a mystery, at least I'm glad I'm in the hands of someone willing to help solve the mystery.

Thanks again everyone for your support and for the kind notes of encouragement.

Cass

[rendean]

Cass,

I'm glad to hear that you have an excellent neuro that is now overseeing your care.
I'm sorry that the first neuro and radiologist didn't diagnose the abnormality a year and a half ago.

When is the neurosurgeon appointment? I hope for your sake it's sooner than later so that you can have your answers and get the proper treatment.

Keep us updated on your progress. Even if it's not MS we're still here, anytime to support you.

Warmly,
Ren

[cassrox]

Yeah, she's definitely a keeper. Prior to seeing her the first time, I had heard she was really great, and she's defintely living up to her reputation.

I'm just so glad I got in to see her. It's like night and day compared to that quack that was ready to put me in a padded room and said that my claw hand was probably just caused by hyperventilation.

Dr. H. asked me if evil neuro #1 did a nerve conduction study on that arm and hand, and when I told her he said it was normal, her reply was that there was no way it was normal - that he must have done it wrong, that those tests are among the ones that are "all in who does it" and them making sure they do it right.

Reading the possible surgical fixes for this abnormality don't look too pleasant, and I don't know what in the world I'm going to do if I end up out of work...but at least now I'm finally getting some answers.

Cass

[Lulu54]

Cass,
Its good to have answers so you know what to work on getting fixed.  I am so sorry this was a call that could have been made a year or so ago.

And good for the MS neuro to not totally dismiss you - that's a real keeper of a doctor!

my best,
Lulu