A little medical advice, please...

[mikeweil]

With so many good thoughts on your side it has to get better! I will keep my fingers crossed for you!

[Jim Alfredson]

Does anyone know what they call someone who specializes in the throat? I think we need to see someone like that, since the neurologist (who just called) has seemed to made up his mind.

He just told my wife that, despite the fact that we have more tests tomorrow, the numbness should go away and that "sometimes we just have to let it do that." That's great, bub. Thanks.

The numbness is in her left leg now and she still has a consticting feeling in her neck, like someone is strangling her. She can feel something strange in her throat when she moves her neck and this weird strangling feeling has come on in the last few days.

So, we'll do the rest of the tests tomorrow, and in the meanwhile look for someone who gives a shit.

[catesta]

Ear, Nose and Throat Specialist.

[maren]

Does anyone know what they call someone who specializes in the throat? I think we need to see someone like that, since the neurologist (who just called) has seemed to made up his mind.

He just told my wife that, despite the fact that we have more tests tomorrow, the numbness should go away and that "sometimes we just have to let it do that." That's great, bub. Thanks.

The numbness is in her left leg now and she still has a consticting feeling in her neck, like someone is strangling her. She can feel something strange in her throat when she moves her neck and this weird strangling feeling has come on in the last few days.

So, we'll do the rest of the tests tomorrow, and in the meanwhile look for someone who gives a shit.

Whoa!

That's kinda unbelievable... what a drag.

An ear-nose-throat (ENT) might not be right -- they're pretty much dealing with the larynx, vocal cords... Although if there actually is something in her throat, then maybe...

All this tingling/numbness involves nerves in SOME way -- cervical spine/vertebral problem (orthopedist?), or inflammatory (rheumatologist?). This is where a person needs a primary doctor, internal medicine certified who CARES enough to work with these specialists so you're not flailing blindly. I'll PM you...

[couw]

I still haven't much to add, I'm afraid. I still hope all turns out for the best real soon though.

[EKE BBB]

Just read this thread for the first time.

My thoughts are with you. Be strong, I´m sure Alice will recover soon.

[Joe G]

Be strong, I´m sure Alice will recover soon.

Don't mean to negate the warm sentiment here, but I just thought of a tune title:

"Blues for Alison"

[bertrand]

Could the 'something strange' in her throat possibly be a blood clot? Just a thought to pursue.

I really wish I could be more helpful.

Bertrand.

[skeith]

Ear, Nose and Throat Specialist.

I went looking for one of the ENT guys recently and couldn't find any listings under this.

I am told they are now called Otolaryngologists (hope my spelling is correct)

[neveronfriday]

Any news?

Still keeping all fingers crossed ... easy, for a drummer

[J.A.W.]

Any news?

I was wondering about that, too.

[Jim Alfredson]

Tuesday was her worst day by far. Since then things have been kind of stable, but the tingling/numbness has moved into her left leg.

We had a round of tests Wednesday and another yesterday. We were supposed to have an MRI of the cervical spine, which we thought was tonight at 11:30PM. Yes, 11:30 at night. The MRI was scheduled for midnight. On the phone, they said "12:00am Friday". Which actually meant last night. They did not clarify that, so we missed it. It has since been re-scheduled.

The plan is to see the current neurologist one more time on Tuesday but we're pretty much convinvced he will not be able to help us. Before the round of tests on Wednesday, he said, "I don't think they'll find anything." He also seems to think Alison's throat problems are from anxiety, which is bullshit. It's been a week and they are still there. That's some anxiety attack, bub.

Hopefully we'll go to the Michigan Brain and Spine Institute in Ann Arbor. I just have to try to get a referral.

I have a theory, with the help of maren, of what it might be, or at least something to look into.

Before I handed over her first set of MRI's to the neurologist at MSU, I read the summary chart that came with it. One of the things it said was, "inferior cerebellar tonsiller ectopia extending approxiamately 5mm below the level of the foramen magnum." I asked the neurologist what this meant and he said, "It just means her brain is sitting a little low but we determined it's nothing to be concerned about."

Well, what it actually means is that her cerebellum, you know, the lower part of the brain that controls all your involuntary motor skills like breathing, heartbeat, etc., is herniated and sticking through the hole in the base of the skull where the spinal cord goes into the brain. This is known as Arnold-Chiari Malformation. The symptoms are exactly like Alison's and it is even commonly misdiagnosed as MS because the symptoms are so much alike.

Here's the kicker: There is new research that suggest that a herniated cerebullar tonsil may not be the CAUSE of Chiari Malformation in all cases, but sometimes may actually be a SYMPTOM. ACM is also usually congenital, but there have been many cases of acquired ACM which presents itself after trauma. Again, we keep telling every doctor about Alison's fall down the stairs a month ago and no one cares.

Anyway, I'm getting copies of all the scans including MRI films and such and I'm going to take them to someone who specializes in this stuff and those folks are in Ann Arbor.

Alison is feeling ok. There have actually been cases of acquired ACM where the person heals completely on their own as long as they don't aggravate the injury. The only other option is surgery to relieve spinal fluid pressure and create a little space for the herniation to be. I hope we don't have to go that route. But the effects of waiting to long can be permanent nerve damage.

[Dan Gould]

Jim, its ridiculous that you have to do all this sleuthing yourself but its fortunate that you have a working theory and hopefully you can consult with the experts who can confirm or rule out your suspicion.

Continued luck, perseverence and strength to you both.

[J.A.W.]

Jim, its ridiculous that you have to do all this sleuthing yourself but its fortunate that you have a working theory and hopefully you can consult with the experts who can confirm or rule out your suspicion.

Continued luck, perseverence and strength to you both.

My thoughts exactly.

All the best to you and Alison, Jim.

[Joe G]

Wild!

[bertrand]

Jim,

You are truly a great husband. And kudos to maren for suggesting this route to pursue.

It is mind-boggling that you should have to do all this research yourself. I sympathize with doctors that they are in one of the most difficult professions in the world, and it is unbelievably hard to keep up with everything. But the lack of compassion and caring that they are showing in Alison's case is absurd. EVERY sympton is a clue that needs to be investigated.

Give an extra hug to Zora from me.

Bertrand.

[mikeweil]

Just wanted to post that I read your symptoms description to my wife, who works with MS patients, among others, and said it does not look typical for the early stages, and see you might have figured it out.

I sincerely hope these doctors are taking you serious.

Jim you're a GREAT!!!!!! guy in every respect. (now where's the real big thumb?)

Edited November 19, 2004 by mikeweil

[Alexander]

You are truly a great husband.

I echo this sentiment. I remember when Stacy was diagnosed people said the same thing to me, and I was like, "What do you mean? I'm doing what any husband would do!" But I found out that that isn't always the case. My wife and I have met many MS patients who's spouses took off after they got sick.

[Guest Chaney]

While I don't imagine this thread will fall, maybe it could / should be pinned?

[J.A.W.]

While I don't imagine this thread will fall, maybe it could / should be pinned?

I second that suggestion.

[Late]

You are truly a great husband. And kudos to maren for suggesting this route to pursue.

Give an extra hug to Zora from me.

Bertrand.

Just read this thread for the first time today, and wanted to echo Bertrand's thoughts — all three of them. A lot of genuine compassion here ...

[JSngry]

Still thinking about y'all in a prayerful manner.

[catesta]

Same here.

[connoisseur series500]

Damn, what frustrations!

Hope things work out. Keep up the strength, both of you...

[Jason Lester]

Jim,

All this news about your wife is quite worrysome. I'm glad you are working so hard to do all of this research and to get the straight story. In a way, i know thats just the natural thing to do, but you're doing a kick ass job of it.

If you are looking for more doctors to consult with, I just happen to know a neurologist who specializes in MS and, I believe, similar conditions. I serendipitously met him through my crazy liberal church. Actually, he happens to be a really, really solid piano player-- he'd be a monster if he wasn't always on call. But, you might want to just consult with him and get an opinion from him. He's easy to talk to and not the kind to keep medical information from his patients, so he might have some useful insights for you. His name is Herman Sullivan; you can reach him at HSullivan@mmpc.com. I hope he can help.

Hang in there and keep asking questions and seeking answers. I hope you figure this out as soon as possible and you can start treating her ailment! I'm keeping you in my thoughts and I hope to see you on good terms soon. Take care!

--Jason