A little medical advice, please...

[The Pillar of Flame]

Hey Alison and Jim:

I'm glad to hear that you've gotten an appointment with an ENT. I can't help but think that something's irritating your cranial nerves, Alison. The weird feeling in your throat, the neck pain, vision--all of those things may possibly be connected to these twelve sets of nerves which are located in the lower area of the brain, around the brain stem. Maybe you've pinched them? Who knows? But when you go to the ENT, ask him about the nerves. He'll probably do something called an oral-mechanism exam to check them out. Anyway, here's a list of them and their functions.

I – olfactory – sensory information from the nose

II – optic – sensory information from the eyes

III – occulomotor – control of pupil constriction and eye movement

IV – trochlear – control of eye movement

V – trigeminal - information from the skin of the face and tongue

VI – abducens – control of eye movement

VII – facial – sensory information from face, taste (front of tongue and palate), increase salivation (anterior glands), control of face muscles

VIII – vestibulocochlear – sensory information from the ears (balance and hearing)

IX – glossopharyngeal – taste (back of tongue), sensory/motor control of pharynx, increase in salivation (posterior glands)

X – vagus – taste (throat), sensory/motor control of muscles of throat, deceleration of the heart, parasympathetic innervation of the internal organs

XI – accessory – control of neck muscles

XII – hypoglossal – control of tongue muscle

I hope this may help in some way. I wish I were there in Michigan to bring you dinner or help you around the house .

--Matt

[randissimo]

I'm back, reporting under Jim's name...

Monday we saw the ENT. He suggested I have more testing (what do ya know!) to evaluate my inner ear. That is scheduled for this Thursday morning. I have been having problems with dizziness and pressure in that area. The dizziness is similar to the rocking of a boat. It is just enough to keep me feeling crappy. Riding in the car is the worst. The ENT also found a symptom of a symptom. Acid reflux. My nerves are getting to me and causing my throat to feel raw. Not good. I will take the meds he perscribed, but I hesitate adding potential side effects to all my other issues.

We finally will follow up with our primary care doctor on Thursday afternoon. This is the man I only saw for 5 minutes who sent me to the ER. But, in order to get my short term disability extended, I have to touch base with him. Perhaps he will have some more leads and another referal for us. Then, it is back to the ENT to learn of the test results.

My short term disability insurance carrier may refuse payment if the doctors don't give a specific diagnosis. So far it is unknown. No wonder my stomach is churning. I'm off work, on reduced income, Blue Cross calls here after every test asking how I am if we know anything yet, the Disability people are on our case, we have tests and appointments nearly every other day, and I haven't had a symptom-free day in a month, and we are no where closer to finding an answer.

How do I feel today? The numbness & tingling in my face is persistant. It is in my entire jaw area, left and right, it goes into my neck and chin and up into the left cheekbone. My tonge has been soar for about 2 weeks. It too is tingling and aches by the end of the day from talking. The tightness sorrounding my neck comes and goes though there is constant pressure in my Adam's apple front and back. Headaches are common and I sometimes have pain behind my left eye. The other day is was a horrible stabbing pain. Luckily that didn't last long. Sometimes my eye is sensitive to the air and light. It has had a cloudy haze of vision since this all started. Fatigue is another big problem. I use to think of myself as an energizer bunny. My batteries are now ca-put!

That's the news for now. Thanks again for all your interest in our situation. We will find the answer!

Alison

Wife of B3Groover

This is Margaret, writing under Randy's user name. He's been keeping me updated on what's been going on. My thoughts are with you, I hope they find out soon what is going on so you can be yourself again. Stay strong, and give Zora a kiss for me. Margaret

[maren]

Hey Alison and Jim:

...I wish I were there in Michigan to bring you dinner or help you around the house .

--Matt

What Matt said.

Thanks for keeping us all posted, Alison -- hope all your appointments go okay today.

[Jim Alfredson]

Ok. Update time. We've been to various doctors all week. The ENT found nothing. All tests were normal. The dizzyness is not being caused by any malfuction of the inner ear. Her throat looks fine, albeit with a little bit of soreness caused by acid reflux (no doubt a symptom of the stress of this entire situation). Other than that, everything is normal.

We had a cervical spine MRI the other week and the chart that came with that reads exactly like the one that came with our original head MRI from her stay at the hospital at the beginning of November. Ergo:

The cerebellar tonsils are herniated 4-5mm through the foramen magnum, which is within a gray zone between normal and abnormal.  Clinical correlation is needed.  Otherwise, normal MR of the cervical spine.

The stand-out phrase to me that is different from the last report is "clinical correlation is needed." In other words, we need a second opinion, preferrably from someone who specializes in CMI (Chiari Malformation Type I).

The thing we keep hearing is "Well, it looks like MS, although all the tests to find MS have come back negative." In other words, they are looking at MS only because of the symptoms. The following is from a website about Chiari Malformations:

CMI is commonly mistaken for Multiple Sclerosis because its symptoms are so similar. As with MS, symptoms of CMI usually appear in women between the ages of 20 - 40. Both conditions include neck pain, pressure in the neck, frequent headaches, dizziness, blurred vision, difficulty with motor skills, numbness, balance problems and muscle weakness. Patients are often diagnosed with MS, based on symptoms alone, even though testing of bodily fluids have provided no definitive diagnosis. Therefore, minimal CMI should be considered a possibility in MS patients when a diagnosis has been made based solely on symptoms.

Look at those symptoms. DING DING DING! So I called the Michigan Brain And Spine Institute in Ann Arbor and they said we need a referral to get in. No big deal. Our primary care physician will help us out there. We saw him yesterday and he's very concerned and agreed that we need to seek another opinion (or two or three). They also said they have two doctors there that specialize in CMI. So I think that's the next step.

[catesta]

Hopefully you guys will see some light at the end of the tunnel soon.

[The Pillar of Flame]

Hey Jim:

I checked out a website that described the symptoms from Chiari Malformation Type I; it seems that you are on to something. Why are the doctors avoiding any discussion of that possibility? This must be so frustrating for you! Keep on their asses, though. Eventually, you'll get to the bottom of it all.

Keep us posted, and hang in there.

--Matt

[DrJ]

The Pillar of Flame Posted on Dec 3 2004, 05:03 PM

  Hey Jim:

I checked out a website that described the symptoms from Chiari Malformation Type I; it seems that you are on to something. Why are the doctors avoiding any discussion of that possibility?

It's usually readily diagnosed by MRI. My guess is the prior imaging studies simply didn't clearly support the diagnosis. A second opinion at this point from the proper sub-specialist MIGHT help, although one frustrating thing you're already experiencing is, the more doctors involved in cases like this, the more opinions you tend to get. Plus the treatment is major surgery, not to be taken lightly in itself and one reason to consider watchful waiting. For example, one of my medical resources puts it thusly:

"The object of treatment is to stop progression and hopefully relieve symptoms. This may be accomplished by: 1) decompression of the neural structures, the brain stem and cerebellum and 2) re-establishment of spinal fluid circulation if it is affected. Decompression is achieved by removing the bony structures compressing the brain stem and cerebellum. Re-establishment of spinal fluid circulation may be established in a variety of ways. Treatment of the different disorders are diverse but generally involve a posterior decompression, a shunt, or a combination of both."

It also says just before this that asymptomatic anatomic abnormalities should be LEFT ALONE. The point here is that this could just be a normal anatomic variant and the symptoms could have nothing to do with it - so you don't want to go through all the above and STILL find you have the symptoms you began with. I think GREAT caution in giving a firm diagnosis is definitely in order, particularly if there has been some improvement.

Still, overall this sounds like the only relatively promising lead, so again may be worth pursuing another opinion.

Again, my thoughts are with you guys.

Edited December 3, 2004 by DrJ

[Dave James]

Jim,

Finally, something I can speak to with some level of authority. This has to do with your wife's Short Term Disablity claim. The decision here should not be rendered on the basis of finalizing a diagnosis, it should be completely dependent on whether Alison is unable to perform the duties of her regular occupation. As long as her doctor will certify that she cannot do her job as a result of her current physical limitations, then you should not have any trouble getting her STD claim approved. By the way, I'm assuming this is a group insurance product. Is Blue Cross also Alison's STD provider? If so, they should already be cross-referencing the medical information. I would think that would help facilitate the approval of her claim.

Up over and out.

[Jim Alfredson]

DrJ, I think one reason no one has diagnosed it here is that it falls in the "gray zone" between normal and abnormal. The real bummer is that my wife had an MRI years ago but not of her head. If she had, we would be able to compare the two to see if this herniation has been there the whole time or if it's appeared due to trama (her falling down the stairs 3 weeks before this all began, for example, which no one seems to think is important).

On this site (Chiar Information they discuss people suffering from Chiari symptoms with no herniation at all and other people having herniations exceeding 12mm that have no problems. It seems to me that pysiology may have something to do with it as well. For instane, if I, being a 6'3" man with a big head (can't recall my hat size, but I have problems finding hats that fit) had a 5mm herniation, it probably wouldn't affect me as much as my wife, who is only 5'1". She's tiny!

The other issue is that no one here in Lansing specializes in CMI. The herniation is obvious. You can see it plain as day on the MRI's. The question is whether it's normal or abnormal and they have two neurologists in Ann Arbor that specialize in CMI.

Of course, CMI might have nothing to do with it and it could be MS afterall. Who knows? We're just trying to seek answers. Our primary care doctor set us up to see a neurosurgeon as well and then reassured us that it would only be a consultation and that even if the neurosurgeon suggested surgery, we do not have to go that route. We're just looking for another opinion since so far no one has any idea what's wrong.

Dave, I will mention your post to Alison. I thought it strange that the HMO was demanding a diagnosis. The simple fact is that she cannot drive a car, she cannot walk for more than a few minutes, she cannot concentrate well... she cannot perform the duties required of her for her job right now.

[Jim Alfredson]

I should also re-state (since I think I said it before in this thread) that my research has revealed that a cerebellar tonsils herniation could also be a symptom in and of itself and not a cause.

It's confusing!!!!!!!!

[DrJ]

More input:

The "diagnosis" the HMO wants is probably just a working diagnosis, not a "definitive" one. They have to have something (an ICD-9 code, which is a numbering system for medical diagnosis) to put down on the paperwork. This working diagnosis can just be descriptive/symptomatic, e.g. "facial numbness" or something, doesn't have to be a final, pathologic diagnosis.

Re: cerebellar herniation, usually it would take a catastrophic event (e.g. large brain hemorrhage or tumor) to cause the cerebellum to herniate outside of the setting of a Chiari malformation. I think you can safely cross those things off your list.

Re: the fall, as it relates to the Chiari/herniation, it is basically about as close to zero chance as it can be that they are related. For a fall to cause a brain herniation, it would have to have created a major bleed (hematoma) due to head trauma - she'd have to have really smacked her head and would have other physical signs/symptoms (you see brain herniation after head trauma in cases like high-speed car accidents where someone hits there head and is brought in unconscious, for example - not after a fall like this where there is no loss of consciousness etc). So those two really can't be related. It is possible she torqued some nerve roots in the neck with the fall as you indicated earlier, but that also seems quite unlikely to me.

Re: the Chiari angle, I think (at least from this distance and with what I know) you and your primary doc are absolutely on the right track - that's exactly what I was getting at with the "watchful waiting" comment (it's one of a doctor's greatest tools, since with time and follow-up often all becomes clear - assuming of course the patient is not getting worse or hopefully improving some). There's even an old medical saw we are taught - "don't just do something, stand there" - to remind us not to be overly aggressive unless it's truly unavoidable or an emergent situation, lest we end up potentially doing harm to a patient by being hasty in trying to force a diagnosis/therapeutic plan. This is something it's hard for patients to understand sometimes, but having seen what can happen from people being too certain too soon, I will take a cautious doctor ANY day.

So by all means, sounds like a good idea to get the neurosurgeon's opinion and then watch and wait. Your wife thankfully lacks a lot of the potential symptoms of full on "classic" Chiari, things may resolve, another cause may declare itself, etc. If not, you will be "plugged in" and can always cross the Chiari bridge if you get there.

I'm SO glad you are starting to hone in on things!

Edited December 4, 2004 by DrJ

[J.A.W.]

Could you give us an update, Jim?

[Jim Alfredson]

I apologize, I thought I had updated this thread. Latest news is that we are waiting for the clinic in Ann Arbor to call. Our PCP has forwarded a referral to them.

So that's where we are.

[J.A.W.]

Thanks Jim (no need to apologize, by the way). Why don't you pin this thread?

[randissimo]

Could you give us an update, Jim?

I'll be seeing you tomorrow but thought maybe some of the concerned members following this thread might like to know if there is any new news since Dec 8th..

Edited December 11, 2004 by randissimo

[neveronfriday]

Yes, I didn't dare ask, but I'm interested in how things are going.

Best, ...

[Jim Alfredson]

A little update:

We were still waiting for the clinic in Ann Arbor to call. My wife had an appointment with our primary care physician today and it turns out the reason the referral hadn't gone through is because they didn't specify which doctor to see. We gave them the names of the two doctors the clinic recommended, but they failed to put that on the referral.

Long story short, they faxed over a new referral this morning so hopefully we'll hear something today.

My wife went and saw the PCP to see if he thought it would be all right if she went back to work (against my better judgement). She has been feeling better lately, but she had a really weird episode earlier this week. Zora woke up at 3am or so and my wife got up to see what the fuss was about. She called me into the room a few minutes later because she was having massive nausea. She laid down again and the next morning some of the other symptoms that have been relatively dormant came back, such as the metallic taste.

She told the doctor about this and he decided to have her wait until January 3rd and come and see him again (January 3rd is when her current stretch of disability runs out.... she's got another four months, but the doc has to make the call).

Anyway, that's where we are. Hopefully we can see the folks in Ann Arbor before the end of the year and get a better sense of what's going on.

[neveronfriday]

Merry Christmas, Allison!

Hope everything will turn out fine in the new year!

We're all keeping our fingers crossed ... which also helps us because it keeps us from eating too much stuff these next days.

Best to you!

[king ubu]

Merry Christmas, Allison!

Hope everything will turn out fine in the new year!

We're all keeping our fingers crossed ... which also helps us because it keeps us from eating too much stuff these next days.

Best to you!

Keeping fingers crossed here, too! I wish you a merry x-mas and best of luck for the new year!

ubu

[Leeway]

Allison, may the New Year bring you full good health!

Take your time, make sure that whatever was injured has time to heal.

[Guest Chaney]

(...)

She told the doctor about this and he decided to have her wait until January 3rd and come and see him again (January 3rd is when her current stretch of disability runs out.... she's got another four months, but the doc has to make the call).

(...)

May I ask how things are going?

[J.A.W.]

(...)

She told the doctor about this and he decided to have her wait until January 3rd and come and see him again (January 3rd is when her current stretch of disability runs out.... she's got another four months, but the doc has to make the call).

(...)

May I ask how things are going?

I was wondering about that, too.

[Jim Alfredson]

Thanks for the concern, everyone!

Alison went back to work for the first time yesterday. She is managing her symptoms... they have not gone away. She is still getting dizzy spells now and then and has the numbness, the constrictive feeling in her neck, etc. We are scheduled to see a specialist on January 25th in Ann Arbor.

Until then, she has 14 working days to decide if she is able to work or not. So far, she is doing all right, but it is very hard and she is definitely not working up to her full potential.

Today is sort of a snow day here in Lansing. Every single school is closed and she is waiting an extra hour to go to work since none of the roads have been plowed. Woo hoo! SNOW DAY!

[brownie]

Glad to hear that things seem to be better now!

[JSngry]

They have snow days in Michigan?

I thought those were only for pussies like us here Down South. I thought you guys are supposed to laugh at snow.

Another illusion shattered. Not much left to believe in anymore.