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Undiagnosed neurologic disorder

Posted: Feb 10, 2010

I have an undiagnosed neurologic disorder where I have hemifacial spasm produced by pushing on my skull and neck. This seems to be blood but all tests are negative - MRI of brain, C spine, MRA, etc. I have had a previous cervical laminectomy for stenosis and pray that is not failing. Had it done in 2004. They thought I had a dural fistula in my brain but could not confirm that either. I have been in and out of the hospital the last 4 months with no diagnosis. I also have extreme dizziness and my head is numb and feels like it is full of fluid, possibly blood. I think I might have a ruptured AVM but wouldn't that show up on something? Thanks for any ideas.

;

some thoughts and questions - Skip

[ In Reply To ..]
Have you had an EMG study?

Is it bilateral or just one side? Does it start in one particular part of the face and move to another?

Is there evidence on any of the scans of compression of the 7th cranial nerve? Many of these cases are caused because something, usually a blood vessel (or in your case, possibly some scar tissue from previous surgery depending on the level of your cervical fusion?) is pressing on a nerve.

When you say your head feels full of fluid, do you mean it feels like your head is congested? Like having a bad sinus infection in your entire head, or do you mean like you can actually feel a pocket of fluid?

(Just brainstorming here...going back to my history of neurological disorders and surgeries.)

Feel free to e-mail me if you prefer not to post publically.

undiagnosed neurologic condition - nm

[ In Reply To ..]
I have the facial twiching when you push anywhere on my head or neck scar. I had a C2 nerve root ablation done in 2004 for occipital neuralgia. CT's and MRI's show nothing. At first I thought this was pseudotumor cerebri or extra spinal fluid but the docs say this shows up on MRI. Also ruled out AV dural fistula. I went back to the ER yesterdy as my legs are now affected. Having severe numbness in both legs, severe pain on right side of abdomen and back, wondering now about aortic aneurysm. What a mess I am! About 10 neuros have no idea what this is. So discouraging. No meds help either. It is fluid. I can feel it in my head and also a hissing noise in both ears 24/7. Any and all help is much appreciated.

More questions - Skip

[ In Reply To ..]
Have you seen an ophthalmologist, and had them look for the presence of papilledema? Unfortunately, sometimes pressures have to be pretty high before papilledema develops. Have any of these neuros considered doing a lumbar puncture to check for increased intracranial pressures? (The downfall of these are that an LP is only a snapshot of where your pressures are at that one particular moment, and if its not done right, it can be very misleading anyway.)

Have you had a CSF flow study or CINE CT scan performed, possibly looking for any blockage of the CSF that might have resulted from the laminectomy? (What level was the laminectomy?)

Lower extremity symptoms like you are describing typically occur when there is damage done lower in the spinal canal that the cervical region. Have you suffered any falls or car wrecks or anything?

Last question, do any of your MRI reports state anything about incidental finding of brain slumping or Chiari malformation or any abnormality of the cerebellum that might be compressing the brain stem?)

undiagnosed neurologic condition - nm

[ In Reply To ..]
I went to an ophthalmologist and had a normal eye exam Had an LP with normal opening pressure. Brain MRI shows some white matter lesions but neuro says not MS. No signs of Chiari but sure feels like it. They never mentioned a CSF flow study

undiagnosed neurologic condition - nm

[ In Reply To ..]
another thing I forgot to mention. I thought this might be a spinal AVM but the doctors all say the MRIs would show this. All negative MRI's except for cervical spine which shows mild neuroforaminal narrowing, no cord compression. I will not undergo a spinal angiogram as it is too dangerous but have considered a cerebral angiogarm. I am passing out about every day from this horrible condition and now my back hurts terribly (maybe from the spinal tap last month), but got an MRI of my lumbar spine which just shows bulging disks. My legs feel numb. I am wondering about aortic aneurysm? causing all of this as my back pain radiates into the side of my stomach. That can cause cord compression. I am suffering so much, cannot do anything and can barely work. Can no longer drive from all this. When I turn my head or look down I pass out.

Neuro stuff stinks, huh? - Skip

[ In Reply To ..]
Have you contacted the NS who did your laminectomy and discussed these symptoms with him/her?

neurologic problems - nm

[ In Reply To ..]
Yes and he never returns my calls. I also have a Tarlov cyst on my sacrum. Went back to ER today with no help. Feels like Chiari and Guallain-Barre combined. See neuro again tomorrow. He is seeing me every Monday. So tired of this.

Find another NS... - Skip

[ In Reply To ..]
You might consider just scheduling an appt with him, or just ask your neuro for a referral to a new NS for another opinion on the possibilities of scar tissue, etc.

I would also question the possiblity of cervical instability status post cervical laminectomy.

Although Chiari malformation can cause these type symptoms, if there was no herniation - even a slight herniation - on MRI, it is not likely CM. (Sure, there are cases of Chiari O malformation, but that is a very controversial diagnosis right now and typically attributed to other neurological causes.)

What part of the country are you in? There are some really fabulous neurological speciality hospitals that you can actually send your scans and records to for further review. The Barrows Institute in Arizona is incredible, the Cleveland Clinic and University of California at San Francisco are all fabulous. Given your surgical history and the Tarlov's cyst, it might be worth sending it out, especially if you can get your Neuro to help you do this.

by the way... - Skip

[ In Reply To ..]
My history of neurological conditions comes from having fractured my C2 vertebra in college and then being diagnosed with an acquired Chiari malformation three years ago. I underwent my first surgery in October 2006 with a C1-2 laminotomy. My second surgery was in April 2007 after I ruptured the patch used in the procedure. Then, following three 'high' lumbar punctures, I underwent my third surgery last March to determine if a shunt would be a necessary/feasible option for treating the increased ICP. The benefits of having a shunt placed did not outweigh the risks, so a shunt has not been done. Ironically, since having a very significant CSF leak (my fifth), my increased ICP has spontaneously resolved.

I now run a support group for people who suffer from Chiari malformation and benign brain tumors, and have started to mentor people who are facing brain surgeries. (That is how I learned so much about it.) But let me tell you, it took me 12 years of fighting before I found a doctor who would listen, so I want to encourage you to keep searching and keep fighting. The most important thing you can do is advocate for yourself.

neuro problems - Mary

[ In Reply To ..]
Wow I am so sorry you had to go through all that. I have seen 3 neurosurgeons, 3 or more neurologists with no answers. A lot of this is occipital neuralgia. When I touch my cervical incision I want to scream on top of the 24/7 head pain with no relief. I have had steroid injections in my skull, Neurontin, Lyrica, narcotics, no help. The neuros just say it is a possible failed laminectomy except for the one who performed the surgery of course. My current MRI shows neural foraminal stenosis at every level but cannot see much because of the hardware. They will not do a myelogram and I don't know if I could stand that anyway because of the severe headache. I think maybe the fluid I am feeling is blood vessel inflammation from the occipital nerves yet don't understand all the hemifacial spasm. They tell me they are irritated nerves. Anyway this has ruined my life. I can barely work, cannot drive or enjoy anything in life.

O.N. nerve blocks? - Skip

[ In Reply To ..]
Are you working with a pain management physician right now? If not, that is the next suggestion I would make. There is a chance he could perform either occipital neuralgia nerve blocks or other types of spinal injections, not only for treatment purposes but more specifically for diagnostics purposes. He would probably start with O.N. injections, and then move to other types of injections, testing different levels and different nerves to see if there is a chance he could pinpoint one particular level that is causing all the pain. If one injection does not work, don't get discouraged, because it could just mean that was not the level of concern. Sometimes, you have to do a few before you find the "hot spot".

He could also try different medications to help manage the pain. (I would seriously try to avoid methadone at all cost. That should be the last resort as that is a medication that needs to be managed VERY carefully, with very close watch by the physician. It is wicked!) There are several new medications out there that might be able to help. A good pain doc will work with you, but remember that pain docs tend to be very strict in that they expect and demand you follow their rules very closely - or they cut you loose. It is critical to be compliant with medication use and following through with them.

Also, depending on the part of the country you are in, there are some specialty places who deal specifically with neurological disorders, for example, the Michigan Headache Clinic.

Most importantly, don't give up hope! Keep fighting. Help is out there. If you send me an email telling me where you are located, I can see if I know of any good doctors nearby. I have some connections in lots of different states with people in my support group. I can see if I know anyone in your area who might be able to give us some suggestions.

Skip: Is your support group local or - online? NM

[ In Reply To ..]
no message

My support group is local, but...see msg - Skip

[ In Reply To ..]
I am involved in several support groups online also. I have been thinking about which ones would be most beneficial. The two places I am thinking about would be great just to have a place to go where you could correspond with others in a 'similar situation', although it might not be exactly the same. Just knowing that you're not alone, and that this really isn't "all in your head", as we are so frequently told, seems to make a huge difference.

Let me do some thinking on it and see which ones might have the best information. Seriously, if you can get a bunch of people to 'put their heads together' on this, maybe we can all help you put together some thoughts that you could take up with your docs.

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