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Undiagnosed with Head and Face Numbness

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Unread 01-21-2013, 10:40 AM   #1
giapet
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Post Undiagnosed with Head and Face Numbness

Hello everyone!

I'm new to the forums, and a very friendly member directed my post here, since all of my symptoms started with back pain.

I've had back issues since I was 13. I woke up one day and couldn't move my head because my neck hurt so badly. I saw a bunch of doctors, including a neurologist, had physical therapy done, etc. I don't remember much of the details, but I was diagnosed with chronic muscle spasms because they didn't know what was actually wrong with me. I'd also lost some curvature in my neck, though they never were sure if it was the muscle spasms that removed the curvature or the curvature that was causing the spasms.

And that was that. I just lived with it and became used to the back pain and knots. When I get massages, I am usually in agony, but on a daily basis, I am just used to having a stiff back to the point where I don't notice it any more.

Fast forward to March of 2012. I woke up with some nasty pain between my shoulder blades. My shoulder was throbbing. I couldn't turn my head to the left. My hands were tingling painfully (ring and pinky fingers mostly), as was my middle back on my left side. After a few weeks of no relief, I saw my PCP, who sent me to physical therapy.

Physical therapy seemed to make my neck pain worse. I was doing neck extensions that seriously killed. I was also having HORRIBLE tension headaches and my lower back was starting to hurt, as well. The tingling in my right hand didn't change, but the tingling in my left hand started to encompass my entire hand, not just two fingers. My left arm was starting to buzz, as well, and nerve pain was shooting into my palm. My back was still tingling, and worst of all, the back of my head started going numb and itching incessantly, like bugs were crawling on it.

In June, after 1.5 months, I quit PT and scheduled to see an Ortho.

The ortho did some x-rays and a cervical MRI. The curvature in my neck was now non-existent, with some reversal of curvature. There was some narrowing of disc space, and I had 3 partially bulging discs (c4-c6, I think). However, my Ortho didn't think that anything was all that bad even though I was in pain, and he definitely didn't think it was the cause of my tingling. The nerves were fine. So, he gave me some NSAIDs and a muscle relaxer and said to see a neuro if nothing improved.

I schedule to see a neuro in October. The numbness in my right hand was gone and my back and neck were back to normal (still pretty achy but normal achy for me-- at least I could turn my head), but my head and back were still going numb, my left hand was still going numb, the weird sensations in my arm continued, and my crown of my head still had the incessant itch.

I had a brain MRI which was clean. Blood work was all normal. I experience little hand numbness in my left hand now after wearing a brace for Carpal Tunnel for a month or two as recommended by my neuro.

However, the head numbness was started to encompass my entire head... it started in the back of my head, then moved up towards the crown, then my ear lobes, temple, until finally, one day, my entire face was numb from cheeks to forehead. The itching also continued without fail. I was still having tension headaches, and every so often, my head would get fuzzy, like it was floating away from my body.

Also to note, none of my numbness is constant. It happens in short bursts, usually never longer than 15 minutes, but those bursts can happen every 30 minutes to an hour on a bad day vs. two to three times on a good day. Sometimes I will have burning pain, but it's rare. The numbness has only woken me up from sleep a few times, and thats because it was coming with nerve pain. Sometimes, random places will go numb or tingle (like my foot when I sat down on a couch or above my eyebrow) and then it will never happen again.

The neuro put me on gabapentin, which made me suicidally depressed, so we switched to Lyrica (50mg once a day), which has helped. If I skip a single night's dose, though, my head is a numb, itchy mess by morning and my middle back will continue to tingle.

They have NO IDEA what's wrong with me. One neuro actually said I should just deal with it since it's not affecting my daily life. I dunno how you guys feel about that response, but as a 25 year old woman who's head and face go numb and itchy without meds, I find it to be bull.

Any thoughts? Should I get a second opinion from another ortho or neuro? So sorry about the novel length! I'm just kind of lost, since I've had two different specialists just kind of go "eh" and leave it at that.

Thanks in advance!
G
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Unread 01-21-2013, 10:49 PM   #2
Leesa
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I would take your latest MRI and see another Neuro SURGEON and see what he has to say.

Since you say that the cervical curvature is non-existent, I would think that might have something to do with it, and also the discs would probably be involved, but I don't know since I haven't read the report.

So see a Neurosurgeon and let us know what he says. Best of luck & God bless. Hugs, Lee
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Unread 01-23-2013, 07:14 PM   #3
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Quote:
Originally Posted by Leesa View Post
I would take your latest MRI and see another Neuro SURGEON and see what he has to say.

Since you say that the cervical curvature is non-existent, I would think that might have something to do with it, and also the discs would probably be involved, but I don't know since I haven't read the report.

So see a Neurosurgeon and let us know what he says. Best of luck & God bless. Hugs, Lee
Head and facial numbness is not spinal-related. It involves the cranial nerves. I would agree with Leesa however in that you need a second opinion!
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Unread 01-26-2013, 12:39 PM   #4
giapet
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Quote:
Originally Posted by Leesa View Post
I would take your latest MRI and see another Neuro SURGEON and see what he has to say.

Since you say that the cervical curvature is non-existent, I would think that might have something to do with it, and also the discs would probably be involved, but I don't know since I haven't read the report.

So see a Neurosurgeon and let us know what he says. Best of luck & God bless. Hugs, Lee
Hi Leesa,

Sorry for my delayed response. I also thought that way, but everyone seemed to think that it wasn't a concern. The ortho said my discs were not affected anything around them, hence his shrugging it off. I don't think it's a coincidence that my head numbness started while I was in physical therapy for my neck-- physical therapy that, at the end of the day, made me neck feel worse because they never diagnosed the issue before sending me there.

I will look into neuro surgeons and go from there. Thanks again!
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Unread 01-26-2013, 12:42 PM   #5
giapet
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Originally Posted by Dubious View Post
Head and facial numbness is not spinal-related. It involves the cranial nerves. I would agree with Leesa however in that you need a second opinion!
I was under the impression that C1 and C2 nerves affect your head?
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Unread 01-26-2013, 09:01 PM   #6
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Originally Posted by giapet View Post
I was under the impression that C1 and C2 nerves affect your head?
Correct. Clinically, it's pretty rare to see involvement of sensory portion of C1 and C2. It's not common, is of arguable clinical significance and I have never heard of them being tested or seen a neurologist test those dermatomes (not that they couldn't be). There are no discs at C0-C1-C2 so compressive discopathic issues wouldn't occur at those levels although certainly other problems like tumor, infection, other ominous pathology etc could lead to radiculopathy at those levels I suppose. Probably the first thing to come to mind when someone mentions numbness above the neck are presumed problems in the V1, V2 and V3 distributions of the sensory portion of the trigeminal nerve (V cranial nerve) which testing is part of a routine neuro exam. I guess that was my point but technically you are right!
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Unread 01-27-2013, 01:15 AM   #7
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Quote:
Originally Posted by giapet View Post
Hello everyone!

I'm new to the forums, and a very friendly member directed my post here, since all of my symptoms started with back pain.

I've had back issues since I was 13. I woke up one day and couldn't move my head because my neck hurt so badly. I saw a bunch of doctors, including a neurologist, had physical therapy done, etc. I don't remember much of the details, but I was diagnosed with chronic muscle spasms because they didn't know what was actually wrong with me. I'd also lost some curvature in my neck, though they never were sure if it was the muscle spasms that removed the curvature or the curvature that was causing the spasms.

And that was that. I just lived with it and became used to the back pain and knots. When I get massages, I am usually in agony, but on a daily basis, I am just used to having a stiff back to the point where I don't notice it any more.

Fast forward to March of 2012. I woke up with some nasty pain between my shoulder blades. My shoulder was throbbing. I couldn't turn my head to the left. My hands were tingling painfully (ring and pinky fingers mostly), as was my middle back on my left side. After a few weeks of no relief, I saw my PCP, who sent me to physical therapy.

Physical therapy seemed to make my neck pain worse. I was doing neck extensions that seriously killed. I was also having HORRIBLE tension headaches and my lower back was starting to hurt, as well. The tingling in my right hand didn't change, but the tingling in my left hand started to encompass my entire hand, not just two fingers. My left arm was starting to buzz, as well, and nerve pain was shooting into my palm. My back was still tingling, and worst of all, the back of my head started going numb and itching incessantly, like bugs were crawling on it.

In June, after 1.5 months, I quit PT and scheduled to see an Ortho.

The ortho did some x-rays and a cervical MRI. The curvature in my neck was now non-existent, with some reversal of curvature. There was some narrowing of disc space, and I had 3 partially bulging discs (c4-c6, I think). However, my Ortho didn't think that anything was all that bad even though I was in pain, and he definitely didn't think it was the cause of my tingling. The nerves were fine. So, he gave me some NSAIDs and a muscle relaxer and said to see a neuro if nothing improved.

I schedule to see a neuro in October. The numbness in my right hand was gone and my back and neck were back to normal (still pretty achy but normal achy for me-- at least I could turn my head), but my head and back were still going numb, my left hand was still going numb, the weird sensations in my arm continued, and my crown of my head still had the incessant itch.

I had a brain MRI which was clean. Blood work was all normal. I experience little hand numbness in my left hand now after wearing a brace for Carpal Tunnel for a month or two as recommended by my neuro.

However, the head numbness was started to encompass my entire head... it started in the back of my head, then moved up towards the crown, then my ear lobes, temple, until finally, one day, my entire face was numb from cheeks to forehead. The itching also continued without fail. I was still having tension headaches, and every so often, my head would get fuzzy, like it was floating away from my body.

Also to note, none of my numbness is constant. It happens in short bursts, usually never longer than 15 minutes, but those bursts can happen every 30 minutes to an hour on a bad day vs. two to three times on a good day. Sometimes I will have burning pain, but it's rare. The numbness has only woken me up from sleep a few times, and thats because it was coming with nerve pain. Sometimes, random places will go numb or tingle (like my foot when I sat down on a couch or above my eyebrow) and then it will never happen again.

The neuro put me on gabapentin, which made me suicidally depressed, so we switched to Lyrica (50mg once a day), which has helped. If I skip a single night's dose, though, my head is a numb, itchy mess by morning and my middle back will continue to tingle.

They have NO IDEA what's wrong with me. One neuro actually said I should just deal with it since it's not affecting my daily life. I dunno how you guys feel about that response, but as a 25 year old woman who's head and face go numb and itchy without meds, I find it to be bull.

Any thoughts? Should I get a second opinion from another ortho or neuro? So sorry about the novel length! I'm just kind of lost, since I've had two different specialists just kind of go "eh" and leave it at that.

Thanks in advance!
G
Hi Giapet,

I re-read or probably more appropriately read more closely your first post and have a few additional comments. First, I should state that your treating doc is in the best postition to diagnose your issues since he took a history, performed a physical exam and considered any imaging, electrodiagnostic or lab tests results. That said and from what you are relating in your posts regarding their findings, there is not a clear indication as to what is causing your symptoms, especially regarding your head numbness with lower extremity complaints. Citing dermatomes doesn't really go very far to explain your problems except for your early complaints of little and ring finger issues that might fall in the realm of a C8 or ulnar nerve...possibly plexus issues. There are other issues to consider such as metabolic considerations, demyelinating issues or cerebral or myelopathic degenerative changes. There are a whole world of problems that should be considered in your case and I would encourage you to follow up with your treating doc(s) until a satisfactory diagnosis and treatment plan is revealed.

Best to you!
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