Raynaud's Association
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Topic Title: trigeminal & geniculate neuralgia w/raynaud's
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Created On: 02/13/2011 10:23 PM
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 02/13/2011 10:23 PM
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Joined: 02/13/2011

I have had raynaud's symptoms for 7+ yrs and was "officialy" diagnosed w/ right-sided trigeminal & geniculate neuralgia 2+ yrs ago. Tried all the standard neuralgia meds w/o success and had microvascular decompression surgery 10/09 w/little success &big complications. Once actually seeing my nerves ENT &Neurosurgeon realized the souce of the problem (only 1 compressed nerve was shown on MRI) I have bundles of blood vessels wrapped around 5th & 7th cranial nerves). The 7th nerve was not able to be decompreesed b/c it was a tangled mess but the trigeminal was &I had a great deal of success until 6 mo later the symptoms returned &both nerves flared up worse than b4. So a few days ago I woke up w/LEFT-sided ear pain &my ear was completely numb & I had a very painfully stiff neck (similar to but not the same as when the right side when crazy). This new left issue is pain, numbness, burning, tingling & I thought maybe I have shingle but w/only 1 blister. My neurosurgeon (in 2009) told me that the likeihood of having both 5th &7th involvement was hard to believe so could I have all 4? Raynaud's, right sided trigeminal &geniculate neuralgia unresolved by brain surgery, &now left sided trigeminal &possibly geniculate too?! Is that possible? I guess if I have abnormal blood vessels but come on how unlucky can a girl be? My dad did have an aneurysm &strawberry hemangioma (as a kid). Has anyone else had this? There has got to be a blood vessels issue but what is it called &how do I treat it? I am a nurse &have done lots of research but this new possibility of having bilateral neuralgia's w/intensifying raynaud's? ! Really?! Help!
 02/14/2011 09:33 AM
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Welcome to the forum, nursemeg, and I can't imagine that amount of pain to be in and am so sorry for you!

You have a neuro that you are seeing, but maybe consider seeing a rheumatologist and get his or her take on the Raynaud's and its origin. As an LPN, I'm sure you'd have no difficulty explaining your symptoms and getting an answer, whereas a non-medical person might get the round-around.


I will persevere & live strong.

Secondary Raynaud's to Ehlers-Danlos Syndrome, Hashimoto's thyroiditis.
 02/14/2011 08:04 PM
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Hi Nursemeg,
I have almost the same problem. Have raynauds diagnosed 3 years ago. It is secondary with MCTD.About year ago I developed trigeminal neuralgia on the left side, not much pain but numbness and discomfort. My rheum said it is not connected so I went to see neurol. and after MRI he found nothing. In Dec the numbness moved to right side and I really don't know how to deal w/it. Do you also have sec Raynad's and what you taking?
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