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Avatar universal

Trigeminal neuralgia>?

Hello~ I have a kind of difficult question to answer, but i'll try anyways.  I had a brain tumor removed (pilocytic astrocytoma, temporal bone area) about 2 years ago now. Ever since the surgery, the left side of my face has been numb, from my temple to the edge of my jaw line. I had pains in my face during the two years and people assured me that it was nerve regeneration (is that possible?) so I didn't think much of it. Now whenever the wind blows, or something touches my face, I get like a sharp tingling pain that goes through the numb part of my face, after a couple of seconds it goes away until anything else triggers it. Sometimes I have an incapacitating throbbing eye pain, that's not everyday though. I saw my GP and he said to go see a neurologist. Is it possible that nerve regeneration takes this long and causes pain like this, or is this something I should be looking into and/or treating. I figured after 2 years, the nerve damage is permanent. My GP mentioned trigeminal neuralgia- I've been researching, but I want to know what's necessary to stop this. Thanks for any help or suggestions~
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Avatar universal
Ok- so it's just the med's that have controled your TN or has it gone away and you're off med's? Actually I've been noticing the last couple months, that everything is starting to taste spicy, like burn/stings when I eat. My mouth and teeth are numb, and I don't have any taste on that side, but if it has the slightest acidity my mouth feels like it's on fire. I honestly thought maybe I was eating too strong of food, but I've ruled that out, any thoughts on that one?
Helpful - 0
Avatar universal
Wish I could hit Vegas again. Been a few yrs. I'm 5 yrs. now
since I had my last surgery 'the big one'! I'm not numb anywhere
so that's why I say it can happen. TN is dx'd by mri & clinical.
It wouldn't have shown up on mri's you had 2 yrs ago if that's
what you're asking. You needed to heal from procedure before
they could look for complications from the surgery or new
thing that developed afterward. I was numb for over 2 yrs. then
the wake-up started & I felt temple pain/throbbing teeth. That
lessened over another yr. & turned into TN. Possibly scar tissue
was the cause for mine along w/ inflammation of face off/on.
I've been numb free for last 2 yrs.
Helpful - 0
Avatar universal
Ok- wouldn't they have seen this on the previous MRIs? Is it something specific you have to look for? So where are you now i.e. numb etc. I'm leaving for Vegas tomorrow so I will write back to you on Sunday.
Helpful - 0
Avatar universal
Evidently my post un-gliched & laptop is wk'g! It's easier to
use. Well kiddo', I can help w/ your delema to a point. We both
can relate to the pain/numb/etc. but we had different approach
of surgery. You need to do a fol-up w/ a new mri. It will show
if you have any brain lesions. Sounds scarey but a break down
in msgs can show up as white matter (faulty firing). Everybody
goes crazy on this board w/ that 'finding' on mri. It can be old
mis-firing from migraines to something like you had or a type
of disorder. White matter shows when the myelin (FAT!), gets
a hole or breaksdown. It's insulation around 'axons' or neurons
that send msgs. Axons are up to a foot long so if we have
chronic pain, it will fire repeatedly & lessen myelin. This
does 'not' mean MS. I have lots of scattered-matter on brain &
it's from brain-strain dealing w/ tumor problem. Many other
symptoms need to be happening so don't go thinking MS. I'd ask
your Dr. to order a brain mri to update info to help decide who
to go to. This would save time. I'm assuming you had a neuro-
surgeon? This would be the ofc. I'd contact since they have
your history & could compare old/new films at your appt. This
surgeon could then refer you to specialist depending on films/
symptoms. If I were young like you, I'd think abt yrs. of my
problem & decide to just know my options/condition. What state
are you in? Some states offer more options. Your pain is a spasm
triggered by ?. The numb keeps some nerves asleep. You're right
abt the wake-up. I used alot of wet-hot compresses to help my
problem. It stopped some spasms & started up others. Nerves get
tired & the ends sometimes die. Was a great feeling! I still
get 1 sec. jolts & more on a windy day. I'm use to it. I found
Xanax wks. if I feel things in head/temple tightening & it stops
many attacks. When you said left eye haywired, sounds like that
was nystagmus-jerk. It's from spasm. I had that & it hurt but
more like ache. It's a neuro problem to signal Dr. to look for
a problem. You've been through alot & I'd think the surgeon
would've suggested mri cks. Call your doc or surgeon. Get info
& know options. TN is a compressed 'squeezed nerve' & then
releases. Decompression is still a ? in my mind. What are they
going to un-squeeze & keep it open? Most end up on meds after.
Don't let this take yrs. away if it's disabling. Gotta' go.
Will ck. back later.
Helpful - 0
Avatar universal
I'm having board or computer problem. Laptop shows no response
from me on 7/1 nor your 7/3 response. Pg. won't even show a
response click. I signed on to another, 'big-bertha' computer,
& can now read/respond? I hope this will un-do my laptop access
problem. I may have to go back-forth? Anyway, I'm doing pretty
good considering I was 6 mo. from close to dying. Infecion had
broke through to brain. It took alot out of me listening to the
neuro's that wouldn't listen to my theory. A severe attack w/
face swelling/confusion/pain got me some attn. I have some gliches off/on & words un-jumbled finally. I'd reverse things
like red car was care-red when spoke same w/ writing. Had had some permanent nerve damage & eventually the other side of
brain kicked in & took over. That's why I say, I know in some
cases it takes time to wake up. I too had the same hairline
numbness down you described. Didn't have the severity of eye
pain. The Trigeminal has 3 branches. 1=up to forehead/effects
that area & dwn to eye socket. 2=temple/eye/cheek/lwr lid. 3=
angled dwn to jaw/under eye/upper lip & teeth. The 3rd could be
effecting the infraorbital nerve that is in mid cheek. Your
surgery may have done some damage but still think things could
wake-up. Might consider acupuncture that does stimulation to
paths to open up. Some have had luck w/ TENS device that you
can talk to Dr. for a trial therapy & then buy for hm-use. You
can search Net abt it.  Basically you patch on to skin & it does
low electric stimulation. Paths may need alittle help?

Helpful - 0
Avatar universal
Well no problem about the computer- I know how frustrating that can be. Should I be making an appt. with my surgeon to tell him what's going on or just kinda bypass him and go to a neurologist (maybe I don't need to go there either)? That would be a good idea, (acupuncture) there's no way I can make any of this worse right? I feel like the more they wake up the more they might hurt (they=nerves). Ok so here's a question- is this type of 'disorder' because of nerve compression (tumor-related) or because of damage to the myelin sheath. I read that damage to the myelin sheath only really occurs in MS. Or does tumor compression result in damage to the myelin sheath? Also, I was looking at vascular decompression...they say it's minimally invasive, but it's a craniectomy. Sorry for all the rambling... talk soon~
Helpful - 0
Avatar universal
I've been hearing many mixed facts about this. When I first started getting sick, I just had headaches, but I wasn't able to go in the car or watch tv or basically move. The whole time I was in bed, my eye 'throbbed' and I would put heat on my eye area. (It obviously was an all over head pain, but my eye hurt quite a bit) I thought it was a cluster headache so I just kept warm compresses on it. After the surgery, I didn't move my eyes for a while (kinda just stared past everyone). When I did start moving my eyes, my left eye just went haywire. I kept a patch on that eye for a while to keep it from moving/having to work. I woke up from surgery and my face was numb, my eye pain has been there since, but this has facial pain been happening more frequently lately. What is making me think that the nerve damage is permanent is that my forehead on my left side used to be numb- my hairline to my eyebrow came back within months- from a little bit above my temple to my jawline hasn't improved in the slightest. I still don't have any taste or smell on that side...It seems like I improved quickly and it kinda leveled off and I haven't seen any improvement since (even with the coordination aspect) It's going to be 2 years in September... You sound like you have been through more than most people could imagine- you're definitely a strong person. I hope everything is going well for you now~
Helpful - 0
Avatar universal
Hello Demi- I was hoping you were still in these parts... There's no other way besides meds huh? Is this something that can get better; I read that as age increases it can get worse, more frequent with sharper pains. I feel like there's a shock running through my face. It completely stops me if I'm talking or doing something, I just freeze. Could this be anything else? Thanks for ALL your help- it's always appreciated~
Helpful - 0
Avatar universal
Im not sure the sequence of events. How did they find the
tumor besides mri? Hdaches/temple pain/vision? Tumor was removed
& after healing, you were numb except for pain from surgery in
temple area? Now you're still numb but this TN started when? It
took over 2 yrs. for my paralysis+numbness to start getting
better. I had the TN from the tumor/inflammation/infection. I
had recurring tumors that took 4 surgeries, so lots of scarring
but had a specialist that did all from the inside of mouth & drilled up & over. I had alot of nerves that were pushed out of the way along w/ bone graft for upper cheek. I had TN for 8 yrs
& numbness was a blessing. Tumor gone/TN gone until nerves
started waking-up & I felt the pain from procedures/scar-
thickening/etc. If you 'acquired' TN & are now feeling this pain
jolt, the numbness is going & allowing you to feel it worse.
The surgery cut/nicked nerves in Tri-area, most likely the
opthalmic branch (explains eye). I know the pain. I got a jolt
once while driving & almost hit the other cars. I did so much
research. It varies on what to do. It's a nerve spasm & it
depends on frequency/tolerance. TN can go into remissions & then
return. I'm on 4th yr. since surgeries. TN came back maybe 2xwk
w/ jolts & once a mo. locked-in for 3 days starting 2yrs ago. I
researched. They can use things like vascular-decompression/
Gamma Knife/Botox/ I wanted no more cutting. I knew mine would
go off/on w/ remissions so I opted to go w/ whatever wk'd for
me. I tried lots meds. Tegretol is the best but has many side
effects. Baclofen did zip. Klonezepin so-so. I can feel a slt-
tingle now early on & started w/ a lo-dose Xanax (alprazolam).
Cheap/generic. I'm now on 1mg 2-3xday. It's for anxiety but is
also a smooth muscle relaxant to those vessels so they don't
spasm. I can predict the weather w/ this. Spasm starts & I need
hot compress. I'm a few decades older than you. I don't know
how often you have so that's the factor. A Neuro or even GP
should do a new MRI to ck. for compression/lesions/scarring w/
attention to radiologist to focus on 'posterior fossa' area.
Need alittle more info. It may show that decompression would wk.
or another reason for this, from prior surgery. Was spasm-pain
there before & after surgery? Lots of bad info on Net so don't
believe all. Mayo pushes surgery. Support groups offer vitamins.
No one tells you abt remission. Sometimes the nerve will just
give up after a few yrs. Low tolerance people stress out & it
lasts yrs. I went w/ it & mine has lessened. I used Capsaicin
cream (sp?) sold OTC on temple sometimes. It heats tissue. I
don't believe it gets worse w/ yrs. What do ya' think?






Helpful - 0
Avatar universal
Welcome back kiddo! It's very late at night so I'll make this
short & get back to you w/ more. I had severe TN in my temple
& most neuro's ignored it. I had to Dx myself. It varies w/
ea. case. Mine was a spasm that was occuring from a tumor
compressing on the cranial nerve 5 (cnV) also called the
'trigeminal' meaning '3 branches to it'. Most have a quick ice-
pick stab for no reason or from wind/hair/touch. It comes/goes
& is disabling to most for a brief time. Sometimes the pain will
cause one of the 'tri's' to swell & lock & you're down! I have
many notes on this. Will get back to you. You really need to find a Neuro that specializes in this. Most will give you trial
meds. I too had the eye pain off/on. Talk later.
Helpful - 0
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