Demi!! I need your help AGAIN- or anyone else that can help...Trigeminal nerve

[Pixiangelj]

I wrote to you about this before, and I feel like I'm not getting anywhere. Ok, I'll brief everyone bout this- I had a pilocytic astrocytoma removed September 04, the left side of my face has been numb since then. Within the last year I have been getting sharp electric pains (especially in wind)in my face and behind my eye (crippling). When I eat anything acidic, the anterior 2/3rds of my tongue burn (only on the left side) I have 2 Trigeminal Neuralgia from(Primary care/facial nerva specialist), Atypical/Secondary Trigeminal Neuralgia diagnosis (primary care Dr), and am curious what trigeminal neuropathy is or if anesthesia dolorosa applies in this situation. I've researched and everything is blending together, overlapping symptoms. How is it even possible to be feeling any type of pain when it is all numb (pain, pressure, sensation) I know there are certain nerve fibers that are still somehow in tact- does this mean they severed my nerve during surgery (unavoidably) or...? It's been two years with no sign of feeling coming back and pain becoming worse. This fits into like 8 categories- I know TN doesn't really have any diagnostic testing, but I'm afraid to let them just start guessing- should I seek other opinions besides my surgeons and current doctors?? Thank you so much for any help anyone can provide- if you need more details let me know...

[Demiguise]

Glad to read you got a recent MRI. Get copy of Tues appt. I
figured just to wait to see outcome before thinking too much.
I really don't like to mention the bad or odd stuff abt a
condition since many go crazy & think they'll die! I don't like
term tentacles since it sounds like an Octopus engulfing your
head w/ suction cups. Extensions of fibers sounds better & not
so bad. You can have these w/o them attaching & be benign.
Tegretol is the top rx for TN but it takes time to adjust. I'm
older & some of these nerves die w/ age. I use Xanax when I
feel things starting or we have a monsoon season alert. You had
a JPA (slow-growing). Any astrocytoma can go, appear where it
wants. Slt paralysis is often the hint to search, especially
if in teens. Yours was found at stage 1 w/ best chance of total
removal but long term fol-up. Keep in touch.

[Pixiangelj]

Well they started me on Tegretol and I feel completely outta control- I'm crying at anything/everything, just mood swings. I'm getting an MRI tomorrow and go back to the surgeon on Tuesday...When I had my teeth out, my left side was normal, had minimal bruising (light shade yellow, could hardly tell)and didn't really swell. I only took Vicodin during the post op, and I was completely out. No radiation or chemo--Hey can you read what the Dr. wrote in the Neurology Forum. I didn't think tentacles could happen in a PA, what are your thoughts?? I talked to my surgeon and he mentioned something about that my tumor was pressing on my trigeminal nerve, he said that I might be getting pain (only in eye area) because the nerve is reattaching, creating this sensation. He said it might be good (which I don't think) or it could be a "pain in the @$$" Yes he actually said that, it's in quotes. The whole food thing started recently within 3 months or so...I started noticing that everything was spicy or burned/stung if it was too acidic, hot (temp.), or spicy. The shocks go through my whole face though, since I've been on the meds, not really that long, it's gotten better by like I'd say 30%...I'll give it time, even though I don't feel very well, I guess I have to adjust. I would be interested in the PA/TN study- I would think that cerebellar tumors would create some type of problem, but who am I? : ) I'm not really too worried about the MRI, I don't think it'll show a "cyst" or anything goofy like that. That's what the Dr. said. I will talk to you soon, let me know if I'm giving you enough information or if I'm just rambling into space, Thank again~

[Demiguise]

Need alittle info. How long ago did you have wisdom teeth out.
Were you total out or twilight (sorta' aware)? What was your
'left response' during the week following? Nothing or more
attacks than normal? Any severe meds for treatment during that
week? Do you know if this PA was located for sure in Temporal
lobe? They can also be found elsewhere & affect diff-paths. You
have not mentioned last time MRI. There are post/pre/reg-
ganglion. Has the tongue always burned w/ acidic foods since
'04 or just started? Did you have fol-up w/ radiaton or chemo?
Maybe print this & answer each as best. You should try for all
copies since they may be shredded after 10 yrs. They'll be very
valuable to refer to later in life. Also lab can maybe transfer
pre-opt MRI to disk for future use for you. You had a major
teeth extraction & those nerves may be the key to narrowing
along w/ your post-response on left. As I recall, there is a
place studying TN+PA in Houston,TX. Many times, if you have all
info/history/copies, they will accept a packet for review in their trials dept. A Neuro-spec. might review & make an opinion.
Sometimes they will work w/ your Neuro to decide a treatment or
a study of % of those w/ PA that were pro/con results. It was
the 'nothing happened to left' that didn't hit me till now.
I'm wondering if it's an 'extension' making things worse now or
scarring causing a bounce back signal. Do you get most quick-
pain just at temple/eye or does it hurt at top or mid-cheek
bone ever? The hospital report is given to you & they never call
Dr ofc. It will tell what/entry/closed/& went well or ?  This
is needed for hospital files for legal purposes later on & to
ck on there Dr's. It may list other Dr's assisted. It was the
left-response that I couldn't wrap around nor can I still. Get
back w/ info when you can. Later.

[Demiguise]

I'm still here but had to settle a post someone made that was
a mis-understanding. Have Dr's appt tomarrow but am still
kicking around something you posted. The hospital surgical
report would help ALOT. I could say things & then discover it
didn't apply. Will get back. Bones are creakiing for a break.

[Pixiangelj]

BTW Thanks for the hint on posting email addresses. I know, this is kinda starting to consume me, I know that sounds kinda dramatic, but even my famiy don't understand how painful it can get. If it at all helps, the pain behind my eye was how I knew I had the tumor in the first place and after it was removed my eye hurt it got better better and now is worse. See and that's the thing too- when I get that pain behind my eye, it hurts to move it- (trig is V) and the abducens are the sixth cranial nerve, they control the lateral eye movement. I actually had to leave a wedding because I started getting such a headache, dizzy, nauseated- and it started with just the eye pain three hours prior. I think I'm going to request my file- wouldn't hurt to have it. You poor thing, I don't need to put any more on you either, it's just nice to be able to carry on a conversation who has the slightest idea what you're talking about. All three dr.'s have told me I need to talk to my surgeon about options- my GP said if this was an idiopathic case he could treat it until it went into remission; however, since it's getting worse he recommended me to go my original dr. So currently I am not on anything, I really don't want to go on any of those meds cause I feel like I'm going to be comatose and that's only a temp fix...Do what you can and I appreciate your help, but that's what I should be paying these people for. Is it ok to ask these type of questions like "Why couldn't it be ____?" Or is there really no definite diagnosis for this- just atypical facial pain? Thanks again- I feel like that's not enough though : )

[Demiguise]

You certainly have broadened your knowledge. My brain has many
more decades of use than yours so glad to read your interest
has gone to the deeper physioloy of your condition. Unfortunate
that I'm not a walking med-bk & instantly know you're asking,
but need to think longer abt this to help. Demyelinating happens
in migraines/ms/stress/trauma/alzheimers/etc. Myelin is FAT. It
insulates nerves/neurons/nuclei. 'DE' simply means break dwn of/
lessoned/destroyed/unprotected. This can be in nano degrees &
vary firing/msg'g. You ask some heavy stuff! The anesthesia-
dolorosa is the result of something that then becomes a problem
or condition. It has been referred to as 'phantom pain' after a
procedure. I don't think yours is phantom but may be AD acquired
from surgery. If you say, had micro-vascular decompression, then
later you may get AD. I think you are having 'neurogenic type
inflammation' that's causing this. Generally it's a primary
lesion. Only a copy from hospital (which you can get) re: the
procedure will tell you what was entry/cut/tied/cautered/etc.
Ea. place cut had nearby fibers. These aren't visibly seen, just
known. Ea. cut/nick will scar to seal. Scarring can build more
over time. Are you on Tegretol? Any help? Ganglionic fibers
were involved but I'll do some heavy thinking off/on & address
you more w/ other questions posted. Any chance going to file rm.
at hospital & asking for copies of surgeon/procedure reports.
They are poss. vaulted by now but sign release & give them a
week & they can usually retieve. Will think & get back.

[Pixiangelj]

Hi thank you so much- so you're saying that the nick is in the ganglion area? The tumor was resting on the pons and cerebellum (mentencephalon area)...so that's before the nerve enters Meckel's Cave, yeah? or nay- The doctor mentioned something about it being like phantom pain, is that the same as your talking about?? I hope you are doing well now, and how do you handle attacks when you have to live your life? Cause I have school now, and if it is severe enough, I can take a day and they understand...I have a feeling that will soon change once I start working. I have spoken to the doctors and they keep telling me to talk to my surgeon about options- My GP told me about the drugs, and I asked him so do I stay on this the rest of my life or what? And he says to me well you're fairly young, so that's not likely a long term solution. OK and I'm being paranoid because I was reading about anesthesia dolorosa and how if treated could make it worse, and Secondary TN can become worse if not treated. So what is actually happening to the nerve- is demyelination only in multiple sclerosis (not even worried I have it) or is that something that can result from tumor compression? Here's an interesting info even my dr. looked at me a lil surprised... I recently had my wisdom teeth out (all 4 impacted) and after the surgery the right side of my face swelled and bruised (normal); however, the left side looked as normal as any other day. There are like 4782 different questions here, sorry for inundating you with all this. Talk soon

[Demiguise]

Hello again kiddo. Last I posted you, you were on your way to
Vegas. Not long after that, you were deleted for posting email.
Big no-no + spammers look to health forums for their new lists.
Sorry you're not better & sound even more frustrated. Glad you
have a specialist/dx's/a name/more info. Sadly, you'll still be
confused because I have terms that would poss. explain but take
alot of time to get A to B. You're smart but not something I
learned instant. Atypical/Secondary Trigeminal Neuralgia sounds
like an obvious. I think you got that part. Too many nerves to
explain but you have 3 (Tri) that do ALOT. 1 is affecting eye &
another is affecting temple & stuff in between. After 2 yrs, I
agree, you may have had a nick during surgery to the main nerve
they worked on supplying the Tri & it could be perm-numb. There
is a third nerve w/ access fibers that msg. Only spec. would
know from clinical/tests/time. Trigeminal Neuropathy: permanent
or 'temporary' decrease in sensation within a ipsilateral
distribution. Ipsilateral has to do w/ consciousness of brain.
It is a sensory neuron, the 1 side w/ symptoms, & 'opposite'
of contralateral part of brain. Example: left side of brain is
recieving msg from rt side & causing response. That's how things
are working. That's why you're MD can't explain. Has MD talked
abt Bell's Palsy? Reason for why numb yet pain, not all the
area is damaged. Hence neuropathy 'poss. temporary' but unknown
to know. You're receiving pain through fibers w/ reflex. Did
Dr mention Botox or decompression? If willing to travel, there
are special clinics that have success or perhaps near you. The
injections can stop response done by the best neuro to fix eye
& temple. It's not permanent but drugs may not be helping you.
The numb is just as I said, a form or response of the brain
consciousness. You cannot control this. Trigger may be wind/
hair touch/apply makeup/stress/clinch teeth. It's individual.
Some eating disorders past/present can strain the temple nerves
& cause scarring. Doubt that's your issue but felt I should
say all possibles. I 'got' TN after severe surgeries & as you
recall, mine was do to the trauma of surgery. I was lucky. The
pain kept the neurons firing & woke up my paralysis to just go.
I still have residual pressure & a storm will trigger 3 days
of inflammation & then stop. I've read abt some getting a type
'electric current therapy' to stimulate & wake up nerves. I'll
post you if I find the research. At this point, frustration
is at surface so you need to keep humble for any answers. I
only know info you post. May be something else is there you are
not told. I do remember your history. I would still try to stay
positive even though you've reached that break-point. Stress
will make this trigger more frequent. Talk later.