Hello everyone… This is my first time addressing you all here. Let me start by saying I am a 32 year old female. Besides the random medical stuff I manage to get I’d say I’m otherwise healthy. This whole TN episode brought up questioning MS again and was terrible. So I’d say getting the MRI results not to be MS was comforting. But why is my neurologist mentioning MVD surgery so early? He did mention a loop of vessels hitting the nerve. But why tell me this over the phone. These pains have given me anxiety as it is. With tegretol it is a lot better. I was completely debilitated with pain for 4 days. Frequent episodes. Took three days to even realize there was trigger points in this crazy TN. And that was before diagnoses. Felt like a nightmare.
Anyway now with meds I have kind of the same attacks but in a wayyyy duller extreme. I find that what I get stressed out it comes on and then I swear I get anxiety thinking the bad pains are going to happen. It’s awful. I work at a hospital and I swear I work for some very insensitive humans there. One person rolled there eyes and asked how I got this. And did I even go to a neurologist? As if I could make something like this up? Little backround, I get sporadic joint attacks like synovitis. Swelling pain it sucks. I’ve have optic neuritis in one eye. Treatment for that sucked. Twice. And then fear of MS. I’ve had infections that point to auto immune disease but no one can figure what. Slightly high inflammation markers I’m told. So basically I just been dealing with a lot in the most positive ways I can.
When someone flat out is completely condescending and not understanding of the pain this TN can cause I was like blasted with a sense of loneliness and frustration. My neurologist told me I have “sh@t luck” and as optimistic as I am I am started to believe it to be true.
As for surgery it scares the day lights out of me. But when I weigh out the pains and the side effects of tegretol… Over a lifetime of never having it again? Surgery sounds kinda helpful. But why mentioning it so soon? Has anyone had a POSITIVE MVD surgery here?? I’m so sorry this is so long. I perhaps am using you all as my therapists?? Lol by the way my name is Krissie…
Cool! I like the idea of being a therapist, it makes me feel all important. ☺ Now, as your therapist I feel the need to say that you're really lucky that the nerves showed up on the MRI, so many of us don't. Kind of makes the surgery a no brainer.Anyway, what on Earth could be scarier than an MRI????
The surgery! LOL And the fact that after like 4 days each time tegretol is increases the pain starts returning. Neuro upped the dose again today but this time because I called him about the returning pain. This med makes me EXTREMELY nauseated and I HATE it but it dulls the pain. I didn’t know that sometimes it doesn’t show on MRI. Neuro told me there’s a loop of vessels doing his to me and immediately mentioned the need for surgery. Why is it some people on here are waiting years. Will that be me as well? My anxiety levels are like immeasurable at the moment. =\ thanks for my one and only reply so far lol. My personal therapist. Haha
Hi Krissie
There are many of us that have had a positive MVD experience, I myself being one of them. There is discussion group called Success Stories that might be good for you to read through.
Good luck to you,
Christine
Thank you soooo much!
Hi Krissie . . I had a successful MVD early (just 9 months into my first symptoms and diagnosis) and have lived the past 2 1/2 years now pain free and med free. I wrote an article that tells the story of my diagnosis, the roadblocks from doctors, the meds, and how I made my decision to have MVD surgery. I will share that with you here. Be sure to find a very seasoned neurosurgeon that specialized in TN. Here's my story link on my hubpages blog . . . http://hub.me/aiUjY
I has my MVD 7 months after my official diagnosis.
From reading the trigeminal neuralgia and face pain handbook "Striking Back! by George Weigel and Kenneth F Casey.
It says to have the operation sooner rather than later so that the nerves heal and don't get too damaged. You sound lucky that its been offered so soon.
I'd really like to hear back what Mg of Tegretol you're on. I'm just about to try it again the first time didn't go well. So were supposed to start off slowly this time. Its three years since my last try.
@mybell Thank you for replying. I went and read your story and very accurate and informative. I like how you were confidant in picking your surgeon and the lengths you went through to do so… That’s a scary part for me since I work for a hospital and I do not want surgeons from my hospital to do the surgery I would like a mighty professional with experience in just this to do it from the city.
Also how you were blown off. My primary Doctor (since fired by me, although he doesn’t know yet) told me after I told him I’d been diagnosed with TN tells me not to play contact sports and take a Tylenol or an Advil of it starts hurting. I was so in shock that I just stopped speaking altogether. Sometimes it would be nice just to share the agony for a millisecond to see a lil turd with a Napoleon complex cry for his momma to understand what this is like to endure. Smh
@Christine How are you since surgery. I know I went to your profile earlier and can’t remember all that you’ve been treated with and outcome sorry. What was it like the surgery. How was it coming out of surgery. Is it a big deal or like eh. Cuz I’m very scared and never had surgery before just endoscopy and apparently I was so nervous I fought the heck out of them and they had to over sedate me LOL.
@farmeress I am currently on 600mg tegretol since yesterday. My neuro said I am a prime candidate for the surgery. I don’t know what makes me so prime about it though. And by saying giving the nerves time to heal what do you mean by that. Is my nerve being damaged by the vessels hitting it?
And also a question for anyone just curious. Does TN ever cause pain in the ear as well. And my hearing seems to be clouded in and out. I am having some allergy issues so not sure if it’s that maybe? I’ve never had an ear infection before. My worst pains are at temple and above ear. Top of jaw and gum. And triggers aren’t really existent that I’m aware of anymore now with some on and off help from tegretol.
From what I've read in here and its only been a few weeks there are people with terrible ear pain.
How quickly can you order that book. I only got mine a couple of days ago but its highly recommended. The TN bible they say. And easy to understand.
My understanding is that yes it is getting damaged with the pulsating or whatever. They do say less than 7 years is best. And I'm only at three years.
I've been given 400mg tablets to start. So we're going to cut them in half or even down to a quarter to get started. I ended up in hospital last time. But I'm hoping that was the Gabapentin on top of the Tegretol.
@farmeress I’ve been on gabapentin before and it’s the worst drug ever. I was absolutely exhausted… I will never take that. And less than 7 years for the surgery? Omg! Taking this meds this many times a day is just so much as it is! This pain is going to last forever? I mean it’s been less than a month and I can’t fathom up to 7 years of this. The tegretol makes me very sick to my stomach and horrible short term memory that effects me at work sometimes. I never knew there was a such thing until this hit me. And now I feel so much compassion for anyone suffering with this for sheesh even longer than a day…
Hello, Yes some people are just IDIOTS!
It sounds like MS to me. The problem with MS here is no specific test to diagnos it. I Was diagnosed in 1992. In my experience it was basically process of elimination. I too have opticneuritis. My vision just sucks- period. a month ago I was diagnosed with TN., as a result of the MS. TN was way way way more painful!!o a dentist, endodontist ER twice, oral surgeon and finally back to the neurologist. I am now taking OXCARBAZEPINE and I am for the most part pain free. I am scared it is going to come back. I have read that it does not go away. I have a neurology appt today. We shall see what he says.
My best to you abd quit stressing. Stress is the worst thing you can do for your body. I once had a friend that preached to e"YOUr thoughts create your reality". I strongly beleive in this mantra. I refuse to give in to the MS. Actually I did not even think about it much until this damn TN showed up..
Allison
@Alydkat MS is what the neuro had thought and explained could be the cause because of history until results came back. He said I have a loop of vessels around my Trigeminal nerve causing the pains. So no mention of MS now. My follow up is the 16th and couldn’t come faster at this point.
I’m so sorry you are dealing with this along with MS…
Nanooo48:
It's been a month exactly , today, since I had my MVD surgery. As stressed out and scared as I was, I'm glad now I had it done. Been pain free from TN and even my scaring behind my right ear is doing really good. Honestly, it was really only a week of discomfort. I was on percs for maybe 2 days, then Tylenol Extra Strength was all I needed. the weirdest thing I had, was that I kept on hearing music when the house here was quiet. I could name the song and everything. Just could barely hear it. then a bit of an ear ache. But that was basically it. My doctor in Toronto,On is a known specialist in this field and did an amazing job. I go for a follow-up at the end of this month.
I still feel a little bit dizzy and get a headache once in awhile form moving too fast..thinking I'm better already:( lol
This was my FIRST time ever....being in a hospital for anything besides a visitor. Been in perfect health all my life.
You can do this. Be brave and think of the outcome..how happy you will be. It's been a month now and no issues at all:):)
Tim
Krissie - My first neurologist dropped me. His assistant said he isn't use to dealing with this and didn't want to have me as a patient anymore. Also, the first neurosurgeon I consulted with basically accused me of making things up. He said that the symptoms I was describing to him sounded like I looked them up on google and that if the meds side effects were making me too tired, I should drink more coffee. Then he started talking about Gamma Knife, steering me away from an MVD, and said he saw nothing suspicious on my MRI (I doubt he even looked at it). My third neurosurgeon (Dr. Ken Casey) clearly saw two compressions, spent an hour with me, and just blew me away with his knowledge and expertise.
Nanooo48 said:
@mybell Thank you for replying. I went and read your story and very accurate and informative. I like how you were confidant in picking your surgeon and the lengths you went through to do so.. That's a scary part for me since I work for a hospital and I do not want surgeons from my hospital to do the surgery I would like a mighty professional with experience in just this to do it from the city.
Also how you were blown off. My primary Doctor (since fired by me, although he doesn't know yet) told me after I told him I'd been diagnosed with TN tells me not to play contact sports and take a Tylenol or an Advil of it starts hurting. I was so in shock that I just stopped speaking altogether. Sometimes it would be nice just to share the agony for a millisecond to see a lil turd with a Napoleon complex cry for his momma to understand what this is like to endure. Smh
@Tim wow that is sooooo great to hear! How long was it from diagnosis until surgery of you don’t mind me asking? I would also love to hear how you’re coming along moving forward. I’m wondering how long it would take for me to get back to work. I’m so glad you are pain free. I am only on 600mg of tegretol right now. And again I’m already feeling it coming back. It sounds pathetic but I’m worried that my dr doesn’t work Friday’s and the weekend and what if it gets really bad again. I get so much anxiety when it starts coming back. But anyways I would like to know how long from diagnosis to surgery. I don’t know what I’m in for and its not like I have a surgeon picked yet.
@mybell I truly wonder why some people become doctors…