A CSF Leak is when the cerebral spinal fluid leaks out, either via the incision or sometimes through a persons nose...it's really serious, leaves a person vulnerable to infection and meningitis. It is one of the things they watch for after an MVD. But today I'm not "dripping" at all so everything is good.

AND, I think I can now say that I was wrong on Feb 5th when I said the surgery had not been successful. There has been a huge change/improvement in the past 10 days. I am now calling it "a success"!!!!

Thank you for keeping an eye out for me. This has been a really rough go. But tomorrow is my 4 week anniversary of the surgery and I'm now definitely out of the woods.

CAT

So it's now the 19th and I am happy to report that things are still going fine.

The pain in my teeth/jaw has settled down to somewhere between a 0 and a 3...usually on the low side. There is also numbness in the same area, which is always there.

Incision is no longer leaking.
Vertigo is getting to be less of a problem. I don't feel ill when lying down either.
Just mild headaches upon awakening each morning.
Still have sore/stiff neck but it is slowly improving.
Brain function is slow but steadily improving.

All in all, I think we're good!
CAT

I'm very happy for you....and a little jealous. Today was the second worst, if not worst day (pain-wise) that I've had with this TN in the 18 months I've had it. Obviously the Trileptal is not working at all. My Neurologist apptmt on 3/19 can't come soon enough.

Keep the good news coming! :D

Thank you Creekman. I find it helps to document even the smallest of improvements...helps me see that I'm moving in the right direction.

I am sorry to hear your pain is at an all-time high. I remember saying to my neurosurgeon when he asked me about my pain levels: "What I call a 4 on a scale of 1 to 10 today, was an 8 only 3 months ago..." In other words, the worst was getting worse......It DID help, however, to make up a pain log. I track my pain at 9 a.m., noon, 6 pm and 10 p.m. It helped me remain objective especially on those really BAD days.

Is your appt on March 19th the first one with this Neurologist? If not, is it possible to ask to be put on a cancellation list? It's free to ask.... :wink:

Hang in there: things CAN and DO get better. You just have to be really persistent.

CAT

Yes, this will be my first apptmt. We currently do not have a neurologist in our area and he is coming from Erie to set up an office here next month. I suppose I could try to get in to see him in Erie, but I doubt it would be much, if any, earlier than 3/19....plus it's 135 miles to Erie....plus it's still winter....plus I'm a glutton for pain....haha.

Yeah, I get it. I live about 2 hrs away from my neurosurgeon's office. I managed to get a neurologist within an hour from home.

Winter here too (Southern Ontario and we're getting a snow dump tonight).

CAT

Hello Everyone.

Hope you are all well.

It will be 6 weeks on Tuesday (March 3) since my MVD.

Everything is GREAT.

Today I went out for a hike with my husband alongside the river in front of our house. It was cold (-8degC) but I bundled up and did just fine.

Things I discovered today:
COLD AIR ON MY FACE DOESN'T TRIGGER PAIN!!! woohoooo
My balance function is once again working
Increased heart rate DOESN'T TRIGGER PAIN!!! woohoooo

I THINK THE MVD WORKED!

yay yay yay

Happy Sunday!

CAT

So happy for you
 

Cat, I am so happy to hear your good news. That is great. I know it will help someone else on here to read about a positive outcome for a change.

So there is hope after all.

Rhonda

Small Update:
I saw my neurologist today: NO MORE MEDS except for tylenol#3s for the numbness in my jaw as needed.
NO MORE TEGRATOL OR LYRICA!!!
woohoooooooooooooo

CAT

That's so awesome NanaCat!!! :hug: Thank you for all the updates! :)

I'm really glad this all worked out for you. I know how you expressed originally how horrible you felt and I felt so sad for you too.

Here's to more pain free days!

And more:
I saw the Neurosurgeon yesterday. All is good. We're just monitoring some incision issues right now but everything else is great.

No follow up scheduled! (unless things change, of course!)
woohoo!

now....let's start getting that ole' life back!

CAT

I have read 100s of posts in several forums regarding MVD ops. Your post stating your doc severed the nerve is the first I've read as using that as part of the surgical plan. I'm sure you 'now' have learned that all vessels are padded and the nerve is isolated from contact from any of the vessels. I'm very sorry to hear you've had a bad experience.

I'm scheduled to have an MVD op in 7 days with a surgeon who has performed several hundred MVD ops. When I asked him about severing the nerve he said that is the last thing he wanted to do as it would most likely cause more pain. Like you said, everyone should seek a tried and true expert in TN ops and ask good questions about the after effects.

Wishing you pain-free days!

I just want to clarify that this post is referring to someone else (Jess78) who responded to mine. NO NERVE WAS SEVERED in my MVD. My neurosurgeon said he would never sever a nerve due to the permanent repurcussions of doing so.
CAT

And just for an update: I'm doing good. Some residual nerve damage at the front of my jaw from the dental surgeries. They are manageable. The MONSTER is GONE!!!

:yahoo: I so much Love reading .." .The MONSTER IS GONE"
AMEN .
PEACE
BMW

me too!! :D:D:D:D:D:D:D:D

Thank you Tim.

How great to hear that you haven't had pain since May 2006 (is that the date of your MVD?). Yes, Miracles DO HAPPEN. We have to set aside our fears sometimes in order to achieve them, though.

My Neurosurgeon said that the MVD is one of the best forms of treatment for TN. Yet his concern is that so many wait too long to go that route: they try every other treatment available first, because of the fear of surgery near the brain....And the odds of success in the MVD diminish after about the 4 year point...so many people are suffering and yet there IS a fix.

I am amazed at my life post-MVD. It's BACK.

WOO HOOOO

Cat

tHAT'S GREAT!

They say MVD's are most successful if done within 4 to 7 years of onset of TN. After that, the success rates go down. My Neuro says "the sooner the better" and not just because its a better chance of success, but because the patient can get their life back".
So glad to hear you got "No Pain, No Pain"!! woo hoo!
CAT

WOO HOOO!

Happy Anniversary to Me!!

It is 7 months tomorrow since my MVD and I am thrilled to report that the TN is gone. I still get occasional pain in my teeth that is related to my bruxism/grinding at night but a good mouth guard has made all the difference in the world.

Just thought I'd put out an update.

:)

CAT

Love this update Cat.
woo hooo is right!
:D :highfive:
PEACE
BMW