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!