Cat,
Great news that your pain free. I'm somewhat distracted here so I've not been posting that much. Anyway, things can only get better from where you were. I hope you continue to recover and be free of the beast.

Cat change your mood hun! You shouldn't be sad anymore!



Here's to more pain free days in your future I hope!

OK I took changed my mood to 'no mood' because there isn't one for 'disappointed.

I don't think the MVD worked. Not 100% at least.

Atypical TN symptoms gone: (the doctor warned me that I was an extremely 'atypical' case, so much so that he felt that more than one thing could be causing the pain).
Constant burning in the top of my palate on LH side
Burning at the back of my tongue on the LH side
Severe "axe handle" out of my jaw

Symptoms NOT gone, and flaring up lately:
All the teeth in the top left side of my jaw feel like they need root canals (still!) inspite of them all having more than one root canal procedure. New crowns, caps, plus other surgeries above the gum line (where they cut off the points of the roots..)
Numbness in my face and trigger points still hypersensitive

New symptom:
Increased numbness in the side of my face.

It was predicted, pre-op, that my face pain may be caused by 2 things:
1. A compressed nerve at the brain stem end.
2. Permanent damage to nerve endings at the front of my face in the surgical site.

So I think we got #1 covered. but #2 is still quite irritated. I was hoping by now (2 wks + 2 days post op) that this would have settled down, but no such luck.

I am also experiencing a lot of vertigo and balance problems. Partly because I have no balance nerve on the RH side. There is a large hyper-sensitive area of my scalp (approx the size of a palm print) from the surgery site to the crown of my head. And lots of neck soreness. I expect all of THESE will settle down.

Was mostly hoping that the MVD would be the END of things. Doesn't look like it. But I am very open to be proven wrong.........

CAT

I do hope you continue to heal. The body can be truly remarkable about managing pain (for example). I'm keeping hope that you'll make it through this Cat and be pain free

Thank you for posting this. It is so difficult to find information about Atypical TN and possible options for relief. I am truly praying and wishing you a speedy recovery and solution for your pain.

I have also been going through the trials and tribulations of diagnosing and treating ATypical TN. It is so frustrating and I'm thinking about the MVD surgery option. The medicine cocktail is not working for me and I want my life back!!!

Thank you again for posting and I'm praying for you.
Tara

Thank you Tara. I share your frustration. Even when I MET with the neurosurgeon, all of a sudden the 'rules' and 'outcomes' changed because my situation was considered so 'atypical'. He even went so far as to say to me "I'm not even 100% positive this pain originates solely from TN".

As far as the medicine cocktail was concerned, that was very low on my 'want to do' list. And now that we have a partial success from the MVD, it looks like I might need to still medicate the nerve damage at the front of my teeth from the oral surgeries. I'm not looking forward to that, but apparently is might be more manageable than the pain from the nerve root. At least the BIG monster is gone, and I no longer have the ax in my face every time my heartbeat goes up the slightest (ie: the artery compressing my trigeminal nerve was flaring up the TN every time my heartbeat went up).

I'm also really pleased that the hypersensitivity to cold air and cold foods has settled down. GIMME THAT ICE CREAM!

I guess more than anything I wanted a TOTAL FIX of this problem. That hasn't happened. But maybe (and I truly hope so) the pain I am left with is more easily managed.

My suggestion to you would be to be very assertive with the neurologists and neurosurgeons: keep pushing for answers, and try and get the very BEST surgeon you can, should you go the MVD route. Don't settle for someone who does a dozen a year, but someone who does them all the time.

Best of luck!

Cat

UPDATE:
WOOHOOOO!!!!!!!!!

I have now had 3+ days of pain no higher than a 3. YAY YAY YAY I think it's finally working!

It is 24 days post-op and I was starting to give up on a total FIX.

The pain in the top 6 teeth on the LH side has now settled down. When it does flare up, it's not monstrous. But for the most part, I've been at a 3 or 4 tops since Tuesday morning. There was one night where they kind of started screaming, but two Tylenol#3s settled it down.

YAY

CAT

I'm so happy for you - and thankful to actually hear some good news regarding this curse. Did you celebrate Valentine's day with that bowl of ice cream?!!

NO ICE CREAM
My husband and I spent the night in the ER investigating a possible CSF leak. Turned out to just be a fluid buildup underneath my incision.

So no dinner, no wine, no flowers. BUT, we each had a Mars Bar from the vending machine in the emerg waiting room!

hmmm. that reminds me. I need to change my mood!!!

CAT

Well, I don't know what a CFS leak is, but I'm glad it turned out to be the other instead. Sorry to hear you had to spend the night in the ER, but aren't you glad you have a loving husband to hold your hand and be there with you through it all. I hate to think there are some out there suffering alone.

BTW - I'm not preaching, I'm sure you realize all that.

Hope you have a good day, and a better week ahead. I'll be checking on you.

Rhonda