Every things failed

I am running out of options. I am suffering so much and feel like I’m out of options. I know I don’t want to live like this. Anyone have any suggestions

Hi Deanna,
Have you looked into a PNS implant ?
http://www.ncbi.nlm.nih.gov/pubmed/22270735
One our LwTN members Christine had this done and continues to be med and pain free…
Sorry you’re suffering so much, I know it well, and live it . I’m currently giving Botox a go ( 2nd treatment is in March) after that I’m just not sure…I too have tried just about everything.
Positive thoughts and (( hugs )) Mimi

deanna,

i don't know how to live with this much suffering either.

like you and mimi, i've tried almost everything too.

there's no two ways about it: it's living hell when your TN pain is constant and unresponsive to treatment.

if you haven't considered it before, PNS may be worth looking into. it can be effective for people with type 2/atypical pain who otherwise have so few options. i see from your profile you live in the mid-west. FYI, there's an excellent NS at Univ of Illinois at chicago, (Konstantin Slavin MD). he's considered one of the best in the nation in both TN and neuromodulation.

mimi i so hope your next botox treatment helps!

if anyone else has suggestions when MVD, meds, acupuncture, nerve blocks have failed please share.

I have type 1 and 2 and I have a PNS and it is wonderful for pain in my eye but, the wires dont reach far enough to cover the pain in my nose and teeth so..I am still on a ton of meds. I consider the PNS successful because the eye pain was unbearable!! I am having a horrible flare in my nose and teeth pain now because of the cold weather..I have been cuddled up by my heater for a week all drugged up. I hate it!! I am set up to get a sphenopalatine nerve block in a couple weeks..I am praying for some relief!!

I wrote on your wall!

I have type 2 pain mainly in nose, eye and teeth. The most bothersome is in the nasal passage. I had consulted with 2 respected PNS surgeons who were very willing to try PNS on me. But then I consulted with very specialized experts on PNS in the face and they said that I definitely should not try the PNS because they never had a successful PNS for a patient with the type of pain and location of pain that I have. Having had a traumatically unsuccessful MVD, I decided not to roll the dice on the PNS.

Lisa26 said:

I have type 1 and 2 and I have a PNS and it is wonderful for pain in my eye but, the wires dont reach far enough to cover the pain in my nose and teeth so..I am still on a ton of meds. I consider the PNS successful because the eye pain was unbearable!! I am having a horrible flare in my nose and teeth pain now because of the cold weather..I have been cuddled up by my heater for a week all drugged up. I hate it!! I am set up to get a sphenopalatine nerve block in a couple weeks..I am praying for some relief!!

This is just my experience. I have pain in all three branches, affecting my scalp,eye, cheek, nose, and teeth. My PNS addresses all these areas. I did need to get reprogrammed once to be sure I was getting full coverage.
Christine

Please don't give up...you are not alone. Please listen to these suggestions: 1. activate your support system, 2 notify your Doctor and or go to urgent care to get short term pain control or management ,and 3 start utilizing hot and cold packs. These suggestion will help you out until you get a more long term solution...As always if you feel like hurting yourself in any way present at your nearest ER room or call 911

~E