I have had many procedures done, 5 rhyzotomys on the left side of the face I think. Can't even keep track any more. So, my last procedure was July 11, 2013 and I have had extreme numbness in my cheeck, nose and upper lip/teeth. The other branches of the nerve didn't seem to work, pain is the same. However my issue is that the area that is extremely numb also hurts like hell! How does that work out? I did watch a webinar on this website a couple of days ago and he referred to Anesthesia Delorosa (?) that's the only time I've ever heard of this and from the description he gave it sounds EXACTLY like what I've got going on. So here I am with the regular TN and on to of that this extra horrific annoying draining pain. So my question is... anyone out there that is familiar with this or any advice to help subside the pain. Currently I am taking neurontin 2700mg a day, baclofen 40 mg day, percocet 20mg a day and god knows what else it changes frequently. I have 2 kids and a single parent and need to make things as best as possibly can be so any information would be helpful. Also, I appreciate learning about others out there with the same thing so I don't feel so isolated. Thanks!!
Hi Maggy July is quite recent so hopefully the numbness may fade a bit .
I have the same thing also from my last rhizotomy ,it is very difficult to explain and understand people say ,well if it is numb how can it hurt ?
My right cheek is numb my bottom gum line and half of my tongue ,when i am tired my cheek feels really heavy .
It must be so difficult for you taking care of your children ,mine are all grown up .
I agree the most annoying thing is to have this awful AD and still have TN !!!
There is an AD group on here that you can join .
I'm sorry i have not been very helpful; as far as drugs go the most helpful one I have found is Nortriptyline I take 20m plus 600m of pregablin .
I hope your numbness does fade a bit as time goes on .thinking of you ,sending love
well thanks for replying, honestly at this point I've given up on getting relief I will still follow up on all appointments and such but that is because perhaps at some point I'll run into the right person that has some good idea. For now it's nice to hear from others that understand. Trying to explain it to the unaffected is very difficult. Like you said if it's numb how can it hurt? Well I ask myself the same question. :) Anyway... when I wake up first it's a tad better so I really take advantage of that short period of time.
Hello Maggy,
I know exactly what you are going through!! My started about 5 months ago after a second Cyberknife treatment! Now my nerve is damaged and I am no longer producing tears in the TN eye side. The pain is awful and I do not wish this on anyone. And I thought just having TN was bad. It has added so many more issues. I am so sorry you are going through this and I hope yours subsides. At first my started with numbness around the corner of my mouth and chin but now is over the entire face, half of the scalp, tongue, eyeball. It started burning really bad a few months ago and feels like I have an elephant sitting on my side of my nose. I can no longer wear my glasses without having a flare up. I do use a compound cream that helps take the edge off. It only last about 30 mins. I can’t tell you how many times I apply a day but it does help some. You are not alone!!! I hope over times it gets better for you. I have contacted Dr. Casey to see if there is any other options for me. Keep in touch and hope you are having a good day!!!
Thanks for the reply, I have numbness/pain in inner cheek eyeball upper lip nose and upper teeth all on left side. They started me on oxycontin which helps a drop. I had a steroid injection a couple of days ago. Looking at a pain pump to be put in soon. Not sure what to do...
Maggy- Not sure I can provide any help but I remember my neurologist saying when I was having these weird incredible leg pains that I thought might be related to my MS. And she said no that she didn't think so BUT that nerves that are not receiving enough signals can create pain! So she prescribed a muscle relaxant for me. I know this is far out but I wonder if a muscle relaxant could do any good. It is weird to think that when your nerves don't receive signals they can start creating pain. I am not even sure how this works as you would think relaxed muscles would create even less signals. Don't give up! I think with this TN condition we are going to have to be super creative both mentally, physically and spiritually. Also the pain could be coming from several different underlying causes. So it would be like peeling an onion. Your condition might need several solutions. Don't give up and remember some of these medications take time to build up. Oh I sure hope you can get some relief! Sending you good thoughts. Tina