I now have bilateral TN

I spoke on here last around last June when I first got TN 1 (the other website is down where I usually tell my troubles!). I have it in my jaw ( then it was on the left side); a few weeks ago it went to the right side, and my neurologist did say that can happen. I haven't chewed on my left side since last June, so now I don't chew at all - I puree all my food. And boy is it boring. I had lost 4 pounds from the pain before seeing my doctor and 4 more after.

On the other website there is a group for just bilateral TN people (consists of only 8 people) because it is so rare. I was wondering if anyone here has it, and if you have it in the jaw so that you cannot eat. If so, how are you eating and what are you eating?? I seem to have lost my appetite completely during the day, so I only eat dinner, but I eat a lot. Pureed chicken is my protein and I puree a lot of vegetables and a few times a week I have a sweet potato and I drink milk. I don't eat anything fattening even though I don't have that problem - I'm 5'7" and weigh 124. I've just always eaten healthy.

Tuesday I'm seeing a surgeon at the suggestion of my neurologist though I don't understand this. Because as soon as I told her it was now on both sides, the first thing out of her mouth was, "Well, you're no longer a candidate for surgery." I don't know why I didn't question her. You know how sometimes you leave a doctor's office and you say to yourself, "Why didn't I say something?, or "Why didn't I ask something?" I think it's because my doctor intimidates me. I don't like that.

I bet she's talking about Gamma Knife. He'll have to really explain that in detail, because I see some bad things on the forums - like bad side effects. And comments about all the radiation.

Well, this started out about eating with bilateral jaw TN. Does anyone have it and what do you eat day in and day out?

Thanks,

Barb

Barb, the bilatteral thing has been more frequent for me lately. And, since I only chewed on the non-pain side, it brings more challenges to my life. I had expected it eventually because the mri showed a vein on the nerve while the painful side showed nothing pn the nerve. MVD surgery proved a vessel on the painful side and the doc said another MVD would be possible if meds failed for the left side. Meds work currently, so II’m good. As far as food goes, I usually drink protisn shakes throgh the day and if pain is low, dinner may be more as hunger is apparent when I’m not hurting. If I am hurting, I could care less about eating. I found Costco has great price on coupon right now. Next step is getting a juicer that is like a blender in size and use. The difference in this juicer actually makes the pulp juice, so there is no waste and the cleanup doesn’t take an hour! Many prayers for your upcoming decisions on treatment for this pain. Each person is so different in presentation, and will require different intervention to bring relief. I encouage you to get a few opinions after your MRI. Many sugeons have PAs that are willing to counsel over the phone or email. Please keep us posted on your progress!

Sorry read about how you are suffering. There is a subgroup here for Bilateral,if you join they may be able to answer your questions. Also LyndaS has bought some wisdom to the discussion, good advice there!

In a site demographics study which we just completed, we found about 35 cases out of 1726 that were bilateral. That doesn't "eliminate" surgery as an option. Just makes it an expensive and lengthy process if you pursue MVD ($100K US per side!). RF Rhizotomy might be a better option for you if your symptoms are dominated by Type I TN. Think very carefully before you let anybody NEAR you with a Gamma Knife surgery. 50% of all GK patients have pain recurrence within three years.

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

Barby,
I’m bilateral Type II Atypical and was told I too am not a surgical candidate. My neurologist has me on 3,000 mgs of Neurontin/Gabapentin and my pain management doctor has me on Butrans (patch) for pain. For the most part everything is under control, but not as well as I would like. Some days are better than others. I’m just glad I didn’t have any surgeries or procedures done.

I highly recommend that you find a different neurologist. One that you feel comfortable with. Also, whenever you think of a question you wish you’d asked,write it down and keep it in you purse. Pull it out while you’re waiting for the doctor to see you in the exam room. Keep it out so you can refer to it.